Long-Term Care Administration and Management: Effective Practices and Quality Programs in Eldercare [1 ed.] 9780826195685, 9780826195678

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Long-Term Care Administration and Management

Darlene Yee-Melichar, EdD, CHES, is professor of gerontology in the College of Health and Social Sciences at San Francisco State ­University (SF State). She also serves as coordinator of long-term care administration and director of the Health, Mobility and Safety Lab. She received her BA in biology from Barnard College, Columbia University; an MS in gerontology from the College of New Rochelle; and an MS and EdD in health education with a specialization in gerontology from Teachers College, Columbia University. Her research interests in healthy aging, long-term care administration, and minority women’s health are reflected in four books; 107 journal articles, book chapters, book reviews, and technical reports; and numerous community and professional presentations. She is the coauthor of Assisted Living Administration and Management: Effective ­Practices and Model Programs in Elder Care (Springer Publishing Company, 2011), which is a reference book used by the American College of Health Care Administrators for its Assisted Living Certification Exam. She is the vice president of the board of directors for the California Advocates for Nursing Home Reform; president of SF State’s chapter of Sigma Xi, the Scientific Research Society; and serves on the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services, Advisory Panel for Outreach and Education. She is a charter fellow of the Association for Gerontology in Higher Education; a fellow of the American Alliance for Health, Physical Education, Recreation and Dance’s (AAHPERD) Research Consortium; and a fellow of the Gerontological Society of America. Cristina M. Flores, PhD, RN, has been a registered nurse for 23 years. Her nursing practice has included many aspects of the continuum of care, such as home health care, assisted living communities, and the acute care hospital. She holds an MA in gerontology from San Francisco State University (SF State) and a PhD in nursing health policy from the University of California, San Francisco (UCSF). At present, she practices nursing as the vice president of operations and program development for AgeSong in California. She conducts research relative to quality of care and quality of life in long-term care for the Institute on Aging in San Francisco and at UCSF. She has taught numerous courses in the gerontology program at SF State. She has published several journal articles and book chapters, and is the coauthor of Assisted Living Administration and Management: Effective Practices and Model Programs in Elder Care (Springer Publishing Company, 2011), which has been highly rated as a Doody’s “core title” and “essential purchase.” Edwin P. Cabigao, PhD, RN, is the chief nursing officer for the Jewish Home in San Francisco, where he manages the strategic, operational, regulatory, and financial performance of the organization’s nursing services. Jewish Home is a licensed, skilled nursing facility (430+ beds) specializing in programs, services, and care for older adults. He holds a BS in nursing and an MA in gerontology with an academic emphasis on long-term care administration, both from San Francisco State University (SF State), as well as a PhD in health care administration from Touro International University. He is a contributing author of Aging in Contemporary Society: Translating Research Into Practice (2005), and has written and implemented numerous district-wide educational programs on survey management, quality improvement, care-transition plans, and nursing home policies and procedures.

Long-Term Care Administration and Management:

Effective Practices and Quality Programs in Eldercare Darlene Yee-Melichar, EdD, CHES Cristina M. Flores, PhD, RN Edwin P. Cabigao, PhD, RN Editors

Copyright © 2014 Springer Publishing Company, LLC All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of Springer Publishing Company, LLC, or authorization through payment of the appropriate fees to the Copyright Clearance Center, Inc., 222 Rosewood Drive, Danvers, MA 01923, 978–750-8400, fax 978–646-8600, info@ copyright.com or on the Web at www.copyright.com. Springer Publishing Company, LLC 11 West 42nd Street New York, NY 10036 www.springerpub.com Acquisitions Editor: Sheri W. Sussman Production Editor: Shelby Peak Composition: Newgen Imaging ISBN: 978-0-8261-9567-8 e-book ISBN: 978-0-8261-9571-5 14 15 16 17/ 5 4 3 2 1 The author and the publisher of this Work have made every effort to use sources believed to be reliable to provide information that is accurate and compatible with the standards generally accepted at the time of publication. The author and publisher shall not be liable for any special, consequential, or exemplary damages resulting, in whole or in part, from the readers’ use of, or reliance on, the information contained in this book. The publisher has no responsibility for the persistence or accuracy of URLs for external or third-party Internet websites referred to in this publication and does not guarantee that any content on such websites is, or will remain, accurate or appropriate. Library of Congress Cataloging-in-Publication Data Long-term care administration and management : effective practices and quality programs in eldercare / Darlene Yee-Melichar, Cristina M. Flores, Edwin P. Cabigao, editors. p. ; cm. Includes bibliographical references and index. ISBN 978-0-8261-9567-8 — ISBN 978-0-8261-9571-5 (e-book) I. Yee-Melichar, Darlene, editor of compilation. II. Flores, Cristina M., editor of compilation. III. Cabigao, Edwin P., editor of compilation. [DNLM: 1. Long-Term Care—organization & administration—United States. 2. Aged—United States. 3. Assisted Living Facilities—organization & administration—United States. 4. Homes for the Aged—organization & administration—United States. 5. Nursing Homes—organization & administration—United States. WT 31] RC451.4.N87 362.2’3—dc23 2013040350 Special discounts on bulk quantities of our books are available to corporations, professional associations, pharmaceutical companies, health care organizations, and other qualifying groups. If you are interested in a custom book, including chapters from more than one of our titles, we can provide that service as well. For details, please contact: Special Sales Department, Springer Publishing Company, LLC 11 West 42nd Street, 15th Floor, New York, NY 10036–8002 Phone: 877-687-7476 or 212-431-4370; Fax: 212-941-7842 E-mail: [email protected] Printed in the United States of America by McNaughton & Gunn.

Dedicated to the students and practitioners in the health and human services, who are committed to enhancing the quality of care and quality of life of older adults residing in long-term care communities. With love and gratitude to our families and friends for their continuing encouragement, patience, and support—we could not have done this without you.

Contents

Contributors   ix Foreword by Joanne Handy, RN, MS   xi Preface   xiii Acknowledgments   xix

I. Options In Long-Term Care

1.  Long-Term Care at Home   3 Doron D. Goldman, Regina Khurin, Debora W. Tingley, and Darlene Yee-Melichar 2.  Community-Based Programs and Services   27 David Werdegar, Cristina M. Flores, and Amanda Caldwell 3.  Naturally Occurring Retirement Communities   53 Nichole Kain, Courtney J. Donovan, and Darlene Yee-Melichar 4.  Assisted Living Communities   69 Cristina M. Flores, Robert Newcomer, and Mauro Hernandez 5.  Continuing Care Retirement Communities   91 John W. Milford, Diane L. Griffeath, and Darlene Yee-Melichar 6.  The Skilled Nursing Facility   105 Edwin P. Cabigao and Christopher Cherney II. Current Issues In Long-Term Care

7.  Enhancing and Managing Client Care   125 Cristina M. Flores, Jay S. Luxenberg, and David Werdegar

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viii  Contents

  8.  Preventing Elder Abuse and Neglect   145 Erika Falk, Cristina M. Flores, and Prescott Cole   9.  Promoting Staff Retention and Satisfaction   163 Edwin P. Cabigao and David Hahklotubbe 10.  Marketing and Census Development   185 Kyle Cotter Fredrickson and Candiece N. Milford 11.  Financing and Reimbursement   203 Mauro Hernandez 12.  Anticipating and Managing Litigation and Arbitration in Long-Term Care   221 Christopher Cherney and Denise A. Platt III. Trends In Long-Term Care

13.  Human Diversity and Eldercare   239 Joseph F. Melichar and Darlene Yee-Melichar 14.  Alzheimer’s Disease   261 Kimberly Weber, Linda R. Barley, Caroline Alcantara, and Darlene Yee-Melichar 15.  Palliative Care   277 Nancy Dudley, BJ Miller, Nate Hinerman, and Cristina M. Flores 16.  Technological Tools in Long-Term Care: The State of the Art and Practical Considerations for Adopters   301 David M. Kutzik and David C. Burdick 17.  Care Transitions   327 Nancy Dudley and Edwin P. Cabigao 18.  Nursing Home Culture Change   341 Kyle Cotter Frederickson

Index   359

CONTRIBUTORS

Courtney J. Donovan, PhD Assistant Professor of Geography and Environment San Francisco State University San Francisco, California

Caroline Alcantara, MA Gerontology Program San Francisco State University San Francisco, California Linda R. Barley, EdD, CHES Professor of Health, Physical Education, Gerontological Studies and Services York College, City University of New York Jamaica, New York

Nancy Dudley, MA, MSN, RN PhD Candidate, Nursing Health Policy Program Department of Social and Behavioral Sciences University of California, San Francisco San Francisco, California

David C. Burdick, PhD Professor of Psychology Richard Stockton College of New Jersey Galloway, New Jersey

Erika Falk, PsyD Institute on Aging San Francisco, California

Edwin P. Cabigao, PhD, RN Chief Nursing Officer Jewish Home San Francisco, California

Cristina M. Flores, PhD, RN AgeSong San Francisco, California Kyle Cotter Frederickson, MA Assistant Executive Director Atria Senior Living Walnut Creek, California

Amanda Caldwell, MA Institute on Aging San Francisco, California Christopher Cherney, MA, NHA Nursing Home Administrator Berkeley, California

Doron D. Goldman, JD, MPhil Independent Consultant Northampton, Massachusetts

Prescott Cole, JD California Advocates for Nursing Home Reform San Francisco, California

Diane L. Griffeath, MA, NHA Dominican University of California San Rafael, California

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x  CONTRIBUTORS

David Hahklotubbe, MA Executive Director Vintage Senior Living Sonoma, California Joanne Handy, RN, MS President and CEO Leading Age California Sacramento, California Mauro Hernandez, PhD CEO Concepts in Community Living Clackamas, Oregon Nate Hinerman, PhD Gerontology Program San Francisco State University San Francisco, California Nichole Kain, MA, OTR/L Dominican University of California San Rafael, California Regina Khurin, MA Director ChoiceCare, Inc. San Francisco, California David M. Kutzik, PhD Professor of Sociology Drexel University Philadelphia, Pennsylvania Jay S. Luxenberg, MD Chief Medical Officer On Lok Lifeways San Francisco, California Joseph F. Melichar, PhD President Adaptive Systems Corporation San Mateo, California Candiece N. Milford, MA Lead Director of Marketing Northern California Presbyterian Homes and Services San Francisco, California

John W. Milford, MHA, MDiv, NHA Consultant for Retirement Living San Francisco, California BJ Miller, MD Executive Director/Assistant Professor of Medicine Zen Hospice Project/University of California, San Francisco San Francisco, California Robert Newcomer, PhD Professor of Medical Sociology Department of Social and Behavioral Sciences University of California, San Francisco San Francisco, California Denise A. Platt, RN, JD Registered Nurse/Attorney at Law Law Offices of Denise A. Platt, APC Santa Barbara, California Debora W. Tingley, MA, PhD Gerontology Program San Francisco State University San Francisco, California Kimberly Weber, MPA Alzheimer’s Association Northern California Chapter Oakland, California David Werdegar, MD President and CEO Emeritus Institute on Aging San Francisco, California Darlene Yee-Melichar, EdD, CHES Professor of Gerontology Coordinator of Long-Term Care Administration College of Health and Social Sciences San Francisco State University San Francisco, California

FOREWORD

Long-term care, formerly interpreted only as nursing home care, now embodies an array of residential-, home-, and community-based services designed to maximize an individual’s function and independence. The term long-term services and supports (LTSS) is increasingly being used to describe the wide variety of available options. Professionals interested in aging and long-term care now have opportunities to practice in varied settings and roles. To function effectively, professionals need to understand the entire continuum and the unique role their chosen setting plays. Gone are the days when “silo-knowledge” was sufficient. The future of care now focuses on integration among settings and professionals in different sites of care. More important for elders, it focuses on the integration of medical and social supports over long periods of time to achieve desired outcomes. As our country ages and health care shifts increasingly to management of chronic versus acute illness, the field of long-term care increases in visibility and value. Seventy percent of people who reach the age of 65 will need some form of long-term services and supports in the future. They are likely to spend significantly more time interacting with the long-term care system than with the acute and medical systems. Yet, many elders and health care professionals are unfamiliar with the current options and the evolution of services. Long-term care is ripe for new and inspired leadership. The field needs the best and brightest practitioners, managers, and leaders to improve current services and chart a path of innovation to meet future elder needs and desires. Tomorrow’s leadership must be fueled by a deep commitment to elders combined with the intellectual curiosity to question tradition and experiment with new ideas. Aging boomers expect a strong voice in determining the services they want and how they are provided, challenging historic paternalistic cultures. The desire to age in one’s home will stimulate residential providers to expand beyond their campuses into more home-delivered services.

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xii  FOREWORD

This book skillfully reflects all of these trends and provides a solid framework to prepare future leaders in long-term care. Students preparing for management and administrative careers in aging will find this to be a comprehensive resource on contemporary long-term care services. Current leaders in the field and their management teams will benefit from learning the latest developments. It gives readers a multidisciplinary perspective on service settings, enhanced by the varied professional backgrounds of the authors. This book makes an important contribution to advance leadership in aging services. Joanne Handy, RN, MS President and CEO Leading Age California Sacramento, California

PREFACE

Long-term care (LTC) involves a continuum of care required to meet the differential needs of older adults; LTC is currently in a period of expansion and innovation. Long-Term Care Administration and Management: Effective Practices and Quality Programs in Eldercare contains essential information for students new to the field as well as innovative approaches for professionals looking to enhance their competencies and skills. This comprehensive and informative resource provides multifaceted insights to address the ever-changing world of the LTC industry, and contains effective practices and quality programs in eldercare. The authors provide the necessary tools and tips to maximize the quality of care and quality of life for older adults living in LTC communities. This key reference for LTC administrators and practitioners as well as undergraduate and graduate students contains the most practical guidelines for operating LTC communities. This multidisciplinary book covers the most crucial aspects of management, including federal and/or state regulations overseeing the operation of LTC facilities. It offers advice on care at home, naturally occurring retirement communities, and continuing-care retirement communities; client care, staff retention, preventing elder abuse and neglect, and anticipating and managing litigation and arbitration in LTC; aging and human diversity, Alzheimer’s disease, palliative care, and care transitions; and much more. This book consists of 3 parts and 18 chapters. Each chapter includes helpful pedagogical features such as learning objectives, an introduction, case studies, effective practices, and/or model programs in eldercare that are useful in the administration of LTC communities, as well as a chapter summary and references. Figures and/or tables are used when warranted. Part I focuses on options in LTC and includes six chapters. Chapter 1 introduces the reader to a variety of LTC options that can be received in one’s own home, including family and informal caregiving, home care, home health care, and hospice care. Regulatory and financial considerations relative to care at home are discussed. Chapter 2 describes the evolution of community-based LTC programs and services. The various settings for care availability in the community are summarized, including independent living, senior centers, adult day care, case management, Programs of All-Inclusive Care for the Elderly (PACE), and options for senior housing that include care services outside an LTC facility. Examples of model programs illustrate

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xiv  PREFACE

the benefits of community-based services. Regulatory and financial considerations are discussed. Chapter 3 familiarizes the reader with the naturally occurring retirement community (NORC), a community or neighborhood where residents remain for years and age as neighbors. It describes how NORCs develop and access services to aid those needing assistance. Successes and challenges of NORC development are considered and case studies of model NORCs are discussed. Chapter 4 introduces the reader to the concept and philosophy of licensed assisted living communities. A historical background and overview of the industry are included. The emergence and evolution of assisted living, licensing and regulatory considerations, and public policy and current funding streams are discussed. Chapter  5 focuses on the continuing care retirement community (CCRC), a type of LTC that offers several levels of health care at one location. The CCRC model is described and includes a discussion of the oversight and regulatory issues associated with CCRCs. The essential issues of CCRC contracts, cost, and affordability are highlighted. Chapter 6 details the factors that define U.S. nursing home operations at the start of the 21st century. The authors describe how state and federal regulations, as well as revenue streams, drive daily nursing home operations. Clinical operational risks—including pressure ulcers, falls with injury, resident wandering, and dehydration/weight loss—are explored, as well as strategies for mitigating these ever-present risks. Direct-care staffing is analyzed from multiple angles: maintaining a stable workforce, educating staff, financing worker wages and benefits, and staffing a facility daily to meet evolving resident needs. U.S. nursing home resident subpopulations are profiled, with an emphasis on emerging diagnoses, including morbid obesity, chronic depression, and behavioral disturbances. Part II focuses on current issues in LTC, and includes six chapters. Many important aspects of client care across the LTC continuum are examined in Chapter 7. An overview of the physical and psychological aspects of aging sets the background for a discussion of important issues surrounding client care, including promoting health and wellness, chronic disease management, and enhancing quality of care and quality of life. Chapter 8 provides an overview of needs, challenges, and opportunities in preventing elder and dependent adult abuse, neglect, and exploitation. Case examples highlight successful models for increasing identification, collaboration, and available remedies when abuse is suspected. Special areas of focus include understanding mandated reporting obligations as well as the effects of abuse and neglect. Chapter  9 highlights the critical importance of an adequate nursing staff in providing quality patient care. The crisis in nursing staff shortages due to workforce dynamics, insufficient geriatric emphasis in nurses’ training/curriculum, and issues contributing to nurses’ reluctance to work across the LTC continuum are analyzed. Adding balance to this important chapter is the need to evaluate how the LTC industry recruits, retains, and values nurses to promote staff retention and satisfaction. Several practical strategies and “best practice” staff retention programs are profiled to assist LTC facilities in creating and sustaining positive work environments, thus driving both staff and resident satisfaction. This chapter challenges and inspires leaders of LTC environments to achieve optimum results and become an employer of choice. Chapter  10 considers the success and sustainability of LTC communities based on a facility’s census and the number of people residing and/or using services that generate revenue. The importance of an effective marketing strategy to drive the census by creating awareness among those who need the services, as

PREFACE  xv 

well as those who make referrals, is discussed. An in-depth understanding of the business “ecosystem” provides valuable information for any marketing plan. The ecosystem is comprised of older adults, their families, competitors, suppliers, vendors, referral sources, government agencies, funders, and local experts. This chapter focuses on how to identify and map out your business “ecosystem”; developing an effective marketing plan; defining and using an effective strengths–weaknesses– opportunities–threats (SWOT) analysis; market segmentation and target population analysis; building and understanding your customer profile (demographic and psychographic information); understanding and developing professional relationships; staffing needs and characteristics of a good marketer; and forecasting future trends in LTC, including a discussion of how the impending baby boom generation impacts business development in the LTC arena. Chapter 11 describes how consumers pay for LTC services across the continuum of care, using both public and private resources. It provides an overview of public LTC financing options while identifying state and federal policy developments that have transformed the industry during the past several decades. Population trends and private sector developments are identified that have fueled the growth of newer home- and community-based service options. The chapter highlights state-level policy differences that explain wide variations in service eligibility, reimbursement, and expenditures. More recent innovations in LTC financing are described that have been adopted in order to curb public spending, increase access to community-based options, and maximize consumer direction. These include state-level experiments with Medicaid-managed LTC and selected provisions of the Patient Protection and Affordable Care Act. Chapter 12 illustrates strategies long-term providers can employ in anticipation of negligence and elder abuse lawsuits, as well as demands for arbitration. The authors emphasize the importance of consistent and experienced management, robust provider communication with clients and their families, and accurate documentation as primary tools for mitigating anticipated litigation/arbitration in LTC settings. The authors suggest protocols that long-term providers can implement before negative client outcomes occur so as to mitigate the risks associated with those outcomes, which can include unexpected death, falls with injury, client wandering, and the development of avoidable pressure ulcers. Recent lawsuits involving LTC providers are analyzed in depth to give readers a thorough, step-by-step review of litigation/arbitration proceedings—including jury trials—as well as strategies for establishing an effective defense, including a discussion of the role and importance of provider documentation. Part III includes six chapters that focus on future trends in LTC. LTC administrators represent and work with clients and staff from diverse cultural and social groups. An understanding of these differences can be beneficial for all constituents involved. Chapter 13 includes a discussion about the concepts of human diversity, and presents challenges and issues related to caring for diverse elders. Alzheimer’s disease is a degenerative disease that impairs memory and the ability to think while also altering behavior. The number of individuals with Alzheimer’s has risen steadily over the past 20 years; people with the disease can expect to live between 4 and 20 years. Due to the lengthy span of this disease and the vastly different levels of care needed throughout its progression, it is critical to have LTC options that support those with the disease as well as their families and caregivers. Chapter 14 focuses on the current LTC options for those with Alzheimer’s, some of the current limitations within the LTC system, and areas of the LTC market that need to be further developed to better support this segment of the elderly population.

xvi  PREFACE

Chapter 15 defines palliative care and explains the framework for quality palliative care programs, including its domains of care and the increasing importance of LTC. Ways to measure the effectiveness of LTC palliative care programs according to common chronic illness disease trajectories are discussed in conjunction with strategies for optimizing quality of life. The chapter concludes with an exploration of how psychosocial, spiritual, and cultural needs participate in transdisciplinary palliative care models. Challenges and opportunities for implementation in LTC complete the chapter’s analysis. Chapter 16 presents an overview of technologically advanced “smart” tools presently available for use by LTC providers. The overarching conceptual framework explains why these technological tools must not be understood as gadgets and gizmos, which operate pretty much independently of human beings, but as careprovision tools that change the way people do their jobs and relate to their clients. The systems discussed include, but are not limited to, the following seven types: emergency response, wandering/elopement detection, remote person monitoring, cognitive and physiological rehabilitation, teleconferencing, social networking, and electronic care records. Special attention is paid to how these tools have been integrated into care provision by organizations working across the LTC continuum from home care to memory units. Case examples of the deployment and integration of advanced technological systems by care provision organizations in both the United States and Europe are provided. The authors conclude with a series of points for consideration by potential technology adaptors, which should be helpful to any organization considering the purchase and integration of such technological tools into their care delivery models and business plans. Continuous coordinated quality care across settings is essential to promote healthy aging for older adults living longer with serious and complex chronic conditions. Safe, effective, and efficient care transitions, whether across care settings or within an existing setting, promote health status and quality of life. Chapter 17 begins with an overview of issues associated with poor care transitions and recommendations for improvement. A case study highlights challenges in the delivery of LTC and how to provide quality care during care transitions. Development of an accurate needs assessment, creation of an interdisciplinary transitional team, and implementation of a comprehensive transition plan are all critically important to ensure a smooth transition in any setting. Chapter 18 focuses on culture change, a rapidly growing movement within the nursing home/LTC industry aimed at addressing quality-of-life issues typically associated with long-term institutional care. The movement seeks to change the focus from a medical-centered approach to a person-centered/person-directed model by addressing the social and physical structures that comprise the traditional nursing home/LTC operations and physical plant. Early results indicate that providers who embrace and sustain culture change practices experience improvement in resident, family, and staff satisfaction. However, the movement remains in its infancy and has yet to develop a solid empirical basis and validated tools for implementing and measuring the effectiveness of providers’ approaches. Additionally, little research has yet to address how culture change practices affect varying populations, including those with mental impairments or individuals who use nursing home services on a short-term basis. This chapter reviews the literature surrounding the culture change movement’s history, developing models, and limiting factors in implementation, and makes suggestions for future policy reform. Long-Term Care Administration and Management: Effective Practices and Quality Programs in Eldercare will serve as a helpful reference for professionals who are

PREFACE  xvii 

associated with Leading Age California, the American College of Healthcare Administrators, the American Society of Aging, the Association for Gerontology in Higher Education, the Gerontological Society of America, and other aging and LTC administration organizations. It also will be a useful textbook for undergraduate and graduate students in gerontology, health administration, and LTC administration as well as practitioners in counseling, dietetics, health education, kinesiology, nursing, physical therapy, public administration, recreation, social work, and other health and human services areas. Darlene Yee-Melichar, EdD, CHES Cristina M. Flores, PhD, RN Edwin P. Cabigao, PhD, RN

ACKNOWLEDGMENTS

We are grateful to the many people who have contributed meaningfully to the successful completion of this book. In particular, we thank Sheri W. Sussman, Executive Editor at Springer Publishing Company, who helped to conceive the idea of this book and invited us to develop it. We appreciate very much the encouragement and support that she has provided during the past 2 years as we wrote the manuscript. We especially want to thank all the chapter authors who have provided their respective areas of expertise within this publication. Caroline Alcantara, Linda R. Barley, David C. Burdick, Amanda Caldwell, Christopher Cherney, Prescott Cole, Courtney J. Donovan, Nancy Dudley, Erika Falk, Kyle Cotter Frederickson, Doron D. Goldman, Diane L. Griffeath, David Hahklotubbe, Mauro Hernandez, Nate Hinerman, Nichole Kain, Regina Khurin, David M. Kutzik, Jay S. Luxenberg, Joseph F. Melichar, Candiece N. Milford, John W. Milford, Bruce J. Miller, Robert Newcomer, Denise A. Platt, Debora W. Tingley, Kimberly Weber, and David Werdegar have shared insightful contributions. For their assistance with literature and website searches and updating references we are grateful for the helpful work of San Francisco State University research assistants, Brandi Campbell and Samantha Cox. Our families and friends have been a mainstay of encouragement and support throughout the preparation of this book; we take this opportunity to express our gratitude to all of them.

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I

Options In Long-Term Care

1

LONG-TERM CARE AT HOME Doron D. Goldman Regina Khurin Debora W. Tingley Darlene Yee-Melichar

LEARNING OBJECTIVES On the completion of Chapter 1, the reader will be able to

the purpose and responsibilities involved with informal and •  Distinguish  formal long-term care (LTC) at home •  Describe the types of home-care professionals for both medical and

nonmedical needs •  Understand some of the regulatory and financial considerations of home

care on the national and state levels •  Be familiar with legal issues related to home care, particularly elder

abuse prevention

LTC at home is becoming more common as our aging population expands and costs associated with institutionalized care continue to rise. Home care service provision has also expanded greatly with the growing interest in noninstitutional care options and shifting policies resulting from the Supreme Court’s Olmstead decision that requires states provide more LTC support in the community. For the purposes of this chapter, we are concerned with all home care that falls within the definition of LTC, which “encompasses a broad range of help with daily activities that chronically disabled individuals need for a prolonged period of time” (Stone, 2000, p. 2). Although LTC generally includes assistance with essential routine activities, housing, and skilled medical care, long-term home care primarily involves the nonmedical services that provide assistance to elders with their activities of daily living (ADLs) and instrumental activities of daily living (IADLs). ADLs encompass the normal activities of self-care, such as bathing, eating, dressing, toileting, and transferring

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4  I.  OPTIONS IN LONG-TERM CARE

in and out of bed (mobility). IADLs are the more complex routine tasks that enable people to continue living independently, such as shopping, money management, housekeeping, meal preparation, taking medications, talking on the telephone, and written and oral communication (Yee-Melichar, Renwanz-Boyle, & Flores, 2011). LTC at home often ends up requiring a combination of informal and formal caregiving.

Informal Home CARE Informal home care is by far the most common form of care that elders receive. Often, informal care is described in the literature as family caregiving. Informal care, however, is a more inclusive term for unpaid caregiving and encompasses all help provided by nonprofessional care providers, including family, friends, neighbors, and others in the community such as church members (Schumacher, Beck, & Marren, 2006). It is very difficult to find current estimates of the number of individuals giving and receiving informal LTC at home due to the lack of distinction in recent studies between short-term care and LTC and care provided specifically for people older than 65 years. Calculations that attempt to take these additional parameters into account suggest that on the order of 9 million seniors are receiving LTC at home (National Center for Health Statistics, 2011; National Health Policy Forum, 2011; Tavernise, 2011; Profile of Older Americans, 2010; Stone, 2000; U.S. Census Bureau, 2010) and about 24 million informal caregivers are providing this care at any one time (AARP Public Policy Institute, 2011; National Health Policy Forum, 2011).

Role of Informal Caregivers Helping older adults with daily activities is a significant part of informal caregiving, but informal caregivers also frequently take on care coordination, medical regimen oversight, behavior management, and patient advocacy duties. Managing all of these aspects of care requires planning, problem solving, patience, and interpersonal finesse. Unfortunately, most informal caregivers are not given adequate training and support to deal with all of these challenging roles. A distinction is sometimes made between primary caregivers and secondary caregivers, with primary caregivers generally providing more of the daily care and secondary caregivers helping with activities that are intermittent, such as shopping, other physical activities, and home repair. Also, secondary caregivers are more likely to provide emotional support and help out in times of crisis, rather than being there at all times (Stone, 2000). Overall, according to one influential study (Schumacher et  al., 2006), caregivers, primary and secondary, tend to manage three important areas of elders’ lives: 1. Illness: Caregivers help carry out any prescribed in-home treatments, generally monitor the health of the patient, advocate for evolving patient needs, and cope with any behavioral manifestations related to the patient’s illnesses. 2. Systems: Caregivers deal with multiple systems, including health care organizations such as medical offices and insurance providers, social services, as well as legal and financial organizations related to the needs and obligations of the patient.

1.  LONG-TERM CARE AT HOME  5

3. “Invisible” needs: Caregivers also try to anticipate potential health care needs, provide preventative care measures, and supervise/coordinate the various care providers in the elder’s support circle. In addition, caregivers sometimes find that elders resent interference in the handling of their lives and must find ways to shield them from certain aspects of their condition or care. This “invisible work” can be time-consuming and emotionally draining and needs to be acknowledged as a critical aspect of informal caregiving.

Characteristics of Informal Caregivers Informal caregivers can of course range widely in age. Those who care for elders tend to be older: the average age of an informal caregiver is 48 years old (FCA Fact Sheet, 2012), whereas the average age of caregivers for people older than 65 years is 60 years of age (FCA Fact Sheet, 2012; Stone, 2000). One reason these caregivers are older on average is because care for elders is most often provided by their spouses (Cohen, Weinrobe, & Miller, 2000). It is important to note that approximately two thirds of elders have no formal caregiving services, which often makes spouses the first line of defense (Cohen, Weinrobe, & Miller, 2000). A trend to watch is the growth in the percentage of caregivers who are helping those who are 85 and older (FCA Fact Sheet, 2012). It has been estimated that informal caregivers spend an average of 18 to 21 hours a week in caregiving mode (FCA Fact Sheet, 2012; Schumacher et al., 2006; Volunteers of America, 2011). Not surprisingly, surveys have found that the majority of caregivers are women—as high as 66% by some estimates (FCA Fact Sheet, 2012). To complicate matters, more women are becoming the primary family breadwinner, which means that for those caregivers who are not yet retired, the stresses and costs of caregiving are growing. The significant opportunity costs associated with informal caregiving is addressed in more detail later in the section on Financial Considerations in Home Care.

Challenges of Informal Caregiving Informal caregivers of elders face many challenges. They are often unprepared for the emotional and physical aspects of caregiving and report daily difficulties as well as a need for more support and accessible information (FCA Fact Sheet, 2012; Schumacher et al., 2006). In one focus group study of informal caregivers who served people of all ages, the caregivers reported a reluctance to share their caregiving experiences, a tendency to avoid outside services, and a dislike for being called a “caregiver” (Family Caregivers Self-Awareness and Empowerment Project, 2001). Their focus tends to be on their loved ones, not on seeking out help; however, the consequences of trying to handle this job alone can be significant. Both clinical observation and research studies show that informal caregiving of the elderly places a great deal of stress on the caregiver. In fact, long-term caregiving has many of the same effects seen with chronic stress experiences. Physical strains as well as the psychological stresses from the unpredictable, uncontrollable nature of the work tax caregivers’ health over time and often impact multiple domains of life, including work and relationships (Schulz & Sherwood, 2008). Characteristics

6  I.  OPTIONS IN LONG-TERM CARE

of the specific care situation, including level of physical disability, ­cognitive status, behavioral issues, and overall intensity of the caregiving work influence the caregiver’s ability to cope (Schulz & Sherwood, 2008). For example, caring for an older adult with dementia is especially challenging because of the intensity of supervision required and the behavioral issues that can accompany disease progression. Health ramifications for informal caregivers appear to be more prevalent in older caregivers and those with fewer financial and informal support systems (Schulz & Sherwood, 2008). The hardships of caregiving are often mixed with feelings of satisfaction that come with helping others (Schumacher et  al., 2006). Many report feeling a sense of purpose from their work and appreciate the new skills and strengthened relationships that emerge as a result of their caregiving activities (Schulz & Sherwood, 2008). One future direction will be to explore whether these more positive aspects of caregiving can moderate the response to the stressful experiences associated with the work. Clearly, informal caregivers are filling a void in accessible and affordable home care and their largely unpaid contribution is a critical health care resource. Many are pleased to be able to help the elders in their lives, but the costs to the caregivers can be substantial, especially because formal or informal caregiving help, even when available, is not always accessed.

FORMAL HOME CARE Formal, or paid, home care can allow seniors to remain independent by providing necessary services such as skilled nursing; physical, speech, and occupational therapy; social work services; case management; hospice; as well as housekeeping, personal care, shopping, and transportation. However, the distinction between formal and informal caregiving is becoming somewhat blurred as some Medicaid waiver programs1 now allow Medicaid funds to be used by care recipients to hire family members as paraprofessional home care providers (Scharlach, 2008). Whether services are provided through an agency or not, formal home care is typically categorized as either home health care, which is skilled care delivered by licensed professionals, or nonmedical/custodial care. Home health care covers a wide range of health and social services and can be tailored to meet the needs of individuals recovering from surgery or injury, and those with disabilities, chronic conditions, or terminal illness. Nonmedical home care, which mainly provides aid with ADLs and IADLs, is the most rapidly growing segment of the home care market, but standards vary greatly and worker-training requirements vary by state (Kelly, Morgan, & Jason, 2012). One of the benefits of choosing formal care at home is that seniors with moderate needs can remain independent and among familiar people and surroundings, even when their informal networks cannot provide the required support. This choice can be less expensive than institutional care depending on the level of services required. One of the disadvantages can be the added responsibility and time 1  Medicaid

waiver programs allow states to test new ways of delivering health care services. Read more about the Medicaid waivers related to home- and community-based care at http://www.medicaid.gov/ Medicaid-CHIP-Program-Information/By-Topics/Waivers/Waivers.html

1.  LONG-TERM CARE AT HOME  7

required to oversee that care, including arranging appropriate services, interviewing and managing employees, dealing with insurance and bonding, and adjusting services as needs change.

Home Care Providers Approximately 12 million individuals2 currently receive care from more than 33,000 providers3 for reasons that include acute illness, long-term health conditions, permanent disability, or terminal illness. Providers of home care services include visiting nurse associations, government agencies for disease control and community health education, for-profit home care agencies, private nonprofit home care agencies, hospital-based agencies, rehabilitation facilities, and agencies based in skilled nursing facilities. More specifically, the types of providers that offer these services are listed here. •  Medicare-certified home health agencies provide skilled nursing as well as one or more therapeutic services such as physical therapy, occupational therapy, speech therapy, and case management. •  Licensed home health agencies provide skilled nursing and, frequently, home care aide services. These agencies specialize in working with private insurance companies although many are certified to accept Medicare and Medicaid. •  Interprofessional services offer physical therapy/rehabilitation and mobile x-rays. •  Nonmedical home care aide organizations provide supportive services such as nonmedical personal care (help with ADLs and homemaking). •  Hospice provides palliative care to the terminally ill and support for the primary caregiver and family members. Hospice in the United States has grown from a volunteer-led movement to improve care for people dying alone, isolated, or in hospitals to a significant part of the health care system. In 2008, 1.45 million individuals and their families received hospice care (Hospice, n.d.). Medicare pays for this service, as do most private health insurance and health maintenance organization (HMO) policies. •  Home-infusion pharmacies provide pharmaceuticals and related high-tech services (e.g., intravenous [IV] antibiotics) to the home. If such a pharmacy provides or arranges for skilled nursing, it must be licensed as a home health agency. •  Home medical equipment companies deliver medical equipment, products, and supplies to the home.

Formal Home Care Workers We currently have no centralized database for the national health care workforce, and studies have not yet focused on describing the characteristics and demographics 2  This

estimate comes from a June 2008 National Association for Home Care & Hospice (NAHC) study of costs intended to determine the number of home health and in-home hospice patients served, and a private survey of NAHC members to obtain an estimate of private duty patients served. Retrieved January 7, 2012 from http://www.nahc.org/facts/10HC_Stats.pdf 3  This

number is a combination of Medicare-certified home health agencies, Medicare-certified hospices, and an estimate of non-Medicare agencies providing care in the home. Retrieved January 7, 2012 from http://www.nahc.org/facts/10HC_Stats.pdf

8  I.  OPTIONS IN LONG-TERM CARE

of the professionally diverse home health care workforce (Ricketts, 2011). However, several studies have reported that nonmedical home care workers in the United States are more likely to be female, older, noncitizens, and non-English speaking (reviewed in Kelly et al., 2012). These trends may be due to the flexibility that the work can provide coupled with lowered requirements with regard to language, education, and citizenship status (Kelly et al., 2012). Categories of formal home care workers are described in detail below: Registered nurse (RN): Care provided by an RN is typically supervised or prescribed by a physician. An RN has 2 or more years of training and is licensed by the state. This highly skilled level of care includes trained professional services for individuals recovering from surgery, an accident, or more complex medical needs that can be addressed in a home setting (e.g., wound care, injections, IV therapy, ventilator care, disease treatment, and patient assessments). Some RNs also provide care-management services. Licensed practical nurse (LPN)/licensed vocational nurse (LVN) and certified nurse assistant (CNA): LPNs/LVNs have 1 or more years of nursing training. A CNA has a certain number of hours of training in both hands-on service and classroom work. Both types of professionals usually work under the supervision of an RN. Specific care provided may include some traditional nursing, if individuals are sufficiently trained, and personal care. Home health aide (HHA): These home care workers assist people with ADLs such as getting out of bed or up from a chair, walking, dressing, bathing, and toileting. Some aides have specialized training to perform more complex tasks such as health monitoring or catheterization under the supervision of a trained nurse. Personal care assistant or attendant: These terms usually refer to individuals who care for people with disabilities. Personal care assistants are usually hired independently and may or may not have professional certification or specialized training. They typically assist disabled individuals in getting out of a chair, dressing, bathing, and may also accompany them to work, recreational events, or medical appointments. Occupational therapist (OT): An OT is trained to help individuals learn ways to cope with or compensate for limitations in performing ADLs. Often prescribed by a physician, an OT can help teach someone to use a walking device or other rehabilitative equipment. OTs can train both care recipient and caregiver in techniques to improve mobility or make household routines easier. Physical therapist (PT): A PT is usually prescribed by a physician to help people recover from a physical injury or improve physical functioning. PTs have extensive training in anatomy and musculoskeletal physiology and can teach exercises designed to promote or restore strength. A PT can also be useful in training caregivers in safe lifting or bending practices. PTs may use equipment, training materials, massage, or other techniques. Dieticians: These health care professionals provide nutritional counseling and guidance to help individuals manage the relationship between nutrition and illness (e.g., diabetes or heart disease) or disability. Speech therapist: These rehabilitative therapists assist individuals with communication disorders resulting from disease, injury, surgical intervention, or stroke. Specifically, speech therapists help their clients regain lost speech, cope with aphasia, and learn special techniques to aide in swallowing, breathing, and muscle control.

1.  LONG-TERM CARE AT HOME  9

Homemaker/caregiver: This category of home care worker typically performs light housekeeping duties, including meal preparation, shopping, laundry, and cleanup. Depending on the level of training, this person may assist with organi­ zing paperwork or making phone calls. Such individuals are hired to help complete household tasks, and they generally do not perform personal, hands-on care. Home care companion/friendly visitor: These individuals provide companionship to those who are homebound. They may perform limited tasks (such as preparing lunch), but their main duty is to provide company and/or supervision to the person in need. Companions may be paid employees or volunteers. Hospice team: Hospice is a collaborative effort comprised of varying disciplines that provide palliative care for terminally ill patients. The team includes the patient’s family, doctors, nurses, HHAs, a social worker, and a spiritual counselor. Many times, the family will also be visited by a hospice volunteer.

Home Health Agencies and Nonmedical Home Care Agencies Home health agencies offer skilled care, are licensed by the state, and are Medicare certified under federal guidelines. Nonmedical home care agencies (also called home care agencies4) provide mainly nonskilled custodial care and are the fastest growing segment of all home care providers (Kelly et  al., 2012). Fees vary from region to region and from agency to agency based on the types of services offered. One issue to keep in mind is that most agencies contract for a minimum number of hours. Overnight care or nighttime respite care for 8 to 12 hours may be payable by the hour or at a flat daily rate.

Agency Case Protocol at a Glance 1. Agency gets a referral and makes initial contact with family. 2. An agency professional such as a nurse, social worker, case manager, or gerontologist meets with the client at home and completes an initial assessment. 3. A care plan is created based on both the family input and the assessor’s overview and is presented to the family. 4. Once all parties are in agreement, the case will be staffed. Agencies have different ways of handling staffing, but keeping clients satisfied by following their preferences is usually a priority. 5. After a caregiver is in the home, the agency will monitor closely to confirm good fit. Both client and staff should be contacted for feedback. 6. If it is determined that all parties are content, regular supervisory visits will be done once a month. Announced or unannounced visits are performed as deemed appropriate by the agency management staff. 7. Strong communication between agency and staff is a hallmark of quality home care agencies; good staff equals a good agency, and vice versa.

4  The

term “home care” can refer to both home health care and nonmedical home care and is used in this general way in this chapter. However, it is common in the industry to use the terms “home care agency” or “home care” to refer to nonmedical home care only, which can lead to some confusion. In this chapter, we have tried to use the “home health” and “nonmedical home care” terminology to distinguish skilled from nonskilled care/agencies, respectively.

10  I.  OPTIONS IN LONG-TERM CARE

CASE STUDY Mrs. Jones, an 86-year-old female residing with her husband in a private home, has amyotrophic lateral sclerosis (ALS).5 She has been married for over 55 years and the couple has two children. Their son and daughter live close by but are unable to provide care because of their own family and work responsibilities. Mrs. Jones is now in the later stage of the disease and although she still has limited use of her arms and hands, her lower extremities have completely atrophied. She spends her days in an electric wheelchair that helps accomplish some ADLs, but Mrs. Jones needs more help. She is unable to bathe, dress, or groom herself. She is also unable to use the restroom on her own, one of the biggest issues when a caregiver is not available. Mr. Jones has significant health problems and cannot help her with this task at all. Mrs. Jones is still able to feed herself for the time being but the disease is progressing and she could lose this ability at any time. Mrs. Jones is very personable and has full mental capacity. In addition, she and her husband still enjoy a strong marital relationship. The Joneses hired Home Care Company XYZ to provide live-in caregiving work 24 hours/day.

Benefits of Hiring an Agency 1. The agency is responsible for ensuring that trained and licensed staff are available at all times with a “backup” system in place. In the case of Mrs. Jones, there is no room for hiccups—she needs to have a reliable home care agency that will meet her staffing needs at all times. 2. Agencies are required to check employees’ references, do background and Department of Motor Vehicles (DMV) checks, and determine workers’ competency status. 3. Agencies will cover the costs of workers’ benefits, taxes, and workers’ compensation insurance (caregivers are in a high-cost category). In the case of Mrs. Jones, there was quite a bit of daily lifting. Because the agency had provided them with proof of workers’ compensation insurance, the Joneses had peace of mind that should a caregiver get injured on the job, expenses would be covered. 4. Because the agencies are the caregivers’ employers, they supervise the caregiver; if the caregiver is not working out, the agency handles the dismissal. The weekend coverage for Mrs. Jones was challenging both for the agency and for the clients. Mrs. Jones was disappointed in some of the weekend care help that she was receiving, but all she had to do was call the agency and it became their problem, not hers. 5. Agencies train their staff and oversee that the work is properly executed.

5  Amyotrophic

lateral sclerosis or ALS is a serious neurological disease that causes muscle weakness, disability, and eventually death. ALS is often called Lou Gehrig’s disease, after the famous baseball player who was diagnosed with it in 1939. Worldwide, ALS occurs in 1 to 3 people per 100,000. In the vast majority of cases—90% to 95%—doctors do not yet know why ALS occurs, although about 5% to 10% of ALS cases are thought to be inherited. ALS often begins with muscle twitching and weakness in an arm or leg, or with slurring of speech. Eventually, ALS affects one’s ability to control the muscles needed to move, speak, eat, and breathe. Retrieved January 7, 2012, from http://www.mayoclinic.com/health/amyotrophic-lateralsclerosis/DS00359

1.  LONG-TERM CARE AT HOME  11

Disadvantages of Hiring an Agency 1. The cost per hour for a caregiver from an agency will always be higher than a private hire due to agency administrative overhead. 2. Higher costs may mean that clients use fewer hours of care overall. 3. Shifts are usually limited to a minimum amount, commonly 4 hours/day. 4. There may be less flexibility in the types of tasks each category of caregiver is permitted to do. 5. The client may not be able to choose his or her caregiver, only the type of worker. 6. Having multiple caregivers can negatively impact continuity of care and be stressful for some clients.

HOME CARE REGULATION In terms of formal home care, agencies that provide services such as skilled nursing must be licensed as home health agencies, and if they serve Medicare beneficiaries, they must be Medicare certified. Many states have Medicaid programs such as Title XIX personal care services and the 1915(c) home and community-based services (HCBS) waiver program, which reimburse home care agencies and providers who are client-employed; these programs also have training and oversight requirements but the requirements vary greatly from state to state (Kelly et al., 2012). Some states also have home care accreditation programs. For example, care providers in California may apply to be accredited based on standards proposed by the National Association for Home Care & Hospice (NAHC), the community health accreditation program, the accreditation commission for home care, or other organizations. Regulation of nonmedical home care also varies by state, but in many cases no oversight or licensure exists for home care agencies providing nonskilled nursing services. One recent study found that 29 states require a license for nonmedical home care providers, and of those, 26 mandate orientations and 15 require home care workers to have in-service training (Kelly et al., 2012). Clear guidelines on the skills needed to provide quality nonmedical home care and standardization of minimum competencies for workers are two areas that must be addressed nationally to improve LTC at home (Kelly et al., 2012). For informal caregiving in the home, one pertinent question is how much care family members should be obliged to provide. It is interesting to note that in 2005, 30 states still had filial responsibility laws that require adult children to care for elderly parents in need who cannot support themselves financially (Scharlach, 2008). However, such laws are rarely enforced. Another important question regarding informal caregivers is, “Whose needs take precedence when the caregiver’s well-being is jeopardized by the physical and emotional stresses of caregiving?” How tangible or intangible costs to informal caregivers might be compensated has also not yet been addressed at a regulatory level (Scharlach, 2008).

Financial Considerations in Home Care The financial aspects of home care for elders are complex. Overall, health care costs in the United States have been estimated at $2.74 trillion, a figure accounting for 18.1% of the gross domestic product (GDP). Home health care is a relatively small

12  I.  OPTIONS IN LONG-TERM CARE

percentage of overall health care spending, estimated at 3% of this total, but expenditures have risen from an estimated $62.6 billion in 2008 to $76.0 billion in 2011, a rate of increase exceeding that of overall health care spending (Altarum Institute Spending Brief, 2011).

Cost of Home Health Care In 2009, annual expenditures for home health care were projected to be $72.2 billion (Centers for Medicare & Medicaid Services, 2010). In 2011, the cost of home health care had stabilized, with a 0% rise over the previous year. Note that Medicare covers the medically necessary skilled care (approximately 7,500 home health agencies are Medicare certified), but does not cover 24-hour care or nonmedical/custodial care. The Medicaid (Medi-Cal in California) program will cover part-time, intermittent skilled care, but only for low-income persons. Private pay medically oriented care from a certified nurse’s aide will cost families more than custodial care—according to one New Jersey-licensed eldercare provider, costs run approximately $22/hour (S. Jani, personal communication, December 11, 2011). There is some variation in the cost, state by state, as seen in Table 1.1.

Cost of Nonmedical Home Care Payment for nonskilled home care is paid out of pocket or by LTC insurance unless the senior is undergoing an acute episode and qualifies for the skilled services of a Medicare-certified home health agency. Using an agency for nonmedical home care is a much safer way to provide care but can be expensive for the family. The cost of licensed homemaker services, or “hands-off” personal care involving companions who help with cooking and running errands, for example, is approximately $18/ hour. For “hands-on” care involving ADLs, licensed health aide services run around $19/hour (Genworth, 2011). For informal care at home, most costs are not explicitly financial, but rather categorized as economic opportunity costs and psychological costs (Byrne, Goeree, Heidemann, & Stern, 2008).

Opportunity Costs of Care at Home What is the cost to informal caregivers for providing LTC at home? The economic opportunity costs for all informal caregivers was estimated to be $450 billion in 2011, and based on the percentage of that care dedicated to elders, we can further deduce costs of approximately $256.5 billion for informal elder home care in 1 year (AARP Public Policy Institute, 2011; National Health Policy Forum, 2011). According to Gallup research, it is estimated that 17% of American workers are caregivers, which would suggest that approximately 10% of American workers are giving care to the elderly (Witters, 2011). A significant segment of informal caregivers—over 9.7 million—are individuals aged 50 or older who are caring for their elderly parents. According to a MetLife study, these children in aggregate have lost nearly $3 trillion in wages, pension, and Social Security benefits due to their caregiving responsibilities. This comes to approximately $303,880/caregiver, which does not include “out-of-pocket” expenses, estimated to run an additional $5,531/year (“MetLife Study of Caregiving Costs,” 2011). The costs to informal caregivers are, in a word, staggering. If LTC provision at

1.  LONG-TERM CARE AT HOME  13

TABLE 1.1  2011 State-by-State Home Care Rates (in Dollars) Homemaker Service Hourly Rate (Licensed) State

Home Health Aide Service Hourly Rate (Licensed)

Minimum

Maximum

Median

Minimum

Maximum

Median

Alabama

12

25

15

13

25

16

Alaska

23

28

26

24

33

27

Arizona

15

23

18

15

24

19

Arkansas

13

20

16

14

20

16

California

14

28

20

14

28

21

Colorado

12

25

20

12

30

21

Connecticut

12

25

19

14

26

22

Delaware

19

22

20

19

25

21

DC

18

18

18

21

21

21

Florida

11

26

17

12

26

18

Georgia

13

23

17

13

24

18

Hawaii

16

24

23

17

28

25

Idaho

14

21

17

16

27

18

Illinois

16

26

19

17

27

20

Indiana

12

23

17

12

25

18

Iowa

17

34

19

18

34

20

Kansas

13

20

17

15

23

18

Kentucky

13

21

17

13

21

18

Louisiana

12

19

16

12

20

16

Maine

16

23

20

17

25

21

Maryland

15

24

19

16

25

20

Massachusetts

17

25

23

18

28

25

Michigan

15

25

18

15

25

19

Minnesota

15

26

22

15

30

26

Mississippi

13

21

16

13

21

16

Missouri

15

24

18

15

28

19

Montana

17

24

20

17

25

21

Nebraska

17

24

19

19

28

20

Nevada

16

23

21

16

25

21

New Hampshire

17

26

22

23

28

24

New Jersey

12

25

20

13

26

21

New Mexico

14

23

19

14

23

20

New York

13

29

20

14

29

21 (continued)

14  I.  OPTIONS IN LONG-TERM CARE

TABLE 1.1  2011 State-by-State Home Care Rates (in Dollars) (continued) Homemaker Service Hourly Rate (Licensed) State

Home Health Aide Service Hourly Rate (Licensed)

Minimum

Maximum

Median

Minimum

Maximum

Median

North Carolina

14

23

17

14

26

19

North Dakota

20

23

22

20

23

23

Ohio

10

24

18

13

24

18

Oklahoma

16

20

18

16

22

19

Oregon

17

28

20

18

28

22

Pennsylvania

13

24

19

13

25

20

Rhode Island

19

25

23

20

28

23

South Carolina

10

20

17

12

21

17

South Dakota

16

21

18

17

21

20

Tennessee

11

22

17

11

23

17

Texas

10

28

17

10

28

18

Utah

14

22

19

16

23

20

Vermont

17

23

21

17

23

21

Virginia

14

26

17

15

26

19

Washington

18

30

20

18

30

22

West Virginia

13

22

15

13

22

16

Wisconsin

16

27

20

16

29

21

Wyoming

16

22

19

16

22

20

home continues to expand, the increased burden on families will need to be alleviated or compensated in some way through additional state and/or federal programs. Such an exemplary program in Massachusetts is described in detail below.

Highland Valley Elder Services: Promoting “Quality Long Living” Highland Valley elder services is a federal and state-funded agency that provides LTC services to the elder population of 24 towns in western Massachusetts. It is designated as an Area Agency on Aging (AAA) and an Area Services Access Point (ASAP). As an ASAP, Highland Valley provides seniors with access to all essential services under the state-run Massachusetts home care program, which is administered by the Massachusetts Executive Office of Elder Affairs (EOEA). Highland Valley was founded in 1974 and has grown to its present-day staff of 45 employees and 50 volunteers, and has a budget of $7.2 million. Highland Valley offers community dining centers, home-delivered meals, assistance with money management, assistance with daily living, access to an ombudsman (especially for elders who live in elder housing), protection against

1.  LONG-TERM CARE AT HOME  15

elder abuse, and access to a host of programs funded through a federal Title III caring community build (CCB) program, which offer therapeutic, recreational, and educational opportunities designed to empower elders. To be eligible for Highland Valley’s services, the majority of programs require that seniors have a maximum allowable yearly income of $25,731 for singles, and $36,409 for married seniors. What makes Highland Valley special? First, Highland Valley places a high priority on funding area initiatives that involve elders in programs that promote active engagement. Second, their protective services entity is a world-class operation: Staffed by four full-time and one part-time worker, protective services handles 90 to 110 cases at any one time for elders who are at risk of physical or mental abuse, neglect, or fraudulent behavior. Finally, Highland Valley elder services is the only designated AAA/ASAP in the United States to have an affiliated chapter of SAGE (services and advocacy for gay, lesbian, bisexual, and transgender [LGBT] elders). Highland Valley works to protect the rights of LGBT elders in individual cases and holds training sessions for employees to raise awareness about the complex issues facing LGBT elders. Highland Valley elder services is leading the way in demonstrating how to protect seniors from abuse and discrimination, and is a model for how state and federal agencies can support family efforts to provide highquality, long-term living at home.

Legal Issues in Elder Home Care The legal issues regarding the affairs of elders could easily fill an entire book. This section provides a broad overview of the key transactions that govern the wellbeing and resources of elders. We touch on the importance of legal documents such as wills, guardianships or conservatorships, trusts, powers of attorney, and health care proxies. We also consider financial funding such as reverse mortgages and LTC insurance as they are relevant to managing home care. However, the primary focus is on one of the most important and growing problems in eldercare—elder abuse.

Brief Primer on Legal/Financial Arrangements Pertinent to Elders at Home At a minimum, elders living at home need to have wills and health care proxies. The will dictates who should handle the estate after one’s death (executor) and who should inherit the estate (beneficiaries). A health care proxy allows one to designate a surrogate or substitute decision maker in the event that one is incapacitated and cannot make health care decisions. These legal instruments can help avoid family conflict and, at present, are often required by medical providers. A power of attorney (POA) is regarded by many to be as important as a will or health care proxy. It comes into play if elders can no longer manage their own finances. A lawyer can draw up POA documents, which authorize a designated person or persons to take control of the elder’s finances. Alternatively, one can file for guardianship or conservatorship in probate court, but these options are more time-consuming, expensive, and involve ongoing court oversight. In general, guardianship gives control over health care decisions, whereas conservatorship gives control over assets and financial decisions. If requested, the court will appoint an independent person to determine whether a conservator or guardian is needed. If deemed necessary, the court will then generally appoint a family member.

16  I.  OPTIONS IN LONG-TERM CARE

Trusts can be created if an elder or his or her advisor is concerned that giving assets away to family could mean that the assets are wasted. In this case, the “trustee” will hold the legal title to the property in question for the benefit of the future “beneficiaries,” but this trustee must follow the rules provided in the trust instrument (Elder Law Answers, 2011). There are revocable, or changeable, trusts and irrevocable, or nonchangeable, trusts but only irrevocable trusts protect assets from being accessible if an elder wishes to be Medicaid eligible (note that the Deficit Reduction Act of 2005 mandates that transfer of assets has to occur more than 5 years before the Medicaid application is made). This irrevocable trust option works well for elders who prefer their assets to be in the hands of someone like a financial advisor, as opposed to a POA who is more likely to be a family member. A reverse mortgage allows an elder to draw on the equity he or she has in his or her house. This can help fund home care, medical needs, as well as general cost of living. The maximum amount of the reverse mortgage can only be approximately 65% of the house’s value and must be repaid when the elder dies or moves out of the house. Unlike government-funded Medicaid and Medicare, LTC insurance is a private form of insurance that is purchased by individuals in advance of need to help cover some end-of-life care costs (Medicare is generally not available to fund LTC and Medicaid is only available for individuals with very limited income/savings). Although the amount that insurers can charge is controlled by state regulators, the industry has been trying to raise premiums by as much as 40% (Lieber, 2010). The cost of LTC can reach seven figures (especially if a nursing home is needed at some point). But the opportunity cost of lost investment gains needs to be factored in, along with the likelihood of needing such care (only 45% make a claim) and the cost per year of the insurance itself, which starts around $2,000/year for people in their 50s (Lieber, 2010). In addition, research has shown that a 65-year-old purchasing LTC insurance will only receive 68 cents for every dollar of premium paid (Brown & Findelstein, 2011). Although the government may be encouraging more of us to take out LTC policies, the high cost and uncertainty of need/benefit may keep the current figure of approximately 7 million policyholders (Brown & Findelstein, 2011) from increasing in the near term.6

Definitions of Elder Abuse Because the majority of older people live in their own homes, most elder abuse and neglect takes place in the home care setting. Elder abuse is a complicated issue because it can take many forms, occur in varying degrees over time, and involve relationships of trust that are difficult to investigate (U.S. Government Accountability Office [GAO], 2011). Elder abuse has been defined as “the physical, sexual, or emotional abuse of an elderly person, usually one who is disabled or frail” (MedicineNet. com, 2011). This definition, although clearly relevant to the topic, only partially covers the territory. A broader definition of elder abuse put forth by the World Health Organization (WHO) states that elder abuse is “a single or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation 6  Much

of the information in this primer has been derived from discussions with attorney Michael Hooker. Hooker has specialized in elder law issues in Northampton, Massachusetts, since 1985. Hooker’s firm provides services related to estate planning, asset protection, Medicaid planning, wills, probate, guardianship, and conservatorship. He also employs a licensed social worker and registered nurse/geriatric care manager who can perform case management to improve overall health and living conditions.

1.  LONG-TERM CARE AT HOME  17

of trust which causes harm or distress to an older person” (MedicineNet.com, 2011). From a legal standpoint, the latter definition requires that three elements be present to constitute a prima facie case, that is, evidence adequate to present a basic factual case of elder abuse: (a) a relationship between the elder and the alleged abuser, (b) an abusing act, and (c) harm or some form of distress to the elder. Without all three elements, elder abuse cannot be substantiated. In addition to physical, sexual, or emotional abuse, the abusive act can be one of neglect or financial exploitation (National Academy of Elder Law Attorneys [NAELA], 2008). Neglect can take the form of neglect by others or self-neglect. Neglect, other than self-neglect, involves “refusal or failure to fulfill any part of a person’s obligation or duties to an older adult” (GAO, 2011, p. 4). Although selfneglect is not legally punishable, it is a form of abuse recognized by the National Center for Elder Abuse (NCEA) and is a significant problem that needs to be better addressed in our society (GAO, 2011; MedicineNet.com, 2011). Financial abuse or exploitation involves improper use of an elder’s funds, property, or assets (GAO, 2011).

Incidence of Elder Abuse Although data on national trends of elder abuse is lacking, Adult Protective Services (APS) program officials across the country are reporting that elder abuse caseloads are increasing. According to a 2011 Government Accountability Office (GAO) report, “The most recent study of the extent of elder abuse estimated that 14.1 percent of non-institutionalized older adults had experienced physical, psychological, or sexual abuse, neglect, or financial exploitation in the past year” (GAO, 2011, p. 25). And this total likely underestimates the actual incidence of elder abuse because of underreporting and the fact that this study and similar others did not ask about all forms of abuse and could not include elders with cognitive impairment. According to the report, state agencies are handling increasingly complex cases, many of them involving multiple forms of abuse, multiple perpetrators, cognitive disability, and substance abuse. These kinds of abuses can happen to anyone: At a hearing of the Senate Special Committee on Aging in 2011, actor Mickey Rooney, then 90 years of age, testified that he had experienced emotional and financial elder abuse. Rooney stated that money had been stolen from him, he was not allowed to make decisions about his life, and, when confronted, the people in question told him he was confused (Pham, 2011).

How Elder Abuse Is Handled: State, Federal, and Local Systems Alone or in combination, state, federal, and community-based systems come into play when trying to resolve cases of elder abuse. Here, we examine each level of governance, with special attention paid to the state level where most activity and resource allocation currently occurs.

State Systems In addition to the APS program (described in detail in the next section), each state generally has legislation that defines forms of physical, sexual, and emotional abuse; forms of neglect; and financial exploitation. State laws are generally used more than

18  I.  OPTIONS IN LONG-TERM CARE

federal laws in preventing and prosecuting all kinds of elder abuse, but state laws vary widely with regard to level of protection and mandatory reporting to APS and/ or state criminal authorities (NAELA, 2008). In addition, states have different standards for what qualifies an older adult to be eligible for an APS intervention. This section focuses mainly on APS programs but also touches on the extent of intervention and prosecutorial conduct of state legal authorities. What do state courts and state prosecutorial systems do with regard to elder abuse? Generally, they do not do a great deal. When APS intervenes, state courts can and do make capacity determinations, in which capacity is defined as “their mental ability to understand the nature and effect of their acts” (GAO, 2011, p. 25). The state court can appoint guardians to be responsible for an elder’s decision making if the court has made a determination that the elder is incapacitated (GAO, 2011). States have criminal codes and civil remedies for each type of elder abuse. They also have statutes for crimes such as sexual assault, battery, general assault, fraud, as well as civil remedies for domestic violence, identity theft, financial exploitation, and actions such as removal of durable POA (Center for Elders and the Courts [CEC], 2012). Unfortunately, in some states, elder abuse is not considered a crime; a perpetrator can only be prosecuted if the offence falls under more general crimes like those listed above (GAO, 2011). Some states, such as Connecticut, Indiana, and Florida, provide for increased penalties for crimes committed against older adults, and other state statutes (Virginia and Texas) define specific crimes against family members (CEC, 2012). However, the overwhelming majority of abuse cases are addressed and resolved by APS. On a positive note, state and district attorneys offices are now creating units that specialize in elder abuse investigation and prosecution. At the community level, multidisciplinary teams (MDTs) are bringing together law enforcement, ombudsmen, health care workers, and APS to help resolve complex abuse cases (Wolf, Hodge, & Roberts, n.d.). These special programs provide some hope that elder abuse cases will receive more attention going forward. APS

The APS is a states-based system for addressing elder abuse. Their primary functions are to investigate alleged abuses and arrange services to ensure victim protection (GAO, 2011). Thirty-two states have APS programs supervised at the state level and 16 have state-funded county or other government/nongovernment forms of management (GAO, 2011; Massachusetts did not respond to the GAO survey, and South Carolina manages their APS in a different way). Eligibility criteria for receiving APS services vary state by state. These criteria are summarized in Table 1.2. Generally, eligibility criteria include the victim’s age, inability to perform ADLs or make decisions, dependency on others for care, and being in a relationship of trust with the alleged abuser. In 11 states, a victim can qualify just by reaching a certain age, generally 60 or 65 years, but most other states require that some or all of the other aforementioned eligibility criteria be met before APS can intervene (GAO, 2011). Laws regarding who is legally required to report alleged elder abuse incidents, otherwise known as mandatory reporters, also vary by state (Table 1.3). Although 14 states require everyone, including physicians, home health care providers, mental health service providers, law enforcement authorities, and financial institutions to report elder abuse, 32 states only require some of these professionals to report, and Colorado, New York, North Dakota, and South Dakota have no ­reporting

1.  LONG-TERM CARE AT HOME  19

TABLE 1.2  Selected APS Eligibility Criteria in Cases of Alleged Elder Abuse by State If No, Other Selected APS Eligibility Criteria

State Alabama

In a Relationship of Trust With the Alleged If Yes, Age Inability Perpetrator (for Can the at Which to Make Dependent One or More Older Adult Older Adults Responsible on Another Types of Abuse Qualify on Qualify for Inability to Decisions for for Their Other Than SelfAge Alone? APS Perform ADLs Themselves Care Neglect) No

*

*

Arkansas

No

*

*

California

Yes

Alaskaa Arizona *

65

*

Colorado Connecticut

No

Delaware

No

*

*

*

*

Florida

No

*

*

*

Hawaii

No

*

*

*

Idaho

No

Georgia *

*

Illinois

No

Indiana

No

*

*

*

*

Iowa

No

*

*

*

Kansas Kentucky

No

Louisiana

Yes

*

*

60

Maine

No

Maryland

Yes

55

Massachusetts

Yes

60

*

*

*

*

Michigan Minnesota

No

Mississippi

No

Missouri

No

Montana

Yes

Nebraska

No

* *

* 60 *

*

*

Nevada New Hampshire New Jersey

No

*

New Mexico New York North Carolina

No

*

* (continued)

20  I.  OPTIONS IN LONG-TERM CARE

TABLE 1.2  Selected APS Eligibility Criteria in Cases of Alleged Elder Abuse by State (continued) If No, Other Selected APS Eligibility Criteria In a Relationship of Trust With the Alleged If Yes, Age Inability Perpetrator (For Can the at Which to Make Dependent One or More Older Adult Older Adults Responsible on Another Types of Abuse Qualify on Qualify for Inability to Decisions for for Their Other Than SelfAge Alone? APS Perform ADLs Themselves Care Neglect)

State North Dakotab Ohio

No

*

Oklahoma

No

*

Oregon

Yes

Pennsylvania

No

Rhode Island

Yes

South Carolina

No

South Dakota

Yes No Yes

65 65

Yes No

Virginia

Yes

*

*

*

*

*

*

*

*

*

*

*

*

*

*

*

*

*

60

Tennessee Utah

*

60

Texas Vermont

*

60

Washington West Virginia

No

Wisconsin

Yes

Wyoming

No

60

* *

*

*

*

Note: The eligibility criteria listed in the table do not include all used to determine APS program eligibility for older adults. States highlighted in gray had eligibility criteria other than the ones we specified in the survey. ADLs, activities of daily living; APS, adult protective services. aAlaska bNorth

indicated that older adults can qualify for APS based on age alone but did not specify an age. Dakota did not provide information on APS program eligibility criteria.

Source: Responses to GAO survey of state APS programs.

r­ equirements (GAO, 2011). Of course, informal care providers are not mandated to report abuse and could very well be the ones who are abusing, which leaves much of the reporting to those who are abused and any professionals who witness the abuse. As we will see later in the discussion on federal funding of elder abuse initiatives, APS is generally funded entirely by state money, but there are some indications of change in the offing. Unfortunately, state resources for APS are in decline or, at best, stable; 25 of 38 states report that their funding has been the same or decreased over the past 5 years (GAO, 2011). This decrease in funding, combined with continued state budget cuts, threaten the ability of APS to effectively manage current elder abuse cases, and case numbers are expected to rise with the growth of

1.  LONG-TERM CARE AT HOME  21

TABLE 1.3  Mandatory Reporters to Adult Protective Services of Elder Abuse by State

State

Home Health Care Everyone Physicians Providers

Alabama

*

*

Mental Health Service Providers *

Law Enforcement Financial Authorities Institutions *

Alaska

*

*

*

*

Arizona

*

*

*

*

*

Arkansas

*

*

*

*

*

California

*

*

*

*

*

*

*

*

*

Colorado

*

Connecticut Delaware

*

Florida

*

Georgia

*

*

*

*

*

Hawaii

*

*

*

*

*

Idaho

*

*

*

*

Illinois

*

*

*

*

Iowa

*

*

*

*

Kansas

*

*

*

*

Maine

*

*

*

*

Maryland

*

*

*

*

Indiana

*

Kentucky

*

Louisiana

*

Massachusetts

*

*

*

*

Michigan

*

*

*

*

*

*

*

*

Minnesota Mississippi

*

*

Missouri

*

*

*

*

Montana

*

*

*

*

*

Nebraska

*

*

*

*

Nevada

*

*

*

*

*

*

*

*

*

*

New Hampshire

*

New Jersey New Mexico

No one

*

New York North Carolina

*

North Dakota

*

Ohio

*

*

*

*

Oklahoma

*

*

*

*

* (continued)

22  I.  OPTIONS IN LONG-TERM CARE

TABLE 1.3  Mandatory Reporters to Adult Protective Services of Elder Abuse by State (continued) Home Health Care Everyone Physicians Providers

State Oregon

*

Pennsylvania Rhode Island

Mental Health Service Providers

*

Law Enforcement Financial Authorities Institutions

*

*

*

*

* *

South Carolina

*

*

South Dakota

* *

Tennessee

*

Texas

*

Utah

*

Vermont

*

*

*

*

Virginia

*

*

*

*

Washington

*

*

*

*

West Virginia

*

*

*

*

*

*

*

Wisconsin Wyoming

No one

*

Source: Responses to GAO survey of state APS programs.

our older adult population (GAO, 2011). In a nationwide study of APS administrators published in January 2011, 91% of APS administrators surveyed stated that they already lack the resources necessary to serve their population. Additionally, APS survey respondents indicate that they have difficulties with guardianship issues, inconsistent interpretation of the laws, lack of standardized laws, and ineffective working relationships with law enforcement officials (“Strengthening APS and Informing Implementation of the Elder Justice Act,” 2011). It is reasonable to conclude that APS operates within an extremely challenging environment. One can argue that law enforcement personnel should do more to help APS. The National Committee for the Prevention of Elder Abuse (NCPEA) believes that law enforcement can be specially trained to handle elder abuse and become a better advocate for programs and policies that facilitate prosecution of elder abuse cases. Examples might include videotaping victims who are unable to come to court, and participating in community-based initiatives that address these issues (NCPEA, 2012). Such an existing initiative, called TRIAD, which involves sheriff offices, is described in more detail in the local systems section of this chapter.

Federal Systems The Older Americans Act (OAA; 42 U.S.C. 3001 et seq.) has supplied definitions of elder abuse and has authorized federal funding for the National Center on Elder Abuse (NCEA). The NCEA works to promote collaborations that support elder abuse initiatives, focusing on multidisciplinary response teams, professional training, and education (CEC, 2012). The OAA has two Titles, or sections, that cover elder abuse and prevention (U.S. Department of Health and Human Services, 2010). The 2006 Amendments to the OAA (Public Law 109–365) define terms such as elder

1.  LONG-TERM CARE AT HOME  23

justice, exploitation, neglect, and self-neglect, but these definitions have not been uniformly adopted. However, prior to the 2010 enactment of the Elder Justice Act (EJA Public Law 111–148), which was part of the health care reform bill (H.R. 3590) known as the Patient Protection and Affordable Care Act, there was limited authorization of federal expenditures on elder abuse. For example, in 2007, federal spending for elder abuse was around $153 million, whereas spending for child abuse hit $6.7 billion (U.S. Department of Health and Human Services, 2010). In summary, although the OAA has focused more attention on the need for federal leadership in this area, substantive action has been slow to follow (GAO, 2011). In 2010, the EJA was passed. It was the first comprehensive legislation to address elder abuse and authorized over $600 million over 4 years to be appropriated for elder abuse, including $400 million for APS (Stiegel, 2011). In addition, it authorized an Elder Justice Coordinating Council to make recommendations regarding federal, state, local, and private agencies coordinating elder abuse activities. Yet, a 2012 budget allocation of $16.5 million for state APS demonstration projects (GAO, 2011) has so far only materialized into an APS award of $200,000 for the establishment of a new National Adult Protective Services Resource Center by the National Adult Protective Services Association (NAPSA; Administration on Aging, 2011). Stronger federal support for elder abuse protection may be on the way. There are currently at least two separate legislative initiatives pending before Congress that would support a more comprehensive federal approach toward elder abuse, specifically strengthening support for state APS systems. Additionally, there is talk of creating federally administered databases for monitoring abuse incidents and examining outcomes of abuse interventions (U.S. Department of Health and Human Services, 2010).

Local Systems Local authorities and APS play a key role in coordinating services that prevent and manage abuse of vulnerable older adults. Roughly, one third of the states have state-supervised, rather than state-administered APS systems. We will focus here on model programs being developed in Massachusetts. As described earlier, Massachusetts’s APS programs are handled by local, nonprofit agencies called ASAPs, which are supervised by the state’s executive office on aging. The ASAPs have a detailed protocol to follow when pursuing suspected cases of elder abuse. Aside from APS, local law enforcement and community-based entities also provide assistance with elder abuse cases in Massachusetts. The well-established TRIAD model has brought together law enforcement, older adult volunteers, and community service organizations to improve response to elder abuse situations locally. TRIAD was formed in 1988 by the American Association of Retired Persons (AARP), the International Chiefs of Police (IACP), and the National Sheriff’s Association (NSA). In practice, TRIAD plays a major role in forging relationships among multiple organizations at the community level, including the fire department, the council on aging, the Area Agency on Aging, emergency and social services, and retired and senior volunteer program (RSVP) groups (National Association of Triads, Inc. [NATI], 2008). TRIAD is described as a community policing initiative and, though not officially an acronym, it is thought to stand for “the right information and direction” (Spotlight on Elder Abuse, 2011). Sheriff Robert J. Garvey of Hampshire County, Massachusetts, says that TRIAD is an effective vehicle for improving the communication and relationships between law enforcement and the

24  I.  OPTIONS IN LONG-TERM CARE

senior ­community. He believes that TRIAD can empower, educate, and forge links with older people and that both seniors and law enforcement benefit from the work of TRIAD (NATI, 2008). In conclusion, elder abuse is a complex and vexing problem. Along with underfunding and underreporting, there is also the challenge of balancing the need for society to protect elders with privacy concerns of families and elder individuals. As the elder population continues to grow, however, the issues must be further addressed and will likely require better multilevel governmental coordination, development of comprehensive databases for abuse reportage, strengthening and expanding criminal and civil statutes to cover more abusive acts, and establishing consistency in how elder abuse cases are handled nationwide. Chapter  8 of this book contains further information on preventing elder abuse and neglect.

SUMMARY There are many options to consider in choosing what type of care is right for an individual. In this chapter, we have evaluated informal versus formal caregiving and the many service options available to support LTC at home. Informal caregivers play a vital role in providing in-home care, particularly with daily activities and care management, but impacts on caregiver health and better access to caregiver support must be addressed. Many types of formal care providers and services are available now for in-home care. Regulatory and training standards exist for medically oriented care provision, but for nonmedical care, they remain undeveloped and inconsistent across states. Medicare- and Medicaid–imposed standards as well as other available accreditations can provide consumers with a means to compare service options. Home health care represents a small percentage of overall U.S. health care expenditures, but out-of-pocket expenses and lost opportunity costs can be overwhelming for families trying to provide LTC at home. Along with financial decisions, families must consider the appropriate legal documents and insurance policies to ensure the highest quality care over the long term. Elder abuse in home care is a prevalent issue and can take the form of physical or emotional abuses as well as financial exploitation or neglect of one’s own health. At present, unreported and/or unprosecuted elder abuse maintains a disturbing presence in the field of gerontological work. Although the courts provide little practical protection, and APS state funding is being outpaced by the number and complexity of abuse cases, there is hope that protection will improve with new federally funded mechanisms and ongoing efforts by communities to pull together MDTs that can aid in resolving these complicated situations. A better understanding of these and other growing concerns related to aging in place will ensure the proper support, safety, and well-being of our aging communities.

REFERENCES AARP Public Policy Institute. (2011). Valuing the invaluable: 2011 update—The economic value of family caregiving in 2009. Retrieved from http://assets.aarp.org/rgcenter/ppi/ltc/fs229ltc.pdf Administration on Aging. (2011). Administration on Aging funds first National Adult Protective Services Resource Center. Retrieved from http://www.aoa.gov/aoaroot/Press_Room/For_ The_Press/pr/archive/2011/October/2011_10_13.aspx

1.  LONG-TERM CARE AT HOME  25

Altarum Institute Spending Brief. (2011). Insights from monthly national health expenditures estimates through August 2011. Retrieved from http://dev3-altarum.altaruminstitute.net/ files/imce/CSHS-Spending-Brief_Oct%202011_101211.pdf Brown, J. R., & Findelstein, A. (2011). Insuring long-term care in the United States. Journal of Economic Perspectives, 25(4), 119–142. Retrieved August 10, 2013, from http://pubs.aeaweb .org/doi/pdfplus/10.1257/jep.25.4.119 Byrne, D., Goeree, M. S., Hiedemann, B., & Stern, S. (2008). Formal home health care, informal care and family decision making. Retrieved from http://mfi.uchicago.edu/humcap/wp/ papers/fhhc.pdf Center for Elders and the Courts (CEC). (2012). Elder abuse and neglect basics: Elder abuse laws. Retrieved from http://www.eldersandcourts.org/abuse/laws.html Centers for Medicare & Medicaid Services, Office of the Actuary. (2010, March). National health expenditures 2009 highlights. Retrieved from http://www.wnpt.org/productions/chcv2/ prevention/pdf/highlights.pdf Cohen, M. A., Weinrobe, M., & Miller, J. (2000). Informal caregivers of disabled elders with longterm care insurance. Retrieved from http://aspe.hhs.gov/daltcp/reports/icdeltci.pdf Elder Law Answers. (2011). Medicaid planning. Retrieved from http://www.elder.awanswers. com/elder_info/elder_article.asp?id=701 Family Caregivers Self-Awareness and Empowerment Project. (2001). A report on formative focus groups. Retrieved from http://www.nfaccares.org/pdfs/FocusGroupReportFINAL.pdf FCA Fact Sheet. (2012). Fact sheet: Selected caregiver statistics. Retrieved from http://www .caregiver.org/caregiver/jsp/print_friendly.jsp?nodeid=439 Genworth. (2011). Cost of care survey 2011. Retrieved from http://www.genworth.com/ content/etc/medialib/genworth_v2/pdf/ltc_cost_of_care.Par.14625.File.dat/2010_Cost_ of_Care_Survey_Full_Report.pdf Hospice. (n.d.). In Wikipedia. Retrieved January 7, 2012, from http://en.wikipedia.org/wiki/ Hospice Kelly, C. M., Morgan, J. C., & Jason, K. J. (2011). Home care workers: Interstate differences in training requirements and their implications for quality. Journal of Applied Gerontology, 20(10), 1–29. Lieber, R. (2010, November 4). Ignore long-term care planning at your peril. The New York Times. Retrieved from http://www.nytimes.com/2010/11/05/business/businessspecial5/ 05CARE.html? pagewanted=all MedicineNet.com. (2011). Definition of elder abuse. Retrieved from http://www.medterms. com/script/main/art.asp?articlekey=11196&pf=3&page=1 The MetLife study of caregiving costs to working caregivers. (2011). Retrieved from http://www .metlife.com/mmi/research/caregiving-cost-working- caregivers.html#keyfindings National Academy of Elder Law Attorneys (NAELA). (2008). Elder abuse, neglect, and exploitation. Retrieved from http://www.naela.org/Public/About_Naela/Public_or_ Consumer?ElderAbuse.aspx National Association of Triads, Inc. (NATI). (2008). Introduction. Retrieved from http://www. nationaltriad.org.tools/NATI%20Manual-2008.pdf National Center for Health Statistics. (2011). NCHS data brief. Retrieved from http://www. cdc.gov.nchs/data/databriefs/db78.htm National Committee for the Prevention of Elder Abuse (NCPEA). (2012). Law enforcement personnel. Retrieved from http://www.preventelderabuse.org/professionals/law.html National Health Policy Forum. (2011). National spending for long-term services and supports (LTSS). Retrieved from www.nhpf.org/library/theBasics_LongTermServicesSupports_03–15-11. pdf Pham, S. (2011, March 3). Government report finds elder abuse on the rise. The New York Times. Retrieved from http://newoldage.blogs.nytimes.com/2011/03/03/government-reportfinds-elder-abuse-onthe-rise/?pagemode=print Profile of Older Americans. (2010). Disability and activity limitations. Retrieved from http:// www.aoa.gov/AoARoot/Aging_Statistics/Profile/2010/16.aspx

26  I.  OPTIONS IN LONG-TERM CARE

Ricketts, T. C. (2011). The health care workforce: Will it be ready as the boomers age? A review of how we can know (or not know) the answer. Annual Review of Public Health, 32, 417–430. Scharlach, A. (2008). Historical overview. American Journal of Nursing, 108(9 Suppl.), 16–22; quiz 22. Schulz, R., & Sherwood, P. R. (2008). Physical and mental health effects of family caregiving. American Journal of Nursing, 108(9 Suppl), 23–7; quiz 27. Schumacher, K., Beck, C. A., & Marren, J. M. (2006). Family caregivers: Caring for older adults, working with their families. American Journal of Nursing, 10(8), 40–49. Spotlight on Elder Abuse. (2011). Local triad group helps seniors protect themselves (USA). Retrieved from http://elder-abuse-spotlight.blogspot.com/2011/02/local-triad-grouphelps-seniors-protect.html Stiegel, L. (2011). Elder Justice Act becomes law, but victory is only partial. Elder abuse prevention. Retrieved from http://www.americanbar.org/content/dam/aba/migrated/aging/ PublicDocuments/eja_act_art_prtl.authcheckdam.pdf Stone, R. I. (2000). Long-term care for the elderly with disabilities: Current policy, emerging trends, and implications for the twenty-first century. Retrieved from http://www.milbank.org/ reports/0008stone/LongTermCare_Mech5.pdf Strengthening APS and informing implementation of the Elder Justice Act: Preliminary results. (2011). Retrieved from http://appleseednetwork.org/wp-content/uploads/2012/05/ Strengthening-APS-and-Informing-Implementation-of-the-Elder-Justice-Act.pdf Tavernise, S. (2011, December 2). Older people are a larger portion of U.S. population. The New York Times. Retrieved from http://www.nytimes.com/2011/12/02/us/census-findslarger-portion-of-olderpeople.html U.S. Census Bureau (2010). Additional findings on the older population. Retrieved from http:// www.census.gov/prod/cen2010/briefs.c2010br=09.pdf U.S. Department of Health and Human Services. (2010). Congressional report on the feasibility of establishing a uniform national database on elder abuse. Retrieved from http://ASPE.hhs.gov. datcp.reports/2010/elderCR.pdf U.S. Government Accountability Office (GAO). (2011). Elder justice: Stronger federal leadership could enhance national response to elder abuse (GAO-11-208). Retrieved from http://www .gao.gov/assets/320/316224.pdf Volunteers of America. (2011). Boomer bust 2011: Still unprepared and unaware. Retrieved from http://www.voa.org/Boomer-Bust-2011 Witters, D. (2011, December). The cost of caregiving to the U.S. economy. Gallup Business Journal. Retrieved from http://gmj.gallup.com/content/151049/cost-caregiving-economy.aspx?version=print Wolf, R. S., Hodge, P., & Roberts, P. (n.d.). Is elder abuse a crime? Retrieved August 17, 2013, from http://genpolicy.com/is-elderabuse-a-crime-2 Yee-Melichar, D., Renwenz-Boyle, A., & Flores, C. (2011). Assisted living administration management: Effective practices and model programs in elder care. New York, NY: Springer Publishing Company.

2 COMMUNITY-BASED PROGRAMS AND SERVICES David Werdegar Cristina M. Flores Amanda Caldwell

LEARNING OBJECTIVES On the completion of Chapter 2, the reader will be able to a variety of programs and services that are available to •  Identify  consumers in the community •  Understand the background and historical development of selected

community-based programs and services •  Describe ownership types, services provided, and clients served in

­selected community-based programs and services •  Identify licensing and regulatory issues that impact providers and

­consumers of community-based programs and services •  Become familiar with the financing of community-based programs and

services •  Learn about a model for providing a variety of long-term care (LTC)

health services and social supports in a single location, accessible to lower income older adults •  Recognize some challenges and opportunities relative to the administration and management of community-based programs and services

Community-based programs and services are designed to help consumers live as independently as possible in their own homes. We use the term home broadly to include not only one’s own home or apartment but also a variety of residential arrangements such as supportive housing or an assisted living community.

27

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In Chapter  1, home care, home health care, and hospice services were discussed in detail. This chapter looks beyond those services in one’s own home and considers a variety of community-based programs and services (senior centers, day programs, care management, programs of all-inclusive care for the elderly [PACE], and housing with services). Assisted living communities and skilled nursing facilities are not included as they are covered in depth in Chapters 4 and 6. However, community-based services are often available to clients residing in such licensed settings. This chapter includes information necessary for successful administration and management of community-based programs, such as licensing and regulatory issues and financing information. The chapter concludes with a case study of a senior campus where a comprehensive array of community-based programs and services are made available to lower income older adults residing in an urban community. The chapter summary includes the insight into the challenges and opportunities for administrators as we look ahead to the future of LTC administration as the need to serve older adults continues to grow in coming years.

SENIOR CENTERS Historical Development The first senior center in the United States was started in the 1940s in New York City (Niles-Yokum & Wagner, 2011). The program’s creation was inspired by the perceived need to offer opportunities for seniors to socialize and have a place where they could get guidance in matters related to health, nutrition, and other worthwhile services available to them in the community. Senior centers were initially developed by nonprofit organizations and local government departments (e.g., departments of social service and recreation; Gelfand, 2006). In the 1970s, federal legislation made additional funds available for the development of senior centers. An amendment to the Older Americans Act (OAA) in 1973 recognized the importance of the model and identified senior centers as a separate, needed entity and established the facilitation of public investment in senior center programs (Niles-Yokum & Wagner, 2011). Further amendments in 1978 provided the legislative authority to develop and support funding to operate additional senior centers.

Ownership There is neither any specific or standardized ownership for senior centers nor is there a specific license needed to operate one. The National Institute of Senior Centers (NISC) does, however, administer and encourage the National Senior Center Accreditation Program (Beisgen & Kraitchman, 2003). More than 200 centers nationwide have met this obligation and have received accreditation seeking to uphold this standard of programming (National Institute of Senior Centers [NISC], 2011). Accreditation provides recognition in an official capacity to demonstrate that a senior center meets nine specified standards of operation (described later in this chapter). Accreditation is a process of certification by peer-review compliance with these standards. The NISC supports a network of senior centers to make recommendations on policy and practice, support research, and promote advocacy through their process of accreditation (NISC, 2011).

2.  COMMUNITY-BASED PROGRAMS AND SERVICES  29

Services Provided Senior centers provide a congregate setting to support education and recreational activities and community involvement and participation. Senior centers vary considerably in their services, programs, activities, calendar of events, facilities, staffing, and resources (Beisgen & Kraitchman, 2003). They are not licensed to provide direct personal care services or health care. Compared to other day services (discussed later in this chapter), this is not a model intended for individuals requiring direct personal care or a high level of assistance. Transportation is usually not provided, so attendees must have a degree of physical independence and mobility to make it to the center. Depending on their funding, senior centers may charge on a sliding scale. Figure 2.1 lists common services provided at senior centers. Senior centers act as an information and referral gateway connecting participants to other community services and agencies. The OAA requires that Area Agencies on Aging (AAAs) designate focal points for comprehensive and coordinated service delivery to older persons (Beisgen & Kraitchman, 2003). The majority, approximately 60%, of operating senior centers are the designated focal points of such services, allowing older adults access to multiple programs and services available in the community (NISC, 2011).

Clients Served According to the NISC (2011), approximately 11,000 senior centers currently serve 1 million adults every day. The attendance at senior centers demonstrates that their usage by older adults is greater than any other community-based program (Gelfand, 2006). Demographics statistics show that 70% of senior center participants are women, nearly half of whom live alone. The majority of senior center users, approximately 75%, are low-income individuals who visit the center one to three times per week. The average age is 75. The majority are Whites, followed by African Americans, Hispanics, and Asians, respectively. Attendance is available on a drop-in basis, and many clients attend these programs to join the congregate meal programs or participate in offered activities. Comparisons with nonparticipant peers demonstrate overall better outcomes, such as lower levels of loneliness (MaloneBeach & Langeland, 2011) and higher

•  Meal and nutrition programs •  Information and assistance •  Health, fitness, and wellness programs •  Public benefits counseling •  Employment assistance •  Volunteer and civic engagement opportunities •  Social and recreational activities •  Educational programs •  Intergenerational programs •  Volunteer opportunities

Figure 2.1  Senior center services. Source: NISC (2011).

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life satisfaction (NISC, 2011). Research has shown that participants can experience measurable improvements in physical health as well as social, spiritual, emotional, mental, and economic well-being. As the aging cohort changes so does the demand for and interest in services. Senior centers are making efforts to meet the needs of a changing demographic. As “baby boomers” (i.e., the cohort of persons in the United States born between 1946 and 1964) now represent two thirds of the 50+ population, there is an effort to develop new services that are useful to them.

ADULT DAY CENTERS AND ADULT DAY HEALTH CENTERS Historical Development Adult day centers (ADCs) are centers that provide some level of oversight and social programming in a congregate setting. They were developed in part as a model of community-based care responding to the growing need for respite services for older adults and their families (Pratt, 2010). ADCs provide interim group care, supervision, monitoring, and assistance with daily activities within a structured on-site center. Most centers operate Monday through Friday and hold regular business hours to support day attendance 1 to 5 days a week. The ADC model emerged from the geriatric day hospital concept (Niles-Yokum & Wagner, 2011). In the 1970s, Medicare demonstration projects were funded to develop day services—to serve an increasing population of older adults with physical frailty, functional decline, and other limitations. There was a growing demand to manage the costs incurred with premature institutionalization. Family policy research indicates that although there are many benefits and rewards associated with family, or informal, caregiving, it can also be the source of stress, burden, and hardship. ADCs can reduce the strain of caregiving by helping to relieve and support the responsibilities of care. ADCs’ programming not only supports the participating clients, but also provides informal caregivers with some necessary respite. ADC attendance thus helps both clients and families in daily challenges associated with chronic disability, illness, and increasing frailty. Primary caregivers and families feel supported when continuing to provide care for a person in the home. Because much caregiving today is provided by a spouse and/or adult children, any community-based option that provides good support to the caregiver, and enables the client to remain in the home, may help to avoid unnecessary transfer to a licensed LTC facility option, such as a nursing home or assisted living. There has been significant growth in the number of adult day services available in the United Sates in recent years (National Adult Day Service Association [NADSA], 2011b). There are more than 4,600 day programs nationwide, a 35% increase since 2002 (NADSA, 2011a). Centers have significantly increased the services available, as the consumer-driven needs have demanded assistance for a more aged and medically needy population of older adults. ADCs began as a social program model (i.e., without much medical or nursing care) in the 1970s (Pratt, 2010). However, as the need for health care options has increased, adult day health centers (ADHCs) have developed, which are able to provide rehabilitative services, transitional care, and short-term rehabilitation following hospital discharge (NADSA, 2011a).

2.  COMMUNITY-BASED PROGRAMS AND SERVICES  31

Ownership Traditionally, there are two types of recognized structured day programs, both of which are licensed by states: (a) ADC or social day models and (b) ADHC or medical models. Within the ADC and ADHC models of care, there are also specialized models offering tailored, specific programming for special populations, such as dementia care. Ownership of facilities can include nonprofit, for-profit, private, and government ownership (Pratt, 2010). ADC programs can be owned and operated through affiliations with religious organizations, community centers, health care systems, hospitals, or licensed LTC facilities (Pratt, 2010). According to NADSA, approximately 78% of the adult day models are operated on a nonprofit or public basis. The remaining 22% are for-profit operations (NADSA, 2011b). As ADHCs become more recognized and utilized as a provider of health care services, there has been increased ownership by, or affiliation with, health care facilities (Pratt, 2010).

Services Provided In general, all day program facility types can be said to provide a supervised, safe, and secure environment for participants, along with recreational opportunities and socialization (NADSA , 2011a), all of which have a role in the LTC system. There are currently more than 3,500 adult day programs in operation throughout the United States, providing care for more than 150,000 older and disabled Americans (NADSA, 2011a). The primary role of an ADC is to provide a structured and safe environment for individuals who may have functional limitations and require some assistance, necessary supervision, and monitoring. ADCs are social models of care and are not able to provide direct nursing or other health care–related services. Figure 2.2 summarizes the services provided in an ADC. Transportation is usually included. Incorporated specialties can include service for a cohort with mental health needs, developmental disabilities, behavioral problems, or mental retardation. Some centers have secured further state or local funding to provide resources or referrals, such as an Alzheimer’s day care resource center (ADCRC). These centers can also provide community supports such as programs for caregivers, education, support groups, or individual counseling (AARP, 2011). ADHCs offer a medical day model. This health care–oriented option offers health, social, and recreational services. ADHCs will include the same recreational

•  A safe and secure environment •  Transportation (to and from the center) •  Meals and snacks •  Social work services •  Social and recreational activities •  Some assistance with activities of daily living •  Limited assistance with instrumental activities of daily living •  Both consumers and caregivers are served

Figure 2.2  Adult day center services. Source: Pratt (2010).

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services as an ADC, with the additional health care monitoring that the ADHC license allows. ADHCs are able to provide direct care and monitoring for a population of more dependent, frail clients needing attention with both chronic illness and direct personal care assistance. This population of clients requires further oversight due to frailty, cognitive deficits, or physical, social, or mental disabilities. Staff can assist with activities of daily living such as feeding or bathroom monitoring, standby assistance for transfers, or medication oversight. These centers may also provide direct health care services and chronic disease management alongside the holistic services provided at social programs. Most centers are able to encourage rehabilitation and offer a range of health and social services, as well as support for families. Although the licensing and direct services vary by state, in general ADHCs can provide rehabilitative therapies (e.g., physical therapy, occupational therapy, and speech therapy), exercise, nursing care, diet and nutrition counseling, social stimulation, and activities to reduce isolation and improve quality of life. Transportation is also usually integrated. ADHCs are a notable source used to support better outcomes for health maintenance. ADHCs are designed to maintain and/or improve the functional status of participants by providing a secure and safe environment with both health services and social interaction that are tailored to meet the individual needs and level of functioning of participants (NADSA, 2011a). Figure 2.3 lists the types of services offered in an ADHC.

Clients Served The ADC model is most appropriate for individuals who may require some personal care assistance but have limited health care needs. This program serves clients who may benefit from oversight or assistance due to symptoms related to dementia or other cognitive deficits. The ADC model is appropriate for clients who may wander or need oversight for other symptoms related to cognitive impairment. Staff can provide appropriate accommodation and support for persons who cannot be left at home unattended during the day. Therefore, consumers can also benefit from the relief and respite the model provides to caregivers. This model best supports family caregivers who may have to work during the day, unable to leave a loved one unattended and alone at home. The program focuses on socialization and recreational activity and offers stimulation to prevent boredom, loneliness, and isolation. ADC staff is able to monitor

•  A safe and secure environment •  Social and recreational activities •  Transportation (to and from the center) •  Meals and snacks •  Social work services •  Nursing services (including medication oversight) •  Assistance with activities of daily living •  Assistance with instrumental activities of daily living •  Physical therapy •  Occupational therapy •  Speech therapy •  Both consumers and caregivers are served

Figure 2.3  Adult day health center services. Source: Pratt (2010).

2.  COMMUNITY-BASED PROGRAMS AND SERVICES  33

and cue participants, and offer direct hands-on attendant care for limited functional abilities. However, ADCs are not licensed to provide any on-site health care maintenance, such as medication oversight. The population served can have functional limitations and cognitive deficits without significant health care needs. Due to the social focus of this program, it can augment or supplement activity, for both the community-dwelling residents as well as residents of licensed institutional settings, such as assisted living. ADHC participants often suffer from multiple chronic conditions and functional limitations of varying etiology. Those served are people with chronic and complicated health needs—the population is frail, with multiple care needs. ADHC participation is associated with physical and emotional health problems affecting daily activities. Because of the services provided and the cohort that is served, ADHC is an option in the community-based continuum of care that serves as an alternative to placement in an institutional-based LTC environment. According to NADSA, 52% of all participants attending nationally have some level of dementia. Other chronic illnesses and diseases common among participants include chronic hypertension, physical disability, cardiovascular disease, diabetes, mental illness, and developmental disability (NADSA, 2011a).

CARE MANAGEMENT Historical Development In the early 1900s, public health nurses and social workers coordinated services through the Department of Public Health (Case Management Society of America [CMSA], 2008). As the coordination of services became more complex, the difficulty to navigate the system of care called for a community-based option to support the management of medical costs and investigate options to remain at home. The foundation of this type of service coordination has its beginnings in the social services (Cress, 2012). Care management supports the networking of a multidisciplinary intervention and care planning effort. In the 1970s Medicaid and Medicare demonstration projects employed social workers and other human services workers to arrange and coordinate medical and social services within the community (CMSA, 2008). The motivation for this funding and legislative action was to design and support effective community-based options designed for low-income and frail older adults for cost containment—to maintain this population within the community and prevent unnecessary institutionalization and hospitalization (CMSA, 2008). In 1978, the OAA authorized case management for elders through state AAAs, throughout the United States (CMSA, 2008). Contemporary care management rose from the need to coordinate and oversee fragmented and complex services and care delivery systems. Care management can increase access and quality efforts to control costs, with the goal of supporting independence and a quality of life for community-dwelling older adults (Cress, 2012).

Ownership Care management has been practiced by a variety of disciplines, primarily within the fields of nursing and the social service industry. There are many types of care

34  I.  OPTIONS IN LONG-TERM CARE

management, defined by the professional network practicing the coordination of care. Care managers provide service in a variety of specialties, including health care, acute care settings, hospice and palliative care, mental health, home care, addiction, LTC and rehabilitation, aging, HIV/AIDS, disabilities, occupational services, child welfare, and immigrant/refugee services (CMSA, 2011b). Care managers are employed in the public, nonprofit, and for-profit sectors. For the purposes of this chapter, the term care management refers to the social service coordination within a community-based delivery of services. The terms care and case are often used interchangeably, but a case manager and care manager serve the same role and purpose. The NCOA argues that the term care management is more appropriate, as it conveys the management of care as opposed to the management of the client, or individual (CMSA, 2008). A care manager is an advocate, a person who acts to assess needs and coordinate referrals that support and augment needed direct services and assistance. Care management is defined as a process of assessment, planning, coordination, and the facilitation of options and services to meet an individual’s health and human service needs (CMSA, 2008). Through communication and advocacy, a care manager will pursue appropriate referrals to available resources, to promote quality, and cost-effective interventions and outcomes (CMSA, 2008). As a consumer, one should be aware that care and case management is typically not a licensed or regulated profession per se. Individual providers can be licensed health care professionals (e.g., registered nurse, licensed clinical social worker) or can practice independently. Individuals in the practice of care management, however, may seek certification within their individual specialties (CMSA, 2011a). Accreditations and certifications can be obtained to demonstrate that a standard of competency and knowledge is met in the field of practice. Due to the requirements necessary for membership, and continuing education required for recertification, seeking individual certification can demonstrate a minimal skill set, educational competence, a standard to practice, and ongoing professional development (CMSA, 2011a). There are several organizations that exert influence and oversee the standards of education, training, and certification of case management. Certification is most commonly provided by a nationally recognized agency, such as the Commission for Case Management Certification (CCMC) or CMSA. For the field of geriatric care management, the National Association of Professional Geriatric Care Managers (NAPGCM) oversees the certification process. Further credentials can be sought by individuals in the practice of care management after obtaining certification as well. Some examples of certification include care manager, certified (CMC), accredited case manager (ACM), or certified case manager (CCM; CMSA, 2008). Due to a believed lack of oversight or licensing, an emerging profession to specialize and serve a population of older adults has emerged: geriatric care management. The geriatric care manager (GCM) rose as a specialty in the late 1900s in response to the fragmented continuum of care within the field of aging (Cress, 2012). Care management for older persons emerged due to the rapid growth of the older adult population as well as the increased cost of health care (Cress, 2012). A professional GCM is a good resource for consumers navigating the complex aging network of services. A GCM is an individual with a core background or education in gerontological competency, training, and practice. Geriatric care management is not usually covered by public insurance or commercial health insurance (CMSA, 2011c). Some LTC insurance policies may cover GCM services and nonprofits or public agencies may offer these services on a sliding scale basis. However, this specialty is usually

2.  COMMUNITY-BASED PROGRAMS AND SERVICES  35

a private-pay situation. Accreditation and individual certification can be obtained through the NAPGCM (Niles-Yokum & Wagner, 2011).

Services Provided Care management is a core element of the health delivery system across the continuum of care. A care manager must first conduct an assessment and develop a care plan that outlines necessary interventions and recommendations for services. Assessment should consider physical, cognitive, and psychosocial components. It is important to identify presenting issues and supports, such as family, financial situation and insurance status, medical and environmental factors, as well as current capacity; both functionally and in terms of one’s mental status. Once a plan of care is established, it is the role of the care manager to implement, and then oversee and monitor the evaluation and revision of services in place. Care management is resource management—as conditions or circumstances change, so does the plan of care—to improve the continuity and effectiveness of services. This process focuses on an individualized assessment and need, is goal oriented, and promotes the optimal level of functioning and independence, taking into account the wishes and selfdetermination of the client. Through the development of an individualized plan of care, a care manager can evaluate home safety, help to identify needs and goals, and make appropriate recommendations for referrals and services. The care manager can facilitate connections to needed services based on this assessment of needs, and mediate communication and effective advocacy to support independence and both maintain and improve safety and any required modifications to the home. Care management should include a thorough assessment and evaluation of needs, appropriate care planning, service coordination and referrals, and continuous monitoring and adjustment of a care plan, as needed.

Clients Served The specialty of geriatric care management and other community case management options provide older and disabled adults with a model of care delivery in every setting of the health care continuum. Care management can serve to assess the situation of an individual, and then coordinate and follow-up on the care needed. Through an assessment of needs, the care manager coordinates health and human services and can also sometimes mediate the needs of an individual as well as family members and other extended consumers, such as caregivers. In this way, care management can also be a benefit to family members. As many people tend to live far distances from older family members, care managers can help to facilitate conversation, communication, and stay concerns by providing a system of oversight and support. Historically, frail older adults have been the primary consumers of case management services (Cress, 2012). Care management provides an excellent approach to assess needs, coordinate services delivery, and ensure the safety of the living arrangement in the community. Older and disabled adults with complex health and social problems can greatly benefit from care management to assess common geriatric problems and implement appropriate interventions and see that necessary

36  I.  OPTIONS IN LONG-TERM CARE

support services are made available (CMSA, 2008). This population may have special circumstances that must be considered such as (a) elder abuse, (b) depression, (c) cognitive decline, (d) issues of polypharmacy and problems with medication management, (e) safety issues, (f) falling, (g) isolation, and (h) lack of mobility. Care management helps to navigate the fragmentation of applicable services within the network of the care continuum (Cress, 2012). The specialized help of a GCM and use of other community-based programs can provide a framework to best meet the needs of aging adults, arrange for services, and provide oversight. This is of increasingly recognized importance.

PACE Historical Development The inception of the PACE model of care can be traced to the 1970s. Both federal and state governments became increasingly interested in the development of community-based health care and supportive services. Waivers of federal Medicaid requirements were granted to allow state governments to create demonstration projects for frail and disabled beneficiaries (Centers for Medicare & Medicaid Services [CMS], 2011b). One such program was PACE. Government interest was stimulated by a consumer-driven effort demanding patient-centered health care, and more community-based options as well as governmental concerns about the costs in health care delivery systems and insurance programs, such as Medicare and Medicaid, related to an increasing population of older adults. Community leaders in the Chinatown–North Beach districts of San Francisco designed a new model that created services on an LTC continuum. The new program, On Lok Senior Health Services, provided a community-based system of care featuring comprehensive service delivery in the home and day center as an alternative to nursing home care. It met the identified need in the community for elders in immigrant families requiring LTC services; the On Lok enrollees were frail older adults, considered the most at risk for institutional placement at various sites throughout the country (CMS, 2011b). The model developed by On Lok was tested through a series of demonstration projects through CMS services that began in the 1980s (CMS, 2011b). The success of these demonstration programs led to the permanent designation of PACE as a Medicare program (Gross, Temkin-Greener, Kunitz, & Mukamel, 2004). The Balanced Budget Act of 1997 established PACE as a recognized provider under both the Medicare and Medicaid programs (National Pace Association [NPA], 2011). The PACE program has continued to be a successful model of LTC offering comprehensive health care and support services to a vulnerable and costly population—an approach that for many frail older adults has great efficacy and costeffectiveness when compared to institutional placement (CMS, 2011b).

Ownership The PACE system of care is a unique managed care plan of comprehensive health services operated by a not-for-profit entity. The CMS maintains oversight for

2.  COMMUNITY-BASED PROGRAMS AND SERVICES  37

c­ ompliance with the Medicare health and safety standards (CMS, 2011). The national PACE program allows individual states to provide persons receiving Medicare and Medicaid benefits to receive PACE services as an optional Medicaid benefit. PACE sites are licensed by the state and certified for Medicare and Medicaid. PACE is based on a financing system providing payment and reimbursement at a fixed, or capitated, rate per month for each person enrolled (NPA, 2011). The global capitated funding mechanism covers the delivery of all needed services in contrast to traditional fee-for-service with no particular coordination of care (CMS, 2011b). In summary, PACE is a capitated managed care benefit featuring a comprehensive service delivery system with integrated Medicare and Medicaid financing (CMS, 2011b). When enrolled, the PACE program becomes the sole source of services for Medicare- and Medicaid-eligible participants (CMS, 2011b). Funded through Title III of the OAA, state revenues, and the Medicaid home- and community-based waiver program (CMS, 2011), PACE providers assume full financial and professional responsibility for a participant’s total and complete care (CMS, 2011b). As of 2011, there were 80 PACE programs operational in 30 states.

Clients Served The PACE program provides comprehensive community-based care and services to frail and older adults who may otherwise require residence in a nursing home. There are strict guidelines for eligibility. The participant must be (a) 55 years of age or older, (b) certified by the state to meet level of care standards (i.e., eligible for a nursing facility level of care), (c) able to live safely in the community at the time of enrollment, and (d) residing within a PACE organization service area (CMS, 2011b). Most PACE enrollees are dually eligible for Medicare and Medicaid benefits. Some private-pay arrangements are also possible. Once a member of PACE, there are no deductibles, coinsurance or co-pays associated with medications, other prescribed drug therapies, direct services, or medical care approved and deemed necessary by the PACE care team (NPA, 2011). If one has both Medicaid and Medicare, the service program is most often fully covered. However, if one has Medicare, but not Medicaid, there may be a significant co-pay associated with membership; of course, all Medicare-covered services are paid for by Medicare. Even without Medicare or Medicaid, one can still become a member of PACE by paying a monthly premium as a private-pay health care option (NPA, 2011).

Services Provided The all-inclusive approach to service delivery, as the name suggests, is quite comprehensive. Services include all primary care services, social services and social work assistance, restorative therapies, personal care and supportive services, prescribed medications/drugs, nutritional counseling, recreational therapies, and daytime meals (CMS, 2011b). The plan of care is based on an individual assessment of needs by the PACE team of professionals. PACE services include, but are not necessarily limited to, Medicare- and Medicaid-covered services. The PACE provider

38  I.  OPTIONS IN LONG-TERM CARE

organization can contract with any needed specialists, but the core staff is composed of a multidisciplinary professional team, as illustrated in Figure 2.4. The purpose of the PACE model is to serve individuals with chronic care needs, comprehensively, in their own homes, permitting them to live in the community for as long as it is safe to do so. PACE is thus a desirable alternative to the options of long-term institutional care. PACE providers assume full financial risk and responsibility of care for the enrolled participants, integrating both acute and LTC. If and when it is no longer safe for the individual to remain in the home, placement in a licensed housing option would be arranged. At this time, the NPA reports that only about 7% of PACE participants nationally reside in a nursing home (NPA, 2011). If an enrollee in the program does require a higher level of care and is transferred into an institutionalized setting, the PACE program continues to oversee and coordinate the care (NPA, 2011). PACE features an interdisciplinary primary care team approach to care and relies on an adult day program as a vital component of service delivery. The on-site services are managed at an ADHC, but the center includes a primary care clinic. Figure 2.5 lists the typical services available at a PACE site. A further and important benefit of the day program is the caregiver respite for the family during the time the participant is at the PACE center.

•  PACE center director •  Primary care physician •  Nurse •  Social worker •  Physical therapist •  Occupational therapist •  Recreational therapist / activity programming •  Dietician •  Home care liaison •  Health care workers/aids

Figure 2.4  The core PACE health care team. Source: CMS (2011b).

• Primary care (Including doctor and ­nursing services) • Medical specialists (such as audiology, dentistry, optometry, podiatry) •  Hospital care •  Medical specialty services •  All necessary prescription drugs •  Nursing home care •  Emergency services •  Home care •  Home health care •  Adult day health care 

Figure 2.5  PACE services provided. Source: CMS (2011b).

•  Recreational therapy •  Physical therapy •  Occupational therapy •  Speech therapy •  Meals •  Dentistry •  Nutritional counseling •  Social services •  Laboratory / x-ray services •  Social work counseling •  Transportation •  Any other services, deemed as necessary

2.  COMMUNITY-BASED PROGRAMS AND SERVICES  39

PACE has been successful in integrating both acute and LTC service delivery and financing. It maintains the ability of participants to remain at home and in the community and it operates at a lower cost—compared to other traditional fee-forservice and institutional care options available (Gross, Temkin-Greener, Kunitz & Mukamel, 2004).

HOUSING WITH SERVICES Historical Development Housing Development for Seniors Although the Fair Housing Act of 1965 protects all citizens from discrimination on the basis of race, color, national origin, religion, sex, or handicap status, an addendum in 1988 created an exemption for senior housing (U.S. Department of Housing and Urban Development [HUD], 2011a). This exemption was intended to preserve housing specifically designed to meet the needs of senior citizens. Housing is exempt from the law’s familial status requirements, provided that •  U.S. Department of Housing and Urban Development (HUD) has determined that the dwelling is specifically designed for and occupied by older adults under a federal, state, or local government program •  It is occupied solely by persons who are 62 or older •  It houses at least one person who is 55 or older in at least 80% of the occupied units and adheres to a policy that demonstrates intent to house persons who are 55 or older

Housing With Services Housing with services is not a new phenomenon in LTC. Historically, some kinds of residential- and community-based care arrangements have long been available. Senior housing, although often referred to as supportive housing, can greatly vary in the degree of available services: they range from completely independent living situations to options that have an array of services. Here we focus on senior housing in the community that offers some degree of LTC services and supports. Excluded, as noted earlier, are licensed assisted living communities (see Chapter 4) and skilled nursing facilities (see Chapter 6).

Types of Senior Housing With Services The following table illustrates common types of senior housing (see Table 2.1).

Ownership Like most other community-based enterprises, senior housing with services may be owned by either for-profit or nonprofit organizations. Some buildings, typically for-profit owned, are specifically built to be attractive to aging adults with many amenities, such as on-site dining, recreation, and fitness centers. These services can be quite expensive. In contrast, there are senior housing developers subsidized by different municipalities that offer more affordable options to lower income older

40  I.  OPTIONS IN LONG-TERM CARE

TABLE 2.1  Senior Housing Types Independent living units Also referred to as Congregate housing Retirement housing Supportive housing Housing with services

Multiunit senior housing developments that may provide supportive services such as meals, housekeeping, social activities, and transportation. Independent living units typically encourage socialization by provision of meals in a central dining area and scheduled social programs (Senior Housing Net, 2011). These units do not routinely provide assistance with activities of daily living, medications, and health care (National Investment Center, 2011). However, there is a trend toward more and more independent living housing allowing additional health and medical services to be provided. Commonly, the housing itself is not licensed, but residents may receive home health care services from an outside agency, that is (Schless, 2007).

Continuous care retirement communities (CCRCs)

Housing planned and operated to provide a continuum of accommodations and services for seniors, including, but not limited to, independent living, congregate housing, assisted living, and skilled nursing care. A CCRC resident contract often involves either an entry fee or buy-in fee in addition to monthly service charges, which may change according to the medical services required. Entry fees may be partially or fully refundable. The fee is used primarily as a method of privately financing the development of the project and for payment for future health care. CCRCs are typically licensed by the state (Senior Housing Net, 2011). Note: See Chapter 5 for further details on CCRCs.

Affordable housing plus services (AHPS)

AHPS is emerging as a newer model in publically subsidized housing communities. It is intended to integrate independent, unlicensed, and primarily subsidized multiunit housing environments for older adults with service and supports (Harahan, Sanders, & Stone, 2006). The American Association of Homes, identifies AHPS as having three essential elements: •• Independent, unlicensed, primarily subsidized, multiunit housing where large numbers of low- and modest-income older adults live in close proximity. •• Health-related and supportive services, funded separately from the housing, and available to at least some older residents (e.g., personal care, housekeeping, meals, transportation, health and wellness services, etc). •• A purposeful linkage mechanism connecting residents to needed health-related and supportive services so that they are able to “age in place” in the face of declining health and increasing disability.

adults. For example, the Supportive Housing for the Elderly Program (Section 202) is a limited subsidy from the federal government administered by HUD. HUD provides capital advances to finance the construction, rehabilitation, or acquisition of structures that serve as supportive housing for very-low-income older adults, including frail older adults, and provides rent subsidies for the projects to help make them affordable (HUD, 2011b).

2.  COMMUNITY-BASED PROGRAMS AND SERVICES  41

Services Provided As seen in Table 2.1, the types of senior housing and the services they may offer are quite varied. Commonly provided services are •  A secured building •  Planned activities and social events •  Common areas for socializing with other residents •  Shared meals •  Housekeeping •  A manager on site Additional services that may be available are •  Transportation •  Laundry •  Monitoring of health status •  Assistance with activities of daily living •  Help with medication management •  Intermittent skilled care, such as diabetic management and wound care •  Home health care •  Case management

Clients Served Age-restricted housing typically serves seniors older than 55 years of age. Historically, higher functioning seniors predominately lived in senior housing. It remains true that the majority of residents enter senior housing when they are active and somewhat healthy. However, with the trend toward more services being available on site at senior housing dwellings, many seniors, if it is affordable, are able to remain in independent housing even as they develop an increase in care needs. Additionally, there are income requirements associated with highend private-pay communities as well as eligibility requirements related to subsidized housing.

OTHER COMMUNITY-BASED PROGRAMS AND SERVICES Under the OAA, the state Agencies on Aging are charged with the responsibility of promoting comprehensive and coordinated services and systems of care for older Americans. Consistent with this responsibility, the state will oversee programs for both home- and community-based programs (Gelfand, 2006) under the auspices of the OAA signed into law in 1965. Many of the features of the Act were influenced by the 1961 White House Conference on Aging, outlining initiatives that have ensured a wide range of community-based services, including congregate meals and meal sites, home-delivered meals, adult day services, transportation, information and referral assistance, advocacy, telephone reassurance, legal resources, and employment services. The basic purpose of the OAA is to provide funds to the individual states for direct services, training, and research for the benefit of the older and dependent adult (Gelfand, 2006). These activities are coordinated through the Administration on Aging, reporting directly to the Department of Health and Human Services. As

42  I.  OPTIONS IN LONG-TERM CARE

previously discussed, many of these services are offered through a focal community point, such as a senior center. The OAA requires that AAAs act as a local community liaison to disseminate and educate regarding available services for older persons. AAAs must designate a system of a comprehensive coordination of information regarding service delivery. Senior centers are most often designated as the facility to meet this requirement. AAAs may also provide direct information and referral, and can be a good resource to better understand and illustrate the community-based services available. The OAA is largely responsible for the structure and development of the aging network of community-based services currently available (NilesYokum & Wagner, 2011). Through providers on both the state and federal levels, the objective of the OAA has the purpose of establishing and enacting direct service policy to assure the well-being of older adults (Niles-Yokum & Wagner, 2011). Additional community resources authorized through the OAA may include •  Health insurance counseling and benefit assistance •  Information and referral (I&R) •  Aging and disability resource centers (ADRC) •  Eldercare locator assistance (nationwide toll-free telephone service to assist older adults and their caregivers find local services for seniors) •  Volunteerism and civic engagement opportunities •  Mental health services •  Resources for housing •  Transportation •  Elder justice advocates •  Nutrition programs •  Medical clinic services •  Emergency/disaster preparedness •  Disease prevention and health promotion •  Education and continued learning opportunities •  Assistance and support for family caregivers •  Home care, chore, and personal care assistance (Niles-Yokum & Wagner, 2011) The OAA authorizes direct services and programs, and ensures the provision and access to comprehensive and coordinated service systems, navigating the challenges of the aging network—all to allow older adults to remain independent and at home in the community. The OAA also specifically seeks protection for the vulnerable, and mandates elder rights and provides for the protection and the prevention of elder abuse, neglect, and exploitation. The LTC Ombudsman Program investigates and resolves complaints on behalf of residents within LTC environments. For older adults and disabled and dependent adults within the community, state adult protective services (APS) agencies respond and investigate any reported or suspected violations of this protection (see Chapter 8 for further information on the Prevention of Elder Abuse and Neglect).

LICENSING, REGULATIONS, CERTIFICATION, AND ACCREDITATION Community-based programs and services are affected by varying degrees of regulations and licensing requirements at local, state, and federal levels. Further­ more, some may require certification to be eligible for Medicaid or Medicare

2.  COMMUNITY-BASED PROGRAMS AND SERVICES  43

r­ eimburse­ment and others may choose to seek accreditation. Here we illustrate licensing, regulations, certification, and accreditation. Keep in mind that there are additional local, state, and federal laws and regulations that all business must follow (e.g., zoning, employment laws, safety codes, etc.), which is beyond the scope of this work. Note the following relevant concepts. Table 2.2 follows and demonstrates how each of the community-based programs and services discussed in this chapter may be affected.

TABLE 2.2  Community-Based Programs and Services: Licensing, Regulations, and Certification Program/Service

Licensing, Regulations, Certification, and Accreditation

Senior centers

Senior centers are typically not licensed, as they do not provide direct care and services. However, to advance the quality of senior centers nationwide, The National Institute of Senior Centers (NISC) has developed nine standards of excellence for senior center operations (NISC, 2011). These standards serve as a guide for all senior centers to improve their operations today. NISC also offers the nation’s only national senior center accreditation program. Accreditation provides official recognition that a senior center meets the nine standards of senior center operations. The nine standards include (a) Purpose and planning, (b) Community connections, (c) Governance, (d) Administration and human resources, (e) Program development, (f) Evaluation, (g) Fiscal and asset responsibility, (h) Records and reports, and (i) Facility and operations.

Adult day care (ADC); Adult day health care (ADHC)

The majority of states approach adult day care regulation by requiring licensure or certification in accordance with state standards. Twentyfive states require licensure, 10 states require certification, and 4 states require both licensure and certification. Thirteen states require adult day care providers to seek approval from or enter into some type of agreement with a state agency. Ten states require certification in place of licensure. Only four states require both a license and certification. Rules, regulations, and resources vary by state (Siebenaler, O’Keeffe, O’Keeffe, Brown, & Koetse, 2005). Providers should become familiar with local and statewide licensing/ certification requirements, zoning regulations, and safety codes (NADSA, n.d.).

Care management/ Case management

Care management/case management itself is typically not licensed or regulated. However, individual providers are often licensed health care professionals (e.g., registered nurse, licensed clinical social worker). Individuals may also seek certification and/or accreditation in their individual specialties (e.g., National Association of Professional Geriatric Care Managers; care manager, certified; accredited case manager; certified case manager).

Program of allinclusive care for the elderly (PACE)

Centers for Medicare & Medicaid Services (CMS) maintains oversight for compliance with the Medicare health and safety standards (CMS, 2011b). PACE sites are licensed by states and certified for Medicare and Medicaid.

Housing with services

Programs and services are most often not provided by the housing organization (Schless, 2007). Services may or may not require licensure. For example, if there are adult day health care services onsite, it may be licensed by the state and certified by Medicare.

44  I.  OPTIONS IN LONG-TERM CARE

•  License—An agency or government-granted permission issued to either an individual and/or organization to engage in a given occupation or service on finding that the applicant has attained the degree of competency and met educational requirements necessary to ensure that the public health, safety, and welfare are reasonably well protected. •  Regulation—Legal requirements or restrictions imposed and often monitored by a government authority. •  Certification—State government agencies inspect health care providers, including home health agencies, hospitals, as well as other health care providers. These providers are approved or certified if they pass inspection to the standards set by the CMS. Medicare and Medicaid only reimburse for care given by providers who are Medicare certified. Being certified is not the same as being accredited (Medicare.gov, 2011). •  Accreditation—In the United States, accreditation is voluntarily sought by businesses, organizations, and institutions as a means of establishing credibility in their market. It is about identifying what it means to provide quality services and setting required standards of operation to provide those services within a specific industry. The accrediting agency then issues official authorization or approval to those persons or entities that are in compliance with those standards (CMSA, 2011a).

FINANCING The financing of community-based programs and services comes from a variety of sources, including Medicare, Medicaid, private insurance, and private pay. Medicare is the primary payer source for acute care costs, but typically does not cover social programs, such as adult day care. Table 2.3 illustrates possible funding sources for the community-based programs and services discussed in Chapter 2.

TABLE 2.3  Funding Sources for Community-Based Programs and Services Free Senior centers

X

Private Private Pay Insurance Medicare Medicaid

LTCIa

X

X

X

Adult day care/ adult day health care

X

Care/case management

X

Program of AllInclusive Care for the Elderlyb (PACE) Housing with services

VA Benefitsa

X

X

X

X X

X

X

X

X

X

Note: aPlans and eligibility vary. bThe majority of PACE enrollees are dually eligible for Medicare/Medicaid; however, there are options available for others who do not have both Medicare and Medicaid. LTCI, long-term care insurance.

2.  COMMUNITY-BASED PROGRAMS AND SERVICES  45

CASE STUDY: THE SENIOR CAMPUS OF INSTITUTE ON AGING In the winter of 2011, Institute on Aging (IOA), a nonprofit service provider in San Francisco, California, opened its new IOA Senior Campus (see Exhibit 2.1), a model of affordable housing plus services (AHPS). The details of the AHPS model are seen in Table 2.1 earlier in this chapter. The Senior Campus offers IOA’s comprehensive array of health and social services. They include geriatric medical and nursing care, case management, geriatric assessment, and mental health services. There are also day social programs; home care; fiduciary services; and a variety of art, cultural, and educational programs. A special feature of the Senior Campus is its colocation, in the same building, with affordable senior housing. The nonprofit housing developer, Bridge Housing, and the IOA have a shared mission of providing “affordable housing, health care and community programs to help older adults live as independently as possible.” One third of the housing units are set aside for more frail lowincome seniors who are enrolled in the IOA’s PACE program. A full-time housing manager and service liaison worker help to connect senior residents to appropriate IOA services and other community services to promote aging in place. Table 2.4 illustrates the breadth of IOA services available to both residents of the building and members of the surrounding community. IOA has developed a rigorous plan for evaluation of the Senior Campus. Residents will be followed closely as part of a research study to assess the success of the program, using periodic measures of health status, service utilization, and quality of life.

EXHIBIT 2.1  The Senior Campus of Institute on Aging, San Francisco

46  I.  OPTIONS IN LONG-TERM CARE

TABLE 2.4  Institute on Aging Services Adult Day Programs

Service Description

Irene Swindles Center for Adult Day Services

A social day program that serves individuals with mild to moderate memory loss. Swindles provides a social environment, meals, exercise, planned activities, and personal care as needed. Activities are tailored to the mental, emotional, and physical needs of adults with early stage memory loss and are customized to each individual’s ability and interests. Transportation to and from the center and snacks and lunch are provided.

Ruth Ann Rosenberg Adult Day Services

This day program offers a warm, friendly, safe environment for adults in the middle or later stages of memory loss and/or frail physical health. In addition to a wide variety of structured activities, Ruth Ann Rosenberg Adult Day Services is designed to meet the needs of those individuals requiring a higher level of assistance in areas such as walking, eating, and using the bathroom. Transportation to and from the center and snacks and home-style meals are provided.

Alzheimer’s Day Care Resource Center

IOA’s Alzheimer’s Day Care Resource Center (ADCRC) offers personalized, dignified care specifically for Alzheimer’s patients. Specialized activities encourage individual expression, engagement, mental stimulation, and physical health. The Center is located within IOA’s Ruth Ann Rosenberg Adult Day Services program.

Case Management    Services

Service Description

Multipurpose Senior Service Program

When everyday tasks such as cooking dinner, getting to the doctor, or managing money become more difficult, MSSP is available at no charge to provide needed support and enable people to continue living in their own homes. Through the care management services of MSSP, a care manager or nurse visits a client at home to discuss his or her needs and the services that might be helpful. With this information, a care plan is developed and appropriate services are arranged. The care manager continues to stay in close touch, working together with the client to adjust the care plan as necessary. Multipurpose senior services program (MSSP) is designed for adults 65 years or older living in San Francisco with Midi-Cal coverage. Funded by the state and federal government, MSSP is administered through the California Department of Aging

Older adults care management (OACM)

OACM is a licensed home health agency providing care management and consultation as well as quality home care and personal care assistance. OACM’s care management services begin with an assessment of the client’s needs and wants. The care manager then develops an individualized plan, evaluates the home for safety concerns, and arranges services such as home care, housekeeping, transportation, and meal preparation. Care managers provide medical care coordination, including accompaniment to medical appointments and medication management. A professional and experienced presence at and following medical appointments, the care managers can serve as the eyes and ears for long-distance loved ones, offering peace of mind to seniors and their families. (continued)

2.  COMMUNITY-BASED PROGRAMS AND SERVICES  47

TABLE 2-4  IOA Services (continued) Case Management    Services

Service Description

Care Management and Fiduciary Services (CMFS)

IOA’s Support Services for Elders coordinates in-home care support, medical care coordination, and financial and legal services. Care managers coordinate health care needs and medical appointments, arrange for household support, and assist with filing medical claims. CMFS’ professional fiduciary services help clients plan ahead, including arranging power of attorney and providing referrals for legal assistance. Governed by the California Probate Code, CMFS’ professional fiduciaries can act as attorney-in-fact, trustee, or designated agent.

Community Living Fund

The Community Living Fund (CLF) assists with the transition of individuals who have spent years living in hospitals or care facilities and who wish to return to living in the community. CLF also provides services to individuals living in the community who are at imminent risk of institutionalization.

Counseling Services

Service Description

Psychological services

IOA’s Department of Psychology provides comprehensive mental health services tailored specifically to the needs of older adults. Experienced clinicians specialize in understanding the effects of aging on the body and the mind, and deliver caring and culturally sensitive support where it is most convenient for the client—at home, residential communities, day programs, or in their offices. Services include individual counseling, support groups, memory assessments, and psychological testing and assessment.

Center for Elderly Suicide Prevention

Older adults often face a multitude of changes and stresses in relation to the aging process, including health concerns, physical limitations, financial problems, and loss of loved ones. These changes may trigger depression, grief, a sense of isolation, or thoughts of suicide. Institute on Agni’s Center for Elderly Suicide Prevention (CESP) focuses specifically on the needs of older adults, providing connection, compassionate counseling, assessment, and crisis intervention. A 24-hour support line, the Friendship Line, reaches out to older adults by phone, offering support, reassurance, counseling, crisis intervention, abuse prevention, medication reminders, wellbeing checks, and information and referrals. Trained staff and compassionate volunteers receive calls and make outgoing calls, offering an ongoing connection for many depressed or lonely older adults. Any person aged 60 years or older, his or her family members, or any concerned friends can call the Friendship Line and speak with a caring staff member or volunteer. The process of aging can be disorienting, especially when accompanied by chronic illness, loss of loved ones, or abuse. Caring for loved ones experiencing chronic illness and memory loss is also a challenge. Sometimes it helps to be with others. Meeting with others can help an individual through times of great loss, trauma, disorientation, and change. Support groups offer individuals an opportunity to share their similar experiences and support one another. They provide a safe environment to work through pain and confusion under the guidance of a trained professional. IOA offers a number of groups, including grief and loss, chronic illness, and memory loss. IOA also provides a support group specifically for caregivers supporting family members through the pain of memory loss, dementia, or Alzheimer’s.

The Friendship Line

Support groups

(continued)

48  I.  OPTIONS IN LONG-TERM CARE

TABLE 2-4  IOA Services (continued) In-Home Care Services Older Adults Care Management

  Memory Care and Assessment Services

Service Description Older Adults Care Management (OACM) is a licensed home health agency providing quality home care, personal care, and professional care management. OACM’s in-home care services range from light housekeeping and laundry to escorted travel and bookkeeping services. Home care aides also provide personal hygiene support, medication monitoring, and meal preparation. Service Description

Geriatric Assessment Service

IOA provides memory and cognitive assessments for seniors and older adults. Their Geriatric Assessment Service is staffed with a licensed neuropsychologist. Assessments are thorough and cover an array of needs that may affect a person’s memory, including medical, psychological, and social issues. Our multidisciplinary approach brings in professionals with specialties in medicine, care management, psychology, neuropsychology, and occupational and physical therapy to thoroughly assess an individual’s medical needs, provide diagnosis, and recommend treatment and care options.

Program of All Inclusive Care for the Elderly

On Lok Lifeways is a certified PACE program (Program of AllInclusive Care for the Elderly). This unique HMO-style health plan was pioneered by On Lok in the 1970s as an alternative to nursing home care and became the model for a national program. As the name conveys, Lifeways provides “all-inclusive” care for adults 55 or older, enabling participants to continue living at home for as long as possible. IOA operated two of On Lok Lifeways centers in San Francisco for seniors experiencing memory loss. On Lok’s all-inclusive care features full medical care (both acute and long-term), prescribing drugs, adult day care, personal care, physical therapy, transportation, and home care. San Franciscans who are 55 or older experiencing ongoing medical problems and who need daily help with bathing, walking, eating, or dressing are eligible. On Lok’s services are particularly geared toward individuals for whom nursing home placement is a consideration but who would prefer to remain at home (i.e., an apartment in the Senior Campus building).

SUMMARY LTC is a growth industry for obvious reasons. The most striking demographic change in the United States and in most developed nations is the aging of the population. People are living much longer. Dr. Robert Butler, the father of modern geriatrics refers to this as “the Longevity Revolution.” This increased longevity has vast implications, many still unforeseen, for all aspects of society. We are only beginning to appreciate the impact it will have on health care and associated social services. The last 30 years have witnessed significant development of home and community-based services for older adults. Some of the key features of these LTC services have been outlined in this chapter. These developments reflect the transformations in attitudes about aging and deepening understanding of the

2.  COMMUNITY-BASED PROGRAMS AND SERVICES  49

r­ esponsibilities entailed in provision of health and social services to an aging population. The primary motivation for these developments has been the desire to find alternatives to institutional care and allow frail older adults and disabled adults the ability to continue living at home and in the community. Thus, they may remain in familiar surroundings and cherished relationships and stay as independent as possible, with supportive help as needed.

Challenges and Opportunities Now looking forward, the greatest impetus for development of noninstitutional LTC services stems from the urgent necessity of finding more economical approaches to health care and social support of an aging population. Obviously, given the increasing age of the population, there will be continual growth and development of the field, with many attractive career opportunities in administration of these services (Yee-Melichar, Renwanz-Boyle, & Flores, 2011). The administrator will face many challenges. Some of these challenges can be discerned in the descriptions of the LTC services that have been presented in this chapter. LTC can take many forms; it is made up of a heterogeneous array of services with many different financial, regulatory, licensing, staffing, and ownership arrangements. They may operate on a for-profit or not-for-profit basis. There are numerous applicable federal and state rules and reimbursement mechanisms— with many different units of their respective bureaucracies involved. Furthermore, special factors in the local, city, and county environment may affect the types of services possible, as will the variations in available facilities for day care and affordable senior housing. There are formidable gaps in funding and insurance coverage. Medicare, the mainstay insurance program for older adults, provides little coverage for LTC—mainly hospice care. Administrators and colleagues will have to be very familiar with and keep abreast of all public and private funding sources, and their eligibility and billing requirements. Operational support may come through different revenue streams. In all likelihood, many administrators may find that they may have to turn to philanthropic fund-raising efforts and must learn how to seek donor support from the community as an important supplement to client-care revenues. Administrators will have to understand the various categories of health care workers involved in LTC, how they are recruited, their functions and scope of practice, licensing, worker’s compensation, and insurance coverage. They must discover ways to create and maintain working conditions conducive to job satisfaction; providing opportunities for continuing professional education is one example. Human resource (HR) departments must not overlook the valuable contributions of volunteers and should include well-designed recruitment and training of volunteers in their staffing plans. Administrators will have to be concerned about not only the clients in their programs but also their family members, partners, neighbors, and close friends—who may play important roles in caregiving and caregiver support. These relationships, which are part and parcel of LTC, add richness and diversity to the tasks of administration but require good communication to function effectively. Administrators will find that behavioral aspects of care will call for increasing attention. Intellectual decline, memory loss, depression, behavioral change, and other mental health issues, often intertwined with chronic physical illness problems, are ­increasingly

50  I.  OPTIONS IN LONG-TERM CARE

prominent challenges in provision of LTC. Appropriate staffing, staff training, and support to family caregivers will be needed. Whatever the program or services in which they are involved, administrators will find that record-keeping systems are essential to the infrastructure. Increasingly, the record keeping will be electronic and will call on in-house or consultant information technology (IT) assistance. Good record keeping is the key to assuring quality of care, maintaining continuous surveillance of client services, meeting the needs for HR data, accounting, marketing, grant reporting, and strategic planning. For administrators in LTC, there will be rewarding opportunities for experimentation and innovation in health services and for mutually beneficial collaboration with other agencies and health care providers. Administrators will find themselves in the midst of rapid change of health services brought about, in part, by “health reform,” whatever shape it eventually takes, and by continuous scientific advances in the treatment and management of conditions associated with aging. It is a stage setting for extended periods of “business as usual.” One exceedingly significant role for administrations is their participation in the processes that will strengthen and improve LTC. This may entail working with legislators, with governmental regulatory agencies, and with community action groups. Professional societies, trade associations, and advocacy groups can give an effective voice to the views of administrators, influence public opinion, and bring about constructive change. It is a continuous process. Administrators can have many justifiable complaints about the existing system of LTC such as inadequate funding, onerous regulations, workforce shortages, poor coordination, and so on. However, informed as they are, administrators are in a position to help do something about it, individually and collectively. It is an important administrative responsibility.

REFERENCES AARP. (2011). All about adult day services: A community-based program that can help care for your loved one in AARP. Retrieved from http://www.aarp.org/relationships/caregivingresource-center/info-102010/pc_all_about_adult_day_services.html Beisgen, B., & Kraitchman, M. (2003). Senior centers: Opportunities for successful aging. New York, NY: Springer Publishing Company. Case Management Society of America (CMSA). (2008). Core curriculum for case management (2nd ed.). Philadelphia, PA: Lippincott, Williams & Wilkins. Case Management Society of America (CMSA). (2011a). Accreditation & certification. Little Rock, AR: Author. Retrieved from http://www.cmsa.org/Individual/Education/ AccreditationCertification/tabid/209/Default.aspx Case Management Society of America (CMSA). (2011b). Where do case managers work? Little Rock, AR: Author. Retrieved from http://www.cmsa.org/Consumer/FindaCaseManager/ WhatisaCaseManager/tabid/277/Default.aspx Case Management Society of America (CMSA). (2011c). Who pays for case management services? Little Rock, AR: Author. Retrieved from http://www.cmsa.org/Consumer/ FindaCaseManager/WhatisaCaseManager/tabid/280/Default.aspx Centers for Medicare & Medicaid Services (CMS). (2011a). Survey & certification—Certification and compliance. Baltimore, MD: Author. Retrieved from http://www.cms.gov/ CertificationandComplianc/01_Overview.asp Centers for Medicare & Medicaid Services (CMS). (2011b). Program for all inclusive care for the Elderly (PACE)—Overview. Baltimore, MD: Author. Retrieved from http://www.cms. gov/pace/

2.  COMMUNITY-BASED PROGRAMS AND SERVICES  51

Cress, C. (2012). Handbook of geriatric care management (3rd ed.). Sudbury, MA: Jones & Bartlett Learning, LLC. Gelfand, D. (2006). The aging network: Programs and services (6th ed.). New York, NY: Springer Publishing Company. Gross, D. L., Temkin-Greener, H., Kunitz, S., & Mukamel, D. B. (2004). The growing pains of integrated health care for the elderly: Lessons from the expansion of PACE. Milbank Quarterly, 82(2), 257–282. Harahan, M., Sanders, A., & Stone, R. (2006). Lessons from the workshops on Affordable Housing Plus Services strategies for low and modest-income seniors. A synthesis of findings from a study of Affordable Housing Plus Services. Washington, DC: American Association of Homes and Services for the Aging, Institute for the Future of Aging Services. Institute on Aging (IOA). (2011). IOA services: Be at home with care. San Francisco, CA: Author. Retrieved from http://www.ioaging.org/services/index.html MaloneBeach, E. E., & Langeland, K. L. (2011). Boomers’ prospective needs for senior centers and related services: A survey of persons 50–59. Journal of Gerontological Social Work, 54(1), 116–130. Medicare.gov. (n.d.). Home health compare. Baltimore, MD: Author. Retrieved from http:// www.medicare.gov/homehealthcompare/(S(hefybrivamfbt345d5qnwuur))/Resources/ Glossary.aspx National Adult Day Services Association (NADSA). (2011a). MetLife national study of adult day services. Fuquay Varina, NC: Author. Retrieved from http://www.nadsa.org/?page_id=92 National Adult Day Services Association (NADSA). (2011b). Overview and facts. Fuquay Varina, NC: Author. Retrieved from http://www.nadsa.org/?page_id=80 National Adult Day Services Association (NADSA). (n.d.). State regulations. Fuquay Varina, NC: Author. Retrieved from http://www.nadsa.org/?page_id=77 National Institute of Senior Centers (NISC). (2011). Senior centers: Fact sheets. Washington, DC: National Council on Aging. Retrieved from http://www.ncoa.org/press-room/factsheets/senior-centers-fact-sheet.html National Investment Center. (2011). Senior housing frequently asked questions. Annapolis, MD: Author. Retrieved from http://www.nic.org/overview/faqs.aspx National Pace Association (NPA). (2011). What is PACE? Alexandria, VA: Author. Retrieved from http://www.npaonline.org:80/website/article.asp?id=12 Niles-Yokum, K., & Wagner, D. (2011). The aging networks: A guide to programs and services (7th ed.). New York, NY: Springer Publishing Company. Pratt, J. (2010). Long-term care: Managing across the continuum (3rd ed.). Sudbury, MA: Jones and Bartlett. Schless, D. (2007). The future of independent living communities. In Genworth Financial, The future of long-term care in America (pp. 49–58). Menlo Park, CA: Genworth Financial. Senior Housing Net. (2011). Independent living. San Jose, CA: Author. Retrieved from http:// www.seniorhousingnet.com/care-types/independent-living.aspx Siebenaler, K., O’Keeffe, J., O’Keefe, C., Brown, D., & Koetse, B. (2005). Regulatory review of adult day services. Washington, DC: RTI International. Retrieved from http://aspe.hhs. gov/daltcp/reports/adultday.htm U.S. Department of Housing and Urban Development. (2011a). Senior housing Section 202 supportive housing for the elderly program. Washington, DC: Author. Retrieved from http:// portal.hud.gov/hudportal/HUD?src=/program_offices/housing/mfh/progdesc/eld202 U.S. Department of Housing and Urban Development. (2011b). Senior housing: What should you know. Washington, DC: Author. Retrieved from http://portal.hud.gov/hudportal/ HUD?src=/program_offices /fair_housing_equal_opp/seniors Yee-Melichar, D., Renwanz-Boyle, A., & Flores, C. (2011). Assisted living administration and management: Effective practices and model programs in elder care. New York, NY: Springer Publishing Company.

3

NATURALLY OCCURRING RETIREMENT COMMUNITIES Nichole Kain Courtney J. Donovan Darlene Yee-Melichar

LEARNING OBJECTIVES On the completion of Chapter 3, the reader will be able to the growing model of naturally occurring retirement commu•  Recognize  nities (NORCs) •  Learn about supportive service programs (SSPs) provided by NORCs and

the benefits associated with these partnerships •  Assess the advantages offered by a Village model in promoting healthy

aging based on community-driven support and volunteerism •  Analyze each model’s sources of funding along with what makes a thera-

peutic landscape for older adult communities •  Examine the characteristics of healthy NORC and Village models •  Comprehend the concept of aging-in-place •  Consider areas for growth and improvement needed for the NORC and

Village models.

The demographic profile in the United States is changing, in part because of an increasing number of older Americans who wish to remain in their homes and communities as they age, a concept known as aging-in-place. The NORC model is gaining notoriety as a paradigm to allow older adults the security of remaining in their own homes or communities. Masotti, Fick, Johnson-Masotti, and MacLeod (2006) define the NORC as “a community that has naturally developed a high concentration of older residents, because seniors tend to either remain in or move to these communities when they retire” (p. 1).

53

54  I.  OPTIONS IN LONG-TERM CARE

The NORC concept is growing in popularity as the growth of America’s aging population continues to be the focus of numerous academic, policy, and social discussions. Many researchers have a particular interest in the newest generation of older Americans. Born between 1946 and 1964, baby boomers began turning 65 in 2011. In 1997, the National Institute on Aging and the U.S. Bureau of the Census published a document outlining aging trends in America. This document states that “an elderly population explosion between 2010 and 2030 is inevitable as the BabyBoom generation reaches age 65” (U.S. Department of Commerce, 1997, p. 6), and projections indicate that one in five U.S. citizens will be an older adult by 2030 (U.S. Department of Commerce, 1997). Given the continually increasing population of older Americans, this chapter is dedicated to examining the NORC model as an effective practice that enables older adults to age in place.

NORC The concept of an NORC in American culture is relatively new and not widely known. The term was originally coined in 1985 by Michael Hunt, a researcher for the University of Wisconsin, when describing the population composition of apartment complexes he had surveyed (MacLaren, Landsberg, & Schwartz, 2007; Masotti et  al., 2006). A selected definition table for an NORC is contained in Table 3.1; Table 3.2 includes an abbreviated NORC glossary for your reference. In a 2006 amendment to the Older Americans Act (OAA), the authors offer a definition with increasing detail of an NORC: A community with a concentrated population of older individuals, which may include a residential building, a housing complex, an area (including a rural area) of single family residences, or a neighborhood composed of ageintegrated housing—where 40 percent of the heads of households are older individuals; or a critical mass of older individuals exists, based on local factors that, taken in total, allow an organization to achieve efficiencies in the provision of health and social services to older individuals living in the community; and that is not an institutional care or assisted living setting. (O’Shaughnessy & Napili, 2006, p. 22) Attributable to various discrepancies in defining age requirements, the number of older residents, and vague criteria for determining boundaries, it is difficult for researchers definitively to document how many NORCs exist in the United TABLE 3.1  Selected Definition Table for a Naturally Occurring Retirement Community Definition

Source

A neighborhood with a large percentage of its residents aged 60 or 65 years and older, although the area was not designed for older adults.

Hildebrand and Neufeld (2009), p. 703

Places that house a high percentage of older residents, even though they were not designed for this purpose.

Marshall and Hunt (1999), p. 20

A community that has naturally developed a high concentration of older residents, because seniors tend to either remain in or move to these communities when they retire.

Masotti et al. (2006), p. 1

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TABLE 3.2  Naturally Occurring Retirement Community Glossary The following are terms related to naturally occurring retirement communities. This abbreviated glossary is intended to supplement the information provided in the body of this chapter as well as to assist in future research. Elder Friendly Community A place where older people are actively involved, valued, and supported with infrastructure and services that effectively accommodate their needs (Alley et al, 2007, p. 4). Livability Components such as affordable housing, low crime, good transportation options, opportunities for civic engagement and a network of health and supportive services. . . . When these components are built into a neighborhood, a resident’s ability to access services is increased and therefore residents tend to remain engaged in their communities as they age (National Association of Area Agencies on Aging, 2007, p. 7). Naturally Occurring Retirement Community A neighborhood with a large percentage of its residents aged 60 or 65 years and older although the area was not designed for older adults (Hildebrand & Neufeld, 2009, p. 703). •• Horizontal NORC (e.g., subdivision or trailer home community) •• Vertical NORC (e.g., apartment building or condominium complex) Social Capital Resources available to individuals and groups through social connections and social relations with others and often considered a form of “public good” shared by people in a group or community (Cannuscio et al., 2003, p. 395).

States (Colello, 2007). However, it is estimated that approximately 5,000 urban NORCs exist in the United States, with a total population of 10 million people (Masotti et al., 2006). The 2006 OAA highlights the purpose of identifying a geographic location as an NORC; the NORC label can bring increased attention from local service organizations and academic communities that wish to serve or study the community members. Regardless of the classification and identification difficulties, these communities exist due to the desire of older adults to age in place and there is an identified need for supportive services to allow them to do so safely.

NORC WITH SSPS Due to the varying needs of each community and individuals affiliated with an NORC, many are establishing a naturally occurring retirement community—­ supportive service program (NORC-SSP). These SSPs are “partnerships that bring together housing entities, residents, health and social services providers, governmental agencies, and philanthropic organizations allowing for flexible and varied services to promote independent and healthful living for as long as possible” (MacLaren et al., 2007, p. 129). These important partnerships allow local organizations to serve many people in a small geographic area, and they enable NORCSSP members to receive diverse services they may not have had previous access to. Many proponents of such partnerships with local organizations cite evidence of numerous institutionalizations of NORC-SSP members being forestalled, saving millions of dollars to taxpayers (MacLaren et al., 2007). The NORC-SSP model gained attention in the U.S. Senate during three separate hearings between 2005 and 2006, with the purpose of reauthorizing the OAA.

56  I.  OPTIONS IN LONG-TERM CARE

TABLE 3.3  Highlights of Senate Hearings on the Older Americans Act Date of Hearing

Quote

Source

May 17, 2005

“The NORC Supportive Service Program model affirms older adults want to continue agingin-place, and provides a perfect example of improved coordination of care and support that comes to bear on the quality of life of older Americans.”

Josephina Carbonell: U.S. Assistant Secretary for Aging

February 14, 2006

“There is an evolving awareness in the Aging Network that NORCs exist and present opportunities to achieve economies of scale by bringing services to where people live and want to remain.”

Joe Reed: AARP’s National Advocacy Coordinator for Federal Livable Communities and Consumer Issues

May 6, 2006

“The nation’s current infrastructure will not be able to handle the magnitude of the aging baby boomer population, necessitating the advancement of new models, such as NORC supportive service programs, to enable older persons to thrive while remaining in their own homes.”

Mike DeWine: Retirement, Security, and Aging Subcommittee Chairman

Note: NORC, naturally occurring retirement community. Source: Senate Hearings for the Reauthorization of the Older Americans Act (as cited by Jewish Federation of North America, 2012).

Table 3.3 identifies some positive attributes of NORC–supportive service partnerships that make it a viable model for healthy aging. These hearings were significant in gaining national attention for this model of healthy aging and securing funding for future growth. As a result of these hearings, significant opportunities for expansion of the NORC-SSP model were created through formation of the community innovations for aging-in-place initiative (Jewish Federation of North America, 2010). This initiative has provided monetary resources for program development and is discussed again in the payment sources portion of this chapter. Due to governmental support and funding, more than 40 NORC-SSPs have been created and are managed by the local chapter of Jewish Family Services in 25 different states (Jewish Federation of North America, 2012). These local chapters, along with their parent organization of The Jewish Federations of North America (formerly United Jewish Communities), strive for healthy and engaged community members and have received large grants after the 2005 and 2006 refinements of the OAA to continue their mission to serve an estimated 20,000 older adults. Participation in NORC-SSPs organized by The Jewish Federations of North America is open to community members regardless of religious affiliation. The services offered by each NORC-SSP vary by the unique needs of the community served; however, there are common themes in each. Core components of NORCs with supportive services include case management, social work services, health care management, education, prevention programs, recreational activities, and volunteer ­opportunities (Jewish Federation of North America, 2012). These services

3.  NATURALLY OCCURRING RETIREMENT COMMUNITIES  57

combine t­o provide the minimal assistance that many older adults need to remain in their homes, thus preventing premature institutionalization.

VILLAGES Another model of providing care to older adults living in an NORC stems from the internal motivation of the community’s residents. Where the NORC-SSPs provide care based on professional assessments of the resident’s needs, villages are born when residents identify a need in their community and actively pursue resources. The village concept took form in 2000 when a group of friends in Boston’s Beacon Hill neighborhood wanted an alternative to planned continuing care retirement communities, assisted living, or nursing homes as they aged. The name— Village—refers to the tradition of community involvement with raising a child and subsequently caring for elders. Beacon Hill Village is the first NORC with supportive service partnerships in the United States to operate without government funding (McWhinney-Morse, 2009). The Village model is member based and member driven. When researching existing services in 2000, the founders of Beacon Hill Village found that “state and federal programs for older adults were restricted to very poor people and people with disabilities” (McWhinney-Morse, 2009, p. 85). The Village model was created to serve all older adults, not just the very old, frail, or wealthy. The founders noted that for many older adults, minor assistance can make the difference of being able to remain in one’s own home or needing to move out of their community. The Village model of healthy aging relies heavily on volunteers and neighborly interactions to assist an older adult with minor issues that could cause premature institutionalization. Older adults report that they would rather call on Village volunteers instead of family or friends (Accius, 2010); this may be due to the older adult not wanting to be a burden to his or her family. Examples of interventions that enable seniors to live in their communities for as long as possible include a volunteer changing a light bulb, carrying groceries upstairs, or helping a member’s cat into a carrier. Having assistance for these seemingly minor tasks of daily living can not only prevent a fall that may result in an injury but also increase a community’s “social capitol” (Cannuscio, Block, & Kawachi, 2003). The Village model gained tremendous popularity after a 2006 New York Times article featured the Beacon Hill Village. The article highlighted members, services, and the foundational drive that started this community-based approach to agingin-place. The success of Beacon Hill Village comes from the determination of its members to remain in their homes: They were unwilling to be herded by developers into cookie-cutter senior housing and told what to do and when to do it by social workers half their age. They had no intention of giving up the Brahms Requiem at St. Paul’s Chapel for a sing-along at the old folks’ home, or high tea at the Ritz-Carlton for lukewarm decaf in the “country kitchens” that are ubiquitous in retirement communities. (Gross, 2006) This article sparked discussion among older adults across the country, and a flurry of villages were formed as a result of the inspiration. Since publication of this initial New York Times article, Beacon Hill Village has created a handbook, hosted conferences, and organized a web-based networking tool for communities that are interested in starting their own Villages: Village to Village Network.

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FUNDING The services provided by NORC-SSPs and Villages are similar, and both are classified as NORCs. The primary differences: the need for NORC-SSPs is usually identified by local aging professionals and is federally funded. In contrast, Villages are grassroots efforts by seniors to age in place and are primarily funded by membership dues. Reliable funding is important in the success of any venture. Table 3.4 simplifies the financial makeup of NORC-SSPs and Villages. As previously discussed, NORC-SSPs are federally funded in part by the community innovations for aging-in-place initiative. Successful implementations of this funding have included Jewish family services, Area Agencies on Aging, universities, medical centers, and local city governments (Colello, 2007). Commonly, there are no fees for members; however, some NORC-SSPs may request a small membership fee to supplement services; a common annual cost reported is $25 (Jewish Federation of North America, 2012). Input from older adults is critical for the success of an NORC-SSP and participant opinion is often requested regarding services that are offered through the program. As a reminder, most NORC-SSPs originate when community professionals identify a geographic area as an NORC and attempt to bring services to allow the older residents to age in place (Masotti et al., 2006). When a community is identified by gerontological professionals and supportive services are identified to allow those residents to age in place, participation in the initial planning stages of an NORC-SSP by the older adult may be overlooked (Colello, 2007). Even with proper funding, an NORC-SSP is in jeopardy of failing without input from older adults in the target community. In contrast with federal funding, Villages are nonprofit organizations funded by membership dues, donations, and local fund-raising efforts (McWhinney-Morse, 2009). Traditionally, Village members give initial and continued direction to the organization and services offered to its members. One member of the Beacon Hill Village in Boston explained the benefits of membership this way: “[Village] membership is a very powerful tool. It provides people with a sense of ownership; it encourages active participation in the community; it enables people to speak their minds about their needs and wishes” (McWhinney-Morse, 2009, p. 85). Annual village membership dues vary based on location and services offered and can range from $100 to $2,000 a year. Some Villages offer reduced fees for low or moderate income community members, such as Beacon Hill Village’s Membership Plus program in which “members receive stipends to use for any program or services to which there is a charge” in addition to a reduced membership fee (McWhinneyMorse, 2009, p. 85).

TABLE 3.4  Financial Makeup of NORC-SSPs and Villages NORC-SSP

Village

Primary funding source

Federal funding

Membership dues

Additional funding source

Some require small membership dues

Local fund-raising

Note: NORC-SSP, naturally occurring retirement community with supportive service programs. Sources: Colello (2007), Masotti et al. (2006), and McWhinney-Morse (2009).

3.  NATURALLY OCCURRING RETIREMENT COMMUNITIES  59

MAPPING AND OBSERVATIONS To best assess the home-based needs of older persons and the increasing relevance of NORCs, it is important to present and analyze recent census data that pertains to older Americans in the United States. In this section, we first examine the general demographic profile of older Americans in the United States. We then consider more detailed data, including some that reflect the frequency of home ownership and geographic distribution of older Americans throughout the United States. We finish this section by examining information that provides an understanding of the general well-being and residential concerns of older Americans. The most recent census data show that the current older population in the United States numbered 39.6 million in 2009, about 12.9% of the U.S. population or one in every eight Americans (Administration on Aging, 2011, 2012; U.S. Census Bureau, 2010). Current projections estimate that by 2030 there will be about 72.1 million older persons living in the United States. Older persons represented 12.4% of the population in the year 2000, and are expected to account for 19% of the American population by 2030. With the aging population of the United States representing a sizeable and growing proportion of overall population, there is increasing reason to focus on the daily well-being of older Americans and key areas for improving and maintaining their health outcomes and experiences. To better respond to the present and potential health needs of older Americans, researchers need to take a closer look at more detailed Census data, including current household data (U.S. Census Bureau, 2010). With a growing number of adults seeking to age in place, it is critical to know the general household profile of older Americans, as it may help to shape the trajectory of current and long-term health and social policy for older persons in the United States. Most recent estimates show that approximately 23.1 million households in the United States are presently headed by older persons. Furthermore, data from the Administration on Aging—a branch of the Department of Health and Human Services—indicates that of these households, approximately 80% were owners of their homes, whereas 20% were renters (Administration on Aging, 2011; 2012). Moreover, recent findings demonstrate that older households were likely to spend a sizeable proportion of their incomes on household costs. In this respect, older homeowners were likely to spend 42% of their income on housing costs, whereas older renters were likely to spend about 70% of their income on housing costs. The Administration on Aging also notes that 65% of older homeowners owned their homes without any remaining housing debt. Current census data also provide an indication of the diffuse geographic areas in which one can find older Americans throughout the United States (U.S. Census Bureau, 2010). In analyzing the national distribution of older Americans throughout the country, there are clear indications that the population size of older Americans varies according to each state. Significantly, approximately 56% of older adults in the United States reside in 11 states. Although a higher number of older Americans are found in states such as Florida and California, older persons in the United States still comprise a sizeable part of the population in other states. An equally important factor to consider when evaluating the population patterns of older persons includes the rates of growth of the older population in each state, which differ greatly. An understanding of such patterns is key for estimating health and social expenditures toward aging and planning which states may require federal assistance.

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Moreover, a geographic assessment of the locations in which older Americans reside would be incomplete without considering the specific types of locales where older Americans are likely to reside (Administration on Aging, 2011; 2012; U.S. Census Bureau, 2010). As with state-level information, smaller scale data on the geographic distribution of older Americans are essential for the planning of current and long-term health and social programs. The most recent population data indicate that most persons 65 years of age and older (approximately 80%) reside in metropolitan areas in the United States. Even closer examination of the distribution of older Americans shows that most (72%) reside in close proximity to major metropolitan areas, whereas 28% actually live in major U.S. cities. Additionally, 19% of aging adults reside in nonmetropolitan areas. This information concerning the locations where older Americans reside is important as it has potential implications for practical considerations, including planning for municipal and community accessibility. Census and other demographic data similarly provide a more nuanced understanding of older adults, beyond their geographic distribution at the state and local scale. In this sense, there is clear evidence that older adults are less likely than younger Americans to change residences. This finding seems to support studies in geography and other disciplines that explain that older persons are less likely to move because of their desire to age in place. Whether older Americans are less likely to move because of choice, this is an important consideration for planning and responding to the everyday needs of older adults. Residential information, including whether older adults are choosing to agein-place, cannot be separated from existing health data on population. As the home may be the place that older adults spend most of their time, it is crucial to understand what potential barriers they face in successfully navigating the home environment. With this last point in mind, an examination of existing data on aging shows that of older noninstitutionalized adults, approximately 41% self-report their health as excellent or very good. At the same time, most older Americans do report that they have one or more chronic conditions that may have an effect on the ability to age-in-place with relative ease. The most common reported chronic conditions among older adults include hypertension, arthritis, heart disease, cancer, diabetes, and sinusitis. Additionally, approximately 27% of older adults seem to fit the height and weight criteria for obesity (Administration on Aging, 2011, 2012). However, close to one third of older adults also report engaging in some form of regular leisure activity. This last factor is significant, as it provides some indication that a sizeable proportion of older Americans seem to be successful in their attempts to pursue active aging. To be sure, it is hard to discern whether older adults who self-report as pursuing a leisure activity may also face some form of disability. It is notable that close to 40% of older Americans report living with some form of disability (Administration on Aging, 2011, 2012). The disabilities that older persons live with vary greatly from disabilities that are relatively minor to ones that impede an individual’s ability to carry out routine personal tasks with ease. No matter whether older persons do report difficulties from disabilities, disability is also an important overall consideration in understanding the long-term residential considerations and needs of older adults. With age, the likelihood of disability increases. Indeed, over 50% of adults older than 80 years of age report having a severe disability (Administration on Aging, 2011, 2012). Close to 30% of those older than 80 years report that because of their disability they require assistance with day-to-day activities. These numbers contrast with data gathered from Medicare, which indicates that those younger than 80 years may have less disability-related constraints (Administration on Aging, 2011,

3.  NATURALLY OCCURRING RETIREMENT COMMUNITIES  61

2012). A recent Medicare report states that among respondents aged 65 and older who reside at home, one quarter note having difficulty in carrying out more than one specific activity of daily living (ADL). ADLs involve a number of activities, including bathing, dressing, eating, and the ability to get around the house with ease.

HEALTHY NORCS So far, you have learned about the origins, locations, and structure of an NORC and its possible SSP community partnerships. Just as certain neighborhoods can promote or deter good health, so can individual NORCs. Massotti et al. (2006) argue that some NORC environments are healthier than others and describe a healthy NORC as “a community where environmental characteristics positively affect ­senior-sensitive determinants of health” (p. 1). Based on the research conducted by Masotti et  al. (2006), Figure 3.1 identifies some common characteristics of healthy NORCs. Transportation, environmental safety, and social participation are common threads in most studies examining the needs of older adults to remain active in their communities. Masotti et  al. (2006) argue that a healthy NORC will address all of these factors as well as promote a feeling of well-being for the elder. To better illustrate the concept of a healthy NORC, examples from existing models will be summarized. The very first NORC-SSP will be profiled, followed by an examination of the Village model with an example from the San Francisco Bay Area.

NORC-SSP Penn South Program for Seniors—New York, NY The Penn South apartment buildings were constructed in Manhattan during the 1960s; in 1986, the Penn South Program for Seniors was created to meet the needs of residents who were aging-in-place (Captan, 2000). On initiation of this very first

Basic needs and amenities are within walking distance along clean and well-lit walking paths all year.

Community members encourage participation—results in a “healthy worker” effect for retirees.

Community is perceived as safe and crime free, with adequate public transportation.

Population density is at a level that results in regular unplanned social interaction as residents perform their activities of daily living.

FIGURE 3.1  Characteristics of healthy NORCs. Note: NORCs, naturally occurring retirement communities. Source: Masotti et al. (2006, p. 2).

Local government progressively demonstrates seniorfriendly policy decisions.

62  I.  OPTIONS IN LONG-TERM CARE

NORC-SSP, the stated goals included bringing services to the seniors, rather than seniors traveling long distances, and fostering volunteerism among generations (Jewish Federation of North America, 2010). Older adults living in the Penn South apartment buildings today have free access to social workers, mental health professionals, nurses, transportation, on-site adult day center, recreational activities, and health-promotion programs (Captan, 2000). As Masotti et al. (2006) discussed, these services are key components of a healthy NORC and have been shown to positively affect the overall health of seniors. Initial funding for this program was challenging; however, a partnership was formed between the board of directors of Penn South and the United Jewish Association (UJA)–Federation of New York (Captan, 2000). The success of Penn South Program for Seniors inspired legislation that would lead to federal funding for replication of NORC-SSPs (Colello, 2007).

Village Avenidas Village—Palo Alto, CA Conceived in 2006, founded in October of 2007, and modeled after the Beacon Hill Village in Boston, Avenidas Village is the first Village in the country to be affiliated with an existing nonprofit agency. Before founding the Village, Avenidas was well known in the San Francisco Bay Area community for senior services, an adult day health center, and senior community center. Avenidas Village fills a unique need for adults 50 years and older who live in 10 Bay Area cities. This unique need was summarized in a SF Gate article profiling Avenidas Village in December of 2007: With Social Security the main source of income for most people 65 and older, funds for the kind of care that might keep them out of a nursing home can be in short supply outside long-term care insurance. And few people purchase that . . . Medicare doesn’t cover long-term needs. Only the very poor have hope of federal assistance . . . . Those [seniors] who make a little bit of money find it very hard to manage on a fixed income. When they encounter a need, they have a very difficult time paying for it. (Evans, 2007) Avenidas Village was designed with this population in mind: local seniors who do not qualify for low-income governmental assistance and may be hesitant to spend their limited resources due to the uncertainty of the future. Avenidas Village is able to assist community-dwelling seniors to remain in their homes as they age by offering services such as vetting service providers, transportation, and hosting social activities (Evans, 2007). A detailed comparison of membership benefits can be found in Table 3.5.

UNDERSTANDING AGING-IN-PLACE A review of the literature shows that the research on geographical gerontology dates back 30 years (Andrews, Cutchin, McCracken, Phillips, & Wiles, 2007). With increasing research in this area, the approaches to understanding the relationship of aging and geography have become more nuanced. In this sense, geographers investigating aging have tended toward incorporating diverse research approaches and

3.  NATURALLY OCCURRING RETIREMENT COMMUNITIES  63

TABLE 3.5  Avenidas Versus Avenidas Village Avenidas

Avenidas Village

Membership dues

• Annual:   $40 individual   $60 couple • Lifetime:   $400 individual   $600 couple

• Annual:   $825 individual   $1,050 couple

Membership benefits

• Your choice of 100 different activities!! • The Avenidas News delivered right to your door! • Discounts on day trips and longer vacations! • Free health insurance counseling! • Attend free parties! • Member parking permit for 4 hrs of free parking! • Free blood pressure check every week! • $10 off tuition at many Avenidas classes! • $5 discount on many Health and Wellness services! • $35 discount on Camp Avenidas—a week of fitness fun • Free help with your taxes! • Free 30-min counseling session (if over 60) with a licensed therapist! • Learn about reverse mortgages from a trained counselor! • Free support groups! • Find answers with our information and assistance team! • The friendship room offers a paper and free coffee! • A free consultation on transportation options! • Consult with senior adult legal assistance for free! • Volunteer at Avenidas or in the community! • Use free Wi–Fi in the lobby!

• One phone number to call for assistance or for help in coordinating services • Prompt, friendly, and professional customer service from dedicated Avenidas Village staff • Access to prescreened vendors • Discounts on services • Transportation to and from medical appointments when your doctor advises you not to drive • Free emergency preparedness review • Daily personal telephone check–in service (if desired) • Members–only website with a members forum • Members–only social and cultural activities • Members–only directory of fellow members • Benefits of Avenidas Village partnerships with health care providers • Medical advocacy • Volunteer opportunities • Legal assistance services • Social connections • Safety net • Peace of mind

Note: Avenidas Village membership is open to adults aged 50 and over who live in the following cities: Palo Alto, East Palo Alto, Stanford, Mountain View, Woodside, Los Altos, Los Altos Hills, Menlo Park, Atherton, and Portola Valley. Source: www.avenidas.com/village

foci to fully capture the complex concerns of aging populations (Andersson, 2011; Becker, 2003; Cristoforetti, Gennai, & Rodeschini, 2011; Dyck, Kontos, Angus, & McKeever, 2005; Leith, 2006; Lopez & Sanchez-Criado, 2009; Percival, 2002). In their recent review article, Andrews et al. (2007) discuss the range of newer studies by geographical gerontologists. These studies can be broadly categorized according to their emphasis on theory or subject matter.

64  I.  OPTIONS IN LONG-TERM CARE

Of particular relevance to this chapter is work that has focused on the relevance of place to the experiences of older adults (Imrie, 2004; Leith, 2006; Percival, 2002; Walker & Hiller, 2007; Wiles et al., 2009). The concept of place within geography can be explained as follows: “Once named or labeled . . . locations become places. Locations become places when they are charged with meaning” (Gatrell & Elliott, 2009). As Gatrell and Elliott describe, place is significant as a geographic concept as it recognizes that the locations where people live and have experiences are more than dots on a map, they are infused with meaning. Work in geography shows that place is a relatively flexible concept and can be understood as something large like a building or small like a room. No matter the scale and scope of a place, it is important to understand the meaning that people associate, bring to, or experience with places. With this explanation in mind, geographical gerontologists have focused on understanding how a place is significant in shaping the health outcomes and experiences of aging populations. To this end, geographical gerontologists as well as other scholars recognize that place can interact with many other variables. These other factors and their influence on a place can significantly affect whether a place has a positive effect on health, or can be construed as a therapeutic landscape. The concept of therapeutic landscape is one put forth by geographer Will Gesler, which refers to “places that have achieved lasting reputations for providing physical, mental and spiritual healing” (Kearns & Gesler, 1998). The research in geographical gerontology explores the relevance of diverse places in understanding the health outcomes and experiences of older adults. However, the place that features most frequently in these studies is the home. Geographers identify that as populations are aging, one strong consideration is how they can successfully age-in-place (Johansson, Josephsson, & Lilja, 2009). A key element to the choice of aging-in-place is the meaning that older adults bring to the homes in which they live. In this sense, research has demonstrated that older adults are not solely interested in the physical environment in determining what places they would like to age in. Equally important is whether a place can contribute to a positive quality of life. This subjective assessment of place can be informed by a number of factors frequently associated with the ability to age in place, including the ability to maintain a level of independence, social connections, and to engage in active aging. The recognition of the positive associations older adults may bring to the process of aging-in-place, as well as the practical considerations of aging, has prompted a consideration of the concept of place integration, as put forth by geographer Malcolm Cutchin (Johansson et al., 2009). This concept considers the overlap of the geographic concept of place with the philosophical concept of pragmatism. To this end, the goal of place integration is to improve the design of the homes in which older adults age in place and, in turn, enhance their well-being. The focus on the importance of the home and place in the health outcomes and experiences of older adults resonates strongly with the research foci and goals of health geographers. In contrast to medical geography, which tends to draw attention to the spatial patterning of morbidity, mortality, and health facilities, health geographers have turned their attention to place to emphasize the microscale in health care choices and outcomes (Andrews et  al., 2007; Gatrell & Elliott, 2009; Kearns, 1993). The consideration of the microscale is brought to the fore in examining place as part of health care choices and experiences. Moreover, health geographers also examine the microscale in their research to also underscore the importance of the experiential and subjective side of health. Given that places,

3.  NATURALLY OCCURRING RETIREMENT COMMUNITIES  65

including the home, are infused with meaning, it is impossible not to consider the bearing they have on an individual’s perception and understanding of aging well. The increasing emergence of NORCs in the United States begs for closer consideration of how residential choices inform and influence the aging process and health outcomes among older Americans.

PROJECTIONS AND AREAS OF GROWTH As the United States braces for the baby boom generation to enter retirement, many government and academic affiliates actively seek ways to foster community participation and allow people to age in the place of their choice. Alley, Liebig, Pynoos, Banerjee, and Choi (2007) argue that “the future growth of the older population will necessitate a more integrated aging infrastructure, with increased housing, transportation, social service, and health care options that meet the needs of both active and frail older adults” (p. 4). The NORC-SSP and Village models could serve to meet all of these needs. The NORC-SSP and Village models are able to succeed in assisting cities with the “future growth of the older population” by addressing both the built and social environments. Socially, membership fosters community-based volunteerism, as well as actively involving members in giving direction to their NORC, and helps to give older adults an organized voice by virtue of power in numbers. Boswell (2000) notes that, all too often, older adults are not included in community-­planning discussions and their needs may go overlooked. However, within a healthy NORC, the built environment is addressed at the residential and community levels. Partnerships with professionals such as occupational therapists give NORC-SSP and Village members the ability to remain in their homes through environmental modifications and strategies to prevent falls. The gerontologist is another member of the interdisciplinary team who may provide education and guidance to enable members to age healthfully.

SUMMARY The NORC-SSP and the Village models are good examples of programs to promote healthy aging. The combination of member direction and professional assistance ensure that the services offered will address the needs of each unique community and will enable members to age in place (Masotti et al., 2006). Even though each NORC may differ based on need, a common theme was uncovered: home is a place for health. Limitations of this research project include a gap in the literature related to minority populations and no statistical data yet available on the effects of Village membership. In addition to addressing these limitations, future direction of NORCs research may include •  Incorporation of participatory Geographic Information Systems (GIS) to enhance mapping and member collaboration •  Partnership with geography researchers to include the effects of place on American well-older adults, rather than at the end of life or recovery after illness

66  I.  OPTIONS IN LONG-TERM CARE

•  Examination of the “therapeutic landscape” as a person’s home, versus time spent in nature, and how this may affect an older adult’s ability to age in place •  Effectiveness of home modifications in preventing premature institutionalizations •  Adaptation of NORC-SSP and Village to the requirements of baby boomers Due to the varying needs of people as they attempt to age in place, there is opportunity for interdisciplinary collaboration by gerontologists, geographers, sociologists, occupational therapists, and more. There is still a great deal to learn about this model of healthy aging and, as Americans age, NORCs will prove to be a rich area of study.

REFERENCES Accius, J. C. (2010, March). The village: A growing option for aging in place. AARP Public Policy Institute Face Sheet 177. Retrieved from www.aarp.org/ppi Administration on Aging. (2011, September 1). A profile of older Americans: 2010. Retrieved January 5, 2012, from http://www.aoa.gov/aoaroot/aging_statistics/profile/2010/ docs/2010profile.pdf Administration on Aging. (2012). Aging integrated database. Retrieved January 5, 2012, from http://www.agidnet.org Alley, D., Liebig, P., Pynoos, J., Banerjee, T., & Choi, I. H. (2007). Creating elder-friendly communities: Preparations for an aging society. Housing for the elderly: policy and practice issues (pp. 1–18). Philadelphia, PA: Hawthorn Press. Andersson, J. E. (2011). Architecture for the silver generation: Exploring the meaning of appropriate space for ageing in a Swedish municipality. Health & Place, 17(2), 572–587. Andrews, G. J., Cutchin, M., McCracken, K., Phillips, D. R., & Wiles, J. (2007). Geographical gerontology: The constitution of a discipline. Social Science & Medicine, 65(1), 151–168. Becker, G. (2003). Meanings of place and displacement in three groups of older immigrants. Journal of Aging Studies, 17(2), 129–149. Boswell, D. (2000). Older citizens and the plan-making process: Are planners being neglectful? (Working Paper No. 69). New Orleans, LA: University of New Orleans, Division of Urban Research and Policy Studies. Cannuscio, C., Block, J., & Kawachi, I. (2003). Social capital and successful aging: The role of senior housing. Annals of Internal Medicine, 139(5 Pt 2), 395–399. Captan, R. (2000, April 12). Managing an aging population [Transcription of the second in a series of seminars]. New York, NY: New York Association of Realty Managers. Retrieved from http://www.nyarm.com/may00/managing.html Colello, K. (2007, December 18). Supportive service programs to naturally occurring retirement communities (CRS Report prepared for members and committees of Congress). Retrieved from http://aging.senate.gov/crs/aging15.pdf Cristoforetti, A., Gennai, F., & Rodeschini, G. (2011). Home sweet home: The emotional construction of places. Journal of Aging Studies, 25(3), 225–232. Dyck, I., Kontos, P., Angus, J., & McKeever, P. (2005). The home as a site for long-term care: Meanings and management of bodies and spaces. Health & Place, 11(2), 173–185. Evans, R. (2007, December 12). Villages bring together agencies for seniors’ health, social needs. SF Gate. Retrieved from http://www.sfgate.com/default/article/Villages-bring-togetheragencies-for-seniors-3299794.php Gatrell, A., & Elliott, S. (2009). Geographies of health: An introduction. Malden, MA: WileyBlackwell. Gross, J. (2006, February 9). Aging at home: For a lucky few, a wish come true. New York Times. Retrieved from http://www.nytimes.com/2006/02/09/garden/09care.html

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Hildebrand, M., & Neufeld, P. (2009). Recruiting older adults into a physical activity promotion program: Active Living Every Day offered in a naturally occurring retirement community. The Gerontologist, 49(5), 702–710. Imrie, R. (2004). Disability, embodiment and the meaning of the home. Housing Studies, 19(5), 745–763. Jewish Federation of North America. (2010). UJC’s national NORC supportive service program initiative: A history of the model and initiative. Retrieved from http://www.jfgi.org/page .aspx?id=140832 Jewish Federation of North America. (2012) Jewish Federation of North America’s Washington office. Retrieved from http://www.jewishfederations.org/washington-office.aspx Johansson, K., Josephsson, S., & Lilja, M. (2009). Creating possibilities for action in the presence of environmental barriers in the process of “ageing in place.” Ageing & Society, 29, 49–70. Kearns, R. A. (1993). Place and health: Towards a reformed medical geography. Professional Geographer, 45(2), 139–147. Kearns, R., & Gesler, W. (1998). Putting health into place: Landscape, identity and well-being. Syracuse, NY: Syracuse University Press. Leith, K. H. (2006). Home is where the heart is . . . or is it? A phenomenological exploration of the meaning of home for older women in congregate housing. Journal of Aging Studies, 20(4), 317–333. Lopez, D., & Sanchez-Criado, T. (2009). Dwelling the telecare home place, location and habitability. Space and Culture, 12(3), 343–358. MacLaren, C., Landsberg, G. & Schwartz, H. (2007). History, accomplishments, issues and prospects of supportive service programs in naturally occurring retirement communities in New York State: Lessons learned. Journal of Gerontological Social Work, 49, 127–144. Marshall, L. J., & Hunt, M. E. (1999). Rural naturally occurring retirement communities: A community assessment procedure. Journal of Housing for the Elderly, 13(1/2), 19–34. Masotti, P. J., Fick, R., Johnson-Masotti, A., & MacLeod, S. (2006). Healthy naturally occurring retirement communities: A low-cost approach to facilitating healthy aging. American Journal of Public Health, 96(7), 1164–1170. McWhinney-Morse, S. (2009). Beacon Hill Village: A civic-minded group of older adults forms its own supportive community and becomes an international model. Journal of the American Society on Aging, 33(2), 85–86. National Association of Area Agencies on Aging & Partners for Livable Communities. (2007, May). A blueprint for action: Developing livable communities for all ages. Retrieved from http:// www.aginginplaceinitiative.org/storage/aipi/documents/Blueprint_for_Action_web .pdf O’Shaughnesy, C., & Napili, A. (2006). The Older Americans Act: Programs, Funding, and 2006 Reauthorization (P.L. 109-365). Retrieved from http://www.nasuad.org/documentation/ policy_priorities/OAAReauth2006_OShaughnessyCRS.pdf Percival, J. (2002). Domestic spaces: Uses and meanings in the daily lives of older people. Ageing & Society, 22, 729–749. U.S. Census Bureau. (2010). Profile of general population and housing characteristics: 2010. Retrieved January 5, 2012, from http://factfinder2.census.gov/faces/tableservices/jsf/ pages/productview.xhtml?pid=DEC_10_DP_DPDP1&prodType=table U.S. Department of Commerce, Economics and Statistics Administration, National Institute on Aging. (1997). Aging in the United States: Past, present and future. Retrieved from the Bureau of the Census: http://www.census.gov/ipc/prod/97agewc.pdf Walker, R. B., & Hiller, J. E. (2007). Places and health: A qualitative study to explore how older women living alone perceive the social and physical dimensions of their neighbourhoods. Social Science & Medicine, 65(6), 1154–1165. Wiles, J. L., Allen, R. E., Palmer, A. J., Hayman, K. J., Keeling, S., & Kerse, N. (2009). Older people and their social spaces: A study of well-being and attachment to place in Aotearoa New Zealand. Social Science & Medicine, 68(4), 664–671.

4

ASSISTED LIVING COMMUNITIES Cristina M. Flores Robert Newcomer Mauro Hernandez

LEARNING OBJECTIVEs On the completion of Chapter 4, the reader will be able to assisted living in the context of the continuum of long-term •  Describe  care (LTC) •  Understand the historical evolution and philosophy of assisted living •  Identify typical residents of and common services provided in assisted

living •  Become familiar with the policy, licensing, and regulations of assisted

living •  Discuss the financing of and funding sources of assisted living •  Recognize the primary responsibilities relative to the administration and

management of assisted living •  Learn about a successful model of assisted living

Housing that includes resident services and care arrangements has been available for decades. All states license some forms of this residential care. Among the states, more than 30 different terms have been used to label or describe this housing. Most common are residential care, board and care and family homes, adult foster care, assisted living, personal care, homes for the aged, domiciliary care, supervisory care, and sheltered care. Although there is much commonality in the basic services in all these housing types, the terms used in state regulations may reflect such things as the number of beds in the facility, whether rooms are shared or private, or the level of assistance available. Differences in size and available assistance, in turn, may affect such things

69

70  I.  OPTIONS IN LONG-TERM CARE

as staffing requirements and the levels of care needs permitted among residents (Yee-Melichar, Renwanz-Boyle, & Flores, 2011). The term assisted living is of relatively recent origin. As initially used, assisted living referred to particular facility physical features and a philosophy of care. At least 29 states have provisions regarding specific assisted living concepts (e.g., privacy, autonomy, and decision making) in their regulations. However, assisted living is now widely used to refer to all types of licensed housing with services for older adults—even in states that continue to use a variety of traditional names (Mollica, Sims-Kastelein, & O’Keeffe, 2007). Later, we discuss the key features and philosophy that distinguishes assisted living from other types of residential care, but most of the discussion in this chapter is about all types of supportive housing. For convenience, we refer to all such housing as assisted living. The use of a single label to classify supportive housing has a practical basis beyond the industry convention. Much of the research literature on supportive housing lacks sufficient information about facility features, services, and operational philosophy. As a consequence, reports and studies of supportive housing are generally unable to classify housing into subtypes, other than by size. Assisted living, inclusive of the many other licensing labels of residential care, is an important component of LTC in the United States. This industry housed about 1 million older persons in 2005 (Mollica et  al., 2007). The number of assisted living beds grew substantially over the past 20 years, doubling by some estimates between 1990 and 2002 (Harrington, Chapman, Miller, Miller, & Newcomer, 2005). This growth has been influenced by various sources, including consumer preferences for less restrictive living arrangements, states’ interests in assisted living as a less expensive alternative to nursing home care, and industry and advocates’ assertions that assisted living could provide a setting that can adequately permit residents to age in place. The practical side of this position is that residents could be given the option of remaining in assisted living even as their level of care needs increased. This position has required rethinking the traditional regulatory boundaries that distinguished nursing homes from housing. Refinements in these regulations and evaluating the effectiveness of assisted living in fulfilling this promise remain a work in progress. We begin this chapter elaborating the original concept of assisted living and then move into an overview of the supportive housing industry itself. Here, we show the traditional services associated with supportive housing and the enhancements associated with the assisted living model. Sections are included on policy, licensing, and regulation; administration and management; this is followed by a case study.

the Assisted Living model of Services, Privacy, and Operational Philosophy The setting for the delivery and receipt of LTC is most commonly discussed as a continuum of care with one’s own home at one end, and the nursing home on the other. These end points can also be used to describe the continuum from personal independence to institutionalization. Assisted living is typically considered as existing somewhere in between the extreme ends where personalized care and supervision can be provided outside of an institutionalized environment, with an emphasis of optimizing physical and psychological independence.

4.  ASSISTED LIVING COMMUNITIES  71

Keren Brown Wilson (2007), a pioneer in developing the assisted living movement, in writing about the historical evolution of assisted living has said, To my knowledge, the first written use of the term [assisted living] (and my first such use of it) was in a 1985 proposal to the State of Oregon to fund a pilot study whereby the services for twenty nursing-home-level Medicaid recipients would be covered in a new residential setting. By 1988, assisted living was being used in presentations at professional meetings and in early trade publication articles. By 1991, when Hawes, Wildfire & Lux published a national study of board and care homes, many residential care facilities that offered or arranged care were calling themselves assisted living, and the study included assisted living as an explicit subset of residential care. The Assisted Living Federation of America (2011c) defines assisted living as follows: A long-term care option that combines housing, support services and health care, as needed. Assisted living is designed for individuals who require assistance with everyday activities such as meals, medication management or assistance, bathing, dressing and transportation. Some residents may have memory disorders including Alzheimer’s, or they may need help with mobility, incontinence or other challenges. Residents are assessed upon move in, or any time there is a change in condition. The assessment is used to develop an individualized service plan. There is still some ambiguity surrounding the various definitions and regulatory models of assisted living used throughout the country. There has never been a single nationally accepted definition of assisted living. Instead, states have each developed their own definitions and guidelines. Some see this as a unique mix of services and privacy, whereas others view it as a new term for the type of care and assistance that has always been available. Trade associations, governmental agencies, as well as academic researchers have developed a variety of definitions designed to capture both the definition and essence of assisted living.

Assisted Living Workgroup and the Center for Excellence in Assisted Living In 2001, at the request of the U.S. Senate Special Committee, the Assisted Living Workgroup was formed (Assisted Living Workgroup, 2003). Approximately 50 national organizations representing providers, consumers, LTC and health care professionals, and regulators among others came together to develop consensus recommendations to assure quality in assisted living. In 2003, the Assisted Living Workgroup made 110 recommendations to the Aging Committee. The recommendations addressed multiple components of assisted living such as accountability and oversight, affordability, direct-care services, medication management, operations, resident rights, and staffing. In 2004, to continue the work of the Assisted Living Workgroup, some of the organizations that participated in the Assisted Living Workgroup formed an organizing committee to develop a “Center for Excellence in Assisted Living” (Center for Excellence in Assisted Living, 2013). This center continues to foster high-quality, affordable assisted living by disseminating research and information and providing technical assistance. The Center for Excellence in Assisted Living’s board of directors is comprised of representatives from leading national organizations as listed in Figure 4.1.

72  I.  OPTIONS IN LONG-TERM CARE

Assisted Living Nurses Association Consumer Consortium of Assisted Living Pioneer Network American Seniors Housing Association Leading Age AARP Alzheimer’s Association Assisted Living Federation of America National Center for Assisted Living NCB Capital Impact and The Green House Project Paralyzed Veterans of America

FIGURE 4.1  Center for Excellence in Assisted Living organizations. Source: Center for Excellence in Assisted Living (2013).

Alaska Arizona Arkansas District of Columbia Florida Hawaii Idaho Illinois Iowa Kansas

Louisiana Maine Maryland Massachusetts Montana Nebraska Nevada New Jersey New Mexico New York

North Dakota Oklahoma Oregon Rhode Island South Carolina Texas Vermont Washington Wisconsin Wyoming

FIGURE 4.2  States with regulations that include an assisted living philosophy. Source: Mollica et al. (2007).

The Assisted Living Philosophy of Care For some stakeholders, assisted living represents a model of residential care that differs considerably from more traditional types of residential care. This philosophy represents a consumer-focused model in which the delivery of care is centered on the resident. Exactly how the philosophy of assisted living is incorporated into state regulation is variable. For example, some states’ regulations stress the importance of privacy and may require private unit residence, whereas others have mixed requirements, allowing shared bedrooms in some settings and individual apartments in others. Twenty-nine states and the District of Columbia (see Figure 4.2) report that provisions regarding assisted living concepts such as privacy, autonomy, and decision making are included in their assisted living regulations (Mollica et al., 2007). Below are two examples of how states may incorporate an assisted living philosophy into their regulations: 1. Florida’s statute describes the purpose of assisted living as “to promote availability of appropriate services for elderly and disabled persons in the least restrictive and most home-like environment, to encourage the development of facilities which promote the dignity, privacy and decision making ability” of residents. 2. Oregon, the first state to adopt a specific philosophy for assisted living, states that “assisted living is a program that promotes resident self-direction and

4.  ASSISTED LIVING COMMUNITIES  73

­ articipation in decisions that emphasize choice, dignity, privacy, individuality, p independence and home-like surroundings” (Mollica et al., 2007).

The Provider’s Perspective The National Center for Assisted Living (2011), the assisted living division of the American Health Care Association offers this description of assisted living: Assisted living is more than a physical setting—it embraces a philosophy of care. Created in response to customer preferences and demand for individual-centered care, assisted living residences provide assistance with physical activities and health-related needs. They also strive to meet the social, emotional, cultural, intellectual, and spiritual well-being of residents. The Assisted Living Federation of America (2011c) describes the core principles of assisted living: “Assisted living is more than a service or location, it is a ­philosophy. For more than 20 years, assisted living has meant choice, independence, dignity and quality of life.”

SERVICES PROVIDED in Licensed Housing There are various opinions about what services assisted living should be able to provide. Some believe that assisted living should remain a social model and facilities should not be expected to provide services to persons with medically complex conditions or high levels of disabilities. However, some believe that assisted living facilities should provide additional services to residents as care needs increase in an effort to minimize the need to relocate to a skilled nursing facility or nursing home. These questions and care provision boundaries go beyond the philosophy of assisted living versus traditional residential care models. All forms and labels used for licensed housing have participated in this discussion. This is reflected in states’ regulations, which vary in allowable services and the levels of care of residents (Mollica et al., 2007). Many states allow facilities to facilitate aging in place and to offer consumers a full range of LTC options. However, in some cases, most states specify the range of allowable services and a minimum that must be provided but do not require facilities to provide the full range of allowable services. Services provided vary both by state admission and retention criteria and by individual assisted living providers. Figure 4.3 illustrates both the typical or common services provided in assisted living communities, as well additional services and amenities that are offered in some communities (for an additional cost).

CLIENTS SERVED Describing residents in assisted living is challenging as research is limited by methodology. However, the research does suggest that residents residing in these communities are becoming increasingly dependent and frail. For example, Mollica and colleagues (2007) report that 42 states reimburse Medicaid-eligible residents under home- and community-based waivers and state plans, and as such these residents require a nursing home level of care. Other literature has reported assisted living residents as having similar characteristics to those residing in skilled nursing facilities/nursing homes. For example, McAllister, Schommer, McAuley,

74  I.  OPTIONS IN LONG-TERM CARE

Common Services: •  24-hour care and supervision •  Oversight of personal and supportive services •  Health-related services (e.g., medication management services) •  Social services •  Recreational activities •  Meals and Snacks •  Housekeeping and laundry •  Transportation Optional Services/Amenities: •  State-of-the-art security systems •  Private apartments •  Internet and cable television •  Library •  Fireplace lounge •  Art gallery •  Art center art classes •  Game room •  Full-service salon •  Massage room •  Garden •  Exercise center •  Program of scheduled wellness classes and activities •  Planned social, cultural, religious, and volunteer activities •  Scheduled transportation to cultural events, special activities, shopping •  Personal care services and lifestyle amenities tailored to specific needs •  On-site home care agency

FIGURE 4.3  Assisted living services. Palm, and Herring (2000) compared assisted living residents and nursing home residents within the same facility and found that the residents did not differ with respect to age, gender, weight, height, or the number of diagnoses. Multiple studies (Armstrong, Rhoads, & Meiling, 2001; McAllister et al., 2000; Rhoads & Thai, 2002) described the profiles of residents in assisted living communities as similar to those of nursing home residents with the majorities being older adults, White, and widowed females, with multiple chronic medical diagnoses and multiple prescribed medications. Further research comparing residents from assisted living to nursing homes has demonstrated that assisted living residents overlap considerably with those receiving LTC in nursing homes in terms of age, cognitive status, chronic medical illnesses, disability, and care needs (Zimmerman et al., 2003). In 2004, about 1.5 million people received LTC in certified nursing facilities and nearly 1 million people lived in assisted living communities (Spillman & Black, 2006). The most recent profile of residents in assisted living is found in the “2009 Overview of Assisted Living,” a collaborative work of five national organizations: (a) American Association of Homes and Services for the Aging, (b) American Seniors Housing Association, (c) Assisted Living Federation of American, (d) National Center for Assisted Living, and (e) National Investment Center for the Seniors Housing and Care. Table 4.1 summarizes the average characteristics of assisted living residents from their most recent survey. This information is limited by the survey methodology used, and the percentages relative to activities of daily living (ADLs) are most likely underestimated.

4.  ASSISTED LIVING COMMUNITIES  75

TABLE 4.1  Characteristics of Assisted Living Residents Age

The average age of residents in assisted living facilities in 2009 was 86.9 years.

Gender

74% of assisted living residents are female; 26% are male.

Typical resident

The typical assisted living resident is an 86-year-old woman who is mobile but needs assistance with approximately two activities of daily living.

Number of residents

More than 900,000 people nationwide live in assisted living settings.

Activities of daily living (ADLs)

On average, assisted living residents need help with 1.6 ADLs. About 64% need assistance with bathing, 39% need assistance with dressing, 26% need assistance with toileting, 19% need assistance with transferring, and 12% need assistance with eating.

Other common services

About 87% of assisted living residents need help with meal preparation, whereas 81% need help managing their medications.

Moving in

Residents come to assisted living facilities from a variety of settings, including 70% who moved from a private home or apartment; 9% came from a nursing facility; 9% moved from a retirement or independent living community; 7% moved from a family residence (such as living with adult child); and 5% came from another assisted living residence or group home.

Moving out

The average length of stay in an assisted living residence is about 28.3 months. Fifty-nine percent of residents will move into a nursing facility. Thirty-three percent will pass away. The remaining will move home or to another location.

Source: American Association of Homes and Services for the Aging, American Seniors Housing Association, Assisted Living Federation of America, National Center for Assisted Living, and National Investment Center (2009).

POLICY, LICENSING, AND REGULATIONS It is difficult to describe generically concepts relative to policy, licensing, and regulations in assisted living. This is because although there are some federal laws that impact assisted living, the main public oversight of assisted living is through the enforcement of state regulations. This generally occurs in the form of the initial licensure of facilities, periodic license renewal surveys (i.e., inspection visits), and visits in response to consumer complaints or other administrative follow-up. All states have some kind of policy, regulations, or requirements for assisted living. Furthermore, state policy and regulations are variable and continually evolving. This section will provide an overview of the regulatory models seen in the United States and describes similarities and variations in selected policies. Keep in mind, however, that professionals working in assisted living thoroughly understand the regulations and requirements specific to their individual state.

State Policy and Regulation Labels The number of states using the label “assisted living,” has continually increased over time. Forty-three states and the District of Columbia now have a licensing category or statute that uses the term assisted living (Mollica et al., 2007). For example, some names used are assisted living, assisted living facility, and assisted living residence. Another common label is “residential care,” which includes terminology such as

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residential care facility, residential care home, or residential care facility for older adults. In addition, some states continue to use traditional names such as board and care homes, homes for the aged, and personal care homes. Some states use more than one label for various types or levels of assisted living and residential care.

Philosophy As discussed earlier, many states now report that provisions regarding assisted living concepts such as privacy, autonomy, and decision making are included in their assisted living regulations (Mollica et  al., 2007). This number has increased from 15 states in 1996 and 22 states in 1998.

Medicaid Reimbursement Although limited in availability, many (42) states now have options for using Medicaid to fund services in assisted living facilities (Mollica et  al., 2007). The majority of states currently use home- and community-based services waivers (also called 1915(c) waivers), others use state plans, and some use both. More information on Medicaid and assisted living is seen later in this chapter.

Regulatory Models States vary in what assisted living is defined to be. Some states consider assisted living to be a licensed setting or building in which many LTC services are delivered. Others define assisted living as a service that may be provided in various settings, which do not have to be licensed. In an attempt to understand the regulatory models used by states, Mollica and colleagues (2007) describe five models of state regulations, which are not mutually exclusive: 1. An institutional model has minimum building and unit requirements and ­multiple-occupancy bedrooms, shared toilets, and shower areas. States permit these facilities to serve people who only need assistance with ADLs. 2. A housing and services model licenses or certifies facilities to provide a broad range of LTC services in apartment settings. Residents may have varying service needs and some may be nursing home eligible. 3. A service model licenses the service provider, whether it is the residence itself or an outside agency, and allows existing building codes and requirements to address the physical structure. This model focuses on the services delivered rather than the physical structure. 4. An umbrella model uses one set of regulations to cover more than one type of housing and services arrangements, including residential care facilities, congregate housing, adult family care, and assisted living. 5. A multiple levels of licensing for a single category model is seen in some states that have different licensing requirements (i.e., levels) for facilities in a single category. The levels are based on the amount of assistance the facility provides to residents served. Eric Carlson (2005) offers an alternate way to describe and classify state regulatory models: 1. In a single-level system, a state licensing agency licenses only one type of residential care or assisted living facility. Any facility is licensed to accept or retain residents as long as the resident does not have a prohibited condition. 2. In a multilevel system, facilities are licensed to care for residents only up to a particular care need. Facilities are licensed by the level of care that they may provide.

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Unit Requirements There are many types of occupancy styles in assisted living. This is the result of both consumer demand and state regulations. The newer models became popular with older persons in large part because of the privacy and ability to retain control over personal activities, such as bathing, dressing, eating, and sleeping. The older, more traditional homes, offered shared rooms and bathrooms.

Resident Agreements/Contracts States generally have regulations and requirements relating to the resident agreement or admission contract. Common items required to be addressed in such agreements are (a) services included in the basic rate, (b) cost of the service package, (c) rate changes, (d) refund policy, (e) cost of additional services, (f) admission and discharge information, (g) services offered beyond basic rate, (h) payment and billing information, (i) resident rights, and (j) grievance procedures (Mollica et al., 2007).

Admission and Retention Most states often use specific criteria that determine whether or not a person can be admitted to or retained in the assisted living facility. Typically, these include the general condition of the resident, health-related conditions, functional conditions, physical function, cognitive function, behavioral problems, and health that needs nursing care. Some states have levels of licensure that define admission and retention criteria. Others have discharge triggers or prohibited conditions.

Resident Rights Regulation regarding resident rights is included in many states. Resident rights include such concepts as personal rights, disclosure of information regarding services and fees, and marketing practices.

Services Services provided in assisted living vary both by state admission and retention criteria and by individual assisted living providers. Typical services were discussed earlier in this chapter. Many states now allow facilities to facilitate aging in place and to offer consumers a full continuum of care options.

Operator/Administrator Requirements The Assisted Living Federation of America (2005) completed survey work related specifically to administrator requirements across states. All states except Virginia were included. It was found that 14 states required licensure, 10 states required certification, 9 states had training programs, 15 states had education and experience requirements, and 5 states had very few requirements.

Direct Staff Requirements Staff training requirements and stringency of the requirements vary among the states. Carlson’s work (2005), inclusive of all states, reported several characteristics of direct staff training requirements across states: 1. Thirty-three states require training in first aid or cardiopulmonary resuscitation or both. 2. Thirty-seven states specify training topics.

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3. A minority of states require initial training of a certain minimum number of hours. 4. Nine states require certain qualifications of the person conducting the initial training for direct-care staff. 5. Six states have control over the content of the curriculum for initial training. 6. Four states require that a direct-care staff member pass a state-developed competency examination. 7. Twenty-four states require a specific hourly minimum for continuing education.

Dementia Care States continue to adopt more regulations with regard to dementia residents in assisted living. Forty-five states now report that they have specific regulatory provisions for facilities serving those with Alzheimer’s disease and other dementias, which is an increase from 28 in 2000 (Mollica et al., 2007).

Medication Administration The issue of medication management and administration is a crucial issue for assisted living facilities. In the report, Assisted Living: Quality of Care and Consumer Protection Issues, the U.S. General Accounting Office (1999, p. 3) found “not providing residents with appropriate medications and not storing medications properly” to be a common problem in assisted living. Regulators have also cited medication administration and assistance with self-medication as a major concern (Mollica et al., 2007). Some states allow for trained aides to administer medications, whereas others allow only trained aides to administer medications or to assist with selfadministration of medications. Some states are now requiring additional training for direct-care staff who administer or assist with the self-administration of medications.

Quality Assurance Efforts As the assisted living industry has grown, so have concerns about quality of care and safety that can be provided to those residents who require special care, staffing, and physical and social environments. These concerns have been described in media reports throughout the country and in a 1999 report from the U.S. General Accounting Office (GAO, 1999). In 2004, the GAO issued another report, Assisted Living: Examples of State Efforts to Improve Consumer Protections, which describes the quality-assurance initiatives in multiple states. For example, some states reported providing technical assistance and follow-up, acting within 10 days on complaints, having clear lines of communication and definition of duties for survey staff, developing clear enforcement procedures, and conducting follow-up visits.

Federal Statutes Although states are primarily responsible for the licensing and oversight of assisted living communities, federal statues also impact the operations of assisted living. Some examples of federal statutes that are important for the assisted living administrator to have knowledge of are provided by the Assisted Living Federation of America (2011b) below in Figure 4.4.

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•  Americans With Disabilities Act •  Civil Rights Act of 1991 •  Rehabilitation Act of 1973 •  Family and Medical Leave Act •  Fair Housing Amendments Act •  Fair Labor Standards Act •  Occupational Safety and Health Act

FIGURE 4.4  Federal statutes that impact assisted living. Source: Assisted Living Federation of America (2011b).

FINANCING Most older adults have incomes that are well below what it costs to live in a typical assisted living community. In 2008, the average base annual cost of assisted living was about $36,000/year (MetLife, 2008); however, more than three in four adults aged 80 or older have incomes below this amount. As a result, many older residents finance their assisted living costs by supplementing their personal incomes using a variety of private and public payment sources.

Private Pay According to industry reports, about two in three assisted living residents rely on their own personal resources as their primary source of payment (see Table 4.2). Private-pay options include tapping personal assets, receiving assistance from family members, and using LTC insurance benefits. It is believed, though not well documented, that low- to moderate-income residents use the proceeds from the sale of their homes to supplement their income. This, along with other personal savings and investments, is probably the most common way that assisted living residents supplement their own incomes. Families were the primary or secondary sources of payment for 11% and 24% of residents, respectively. These are typically adult children who contribute a few hundred to thousands of dollars each month to cover monthly charges. Anecdotally, recent economic conditions, including loss of employment and investments, have made it more difficult for some families to continue providing financial support. This may partly explain a reported 23% decline in the proportion of residents relying primarily on family financial support between 2006 and 2009 (American Association of Homes and Services for the Aging, 2009). Where Medicaid assistance is not available for assisted living, this can result in moves to less costly settings, typically smaller adult family homes, as well as more costly nursing homes for more impaired residents. LTC insurance represents the third private-pay option that assisted living residents may tap. Although coverage has grown considerably in the last two decades, penetration among current assisted living residents remains fairly limited. LTC insurance benefits were either the primary or secondary source of payment for only 6% and 9% of assisted living residents, respectively. This is likely due to limited adoption among the oldest old since premiums are not affordable to most individuals in this age group. However, coverage rates will likely increase assuming higher enrollment among younger cohorts and because eligibility requirements and reimbursement levels are considered favorable for assisted living.

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TABLE 4.2  Assisted Living Payment Sources Primary (%)

Secondary (%)

Private Self Family Long-term care insurance

66.0 10.6 6.1

30.2 24.1 9.3

Public Medicaid SSI/state supplement VA

12.7 2.5 0.3

4.3 16.7 7.4

1.9

8.0

Not reported

Note: SSI, Supplemental Security Income; VA, Veterans Affairs. Source: American Association of Homes and Services for the Aging, American Seniors Housing Association, Assisted Living Federation of America, National Center for Assisted Living, and National Investment Center (2009).

Public Financing The most common public sources of payment for assisted living are Supplemental Security Income (SSI), followed by Medicaid benefits and veterans programs. Monthly SSI payments represent about a third of what the average assisted living community charges. Nevertheless, it is probably the most common source of public payment as other sources may be layered on. States may also provide a supplemental payment (SSP) above the monthly SSI payment to cover additional room, board, and some service costs. In 2011, for example, an individual living in a California licensed residential care facility for the elderly (RCFE) could receive $1,086/month in SSI/SSP—$476 for room-and-board costs, $506 for services, and $128 for personal expenses. Medicaid programs in most states will reimburse some form of assisted living although the financing strategy will have different implications in terms of resident eligibility, the characteristics of eligible providers, and program size. Medicaid payments are made directly to providers for services only, whereas room-and-board costs are paid by the resident along with any supplemental payment that states may choose to provide. Medicaid programs in 10 states still do not pay for assisted living services. Despite the rapid overall growth in Medicaid assisted living programs during the last decade, the estimated supply of Medicaid-funded units still remains relatively low. In 2010, a large majority of assisted living communities (57%) did not report having any Medicaid residents (Park-Lee et al., 2011). The most recent national estimates suggest that almost one in five residents is a Medicaid recipient, which is much higher than industry estimates, probably due to study sample differences. Benefits available through the U.S. Department of Veterans Affairs (VA) are the least common among public payment options. A small but growing number of older assisted living residents are covering their monthly costs through the VA’s aid and attendance and the housebound programs, which provide a cash benefit for eligible veterans, their spouses, or dependent parents. In 2009, just over 7% of assisted living residents relied on VA benefits as a secondary payment source (American Association of Homes and Services for the Aging, 2009).

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ADMINISTRATION AND MANAGEMENT According to common practice and state regulations, the daily operation of an assisted living facility is the primary responsibility of a full-time administrator. Whether centralized or not, the following are key functional areas that include a range of administrative and managerial oversight activities: 1. Accounting and financial management: Budgeting and financial reporting; invoicing residents and other payers; paying vendor invoices; ensuring lender compliance. 2. Business management: Maintaining contracts with vendors (e.g., pharmacy, food services, equipment servicing); maintaining required records; managing major incidents and investigations; securing and managing insurance coverage; quality assurance, compliance, and risk management. 3. Dietary and food services: Menu planning; ordering raw food supplies and equipment; preparing, serving, and delivering meals; addressing special dietary needs; meeting food safety and sanitation requirements. 4. Housekeeping and laundry: Ensuring clean and orderly living spaces, common areas, and workspaces; ordering supplies and equipment; washing and delivering resident and building laundry. 5. Human resources and personnel management: Managing staffing levels; recruiting, hiring, supervising, training, and terminating employees; administering payroll and employee benefits programs; addressing grievances; preventing and responding to workplace injuries; evaluating individual performance. 6. Marketing and community relations: Conducting educational presentations; referral source networking; hosting special events; responding to inquiries and referral sources; managing media relations and advertising. 7. Physical plant maintenance: Inspecting and maintaining building interiors and exteriors; maintaining building systems (e.g., electrical, plumbing, gas, fire sprinkler, alarms, security, etc.); conducting preventative maintenance, repairs, and replacement of major equipment. 8. Resident care and wellness: Evaluating resident needs and preferences; developing, updating, and implementing resident service plans; coordinating third-party services (e.g., home health, hospice, day care); arranging medical care and related transportation; responding to incidents and acute care episodes; processing, ordering, and administering physician-ordered medications and treatments; managing chronic care needs. 9. Social and recreational programs: Facility policies and procedures are required to formally represent how these and other key management functions are carried out, whether as determined by company preference, state regulations, industry practice, or other external factors.

Facility Size and Ownership Considerations In very large facilities, selected administrative and management functions are typically delegated to departmental supervisors. These may include directors of resident care, food services, marketing, maintenance, and activities, whose specialized skills and knowledge can be advantageous, particularly when organizing and delivering a larger volume of services to 100 or more residents. Although the allocation of service delivery across specialized departments is believed to provide efficiencies and greater accountability, it can also create certain challenges related to interdepartmental coordination. Residents can also become frustrated with having to contend

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with multiple individuals for different service needs. By comparison, smaller facilities are more likely to employ universal workers who are cross-trained to perform multiple caregiving tasks, such as serving meals, washing laundry, helping with showers, or assisting with medications. Similarly, the wide range of administrator responsibilities requires deeper engagement across multiple functional areas. Chain affiliation may also determine how much control administrators have over certain managerial functions as well as access to special expertise. This is partly because certain functions come to be managed by regional or corporate office personnel. Centralized corporate functions typically include accounting, benefits administration, marketing, human resources, payroll, and quality assurance. Large (26–100 beds) and very large (more than 100 beds) facilities are more likely to be chain affiliated (57% and 65%, respectively) than small- (4–10 beds) and medium-sized (11–25 beds) facilities that tend not to be chain affiliated (23% and 38%, respectively; Park-Lee et al., 2011). Advantages of centralized off-site management functions may include time savings for the administrator, access to expert support, and lower cost benefits due to economies of scale. Related disadvantages include diffused accountability, communication challenges, and problem-resolution delays.

Market Forces Assisted living administrators face a range of opportunities and challenges that are shaped by external market forces. First, older population growth and disability projections suggest that demand for services will remain relatively strong. However, consumer purchasing decisions seem to be delayed somewhat as less disabled older adults are better able to adapt their homes and secure other community-based service options. Second, the economic downturn beginning in 2008 seemed to curb demand both in terms of delayed moves due to asset value losses and eroded financial support from adult children. Relatively flat supply growth due to limited financing in most markets may have offset shifting demand during the last few years. Third, the assisted living industry has experienced more growth through acquisition than in previous decades when new development financing was more readily available. Ownership changes can be a very challenging experience for facility administrators and staff particularly in communities that prefer local ownership and control. Fourth, segments of the seniors housing industry, particularly for-profit chains and larger nonprofit organizations have increasingly been diversifying their portfolio of housing types and community-based services. Adding on-site adult day services, off-site home care, and other related services can provide additional revenue sources and an expanded customer base. Finally, providers have also been responding to increased demand for dementia-related services by developing new specialized buildings or wings for residents who may be more difficult to serve in larger assisted living communities.

Human Resources Arguably, the most common and complex problems faced by assisted living administrators have to do with managing a high-quality workforce. Administrators must have general knowledge of recruitment, selection, and termination practices that are typically governed by company policies, as well as federal and state employment

4.  ASSISTED LIVING COMMUNITIES  83

laws. For example, the hiring process may be partly a function of state licensing regulations that require certain credentials for specific positions, that criminal background checks be conducted using a state registry, and that employees cannot provide certain services until after having completed a mandated training program. Administrators must also be knowledgeable about workers’ compensation practices in the event of work-related injuries as well as benefits programs designed to attract, reward, and retain employees. They must have some knowledge for managing employee relations, such as handling performance problems and labor disputes. Some of these practices are shaped by company policies regarding periodic performance reviews, as well as employee discipline and termination. Such policies should be developed and updated to comply with federal employment laws (e.g., see Figure 4.4). State labor laws and licensing regulations may also shape certain employee practices, such as how overtime pay is determined and minimum annual requirements for continuing education. However, the most difficult challenges that assisted living administrators face involve the nonregulated aspects of hiring and retaining individuals with the right mix of skills, knowledge, and qualities to perform a wide range of tasks, work effectively with others, and serve a diverse population of older and disabled adults. Wages and benefits tend to be less generous than competing sectors of the seniors housing and health care industries. Workers also tend to have less experience and preemployment training. As a result, there is a steeper learning curve for new employees, particularly in communities that have few or no assisted living residences. Very flat organizational structures tend to provide limited opportunities for career advancement, which can adversely impact longer term retention of younger workers. As a result, national and state trade associations provide their members with educational content and resources about promising and/or effective workforce practices.

Resident Service Management Effective management of resident services is the most important management function for assisted living administrators. This begins with procedures established to gather key information about a resident’s needs and preferences before the decision is made to move into the residence. Pre–move-in evaluations, or assessments, include interviews with the prospective residents, family caregivers, and health care providers and are intended to provide preliminary information about whether the resident meets the facility’s move-in (or admission) criteria as well as for developing an initial plan of services. An important aspect of this process is also providing residents and family decision makers with adequate information both to make move-in decisions and have realistic expectations about services as well as other key areas, including staffing, charges, policies, and so forth. These procedures are largely shaped by state regulation as well as company policies. Once a resident moves into the assisted living community, these regulations and established procedures determine how individualized resident service plans are developed and implemented. Periodic reviews and revisions are typically required to ensure that service plans reflect changing resident needs and preferences. Over time, assisted living providers have been increasing their capacity to provide more specialized services, whether to accommodate consumer preferences to age in place or in response to increased competition. This may include engaging nurses for managing chronic care needs and caregiver training; working more closely with hospice

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and home health agencies both as referral sources and service delivery partners; and modifying programs and environments to serve residents with moderate to severe cognitive impairment. Managing transfers to and from acute or subacute settings presents another set of challenges both to ensure smooth transitions and continuity of care.

CASE STUDY: MODEL PROGRAM Rock Cove Assisted Living Community is a 30-unit facility located in rural Washington State. For the last 14 years, this community has successfully served a mix of private-pay and publicly subsidized residents. Figure 4.5 illustrates the community specifics and demographics.

Location Stevenson, Washington (located in southern Skamania County along the Columbia River) Ownership Nonprofit, public housing authority Management For-profit, multifacility operator Opening date 1998 License type Boarding Home Building characteristics Single-story Craftsman style—W shaped Number of units 30 Unit mix 20 studios (308 square feet) 10 one bedrooms (506 square feet) Size of most common unit 308 square feet Context Rural Community facilities No Community meals Families and guests Occupancy Stats Average occupancy 99% Resident turnover 31% Medicaid 52% Private pay 48% Resident Population Average age Age range Female Married Service Needs Bathing Dressing Ambulation Eating Cognitive impairment   Mild–moderate   Severe Disruptive behaviors Medications

84 59–97 64% 17%

93% 69% 64% 9% 52% 35% 31% 91%

FIGURE 4.5  Rock Cove Assisted Living community.

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Project History The development of Rock Cove Assisted Living Community was a collaborative effort that involved participation and contributions by multiple partners, including (a) the local governing board of Skamania County, (b) Community Advisory Committee, (c) Skamania County Senior Services Department (d) Washington State Department of Community Trade and Economic Development, (e) Washington Community Reinvestment Association, and (f) a highly experienced development team. After deliberation, they voted to authorize the development of an assisted living community on property owned by Skamania County. They selected Columbia Cascade Housing, a local community development corporation, to act as the nonprofit sponsor to own and operate the project, and in November of 1997 the county entered into a long-term lease with Columbia Cascade Housing Corporation (CCHC). Under the terms of the agreement, CCHC, a local nonprofit community development corporation, had the responsibility of developing, owning, and operating the Rock Cove community.

Overview of the Project Rock Cove’s mission is to provide affordable housing to seniors of all income levels while allowing them to age in place with considerable independence and dignity. Created in response to an unmet need for these services for older adults who are not able to live alone, but who do not need continuous skilled nursing care. Half of the units are targeted toward low- to moderate-income seniors. Rock Cove is a single-story Craftsman-style building containing 18,390 square feet (Exhibit 4.1). The location of the building offers spectacular views of the Columbia River Gorge, which enhances the livability for all residents. By having one level, this is a highly efficient design. Operating costs are reduced and residents EXHIBIT 4.1  Rock Cove Assisted Living Community

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EXHIBIT 4.2  Overview of Rock Cove Assisted Living Community

enjoy the ease of moving throughout the common areas. The spacious living and dining areas are beautifully appointed with a fireplace and heavily timbered vaulted ceilings. Other features include activity and library areas, hair care salon, and whirlpool bath (Exhibit 4.2). Apartments have fully accessible bathrooms with a locking medicine cabinet, roll-in shower, and emergency call cord. A wide range of services are available at Rock Cove in a comfortable homelike setting. Privacy is respected and maximum independence is encouraged. The level of care is flexible and is based on assessment at move-in and monthly evaluations. A 24-hour professional staff with RN supervision provides prompt and compassionate assistance.

Services Included •  Three meals plus snacks served daily •  Nursing services, medication assistance, injections, and chronic care management •  Housekeeping, laundry, and maintenance services •  Bathing and personal hygiene assistance •  Assistance with ambulation needs •  Memory care and behavior management •  Life-enrichment programs and Alzheimer support group •  Transportation, coordinated through Skamania County Senior Services

Staffing and Partnerships Rock Cove is located in rural Skamania County where unemployment rates are among the highest in the state of Washington. By providing essential jobs for an ­average of 17 full-time employees annually, it serves as a vital contributor to

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economic growth. Additionally, Rock Cove has partnered with a variety of outside service providers such as visiting home care and hospice agencies, podiatrists, audiologists, and massage therapists.

Community and Partnerships Rock Cove strives to keep the residents’ lives enriched with daily offerings of Tai Chi, line dancing, and chair yoga that improve strength, balance, and mobility. Massages, facials, and footbaths are not only enjoyable but also help ensure healthy skin. Musical entertainment, games, and planned events encourage residents to participate in group activities. Other activities are intended to maximize Rock Cove’s visibility and engagement with the larger Stevenson community. For example, Rock Cove has entered award-winning floats in the Skamania County Fair, which are designed and executed with resident participation. A new intergenerational greenhouse was built with local grant funding and local grade-school participation. An annual wine-tasting fund-raiser event is very popular and attracts hundreds of local citizens of all ages. Intergenerational activities include residents’ tutoring in local classrooms, hosting Easter egg hunts for preschool children, and offering the facility as a meeting place for Girl Scout troops.

Additional Accomplishments •  The director is a long-time resident of Skamania County and has been managing Rock Cove since 2001 •  2000 Excellence in Affordable Assisted Living Award from the American Association of Homes and Services for the Aging and National Cooperative Bank (NCB) Development Corporation, •  2004 Skamania County Chamber Business of the Year in 2004 •  2009 Volunteer Member of the Year by Skamania County Chamber of Commerce •  2011 Administrator of the Year by the National Center for Assisted Living and the Washington Health Care Association •  2011 Signature Intergenerational GOLD Program between local schools and Rock Cove residents

SUMMARY Assisted living is an important component of the LTC system. It provides an alternative community living arrangement for persons or couples with limitations in the ability to perform instrumental ADLs (e.g., shopping for groceries, meal preparation, medication management, housekeeping) and for some limitations in ADLs (e.g., bathing, dressing, toileting). Some industry and consumer advocates would argue that assisted living has the potential to reduce the need for placement in (or at least the length of stay) nursing facilities. The supply of assisted living now approaches that of nursing home beds. State regulations have been adapted to permit more flexibility on the part of consumers and providers in assisting in wide

88  I.  OPTIONS IN LONG-TERM CARE

ranges in care needs. Similarly, private LTC insurance has expanded its benefits to include coverage of assisted living. Although there are many positive trends in the assisted living industry, challenges also exist. Among these are that the cost of this housing has risen rapidly and, in many areas, approaches (if not exceeds) the daily rate for nursing home. This is a particular problem for persons who require financial assistance. Medicaid programs (other than through special regulatory waivers) do not reimburse the room-andboard or even personal care charges for assisted living residents. Other forms of public subsidy of housing costs, such as state supplemental payments (SSP) to the federal SSI program, have similarly not kept pace with the rising cost of assisted living. Continued expansion of the role and function of assisted living in the continuum of care seems assured, but the supply of this housing likely will grow at a slower rate going forward. Slower growth will be a function, in part, of the expenses associated with the daily operations and weakened consumer resources (e.g., housing equity) needed to afford this housing option. Other factors affect policy support. Among these is uncertainty about the ability of the assisted living industry to assure a high and consistent quality of care across the full range of resident needs. This issue has not been extensively studied, but assisted living (in the inclusive use of this term) seems to be more successful in accommodating the changing resident care needs of those with dementia than in handling persons with complex care needs associated with multiple chronic conditions. The management of the complex care needs population requires the industry to better integrate both the social and health models of care and assistance. Such integration may rely more on partnerships or collaboration with health care providers than in having the assisted living communities assume responsibility for disease management. Another fundamental issue, looking into the future, is whether assisted living communities will continue to develop and operate as separate communities, or whether this trend will reverse to one in which the personal care level of housing units is available within a campus facility that also includes independent housing. Many factors come into play in all of this. Among these are consumer resources, the availability of affordable home care services, and the availability of a labor supply for LTC.

REFERENCES American Association of Homes and Services for the Aging, American Seniors Housing Association, Assisted Living Federation of America, National Center for Assisted Living, & National Investment Center. (2009). Overview of assisted living. Washington, DC: Stratton Publishing and Marketing. Armstrong, E., Rhoads, M., & Meiling, F. (2001). Medication usage patterns in assisted living facilities. Consultant Pharmacist, 16, 65–69. Assisted Living Federation of America. (2005). Special report: Executive director/administrator requirements: Survey of state practices. Washington, DC: Author. Assisted Living Federation of America. (2011a). ALFA’s care provider philosophy. Retrieved from http://www.alfa.org/alfa/Care_Provider_Philosophy.asp Assisted Living Federation of America. (2011b). Federal statutes that impact assisted living. Retrieved from http://www.alfa.org/alfa/Federal_Statutes_that_Impact_Assisted_Li.asp Assisted Living Federation of America. (2011c). Senior living options: Assisted living. Retrieved from http://www.alfa.org/alfa/Assisted_Living_Information.asp

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Assisted Living Workgroup. (2003). Assuring quality in assisted living: Guidelines for federal and state policy, state regulations, and operations. Washington, DC: U.S. Government Printing Office. Carlson, E. (2005). Critical issues in assisted living: Who’s in, who’s out and who’s providing the care. Washington DC: National Senior Citizen’s Law Center. Center for Excellence in Assisted Living. (2013). Center for Excellence in Assisted Living: About Us. Retrieved from http://www.theceal.org/about-us Harrington, C., Chapman, S., Miller, E., Miller, N., & Newcomer, R. (2005). Trends in the supply of long term care facilities and beds in the United States. Journal of Applied Gerontology, 20, 1–19. McAllister, D., Schommer, J., McAuley, J., Palm, J., & Herring, P. (2000). Comparison of skilled nursing and assisted living residents to determine potential benefits of pharmacist intervention. The Consultant Pharmacist, 15, 1110–1116. MetLife. (2008). The MetLife market survey of nursing home & assisted living costs. New York, NY: MetLife Mature Markets Institute. Mollica, R., Sims-Kastelein, K., & O’Keeffe, J. (2007). Residential care and assisted living compendium, 2007. Washington, DC: U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, Office of Disability, Aging and LongTerm Care Policy and Research Triangle Institute. Retrieved from http://aspe.hhs.gov/ daltcp/reports/2007/07alcom.htm National Center for Assisted Living. (2011). Guiding principles for assisted living. Retrieved from http://www.ahcancal.org/ncal/about/Documents/GPAssistedLiving.pdf Park-Lee, E., Caffrey, C., Sengupta, M., Moss, A., Rosenoff, E., & Harris-Kojetin, L. D. (2011). Residential care facilities: A key sector in the spectrum of long-term care providers in the United States (NCHS Data Brief, No. 78). Washington, DC: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health. Rhoads, M., & Thai, A. (2002). Potentially inappropriate medications ordered for elderly residents of assisted living homes and assisted living centers. Consultant Pharmacist, 17, 587–593. Spillman, B., & Black, K. (2006). The size and characteristics of the residential care population: Evidence from three national surveys. Washington, DC: U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Office of Disability, Aging and Long-Term Care Policy. Wilson, K. B. (2007). Historical evolution of assisted living in the United States, 1979 to the present. The Gerontologist, 47(Spec No 3), 8–22. U.S. General Accounting Office (GAO). (1999). Assisted living: Quality of care and consumer protection issues (GAO/T-HEHS-99–111). Washington, DC: Author. U.S. General Accounting Office (GAO). (2004). Assisted living: Examples of state efforts to implement consumer protections (GAO-04–684). Washington, DC: Author. Yee-Melichar, D., Renwanz-Boyle, A., & Flores, C. (2011). Assisted living administration & management: Effective practices and model programs in elder care. New York, NY: Springer Publishing Company. Zimmerman, S., Gruber-Baldini, A. L., Sloane, P. D., Eckert, J. K., Hebel, J. R., Morgan, L. A., . . . Konrad, T. R. (2003). Assisted living and nursing homes: Apples and oranges? The Gerontologist, 43(Spec No 2), 107–117.

5

CONTINUING CARE RETIREMENT COMMUNITIES John W. Milford Diane L. Griffeath Darlene Yee-Melichar

LEARNING OBJECTIVES On the completion of Chapter 5, the reader will be able to continuing care retirement communities (CCRCs) and their •  Define  importance for seniors in America •  Understand the history and characteristics of ownership for CCRCs •  Learn the state statutes and accreditation requirements for CCRCs •  Examine the financial model of CCRCs and their outcomes as for-profit

organizations •  Identify the many benefits of CCRCs and the managerial expectations

and “stress points” in the operation of these communities •  Use pertinent data and studies providing support for the CCRCs

American seniors today might reasonably expect to live a longer, more independent life than their parents or grandparents before them. Many have legitimate concerns about the variations in health care and personal care that may be required in later life and question whether their income and financial assets will be adequate to cover the cost of needed care. They strive to maintain autonomy and a sense of control over their future living environment. The purpose of the CCRC model is to provide a range of services in one residential location, allowing seniors to age in place and avoid the need to move as care needs change. In many CCRCs, an agreement that guarantees a predictable monthly fee regardless of a change in care level provides an additional sense of security.

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WHY CCRCS? CCRCs are described as follows: Diverse in their offerings, contract types, and personality but they typically include apartments or cottages for independent living, assisted living services, and a dedicated facility for skilled nursing care, all on one campus. They may or may not include specialized services for dementia care, although the increasing need for memory support care makes this a popular option. (Elderlaw Associates, 2010) Social and recreational activities; options for dining, health, and wellness programs; transportation; housekeeping; maintenance; and security services are provided by trained and credentialed staff whose personal dedication is most frequently cited as a reason for resident satisfaction (Wylde, Smith, Schless, & Bernstecker, 2009). Residents, with rare exception, are able to remain in the CCRC as their care needs change. They can receive differing levels of staff support and move through the continuum of care: from independent living to assisted living, to skilled nursing, as needed. Remaining in their community allows the resident to be cared for in an environment they know and trust; it allows for continuity in relationships with friends and neighborhoods, and can help preserve the closeness of husband and wife who may be at different care levels. (Zarem, 2010, p. 4)

HISTORICAL DEVELOPMENT Although the major growth period for CCRCs was in the 1970s and early 1980s, the model itself is more than a century old. As early as 1900, social and religious organizations provided shelter, community life, and ongoing care to older adults, often in exchange for accumulated assets. Some CCRCs have evolved from their original form as a nursing home, and contain a proportionately high number of beds for skilled nursing care. Others were specifically built for multiple levels of care, and contain a larger number of apartments for independent living. CCRCs have steadily grown since the 1960s in numbers, geographic variety (urban vs. rural) and demographic variety (modest vs. upscale and vigorous vs. frail). (Zarem, 2010, p. 5)

OWNERSHIP By the mid-1980s, the CCRC industry began to mature and more for-profit organizations entered the market. A variety of contract types began to emerge, including options for service packages and entrance fees, which were attractive to a wider pool of prospective residents. Growth remained strong and between 1990 and the mid2000s there were 10 to 20 new communities built annually. Since 2008, the rate of growth has declined due to the recessionary affects on the availability of capital and confidence in the housing market. According to the U.S. Government Accountability Office, as of 2010, there were approximately 1,900 CCRCs in the United States located in 48 states and the District of Columbia. States with the greatest number include (in order) Pennsylvania, Ohio, California, Illinois, Florida, Texas, Kansas, Indiana, Iowa, and North Carolina (U.S. Government Accountability Office, 2010, p. 3).

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A clear summary of CCRC ownership is published in the Ziegler National CCRC Listing and Profile (Hermann, Brod, & Girardi, 2009): •  A CCRC may have not-for-profit sponsorship (82%) or for-profit ownership (18%). •  Approximately half of all CCRCs are affiliated with faith-based organizations; among those affiliations, 21.1% are Lutheran, 17.6% are Methodist, 13.8% are Presbyterian, and 12.8% are Roman Catholic. •  A CCRC may be a single-campus organization or part of a system; the majority are part of a system. •  A typical CCRC has fewer than 300 total units; about one third have more than 300 units; only 8% have more than 500 units. •  CCRCs are located in a range of geographical areas from urban to suburban to rural.

OVERSIGHT AND REGULATION According to the U.S. Government Accountability Office (2010), the federal government does not regulate CCRCs. However, many states have enacted statutes designed to protect seniors from, for example, paying an entrance fee to a nonviable project by requiring the escrow of entrance fees and mandating certain disclosures. Still, 12 states do not have any CCRC specific regulations, so a provider in one state may be subject to consumer protection regulations, whereas a similar entity in another state may not. Although some CCRCs voluntarily exceed disclosures and protections required by state regulations, not all states require the disclosure of policies likely to have a significant impact on residents’ satisfaction, such as policies for moving between levels of care. According to a CCRC industry study, of the 38 states that have some level of regulation specifically addressing CCRCs, 34 states collect and review the standard form contract that the CCRC enters into with residents (American Association of Homes and Services for the Aging [AAHSA]/American Seniors Housing Association [ASHA], 2009). For perspective, keep in mind that many older Americans face selling their home, often their primary asset, to pay CCRC entrance fees. As a result, their ability to support themselves in the long run will depend on the long-term viability of their CCRC (U.S. Government Accountability Office, 2010). Not having federal regulations leaves the door open to disparity in the CCRC marketplace, and makes consumer research all the more important to consumer satisfaction. Perhaps this lack of uniformity and the thought of placing their futures and affairs in the hands of a management company are so daunting that many qualified prospects choose not to move to a CCRC.

STATE PROTECTIONS FOR CCRC RESIDENTS Prior to and during the development of a CCRC, state protections afforded to consumers included a statutory certificate of authority process (or credentialing of developers), Department of Social Services (DSS) or Department of Insurance financial oversight, a mandatory feasibility study, and phased approvals at each step of development.

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Once operational, CCRCs are subject to periodic balance sheet review, 20-year actuarial projections every 35 years, and periodic site visits by regulatory agency staff as well as annual review by local DSS Community Care Licensing evaluators in their independent and assisted living apartments and by state Department of Public Health evaluators in their skilled nursing units. General well-being of the CCRC and changes in CCRC contract language are overseen by state DSS continuing-care contracts branch or in some states, the Department of Insurance.

CCRC ACCREDITATION CCRCs that seek accreditation do so through Commission on Accreditation of Rehabilitation Facilities/Continuing-Care Accreditation Commission (CARF/ CCAC), an independent, nonprofit organization that provides accreditation services internationally at the request of health and human service provider organizations focused on advancing the quality of services and outcomes. The CCRC accreditation process starts with a commitment to continuous improvement and culminates with a survey team comprised of industry peers who conduct the on-site survey. After a service provider commits to accreditation, the accreditation process begins with a thorough self-evaluation that applies the relevant CARF standards against the organization’s practices. Once the organization is in conformance to the standards, a request for a CARF survey is submitted at least 3 full months in advance of the desired date for an on-site survey. By the date of the survey, the provider should be in conformance with the standards for at least 6 months. Following completion of the survey, CARF renders an accreditation decision and delivers a report that identifies the service provider’s strengths and areas for improvement and its level of demonstrated conformity to the standards. To demonstrate its ongoing conformance to the CARF standards, an accredited provider completes a quality-improvement plan after receiving the survey report and submits an annual conformance to quality report each year throughout the accreditation term.

THE CCRC FINANCIAL MODEL Primary Sources of Revenue •  A fixed entry fee is charged, usually to offset the cost of the real property, building, furniture, fixtures, and equipment, future medical costs (when included in the agreement), and to build reserves for refurbishment and replacement of major furnishings and equipment. •  Adjustable monthly fees and services for an additional charge offset the operating cost of day-to-day resident services such as labor, supplies, utilities, medical, and all other operating costs, including routine maintenance.

Third-Party Revenue for Care Services •  Medicare covered days in the Nursing Center by residents or nonresidents, if capacity allows. •  Medicare secondary insurance can contribute to revenue if residents are required by the CCRC to purchase it.

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•  Medicaid if the CCRC participates in the program. •  Long-term care (LTC) insurance and private-pay sources are less common but have a place in the total revenue picture.

Pricing the CCRC •  Entrance fees may be tied to land and development costs, which are more predictable. •  Monthly maintenance fees offset the cost of providing resident services and can vary over time. Management can allocate initial prices and fee increases to entrance fees or to monthly fees as long as all costs are covered. Particular care must be taken after opening a CCRC to control program creep, which can lead to a steep monthly fee increase or an abrupt service reduction in the early years (and beyond, if monthly fee increases fail to keep pace with expanding services).

CCRCs and Profit Most CCRCs are not-for-profit organizations. Typically, not-for-profits exist primarily for the benefit of the larger community in which the CCRC is located and hold themselves to standards of social accountability with a volunteer board of directors to govern the organization. Not-for-profit CCRCs, often 501(c) (3) public benefit corporations under the federal tax code, are granted a preferred tax status and not required to pay income taxes. In many cases, they are also exempt from local property taxes and may accept tax-deductible donations. A crucial difference between not-for-profit and other business models is the approach to decision making. While many businesses begin with questions such as how do we ensure a reasonable return for our shareholders, a properly focused not-for-profit organization asks a set of different questions. What is the best for the residents and the clients we serve? What is best for our community? And how can we reinvest revenues for the betterment of the entire community? (Leading Age/Ziegler 100, 2011, p.7) Note that the term not-for-profit does not mean operating at a loss. Making money allows nonprofits to fulfill their mission and, commonly among multisite notfor-profits, a surplus at one location will be applied to assist another location in temporary financial difficulty, thus spreading the economic risk that comes with doing business in a single location. In summary, making money among not-for-profits is not dissimilar to commercial operators whose gains are distributed to investors and reinvested in the enterprise. Even though profit is not an organization’s primary purpose, revenues must exceed expenses over the long term to cover current and future expenses and obligations. Revenue received in excess of expenses is typically reinvested in the CCRC or retained as reserves to mitigate future unforeseen expenses. Recently, there has been an increase in the number of for-profit organizations operating CCRCs. These organizations are accountable to individual owners who may be private investors or shareholders. Like the not-for-profits, a board of directors may be appointed to govern the organization, but in the for-profit model, a portion of revenue in excess of expenses is returned to investors through dividends or other means. With either model, it is in the CCRC’s financial best interest to provide

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high-quality services efficiently so that it is attractive to consumers and profitable for mission expansion or return on investment for shareholders.

CCRC CONTRACT TYPE When the decision to move to a CCRC has been made, the consumer and a representative of the organization will usually complete a contract or written agreement signed by both parties. The contract specifies the obligations of both the CCRC and the consumer with regard to services provided and payment for those services. It details the accommodations, services, and care the CCRC is obligated to provide, and it sets forth the financial obligations that new residents assume (i.e., the amount of the entrance fee and the amount of the monthly accommodation fee). Within the continuing-care field, there are three primary types of CCRC contracts: extensive, modified, and fee-forservice, as well as a variety of agreements for individual components of the CCRC. The naming of contract types will vary somewhat by state and not all states recognize every contract type. A CCRC may offer only one type of contract or offer a choice of contract types. (Commission on Accreditation of Rehabilitation Facilities – Continuing Care Accreditation Commission, 2007, pp. 7-10) Extensive (Type A) contracts, sometimes called life care agreements, include housing, residential services, amenities, and unlimited, specific health-related services with little or no substantial increase in monthly payments except to cover normal operating costs and inflation adjustments. CCRCs with extensive contracts usually have higher entrance fees than the other contracts highlighted below but more predictable future costs. Similar to purchasing LTC insurance, under an extensive contract a consumer transfers the risk of uncertain future health care costs to the CCRC. Although the transfer of risk is an advantage for the consumer, a disadvantage is the possibility that the consumer is paying up front for services that may not be fully used. The CCRC must accurately project future costs of care and wisely invest the entrance fees so it can fulfill its obligation to provide care. Modified (Type B) contracts also include housing, residential services, and amenities, but they include only a specific amount of health care (e.g., a limited number of days in the health center per year or per lifetime). The specified health care services are provided with no substantial increase in monthly payments, but after the specified amount of health care has been used the consumer pays either a discounted rate or the full daily rates for needed health care services. Modified care contracts generally involve a lower entrance fee than extensive contracts. The consumer retains much of the risk of future nursing home costs, and the CCRC assumes less financial risk. Consumers must be aware that if increased services become necessary, they will have to provide additional funding. The lower entrance fees for modified care contracts can make CCRCs more affordable for consumers who cannot afford the sizable entrance fee of an extensive care contract. Fee-for-service (Type C) contracts include housing, residential services, and amenities for an established fee stated in the contract, but under this type of contract, additional health care services are not included. Access to health care services can be guaranteed, but the consumer may be required to pay the established feefor-service rates. The entrance fee for fee-for-service contracts can be lower than both extensive and modified contract. Although they can be more affordable in the

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short run, fee-for-service contracts do not offer the consumer the financial security of extensive or modified contracts. The consumer maintains much of the risk and will need to provide additional funding if increased services become necessary. Fee-for-service contracts may be more attractive for consumers who want the range of care offered by a CCRC but cannot afford a large entrance fee or for those who are in better-than-average health and do not anticipate requiring much skilled nursing care. Rental agreements (Type D) allow consumers to rent their housing on a monthly or annual basis. Living in a rental retirement community may provide, but does not guarantee, access to health care services that are paid on a fee-for-service basis. Assisted living and nursing care agreements allow consumers to enter the assisted living unit or health care center from an external environment that is not part of the CCRC. The individual pays the established daily rate for the assisted living or nursing care services received. These contracts generally do not guarantee access to more than one level of care. Equity agreements may afford individuals ownership in shares of the community or association (typical co-op arrangement) by transferring actual ownership of the home, condominium, or townhouse within the CCRC. Health care and services may be purchased for additional daily or monthly fees. Resale of the real estate is typically restricted to age- and income-qualified buyers. With an equity agreement, property tax is incurred, yet individuals or their estates may benefit from appreciation of the property as specified by the terms of the agreement. In addition, equity ownership affords tax benefits such as interest deductions and avoidance of capital gains tax on the sale of the home lived in prior to moving to the CCRC.

CCRC OPERATIONS The CCRC’s operating model depends on having residents enter independent living units and pay entrance and monthly fees. The often large entrance fees can help CCRCs maintain cash reserves, and the monthly fees collected from independent living residents—whose cost to the CCRC is generally lower—go toward the cost of daily resident services and help subsidize care for residents who require assisted living or nursing care. Slow real estate markets, such as those of the last several years, can make it very difficult for older Americans to sell their homes to pay CCRC entrance fees. As a result, according to CCRC providers, occupancy levels at many CCRCs have fallen over the past several years. (U.S. Government Accountability Office, 2010 , p. 10) Because keeping a high occupancy rate is the key to successful CCRC operation, the ability to quickly fill vacancies is necessary for CCRCs to fund general operations and build financial reserves. Some CCRCs may also admit residents directly into their nursing, assisted living, or memory care facility as if it were a stand-alone facility to broaden their customer base and generate revenue. Prospective residents are screened to determine their general health status to determine the best living situation for them. Prospects must also submit detailed financial information that usually includes income and tax records to ensure that they can pay CCRC fees over time. Entry fees are typically paid as a large lump sum and can represent a substantial portion, if not all, of potential residents’ assets

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(Special Committee on Aging, 2010). Finally, an interview to assess social skills to determine suitability for community living is commonly done.

Management Variations Whether for-profit or not-for-profit, CCRC management teams are typically either a freestanding (single site) operation or one of a multi-CCRC organization (a multi) with centralized upper management or shared support staff. The difference is in the lineup of local management staff. That is, the management team at a freestanding CCRC can be expected to be larger than at a typical multifacility location. The qualitative advantage of a freestanding CCRC is that top management can be closer to the customer (the resident) and frontline operating staff, and the CCRC has the full attention of the top management and support personnel. By contrast, a multifacility CCRC, efficient because it carries only a portion of the management overhead expenses, often must “wait its turn” for the attention of shared support staff such as the clinical consultant, senior facilities director, information technology (IT) support, central accounting staff, human resources (HR), and the like. As well, multis compete for capital dollars and for priority when seeking campus refurbishment and replacement funding.

Effective CCRC Management Practices The local management sets the tone of a CCRC operation. The executive director who can attract and retain the best managers, provide the tools for them, and has the good sense to get out of their way will outperform another who is stifled under a top-down management organization. Seasoned managers who work together and who assist one another in delivering resident care and services often achieve remarkable levels of resident and staff satisfaction. Maintaining high occupancy, immaculate building maintenance, resident satisfaction, and ample financial reserves are the hallmarks of successful CCRC management.

Building an Operating Team First, assemble a staff of cheerful and supportive people. An eager, helpful person can be trained to the task at hand readily, but an unpleasant person can rarely be trained to be pleasant. For example, when managers and staff at a premiere San Francisco CCRC were asked to choose the character qualities (Gothard, n.d.) that made for a gracious workplace, they selected the following as the four most important: •  Gentleness: Showing care and concern in meeting the needs of others. •  Dependability: Completing what I consented to do. •  Punctuality: Showing high esteem for other people and their time. •  Initiative: Recognizing and doing what needs to be done before being asked to do it. At this same community, regular training and periodic performance evaluation reinforced these qualities of workplace ambience as well as the fine points of service. Needless to say, such a staff was greatly esteemed by the residents and

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generously gifted each holiday season. After 15 years of operation at that location, there have been no labor relations problems causing the staff to bring in a third party to look after their well-being in the workplace.

Resident Satisfaction—and a Common Source of Dissatisfaction Resident satisfaction is a prime goal of management, and it is largely based on resident perception. Knowing which elements yield the greatest increase in satisfaction can make for a mutually fulfilling living and working environment for both parties throughout the decision making process. Nonphysical attributes were found to have greater impact on approval levels than physical attributes did. Five areas of nonphysical attributes contributed the most to residents reporting high satisfaction: quality of staff; quality of daily life (cultural, musical, arts/crafts, entertainment and social opportunities); dining flexibility (quality of food, variety of menu items, variety of services and times available to dine); personal control (privacy and sense of safety and security); and comfort (ease of making friends and the sense that the residence is one’s home). (Wylde et al., 2009, p. 12) However, on the other hand, the seeds of dissatisfaction may have been sown before the ink was dry on the entry agreement. CCRCs are financially complex and this has led to lengthy and detailed contracts that, in turn, have sometimes led to confusion by some consumers in fully understanding the various financial requirements and obligations of the CCRC. As a result, many affluent and highly educated residents have not understood the contractual provisions or disclosures. What is more, CCRC contracts and the resident handbook may be different documents, and some residents do not fully appreciate the difference until an issue arises.

Managing Expectations Using Disclosure and Transparency A prospective resident is likely to have questions about the CCRC contract, financial condition of the CCRC, the services and the handling of future changes in the charges or fees for those services, as well as the levels of care and the handling of changes in the required levels of care. (Leading Age/ASHA, n.d., pp. 2,3) Therefore, a CCRC should provide prospects with current audited financial reports, key financial indicators, and financial forecasts for future years (actuarial information), if available. Also address applicable entrance fee repayment provisions and a history of increases in monthly maintenance fees. Other contractual points to cover are resident transfers (within and outside the CCRC) and procedures to apply for financial assistance in cases of depletion of resident financial resources. CCRC strategies for disclosure of financial information to existing residents emphasize frequent, open, clear, credible, and honest communication with residents. First, provide resident access to CCRC management on an individual basis as well as through regularly scheduled meetings including dialogue. Also, provide CCRC residents, as stakeholders, access to financial reports and participation in the budget development process. As a final point, provide resident access to the board of directors through participation or representation.

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Overall, there are many ways in which the CCRC’s disclosure practices and its culture of transparency and responsiveness can address prospective resident questions and assist them in making an informed decision for their future, as well as assure current residents that the commitment they have made to the CCRC is prudent. Ultimately, older adults will utilize their own criteria for selecting a CCRC; but armed with the information made available by these suggested disclosure practices, they should be well equipped to make an informed decision. (Leading Age/ASHA, n.d., p.6)

Management “Stress Points” at CCRCs Because of the communal nature of a CCRC, there are problem areas that are familiar to the management of most communities. These include the following:

Dining Rooms The dining experience is central to socialization for new as well as established residents. A pleasant ambiance, conversations with friends, attentive service, and a fine-dining menu are what residents look to when arriving for meals. In the CCRC, there are separate dining venues for assisted living, memory care, and the nursing center. When a change in level of care has occurred from independent living to assisted living, it is a best practice to allow residents new to the higher level of care, if able, to dress and have meals with friends in the main dining room (Span, 2012). Guidelines for the ability to dine with independent residents include such competencies as the ability to order from the menu, to eat without assistance, to dress in keeping with the venue, and to not disturb other residents’ enjoyment of their meals. After a transfer, when the good graces of management are being tested by an inappropriate but insistent resident, Paul Gordon reminds us, CCRCs may rely upon the differing fire safety, staffing, and equipment standards existing among the three levels of care and argue that people in need of such care should remain in the appropriately licensed dining room for their own safety. (Gordon, Hanson, Marcus, & Rudy, 2000, p. 10) The question of mobility and use of assistive devices is best approached by allowing early or late access to needy residents and by “valet parking” walkers and other assistive devices to mitigate trip hazards in a crowded venue. However, a ban on the use of wheelchairs, or requiring transfer to dining chairs in fine-dining venues, is increasingly a losing proposition.

Motorized Wheelchairs and Scooters Urban high-rise CCRCs see far fewer motorized vehicles in use by residents than campus environments, but in either setting, liability may arise from personal injury to the rider or the bystander, not to mention property damage. Therefore, it is good practice to establish access and speed policies for the use of motorized vehicles in common areas such as elevators, dining or auditorium venues, or corridors, as well as implementing periodic competency testing.

Changes in Level of Care Living in a CCRC, residents face the risk of being transferred involuntarily from one level of care to another or of not being able to obtain on-site assisted living or nursing

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care when needed. Policies regarding admission and discharge from different levels of care can be subject to state law, but this decision can be a point of contention as well. Although older adults move to CCRCs to age in place, moving between levels of care has led to independent residents broadly reporting that they do not understand or agree with the rules concerning transition in levels of care. This mental roadblock was explored in a 2009 study of relocation within a CCRC and between levels of health care. It was found that this is one of the most stressful events older adults face because it threatens their autonomy, that is, their ability to make decisions for themselves (Shippee, 2009). Management typically expends a great deal of effort to clarify the process by use of repetition, written documents, and other media such as a brief film clip acted by familiar staff and fellow residents. However, the opposite can occur. The ready accessibility of levels of care and services in CCRCs can lead to conditioned helplessness through overcare of personal needs. That is, residents admitted temporarily to the nursing center become accustomed to being bathed, dressed, and served and considered it a hardship to return to the apartment on recovery. A team meeting followed by a care conference attended by the resident, caregivers, and family members usually cures this condition.

RESIDENT PARTICIPATION IN BUDGETING—A CASE STUDY Building rapport with the residents’ association is the key to successfully advancing the CCRC’s competitive position. Providing the resident council with financial updates and plans for improvements and changes is fundamental to keeping peace on the campus. For example, as budget development and rate adjustment season approaches, informing the council and enlisting its support creates an effective alliance. First, share the effect on their rates if nothing were done to curb increasing costs of operation. Then invite the council to review the list of management’s proposed service-package changes, with dollar savings attached to each change. Invite them to select the changes they would recommend to keep expenses from driving fees too high. In my experience, a list of 10 cost-cutting ideas totaling over $900,000 was provided the council. After study, they returned with a recommendation that 8 of the 10 be implemented; saving nearly $700,000 and cutting their prospective annual fee increase by 8%. The council made the recommendations known to the whole resident association membership, making the annual fee adjustment palatable and workable.

MODEL PROGRAMS—THE CAMPUS EFFECT University-based retirement communities with campus-related continuing CCRCs are becoming common nationwide, “dotting the landscape from Stanford to Penn State to the University of Florida and another 50 universities” (Creamer, 2011). The 350 residents of University Retirement Community—which has no legal or financial connection with the University of California, Davis, itself—may not realize it, but they’re on the cutting edge of what the continuing-care communities of tomorrow will look like: intergenerational, intellectually challenging and smack-dab in the middle of things. They work as Mondavi Center ushers and docents and they volunteer in campus research labs as well as the school’s arboretum. Some . . . perform in the university chorus. Some audit

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classes on campus. Current UC Davis students intern at the retirement facility, and faculty members give frequent guest lectures there. Forget the notion of traditional, seniors-only, golf-based retirement communities tucked on the edges of distant suburbs. Some experts think the future of retirement living depends not on segregation but rather on social connection—specifically, what their residents have in common. (Creamer, 2011, p. 1A) Moldaw Residences in Palo Alto, California, features a CCRC as part of a lively multigenerational Jewish heritage campus that includes a community center, a child care center, a performing arts center, and a health library. This approach brings balance to living in a setting that might otherwise be another enclave of older adults (Moldaw Family Residences, n.d.).

BENEFITS OF CCRC LIVING A scientific study conducted between 2002 and 2003 by Dr. Margaret A. Wylde’s ProMatura Group (2003) found that seniors living in CCRCs are more satisfied with their daily lives and are more likely to be happier and healthier than their contemporaries who remain in their own homes. It also found that the social and recreational programs offered at CCRCs provided seniors with many opportunities to meet new friends. The Office of Disability, Aging, and Long-Term Care for the U.S. Department of Health and Human Services released a research analysis that found that residents who live in CCRCs are healthier and live longer than people who do not live in CCRCs (Sanders, 1997). Their analysis also found that CCRC residents have less risk of disease and disability. The research specifically noted that CCRCs promote active lifestyles, support social involvement (thus diminishing the effects of isolation, anxiety, and depression), ensure suitable medical care, provide good nutrition, encourage overall wellness (frail older adults discharged from a hospital who have no help at home are at higher risk for relapse and rehospitalization), and conclude that CCRCs are a good choice for younger seniors.

SUMMARY CCRCs are a beneficial option to consider in elder retirement and transitional living. In this chapter, we explored what a CCRC is and how advantageous it can be for individuals to age in place. A CCRC can be a promising route for individuals to take, due in large part to the variety of services they provide and their natural promotion of active lifestyles. The case studies provided have shown that this type of care is revolutionary, intellectually stimulating, and affordable to members. As we continue to learn more about continuing-care facilities, CCRCs are flexible in their stages of care, available for necessary services (such as vehicular transportation), and supportive in the midst of a social environment for aging individuals. While we explore the many options for retirement and older adult care, the role of a CCRC is an important possibility to consider as we further our knowledge of maturing in place and gerontological work.

5.  CONTINUING CARE RETIREMENT COMMUNITIES  103

REFERENCES American Association of Homes and Services for the Aging (AAHSA) and American Seniors Housing Association (ASHA). (2009). The assisted living and continuing care retirement community state regulatory handbook. Washington, DC: Author. Commission on Accreditation of Rehabilitation Facilities—Continuing Care Accreditation Commission (CARF-CCAC). (2007). Consumer guide to understanding financial performance and reporting in continuing care retirement communities. CARF, 7–10. Retrieved from http:// www.carf.org/financialperformanceccrcs Commission on Accreditation of Rehabilitation Facilities—Continuing Care Accreditation Commission (CARF-CCAC). (2012). What is the CARF accreditation process? CARF International. Retrieved from http://www.carf.org/Accreditation/AccreditationProcess Creamer, A. (2011, March 25). Boomers, innovators show there are many ways to retire. Sacramento Bee, p. 1A. Retrieved from http://www.sacbee.com/2011/03/25/3502531/ boomers-innovators-show there.html#ixzz1HuJgJM1C#storylink=cpy Elderlaw Associates. (2010). The elder law update. Retrieved from http://www.elderlaw associates.com/newsletters/newsletter-2010–09.htm Gordon, P. A., Hanson, B., Marcus, V., & Rudy, L. L. P. (2000). Fair housing for CCRCs. Washington, DC: American Association of Homes and Services for the Aging. Retrieved from www.aahsa.org Gothard, B. (n.d.). Operational definitions of 49 character qualities. Retrieved from http:// billgothard.com/teaching/characterqualities Hermann, D., Brod, K., & Girardi, J. (2009). Ziegler national CCRC listing and profile. Chicago, IL: Ziegler Capital Markets – Senior Living Research. Leading Age/American Seniors Housing Association (ASHA). (n.d.). Continuing care retirement communities: Suggested best practices for CCRC disclosure and transparency. Retrieved from http://www.leadingage.org/uploadedFiles/Content/Members/CCRCs/Policy_ and_Regulation/CCRC_Best_Practices_on_Disclosure_and_Transparency_Paper.pdf Leading Age/Ziegler 100. (2011). Retrieved May 20, 2011, from http://www.leadingage.org/ uploadedFiles/Content/Tools/Data/2011_LeadingAge_Ziegler_100.pdf Moldaw Family Residences. (n.d.). 5 principles of a fulfilling Moldaw retirement. Retrieved from http://moldaw.org/retirement-communities-palo-alto-california-ca.php Sanders, J. (1997). Continuing care retirement communities: A background and summary of current issues. HHS Office of Disability, Aging, and Long Term Care, U.S. Department of Health and Human Services. February 24, 2. Shippee, T. P. (2009). “But I am not moving”: Residents’ perspectives on transitions within a continuing care retirement community. The Gerontologist, 49(3), 418–427. Span, P. (2012). Tables reserved for the healthiest. New York Times. Retrieved from http:// newoldage.blogs.nytimes.com/2012/02/09/tables-reserved-for-the-healthiest Special Committee on Aging. (2010). GAO report to the chairman. U.S. Senate, June, p. 1. Health and Human Services (p. 2). U.S. Government Accountability Office (GAO). (2010). Continuing care retirement communities can provide some benefits, but not without some risk (GAO-10–611). June, 1–34. Wylde, M. A. (2003). Study of independent living residents and the communities in which they reside. Pro Matura Group/American Seniors Housing Association. Wylde, M. A., Smith, E., Schless, D., & Bernstecker, R. (2009). Satisfied residents won’t recommend your community, but very satisfied residents will. Seniors Housing & Care Journal, 17(1), 12. Zarem, J. E. (Ed.). (2010). Today’s continuing care retirement community (CCRC). AAHSA/ American Seniors Housing Association, CCRC Task Force, 4.

6

THE SKILLED NURSING FACILITY Edwin P. Cabigao Christopher Cherney

LEARNING OBJECTIVES On the completion of Chapter 6, the reader will be able to the historical development of the skilled nursing facility (SNF) in •  Discuss  •  •  •  •  •  • 

the United States Describe SNF facility and resident characteristics Cite federal and state regulations that govern SNF operations Describe nursing home revenue streams and ownership structures Discuss nursing home staffing Discuss measures of nursing home quality Describe emerging subpopulations of U.S. nursing home residents

SNFs—also referred to as nursing homes—meet the nonacute medical and psychosocial needs of dependent adults 24 hours/day. U.S. nursing homes have been meeting resident needs for decades, in changing ways. At the start of the 20th century, almshouses served older adult poor persons and emerged as the prototype for the modern U.S. nursing home. The creation of the Medicare and Medicaid programs in the 1960s sparked the professionalization and further medicalization of the American nursing home. At the start of the 21st century, while the SNF remains markedly medicalized—and some nursing home units resemble hospital units—a nursing home culture change movement at work since 1997, has gained momentum (Jurkowski, 2013). This movement emphasizes meeting dependent adults’ need for dignity and promotes a demedicalization of the SNF. This chapter provides an overview of the U.S. nursing home, including its history, financing, and regulations, as well as facility and resident characteristics. Nursing home staffing is evaluated and the chapter concludes with an overview of nursing home quality measures and the emerging needs of U.S. nursing home

105

106  I.  OPTIONS IN LONG-TERM CARE

residents at the start of the 21st century, including those who are medically complex, severely demented, younger than 65 years, and morbidly obese.

SNF HISTORY AND CHARACTERISTICS A History of the U.S. Nursing Home In 19th-century America, before the advent of modern long-term care (LTC) facilities, many older adults were housed in almshouses. These charitable, mostly locally funded institutions—oftentimes called poorhouses—housed the destitute, the mentally ill, the disabled, and older adults. By the early 20th century, approximately two thirds of almshouse residents nationwide were older adults, and in 1903, the New York City Charity Board renamed its almshouse the Home for the Aged (Haber & Gratton, 1994). The passage of the Social Security Act in 1935 provided federally funded Old Age Assistance grants to states. Old Age Assistance grants barred payments to any almshouse resident, and in 1950, Social Security for the first time allowed Old Age Assistance payments to private vendors, including private nursing homes. In turn, proprietary institutions flourished, and by the late 1950s, almshouses largely disappeared from the American landscape (Vladeck, 1981). A 1954 amendment to the Hill-Burton Act (also known as the Hospital Survey and Construction Act of 1946) provided federal government financing for the construction of nursing homes. “The incorporation of nursing homes into Hill-Burton . . . transformed them, by definition, into medical facilities” (Vladeck, 1981, p. 42). In 1965, Congress created Medicare and Medicaid. Sparked by Medicare reimbursement for nursing home care, the number of U.S. nursing home beds grew 300% between 1960 and 1976. During the same span, industry revenues increased 2,000% (Haber & Gratton, 1994). This rapid growth was accompanied by increasing reports of substandard, oftentimes horrific nursing home care, which spurred Congressional hearings and legislation (Butler, 1975). In 1987, the passage of the Federal Nursing Home Reform Act—universally referred to as OBRA—from the Omnibus Budget Reconciliation Act of which the Nursing Home Reform Act was a part—required skilled nursing facilities receiving federal funds to “attain and maintain each resident’s highest practicable level of physical, mental, and psycho-social well-being” (42 Code of Federal Regulations Section 483.25). OBRA for the first time referred to patients as residents and emphasized resident quality of life as discrete from care quality. In 1991, Dr. Bill Thomas of Rochester, New York, founded the Eden Alternative, an approach to nursing home care founded on the core concept that “where elders live must be habitats for human beings, not sterile medical institutions” (Eden Alternative, 2011). Eden homes are dedicated to eliminating what Thomas called the plagues of loneliness, helplessness, and boredom. Guided by Eden’s 10 principles, Eden nursing homes endeavor to introduce birds, cats, plants, children, and meaningful activities into what may have been considered sterile environments. Bill Thomas’s efforts helped to spur the creation, in 1997, of the Pioneer Network, also based in Rochester, New York. This 30-state network of so-called culture change enthusiasts advocates for person-directed care, enabling elders to thrive, not to decline (Pioneer Network, 2011). Culture change transformation may require nursing homes to radically change organizational structures,

6.  THE SKILLED NURSING FACILITY  107

e­ xtensively modify physical layouts (exemplified by the Green House Project), or alter the ways in which residents and staff communicate and make daily choices (Jurkowski, 2013).

Facility Characteristics In 2008, 15,962 licensed nursing homes provided services to residents (Centers for Medicare & Medicaid Services [CMS], 2009). By comparison, there are approximately 13,000 McDonald’s restaurants in the United States (Nation Master, 2011). The nation’s 16,000 nursing homes house approximately 1.6 million residents. The overwhelming majority of nursing homes are freestanding facilities, as opposed to “distinct part” nursing homes that occupy a distinct part of a hospital, namely, a floor or wing. For every 1,000 adults aged 65 and older, there are 43 licensed nursing home beds (CMS, 2009). The bedded rate per 1,000 adults aged 85 and older rises to 293, and reflects the increasing frailty of these elders. Of note, the SNF bedded rate for the 65 and older population dropped 16% between 1999 and 2008 even as the 65 and older population grew by 12.5%. Partly due to the increasing availability of assisted living facilities, as well as home- and community-based services, fewer U.S. elders are seeking placement in nursing homes at the turn of the 21st century (CMS, 2009). In 2008, U.S. nursing homes admitted 3.2 million residents, half of whom were admitted from hospitals or home health care settings, almost always for short, rehabilitative stays (Jones, Dwyer, Bercovitz, & Strahan, 2009).

Resident Characteristics Nationally, 58% of nursing home residents are unable to perform three or more activities of daily living (ADLs), namely, eating, walking, bathing, dressing, or transferring (CMS, 2009; McDowell & Newell, 1996). Conversely, 28% of residents are able to perform all ADLs, and 14% can perform one or two ADLs. In an echo of the almshouses from which nursing homes sprang, some physically unimpaired residents are admitted to nursing homes because they lack social support, are indigent, or both. Resident characteristics vary widely among individual nursing homes. However, since the early 1980s, the most common diagnoses of U.S. nursing home residents have included circulatory diseases and cognitive disorders (Jones, Dwyer, Bercovitz, & Strahan, 2009). Slightly more than 40% of all residents are characterized with moderate to severe cognitive impairment, whereas 32% have no cognitive impairment (CMS, 2009). On average, nursing home residents stay 2.4 years. Eighty-nine percent of all nursing home residents are older than 65 years and the average resident age is 79. Eighty-six percent of residents are White, and 71% are women (Jones, Dwyer, Bercovitz, & Strahan, 2009; Table 6.1). Even so, the number of older adult White nursing home residents nationwide decreased 10% between 1999 and 2008. During the same span, the number of Hispanic residents increased 55%, Asian residents increased 54%, and African American residents increased 11%: rates of growth that are higher than minority population increases overall. These demographic changes may reflect Whites’ broader access to alternative elder-housing resources, including assisted living (Feng, Fennell, Tyler, Clark, & Mor, 2011).

108  I.  OPTIONS IN LONG-TERM CARE

TABLE 6.1  SNF Resident and Facility Characteristics Total number of U.S. nursing homes

15,962

Total licensed capacity of U.S. nursing homes

1.6 million

Average occupancy rate

84%

Annual U.S. nursing home admissions

3.2 million

Average resident age

79

Percentage of residents older than 65 years

89

Percentage of White residents

86

Percentage of female residents

71

Percentage with cognitive impairment

40

Percentage incontinent

33

Sources: CMS (2009) and HHS (2004).

REGULATIONS GOVERNING SKILLED NURSING FACILITIES Federal Regulations Ninety-nine percent of U.S. nursing homes are certified to receive reimbursement from Medicare or Medicaid (CMS, 2009). As such, the 1987 Federal Nursing Home Reform Act, commonly referred to as OBRA, regulates virtually all U.S. nursing homes. OBRA holds considerable authority in nursing home operations and culture throughout the country. Practice tip 6.1. State agencies license skilled nursing facilities, and the federal government certifies SNFs for participation in Medicare and/or Medicaid. Certification is usually performed by state surveyors (or inspectors, evaluators), whose agencies contract with the federal government to certify and recertify SNFs. Trained surveyors are guided by the CMS State Operations Manual. Broadly speaking, OBRA focuses on two major elements of care provision: quality of care and quality of life. OBRA’s quality of care elements require nursing homes to create individualized care plans based on a minimum data set (MDS) assessment that is created for each resident at defined intervals. MDS assessment data, now collected electronically from all 16,000 U.S. nursing homes, enables state and federal regulators to continuously study and monitor nursing home care quality at the micro (resident), meso (facility), and macro (aggregated facilities) levels. The core of OBRA’s quality-of-life requirements are codified in numerous resident rights, including, but not limited to, the right to be free from physical or chemical restraints, the right to choose a physician, the right to access medical records, safely maintain or bank personal funds, and to form a resident council (Turnham, 2009).

State Regulations Many state laws and regulations regarding nursing homes were first written in the late 1960s in the wake of the passage of Medicare and Medicaid. Many state statutes echo federal requirements. In 2010, Delaware updated many of its regulations by referring directly to federal regulations (University of Minnesota, 2011). Uniquely

6.  THE SKILLED NURSING FACILITY  109

among the states, New York prohibits parent/subsidiary relationships, which means that chain nursing homes do not operate there (New York Public Health Law Section 2801-a (4) (e)). In 2000, California mandated direct care nursing staff levels of 3.2 hours per patient per day (PPD), enabling residents, advocates, and attorneys to allege understaffing against an objective standard. In 2003, Texas adopted a constitutional amendment that capped medical malpractice noneconomic damages (such as pain and suffering) at $250,000. In the wake of Texas’ so-called tort-reform amendment, most Texas nursing homes either dropped their liability insurance coverage altogether or lowered their coverage limits to $250,000 (Carter, 2006). Like the federal government, which issues civil monetary penalties for violations of federal regulations, state agencies can issue fines, penalties, or citations for violations of state regulations. California, Pennsylvania, Texas, and Wisconsin all issue fines as high as $100,000 per occurrence (Consumers Union, 2003). Practice tip 6.2. State boards license nursing home administrators. However, the National Association of Long Term Care Administrator Boards (NAB; www. nabweb.org) coordinates the licensing, regulating, and credentialing of nursing home administrators in all 50 states and the District of Columbia. NAB publishes and coordinates the administration of the computerized nursing home administrator federal examination, which tests competency in five areas: resident care, human resources, finance, environment, and leadership and management. About 20 state licensing boards have licensure reciprocity agreements with other states.

U.S. SNF OWNERSHIP STRUCTURE AND REVENUE STREAMS Ownership Structure Sixty-seven percent of companies that operate U.S. nursing homes are proprietary; that is, privately owned and operated for profit. Twenty-seven percent are nonprofit and the remaining 6% are government owned (CMS, 2009). Nine of the 10 largest nursing home providers are private, for-profit (Table 6.2). Among states, there is considerable variation in the penetration of for-profit facilities. In Oklahoma and Texas, 85% of SNFs are for-profit, whereas in North Dakota, only 5% of nursing homes are for-profit (CMS, 2009). State agencies issue nursing home licenses to licensees. Frequently, licensees are affiliates of larger, related corporations to which the licensee may pay management fees. Moreover, licensees in many cases do not own a nursing home’s real estate assets. Indeed, by market capitalization, the largest firms in LTC are real estate investment trusts, many traded on the New York Stock Exchange (Wikinvest, 2012). Between 2004 and 2007, private investment (PI) firms began purchasing nursing homes, leading to widespread concerns about the impact on nursing home quality. The Government Accountability Office (GAO) concluded in 2011 that nursing homes acquired by PI firms “did not indicate an increase in the likelihood of serious deficiencies or a decrease in average reported total nurse staffing” (GAO, 2011, p. 35). Proprietary ownership markedly influences the culture of the U.S. nursing home. Private, for-profit nursing homes aim to realize shareholder value by maximizing revenue and minimizing expense. Revenue maximization means that, in the aggregate, facilities pursue a census (i.e., resident count) with a payor mix skewed

110  I.  OPTIONS IN LONG-TERM CARE

TABLE 6.2  Ten Largest U.S. Nursing Home Companies, 2011

Company Name

City, State

SNF Beds

Total Facilities

Total Operating Revenue (in Dollars)

Ownership

HCR Manor Care

Toledo, OH

38,092

277

N/A

Private, for-profit

Golden Living

Plano, TX

31,143

305

N/A

Private, for-profit

Life Care Centers of America

Cleveland, OH

29,272

221

N/A

Private, for-profit

Kindred Healthcare

Louisville, KY

27,905

226

4.35 billion

Public, for-profit

Sun Healthcare Group

Irvine, CA

22,243

200

1.9 billion

Public, for-profit

SavaSeniorCare

Atlanta, GA

21,279

186

N/A

Private, for-profit

Extendicare Health Services

Milwaukee, WI

16,8893

167

1.3 billion

Public, for-profit

Evangelical Lutheran Good Samaritan Society

Sioux Falls, SD

12,419

177

915 million

Nonprofit

Skilled HealthCare Group

Foothill Ranch, CA

10,456

74

N/A

Private, for-profit

Source: LaPorte (2011). Used with permission.

as much as feasible toward higher revenues, namely, Medicare, private insurance, and private pay. Expense minimization means that, in the aggregate, facilities focus considerable attention on controlling payroll-related expense, namely, the wages, benefits, and number of hours worked by the certified nursing assistants (CNAs) and licensed nurses who constitute the bulk of SNF staff. Nonprofit nursing homes are influenced by the practices and trends of the for-profit providers who dominate the field in terms of gross revenues and licensed beds. Practice tip 6.3. The Patient Protection and Affordability Care Act of 2010 (PPACA) addresses multiple elements of “Nursing Home Transparency and Improvement.” Among other things, PPACA requires that nursing homes provide more specific, publicly available information about nursing home governance, ownership, and financial control as well as expenditures on direct care. Under PPACA, nursing homes also are required to institute ethics programs and to report payroll data electronically (PPACA, 2010).

U.S. Nursing Home Revenue by Payor Source In 2009, the U.S. nursing home industry generated $144 billion in revenues— more than 10 times greater than the Hollywood box office returns of $10 billion (Dergarabedian, 2011; Table 6.3). SNFs account for about 7% of the $2 trillion in U.S. health care expenditures. Approximately two thirds of all U.S. nursing home revenues come from public sources. In many nursing homes, more than 90% of revenue flows from

6.  THE SKILLED NURSING FACILITY  111

TABLE 6.3  U.S. Nursing Home Revenues: 2009 Public Sources   Medicare   Medicaid

$92 billion $30 billion $62 billion

64% 21% 43%

Private Sources   Private health insurance   Out of pocket (includes social security)

$52 billion $10 billion $42 billion

36% 7% 29%

Source: CMS (2009). National Health Expenditures.

TABLE 6.4  Average per Resident Nursing Home Reimbursement by Payor Source (2007) Nursing Home is Reimbursed Payer (Level of Care)

Location

Per day (in Dollars)

Per 30 days (in Dollars)`

Per year (in Dollars)

Medicaid (custodial)

Texas

106

3,690

44,895

Private pay (custodial)

Illinois

178

5,340

64,970

Medicaid (custodial)

New York

210

7,500

91,250

Medicare (skilled)

Alabama

263

7,890

95,995

Private pay (custodial)

Massachusetts

296

8,880

108,040

Medicare (skilled)

California

372

11,160

135,780

Source: Houser, Fox-Grage, and Gibson (2009).

government funds, mainly Medicaid and Medicare. States set Medicaid reimbursement rates, and the federal government reimburses states for 50% to 74% of Medicaid expenditures, depending on the state’s wealth (Federal Matching Shares for Medicaid, 2009). The federal government reimburses 100% of valid Medicare claims submitted by nursing homes. Average nursing home reimbursement levels range from slightly more than $100 per resident per day for custodial Medicaid residents in Texas, to $372 per resident per day for skilled Medicare residents in California. Generally speaking, reimbursement levels reflect resident acuity as well as geographic differences in wage rates. Custodial residents or their families who pay privately for care spend $65,000/ year in Illinois and $108,000/year in Massachusetts (Table 6.4). The high cost of nursing home care is a concern to many families and motivates many Americans to craft estate plans that either (a) account for nursing home expenditures or (b) attempt to legally shield assets so that nursing home care is paid for from public funds, namely, Medicaid.

Medicare Reimbursement System Medicare reimburses SNFs for Medicare beneficiaries who are admitted to a nursing home after a minimum 3-night stay in an acute care hospital, and require “skilled” nursing care on a daily basis. On July 1, 1998, Medicare initiated an SNF prospective payment system (PPS), which replaced a retrospective payment system. ­Retrospective payment systems reimburse providers after services are rendered. PPSs specify

112  I.  OPTIONS IN LONG-TERM CARE

TABLE 6.5  Five (of 66 Total) SNF Resource Utilization Group (RUG) 3-Letter Designators and Per-Day Reimbursement Levels, 2011–2012 RUG

Clinical Services

Per-day SNF Reimbursement, 2011–2012

Description

Birmingham, AL (in Dollars)

Oakland, CA (in Dollars)

RUX

Rehab and extensive services ultra high

763.21

1,222.64

RMC

Rehab services medium

381.63

614.36

HE2

Special care high

392.08

631.19

CE2

Clinically complex

316.72

509.87

PE2

Reduced physical function

293.00

471.68

Designator

A Comparison of Rates for Birmingham, AL, and Oakland, CA. Source: CMS (2011).

reimbursement levels in advance of service provision. Medicare PPS reimburses SNFs based on a Medicare beneficiary’s unique clinical condition. PPS uses a complex algorithm for linking per-day SNF reimbursement to resident acuity and the level of services provided. In 2011, the algorithm categorized all Medicare residents into 1 of 66 resource utilization groups, or RUGs (Table 6.5). Each year, CMS proposes, and Congress authorizes, an RUG payment schedule (Medicare Program: Prospective Payment System, 2010). In December 2010, the Office of the Inspector General (OIG) of the U.S. Department of Health and Human Services (HHS) concluded that U.S. SNFs billed 28% of all residents at the highest Resource Utilization Group (RUG) code (Rehab & Extensive Services Ultra High) even though commensurate resident assessments did not appear to clinically justify a need for the billed level of care. For-profit SNFs were noted to be far more likely to bill for higher paying RUGS than nonprofit or governmental SNFs (HHS, 2010, p. 1).

SNF STAFFING Staffing Levels and Regulations Federal regulations require that nursing homes certified to participate in Medicare or Medicaid provide “sufficient nursing staff to provide nursing and related services to attain or maintain the highest practicable physical, mental, and psychosocial well-being of each resident, as determined by resident assessments and individual plans of care” (42 Code of Federal Regulations, Section 483.30). Regardless of facility size, one registered nurse is required 8 hours/day, 7 days/week. For the remaining 16 hours/day, a licensed nurse—a registered nurse (RN) or licensed practical/­ vocational nurse (LPN/LVN)—is required. Notwithstanding the minimum requirement of one licensed nurse per shift, and the nonspecific regulatory requirement for sufficient nursing staff, there is no federally mandated nursing staff level for U.S. nursing homes. CMS has recommended a minimum overall nursing staffing level of 2.75 hours per PPD, a preferred staffing level of 3.00 hours PPD, and an optimal level of 3.90 hours PPD (Harrington, 2002). Based on self-reports, U.S. nursing homes in 2006 on average provided 3.03 nursing hours PPD of which 2.06 hours PPD was provided by nursing assistants and

6.  THE SKILLED NURSING FACILITY  113

0.97 hours PPD was provided by licensed nurses (Zhang, Unruh, Liu, & Wan, 2006; Table 6.6). In 1998, the National Citizens Coalition for Nursing Home Reform (NCCNHR) recommended a minimum nursing staffing level of 4.13 hours PPD for all residents, without exception, regardless of payment source (NCCNHR, 1998). In 2001, HHS issued a report on nursing home staffing, which concluded that, “in 2000, over 91 percent of nursing homes had nurse aide staffing levels that fell below . . . thresholds identified as minimally necessary to provide . . . needed care” (Pear, 2002, p. A1). The report concluded that increasing nursing home staffing nationwide to necessary levels would cost $7.6 billion/year, about an 8% industrywide increase over then-current spending levels. States have varying nursing home staffing requirements (Table 6.7). Many states have no minimum staffing requirements. Since 2001, California has mandated that all nursing homes provide a minimum nurse staffing level of 3.2 hours PPD. In 2010, in a class action lawsuit, a Humboldt County, California, jury found a nursing home chain guilty of systematically failing to maintain staffing levels of 3.2 hours PPD for 2 years across 22 nursing homes. The trial jury awarded damages of $677 million. The nursing home corporation later negotiated a $50 million settlement (Olivarez-Giles, 2010).

TABLE 6.6  Calculating Nursing Hours Per Patient Day for 100 Residents Aides

Licensed

11

4

9

4

Day shift Evening shift Night shift

6

4

Total shifts

26

12

Times hours worked per shift Equals total hours worked Divided by 100 patients gives   Hours per patient per day

8

8

208

96

2.08  +

  0.96  = 3.04 hr PPD

TABLE 6.7  Nursing Home Staffing Requirements in Some States: Hours Per Patient Per Day State

Total Hours per Patient per Day Required

TN

2.00

NM

2.50

PA

2.70

OH

2.75

MS

2.80

VT

3.00

CA

3.20

DE

3.67

Source: Harrington (2008).

114  I.  OPTIONS IN LONG-TERM CARE

Nursing Staffing Mix CNAs deliver most of the hands-on care provided in nursing homes and account for approximately 70% of scheduled nursing hours. Although CNAs are certified by states, which have varying certification requirements, federal regulations require that CNAs undergo a training curriculum of at least 75 hours, 16 hours of which must be a supervised clinical practicum. LPNs/LVNs account for about 75% of scheduled licensed nursing hours. (RNs account for the rest.) Table 6.8 depicts a typical staffing mix and corresponding labor costs for a 100-bed SNF staffed at 3.2 hours per PPD. The average turnover rate of nursing home CNAs is 66%/year. Licensed nurse turnover rates range from 40% to 50% (American Health Care Association, 2008). In many facilities, CNA turnover is more than 100% per year. Staff turnover is driven mainly by economics: on average, CNAs earn $24,000 per year, one in three receives public assistance, and 40% cannot afford their employer’s health insurance premiums (Squillace et al., 2009). Higher wages and improved benefits markedly improve staff retention rates (Howes, 2005).

Staffing and Quality of Care Considerable research has demonstrated that nursing home quality correlates with the level of direct care staffing. Namely, more nursing staff correlates with higher quality (Bostick, Rantz, Flesner, & Riggs, 2006; Castle & Anderson, 2011; Harrington, O’Meara, & Kang, 2006; Schnelle et al., 2004). Studies have linked increased staffing with improved patient care outcomes (Collier & Harrington, 2008), fewer survey deficiencies (Hyer et al., 2011), increased resident satisfaction, lower staff turnover, and fewer complaints (Harrington et al., 2006). Staffing levels alone may not reliably predict quality. Other staffing factors—including the level of nursing staff experience and training, the use of agency (i.e., registry) staff, organizational management, and overall staff turnover—also may impact care outcomes and quality metrics (Spilsbury, Hewitt, Stirk, & Bowman, 2011). According to some investigators, for-profit nursing homes correlate with lower direct care staffing levels (Harrington et al., 2006) as well as lower overall quality. A 2009 meta-analysis of research studies, comparing for-profit and ­not-for-profit TABLE 6.8  100-Bed SNF Staffing Mix and Cost for Staffing Level of 3.2 Hours PPD Nursing Shifts per Day

Percentage of Nursing Shifts

Estimated Hourly Wage (in Dollars)

28

70

11.66

$3,396

55

LVN

9

23

20.48

$1,918

31

RN

3

7

28.84

$900

14

40

100

$6,214

100

Nursing Classification CNA

Labor Cost Per Percentage Day Incl. 30% of Labor Benefits Cost

Note: 40 shifts/d × 8 hr per shift = 320 nursing hours/by 100 residents = 3.2 hr PPD. CNA, certified nursing assistants; LVN, licensed vocational nurse; PPD, per patient per day; RN, registered nurse. Source: U.S. Bureau of Labor Statistics (2011).

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nursing homes, attributed 7,000 pressure ulcers in U.S. nursing homes to for-profit ownership and concluded that U.S. nursing homes would provide 500,000 additional hours of direct nursing care per day if nonprofit organizations operated all of the nation’s 16,000 SNFs (Comondore et al., 2009). Practice tip 6.4. Federally certified nursing homes are required to designate a physician medical director to coordinate integrated medical care delivery and to play a leadership role in implementing resident care policies at the facility level. Medical directors must participate in quality-assurance activities and are consulted when, for example, clarification of facility standards or practice is required. Medical directors are paid a monthly fee by nursing home operators and may serve two or more facilities in this capacity, especially if the facility is part of a chain of nursing homes. The American Medical Directors Association (www.amda.com) certifies medical directors based on education and experience requirements.

SNF QUALITY-OF-CARE MEASUREMENT Nursing Home Quality Post-OBRA OBRA 1987 required nursing homes to provide services such that each resident could attain the “highest practicable level of physical, mental, and psychosocial well-being” (42 Code of Federal Regulations, Section 483.30). U.S. nursing homes have continuously struggled to fulfill this requirement. OBRA 1987 raised the quality bar by creating resident-focused national standards, which included freedom from abuse, mistreatment, and neglect; freedom from physical restraints; the right to privacy; accommodation of medical, physical, psychological, and social needs; participation in resident/family groups; treatment with dignity; promotion of self-determination; free communication; participation in the plan of care; and free expression of grievance without discrimination or reprisal (42 CFR Section 483). OBRA 1987 also strengthened staffing requirements and the survey and enforcement process. Post-OBRA, several studies have found evidence of improvement in nursing home care quality. Quality of care speaks to the technical aptitude of medical and quasimedical services (Noelker & Harel, 2000). Researchers have noted a decline in the application of physical restraints and administration of chemical restraints, reduced prevalence of dehydration and pressure ulcers, and less frequent use of indwelling catheters (Fries et al., 1997). Despite these noted improvements, Institute of Medicine (2001) has noted continuing evidence of poor and substandard nursing home care quality. U.S. General Accounting Office found in a series of studies that one fourth of U.S. nursing homes had caused actual harm to residents or placed their health and safety at risk of death or serious injury. Most concerning is the fact that 40% of these nursing homes had repeated serious deficiencies (U.S. General Accounting Office, 1998, 1999a, 1999b, 2000). Especially since OBRA’s passage in 1987, every U.S. nursing home has been challenged to implement and sustain processes that improve the quality of resident care. These processes are variously termed quality improvement (QI), quality assurance (QA), and process improvement (PI). Optimally, QI/QA/PI processes identify problems, determine their root causes, plan interventions, and measure and evaluate results of those interventions.

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Quality Measures Nursing home quality is measured with three commonly accepted national quality metrics: (a) the federal Nursing Home Compare and Five-Star rating system, (b) the National Quality Forum (NQF) nursing home quality measures, and (c) the standard recertification survey.

Federal Nursing Home Compare and Five-Star Rating System In 1998, CMS launched the Nursing Home Compare website (www.medicare.gov/ nhcompare). On December 18, 2008, for the first time the Nursing Home Compare website incorporated the Five-Star rating system. The system purports to rate all U.S. nursing homes based on a complex formula incorporating recertification survey scores, nursing staffing levels, and quality measures (including but not limited to pain, urinary tract infections, pressure sores, delirium, and physical restraints). The Five-Star system ranks nursing homes on a scale of one star (for much below average) to five stars (for much above average). In 2009, attorneys general representing 31 states asked CMS to suspend and revise the Five-Star system because it could be “misleading and create significant confusion for seniors” (McKnight’s Long-Term Care News, 2009). Although CMS has encouraged consumers “not to rely solely on a nursing home’s overall rating” as the basis for choosing a nursing home, it did not suspend the Five-Star system, and the Nursing Home Compare website registers 1.3 million page views per month (CMS, 2008).

NQF Nursing Home Quality Measures The NQF is a voluntary, standard-setting, consensus-building organization representing providers, consumers, purchasers, and researchers. In June 2011, the NQF endorsed 17 nursing home quality measures. These 17 measures are derived from resident assessment data—called the MDS—that nursing homes routinely perform on each resident per CMS-scheduled guidelines. These measures evaluate resident health conditions and functioning as well as preferences and care wishes (Table 6.9). Effective 2012, the NQF measures were reported on Nursing Home Compare.

Standard Recertification Survey OBRA regulations are enforced by state health agencies that contract with the federal government to carry out initial certification or recertification surveys (or inspections) of SNFs participating in the Medicare or Medicaid programs. Every 9 to 15 months, U.S. nursing homes participating in Medicare or Medicaid undergo an unannounced recertification survey to determine whether they meet federal standards (CMS, 2010). Surveys assess resident quality of care and quality of life. Environmental standards of cleanliness and safety are evaluated. Surveyors observe what is going on in the nursing home and conduct interviews with residents, family members, and employees. Medical records are reviewed. At the conclusion of the survey—which lasts 2 to 5 days on average—surveyors identify deficient areas, if applicable. A deficiency is a determination that a nursing home has violated one or more requirements. Facilities that do not fulfill federal requirements are provided a

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TABLE 6.9  National Quality Forum Nursing Home Quality Measures Short-stay quality measures The percentage of residents on a scheduled pain medication regimen on admission who report a decrease in pain intensity or frequency Percentage of residents who self-report moderate to severe pain Percentage of residents with pressure ulcers that are new or worsened Percentage of residents assessed and given, appropriately, the seasonal influenza vaccine Percentage of residents assessed and given, appropriately, the pneumococcal vaccine Long-stay quality measures Percentage of residents experiencing one or more falls with major injury Percentage of residents who self-report moderate to severe pain Percentage of high-risk residents with pressure ulcers Percentage of long-stay residents assessed and given, appropriately, the seasonal influenza vaccine Percentage of long-stay residents assessed and given, appropriately, the pneumococcal vaccine Percentage of long-stay residents with a urinary tract infection Percentage of low-risk residents who lose control of their bowels or bladder Residents who have/had a catheter inserted and left in their bladder Percentage of residents who were physically restrained Percentage of residents whose need for help with daily activities has increased Percentage of long-stay residents who lose too much weight Percentage of residents who have depressive symptoms Source: CMS (2011).

written statement of deficiencies. All facilities receiving deficiencies are provided an opportunity to rebut survey findings in writing. For deficiencies not overturned, the facility must provide a written plan of correction (POC) that details how the facility will remedy the noted deficiencies and prevent them from recurring. Deficiencies range in scope and severity from isolated violations with no actual harm to residents to widespread violations that cause injuries or put residents in immediate jeopardy of harm. Federal deficiencies are ranked with a lettering system (from A to L) classified by four severity levels and three scope levels. The most severe deficiencies—noted by letters J, K, and L—represent “immediate jeopardy to resident health or safety” (Table 6.10). Colloquially, such deficiencies are termed “IJ” (for immediate jeopardy), and can include monetary fines of $3,000 to $10,000/day. Mostly as a result of widespread criticism of the federal survey process, regulators have attempted to enhance the reliability and validity of survey results nationally. In late 2005, the CMS began field trials in five states (California, Connecticut, Kansas, Louisiana, and Ohio) of a computer-driven survey protocol called the Quality Indicator Survey (QIS). QIS was designed primarily to enhance survey consistency and accuracy. CMS concluded in 2007 that QIS field trial surveys were neither more accurate nor more efficient than standard surveys, resulted in more deficiencies issued to facilities, and, on average, took longer to complete in three states: California, Ohio, and Kansas (CMS, 2007). Efforts to improve nursing home survey reliability are likely to continue.

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TABLE 6.10  Federal Survey Scope and Severity Grid Scope Level

Severity

Isolated

Pattern

Widespread

4

Immediate jeopardy to resident health or safety

J

K

L

3

Actual harm that is not immediate jeopardy

G

H

I

2

No actual harm with potential for more than minimal harm that is not immediate jeopardy

D

E

F

Source: State Operations Manual (2009).

Practice tip 6.5. Federal nursing home deficiencies are issued on CMS Form 2567, which can range from one page to more than 100 pages, depending on the number of deficiencies. Administrators and Directors of Nursing (DONs) colloquially speak of receiving their “2567.” The 2567 form includes two columns. On the left is the statement of deficiencies, written by the state survey agency representative(s). On the right is the corresponding POC, attested by a representative of the nursing home licensee.

THE 21ST-CENTURY SNF: EMERGING NEEDS OF RESIDENTS As the U.S. health care financing and delivery systems change on a macro level, as health care technology advances, and as U.S. adults live longer and on average gain more weight, 21st-century SNFs are admitting residents with unique needs, diagnoses, and conditions. Medically complex: Partly in an attempt to minimize cost, many hospitals are preparing patients for discharge to SNF sooner. As a result, many SNFs are reengineering themselves as postacute care centers that admit, on a 24-hour/day, 365-daysper-year basis, residents requiring tracheostomy care, total parenteral nutrition, frequent and costly intravenous medications, and chest tubes. Reimbursement rates for high-acuity, postacute care conditions are attractive to many nursing home providers. High acuity correlates with higher direct care expenses—most especially licensed nurses, rehabilitation therapists, and respiratory therapists—as well as heightened medical–legal risk for unanticipated adverse clinical outcomes. Severely demented: Some SNF operators, in response to the growing number of severely demented elders—who can exhibit difficult behaviors, including yelling, kicking, biting, scratching, and wandering—are designing dementia-friendly facilities and developing treatment programs geared toward providing late-stage dementia care. However, families of some residents with the most difficult behaviors struggle to find placement for their demented family member. The federal government is increasingly wary of SNFs that use powerful psychoactive medications to treat behaviors in persons who are demented (HHS, 2011). Practice tip 6.6. At the start of the 21st century, there is a growing movement to reduce the administration of psychoactive drugs to demented nursing home residents. Proponents of nonpharmacological approaches to treating dementia

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suggest that nursing home culture must be transformed from an institutional to an experiential approach that involves training staff to “conform the care environment to the individual’s needs, rather than to try to “normalize the individual to the institution’s needs” (Power, 2010, p. 80). In Phoenix, Arizona, the Beatitudes Campus, a nonprofit SNF, has innovated culture of comfort interventions to reduce the administration of psychotropic drugs to residents who reside in its Vermilion Cliffs dementia unit. By focusing on treating pain with Tylenol, providing residents with comfort foods like chocolate, serving meals whenever residents are hungry, and eliminating structured group activities, The Beatitudes has reduced the incidence of psychoactive drugs to less than 10% (Long & Alonzo, 2009). Adults younger than 65 years: Many nursing homes are attempting to accommodate growing numbers of adults needing SNF care who are younger than 65 years and who present with multiple chronic conditions, including diabetes, chronic respiratory failure, chronic pain, severe depression, chronic neurological impairments, substance abuse, mental illness, and morbid obesity. Analysis of 2011 CMS data reveals that one in seven U.S. nursing home residents is now younger than 65 years, an increase of 22% since 2003 (Sedensky, 2011). A 2011 Ohio LTC research project reported a 37% increase in the number of Ohio nursing home residents younger than 60 years, between 1997 and 2009. Nearly three fourths of these younger residents were diagnosed with severe mental illness (Mehdizadeh, Applebaum, Nelson, & Straker, 2011). Obese and morbidly obese: Since the 1980s, there has been a dramatic increase in the number of U.S. adults who are obese or morbidly obese. In some states, like Mississippi and Alabama, one third of adults were obese in 2010 (Centers for Disease Control and Prevention, 2011). Some researchers are projecting long-term U.S. adult obesity prevalence of 42% (Hill, Rand, Nowak, & Christakis, 2010). Obesity is a risk factor for admission to a nursing home because it routinely presents with comorbid chronic conditions, including hypertension, coronary artery disease, and respiratory failure (Elkins et al., 2006). It is not uncommon for SNFs to be referred for residents weighing 300 to 800 pounds. The operational risks associated with caring for these residents are manifest.

SUMMARY The modern U.S. nursing home harkens back to almshouses that cared for destitute older adults. Throughout the 20th century, and into the 21st, nursing homes evolved into complex institutions that meet the medical and social needs of approximately 1.6 million adults, most of whom suffer from chronic illnesses and require assistance with three or more ADLs. Seven percent of the U.S. health care dollar—approximately $150 billion per year—is spent on nursing home care. Although individuals or their families paying privately for nursing home care can spend $70,000 to $100,000/year, state and federal governments account for approximately 7 in 10 nursing home dollars. Nursing home providers are closely regulated by state and federal agencies, whose scrutiny will increase with the planned implementation of the Patient Protection and Affordability Care Act of 2010. Although there is no national nursing home staffing standard, the average facility provides 3.00 hours of direct-care staff per resident per day, whereas academics and advocates claim that 4.13 hours/day are required to meet all residents’ basic needs.

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Nursing home quality is measured with three commonly accepted national quality metrics: (a) the federal Nursing Home Compare and Five-Star rating system, (b) the NQF nursing home quality measures, and (c) the standard recertification survey. Since 1997, a nationally energized culture change movement has been attempting to transform nursing homes from medicalized institutions to places where the spiritual and emotional needs of residents and staff are emphasized. Culture change extends from reducing the use of psychoactive drugs to changing daily facility routines to constructing more humane nursing home environments. Whether or not nursing homes adopt culture change, resident demographics are likely to continue changing in coming years, as younger, obese, demented, and mentally ill residents comprise an ever-increasing proportion of the nursing home population.

REFERENCES American Health Care Association. (2008). 2007 AHCA survey: Nursing staff vacancy and turnover in nursing homes. Washington, DC: American Health Care Association. Bostick, J. E., Rantz, M. J., Flesner, M. K., & Riggs, C. J. (2006). Systematic review of studies of staffing and quality in nursing homes. Journal of the American Medical Directors Association, 7(6), 366–376. Butler, R. N. (1975). Why survive: Being old in America. New York, NY: Harper and Row. Carter, T. (2006). Tort reform Texas style: New laws and med-mal damage caps devastate plaintiff and defense firms Alike. ABA Journal. Retrieved from http://www.abajournal. com/magazine/article/new_laws_and_med_mal_damage_caps_devastate_plaintiff_ and_defense_firms_alik/ Castle, N. G., & Anderson, R. A. (2011). Caregiver staffing in nursing homes and their influence on quality of care: Using dynamic panel estimation methods. Medical Care, 49(6), 545–552. Centers for Disease Control and Prevention. (2011). U.S. obesity trends. Retrieved from http:// www.cdc.gov/obesity/data/trends.html Centers for Medicare & Medicaid Services (CMS). (2007). Evaluation of the quality indicator survey (QIS) contract #500–00-0032/TO#7 (Final Report). Centers for Medicare & Medicare Services. (2008). The Five-Star Nursing Home quality rating system, Volume I. Centers for Medicare & Medicaid Services (CMS). (2009). Nursing home data compendium. Centers for Medicare & Medicaid Services (CMS). (2010). Medicare state operations manual, Revision 63. Centers for Medicare & Medicaid Services (CMS). (2011). Quality measures. Retrieved from https://www.cms.gov/NursingHomeQualityInits/10_NHQIQualityMeasures.asp Collier, E., & Harrington, C. (2008). Staffing characteristics, turnover rates, and quality of resident care in nursing facilities. Research in Gerontological Nursing, 1(3), 157–170. Comondore, V. R., Devereaux, P. J., Zhou, Q., Stone, S. B., Busse, J. W., Ravindran, N. C., . . . Guyatt, G. H. (2009). Quality of care in for-profit and not-for-profit nursing homes: Systematic review and meta-analysis. BMJ (Clinical Research Ed.), 339, b2732. Consumers Union. (2003). How good are your state’s nursing homes? Yonkers, NY: Author. Dergarabedian. (2011). The box office year in review—2011. Retrieved from http://www.hollywood.com/news/The_Box_Office_Year_in_Review_2011/12394979 Eden Alternative. (2011). Retrieved from http://www.edenalt.org/about-the-eden-alternative Elkins, J. S., Whitmer, R. A., Sidney, S., Sorel, M., Yaffe, K., & Johnston, S. C. (2006). Midlife obesity and long-term risk of nursing home admission. Obesity, 14(8), 1472–1478. Federal Matching Shares for Medicaid, the State Children Health Insurance Program and Aid to Needy, Aged, Blind, or Disabled Persons for October 1, 2010 Through September 30, 2011, 74 Fed. Reg. 62315 (Nov. 27, 2009).

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Feng, Z., Fennell, M., Tyler, D. A., Clark, M., & Mor, V. (2011). Growth of racial and ethnic minorities in U.S. nursing homes driven by demographics and possible disparities in options. Health Affairs, 30(7), 1358. Fries, B. E., Hawes, C., Morris, J. N., Phillips, C. D., Mor, V., & Park, P. S. (1997). Effect of the National Resident Assessment Instrument on selected health conditions and problems. Journal of the American Geriatrics Society, 45(8), 994–1001. Haber, C., & Gratton, B. (1994). Old age and the search for security. New York, NY: Cambridge University Press. Harrington, C. (2002). Nursing home staffing standards. Kaiser Commission on Medicaid and the Uninsured. Washington, D.C: The Henry J. Kaiser Family Foundation. Harrington, C. (2008). Nursing Home Staffing Standards in State Statutes and Regulations. San Francisco, CA: University of California. Harrington, C., O’Meara, J., & Kang, T. (2006). Snapshot: Staffing and quality in California nursing homes. Oakland, CA: California Healthcare Foundation. Hill, A. L., Rand, D. G., Nowak, M. A., & Christakis, N. A. (2010). Infectious disease modeling of social contagion in networks. PLoS Computational Biology, 6(11), e1000968. Houser, A., Fox-Grage, W., & Gibson, M. (2009). AARP across the states: Profiles of long term care and independent living: Executive summary, state data, and rankings (8th ed.). Washington, DC: AARP Public Policy Institute. Howes, C. (2005). Living wages and retention of homecare workers in San Francisco. Industrial Relations, 44, 139–163. Hyer, K., Thomas, K. S., Branch, L. G., Harman, J. S., Johnson, C. E., & Weech-Maldonado, R. (2011). The influence of nurse staffing levels on quality of care in nursing homes. The Gerontologist, 51(5), 610–616. Institute of Medicine. (2001). Improving the quality of long-term care. Washington, DC: National Academy Press. Jones, A. L., Dwyer, L. L., Bercovitz, A. R., & Strahan, G. W. (2009). The National Nursing Home Survey: 2004 overview. National Center for Health Statistics. Vital Health Statistics, 13(167), 1–155. Jurkowski, E. T. (2013). Implementing culture change in long-term care: Benchmarks and strategies for management and practice. New York, NY: Springer Publishing Company. LaPorte, M. (2011, June 1). Top 50 largest nursing home companies. Provider, 56–59. Long, C. O., & Alonzo, T. (2009). Palliative care for advanced dementia: A model teaching unit—practical approaches and results. Arizona Geriatrics Society, 13(2), 14–17. McDowell, I., & Newell, C. (1996). Measuring health: A guide to rating scales and questionnaires (2nd ed.). New York, NY: Oxford University Press. McKnight’s Long-Term Care News. (2009). State attorneys general urge suspension and revision of Five-Star rating system. New York, NY: Haymarket Media Group. Medicare Program: Prospective Payment System and Consolidated Billing for Skilled Nursing Facilities for FY2011; Notice, 75 Fed. Reg. 42886 (July 22, 2010). Mehdizadeh, S., Applebaum, R., Nelson, I. M., & Straker, J. (2011). Coming of age: Tracking the progress and challenges of delivering long term services and supports in Ohio. Washington, DC: Centers for Medicare & Medicaid Services. National Citizens’ Coalition for Nursing Home Reform (NCCNHR). (1998). Consumers’ minimum standard for nurse staffing in nursing homes. Oxford, OH: Miami University. Nation Master. (2011). Retrieved from http://www.nationmaster.com/graph/foo_mcd_resfood-mcdonalds-restaurant Noelker, L. S., & Harel, Z. (Eds.). (2000). Quality of life and quality of care in long-term care. New York, NY: Springer Publishing Company. Olivarez-Giles, N. (2010). Skilled Healthcare Group agrees to settle nursing home lawsuit. Patient Protection and Affordability Care Act of 2010, Title IV, Subtitle B, Nursing home transparency and improvement. Retrieved from http://www.medicareadvocacy.org/InfoByTopic/ Reform/10_06.17.SNFProvisions.htm Pear, A. (2002, Feb 18). 9 of 10 nursing homes lack adequate staff, study finds. New York Times, p. A1. Retrieved from http://www.nytimes.com/2002/02/18/us/9-of-10-nursing-homesin-us-lack-adequate-staff-a-government-study-finds.html?src=pm

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Pioneer Network. (2011). About us. Retrieved from http://www.pioneernetwork.net/AboutUs Power, G. A. (2010). Dementia beyond drugs: Changing the culture of care. Baltimore, MD: Health Professions Press. Schnelle, J. F., Simmons, S. F., Harrington, C., Cadogan, M., Garcia, E., & M Bates-Jensen, B. (2004). Relationship of nursing home staffing to quality of care. Health Services Research, 39(2), 225–250. Sedensky, M. (2011). More young people are winding up in nursing homes. Sarasota, FL: Associated Press. Spilsbury, K., Hewitt, C., Stirk, L., & Bowman, C. (2011). The relationship between nurse staffing and quality of care in nursing homes: A systematic review. International Journal of Nursing Studies, 48(6), 732–750. Squillace, M. R., Remsburg, R. E., Harris-Kojetin, L. D., Bercovitz, A., Rosenoff, E., & Han, B. (2009). The National Nursing Assistant Survey: Improving the evidence base for policy initiatives to strengthen the certified nursing assistant workforce. The Gerontologist, 49(2), 185–197. State Operations Manual. (2009). Appendix P—Survey protocol for long term care facilities—part I. (revised) 42, pp. 90–92. Washington, DC: Centers for Medicare & Medicaid Services. Turnham, H. (2009). Federal nursing home reform act from the Omnibus Budget Reconciliation Act of 1987 or simply OBRA ‘87 summary. Retrieved from http://www.ltcombudsman.org/ NORC-Library#laws U.S. Bureau of Labor Statistics. (2011). Occupational wages and employment, 2010. Washington, DC: U.S. Department of Labor. U.S. Department of Health and Human Services (HHS). (2001). HHS to provide nursing home quality information to increase safety and quality in nursing homes. Press release. Washington, DC: Author. U.S. Department of Health and Human Services (HHS), Office of the Inspector General. (2010). Questionable billing by skilled nursing facilities (Report OEI-02–09-00202). Washington, DC: U.S. Department of Health and Human Services. U.S. Department of Health and Human Services (HHS), Office of the Inspector General. (2011). Medicare atypical antipsychotic drug claims for elderly nursing home residents (Report OEI-07–08-00150). Washington, DC: U.S. Department of Health and Human Services. U.S. General Accounting Office (GAO). (1998). California nursing homes: Care problems persist despite federal and state oversight (Publication No. GAO/HEHS-98–202). Washington, DC: Author. U.S. General Accounting Office (GAO). (1999a). Nursing homes: Additional steps needed to strengthen enforcement of federal quality standards (Publication No. GAO/HEHS-99–46). Washington, DC: Author. U.S. General Accounting Office (GAO). (1999b). Nursing homes: Complaint investigation processes often inadequate to protect residents (Publication No. GAO/HEHS-99–80). Washington, DC: Author. U.S. General Accounting Office (GAO). (2000) Nursing homes: Sustained efforts are essential to realize potential of the quality initiatives (Publication No. GAO/HEHS-00–197). Washington, DC: Author. U.S. Government Accountability Office (GAO). (2011). Private investment homes sometimes differed from others in deficiencies, staffing, and financial performance (GAO-11–571). University of Minnesota, NH regulations plus. (2011). Retrieved from http://www.sph.umn .edu/hpm/NHRegsPlus/NHRegs_by_State/By%20State%20Main.html Vladeck, B. (1981). Unloving care: Our nation’s nursing home tragedy. New York, NY: Basic Books. Wikinvest. (2012). Nursing homes. Retrieved from http://www.wikinvest.com/concept/ Nursing_Homes Zhang, N. J., Unruh, L., Liu, R., & Wan, T. T. (2006). Minimum nurse staffing ratios for nursing homes. Nursing Economics, 24(2), 78–85, 93, 55.

II

Current Issues In Long-Term Care

7 ENHANCING AND MANAGING CLIENT CARE Cristina M. Flores Jay S. Luxenberg David Werdegar

LEARNING OBJECTIVES On the completion of Chapter 7, the reader will be able to •  Describe the aging population •  Identify and discuss the common age-related changes that occur in

the following systems: cardiovascular, respiratory, gastrointestinal (GI), endocrine, neurologic, immune, urinary, musculoskeletal, reproductive, and sensory •  Learn how to promote health and wellness among older adults •  Consider the multiple factors that influence chronic disease management •  Look ahead to the future in working with older adults and consider opportunities to enhance the quality of health care of older adults

In the first part of this book, “Options in Long-Term Care,” readers learned of the variety of settings for the delivery of long-term care (LTC). From one’s own home to the skilled nursing facility, alternatives across the continuum were discussed in detail. No matter what the setting of care delivery, understanding aging and the aging process is important for professionals working with older adults (YeeMelichar, Renwanz-Boyle, & Flores, 2011). Chapter 7 begins with a description of the aging population and associated trends and continues with an overview of the natural processes of aging. This information sets the backdrop for a discussion of common and important issues surrounding client care, including promoting health and wellness and chronic disease management. The chapter concludes by identifying practices and strategies to enhance the quality of care and the quality of life of older adults.

125

126  II.  CURRENT ISSUES IN LONG-TERM CARE

THE AGING POPULATION The Aging Society The projected growth of the U.S. older population is the major factor influencing the future need for LTC. This growth projection is illustrated in Figure 7.1. According to the U.S. Census Bureau data (Vincent & Velkoff, 2010), between 2010 and 2050, the United States is projected to experience a rapid increase in the older population. In 2050, the number of Americans aged 65 and older is projected to be 88.5 million, more than double the 2010 population of 40.2 million. The “baby boomers” (i.e., those born between 1946 and 1964) are principally responsible for this increase. The number of people in the “oldest old” age group (i.e., those 85 years or older) is projected to grow from 5.8 million in 2010 to 8.7 million in 2030. By 2050, this oldest old group is anticipated to reach 19 million.

Sex and Aging Although female life expectancy has long exceeded male life expectancy, the gap is expected to narrow over the next four decades as men are living longer (Vincent & Velkoff, 2010). In 2010, 57% of the population older than 65 years were women and this is expected to decrease to 55% by 2050. This narrowing of the gender gap trend is projected to be even more pronounced for the oldest old (i.e., 85 and older). In 2010, 67% of the population older than 85 years were women and this is expected to decrease to 61% by 2050. The changes in these ratios may have an impact on the social and economic well-being of older adults and also may impact the types of care that may be needed.

30.0% Age 85 and older 25.0%

Age 60 and older Age 65 and older

20.0% 15.0% 10.0% 5.0% 0.0% 1880 1900 1920 1940 1960 1980 2000 2020 2040 2060

Figure 7.1  Older population by age: 1900–2050—percentages 60+, 65+, and 85+. Source: Vincent and Velkoff (2010).

7.  ENHANCING AND MANAGING CLIENT CARE  127

Race and Aging Younger populations are typically more diverse than older populations. However, it is projected that racial and ethnic diversity of older adults will substantially increase over the next four decades (Vincent & Velkoff, 2010). All race and ethnic groups will become older, but the degree of aging projected within groups varies. The portion of the population older than 65 years that is White is expected to decrease by 10% between 2010 and 2050 and all other groups are projected to increase. Forty-two percent of the older population will be minority by 2050, which will be 20% more than 2010. By 2050, among those aged 65 and older, 77% will be White, 12% will be Black, and 9% will be Asian (populations for each race group include both Hispanics and non-Hispanics, as Hispanics may be of any race). Furthermore, the proportion of the older population that is Hispanic is expected to quickly increase over the next 40 years to 20% of the population in 2050, as compared to 7% in 2010.

Geography and Aging As the older population continues to increase in size and proportion, changes in where older Americans live, or the “geographic distribution” of the older population, will impact LTC services. Older Americans, not unlike the rest of the U.S. population, live in the most populous states (i.e., California, Florida, New York, and Texas) and the majority of them live within major metropolitan areas (Colello, 2007). However, the older population also accounts for a larger proportion of the total U.S. population living in nonmetropolitan or rural areas. In these rural areas, there is concern that the level of access to affordable housing and transportation, health and social services, and medical providers will be negatively impacted. These changing geographic distributions of the older population may result in disparities between resources and needs, including those in LTC.

Economics, Health Care, and Aging The aging of the population will place substantial additional pressure on publicly funded health, LTC, and income support programs such as Social Security, Medicare, and Medicaid. The future economic strains in the United States derive not so much from the growth in the older adult population or the 85 and older population but rather from the slower growth in the non– older adult, working-age population (Wiener & Tilly, 2002). Between 2000 and 2050, the population in the age group of 16 to 64 is projected to grow by only 33% and this slow growth means there will be relatively fewer people to pay the taxes necessary to support public programs for the older population and fewer people to provide the services that older people need. It is likely that there will be a growing shortage of health care workers, especially nurses and paraprofessionals. Because financing for LTC services, such as nursing home care and home- and community-based services, occurs mainly through a combination of Medicaid, Medicare, and publicly funded programs, a substantial additional economic burden is certain.

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AGE-RELATED CHANGES OF PHYSIOLOGICAL SYSTEMS Human aging is a continuous, complex, and dynamic process that begins with birth and ends only with death. In the absence of disease pathology, there are a variety of normal aging changes that occur in body systems. These changes vary among individuals and may be affected by lifestyle and genetics. It is important to differentiate “normal” physiological changes from “disease” processes so that appropriate care interventions can be developed. Keep in mind that these “normal” changes may alter an older person’s response to an illness and are typically more pronounced in advanced age (i.e., 85 years and older).

Cardiovascular System The heart and blood vessels comprise the cardiovascular system. This system circulates blood and enables the delivery of oxygen and nutrients to all body systems as well as the removal of waste products. In healthy people, the normal changes in the cardiovascular system associated with age do not limit functional capacity for normal activities of daily living. The muscle of the heart does become “stiffer” and may increase in size with age. Maximum heart rate typically decreases with age. The resting heart rate and blood pressure do not change although it may take an older person’s heart rate and blood pressure longer to return to normal after stress or exercise. Also, blood pressure may take longer to stabilize when position changes (e.g., sitting to standing), so older adults should change positions slowly. Despite changes with aging, most older adults maintain the opportunity for improved cardiovascular function through conditioning (Pugh & Wei, 2001). Early recognition and treatment of diseases that can be distinguished from normal aging (e.g., hypertension, atherosclerosis, irregularities of heart rhythms), together with preventive efforts, can reduce the predicted trends in cardiovascular morbidity and mortality among older adults.

Respiratory System The respiratory system refers to the parts of the body that are involved with breathing, including the nose, mouth, pharynx, trachea, and lungs. With age, lungs become stiffer and respiratory muscle strength and endurance diminishes (Mauk, 2006). The total lung capacity typically remains constant, but the vital capacity (i.e., the amount of air that can be forcibly exhaled) decreases, whereas the residual lung capacity increases (i.e., the amount of air remaining in the lungs after forcible exhaling). The alveoli (i.e., air sacs) of older adults collapse easier than those of younger persons and alveolar surface area decreases with age, also contributing to diminished exercise capacity. Cilia (i.e., tiny, hair-like projections in the respiratory tract that move mucus and debris up and out) decrease in growth and mucous cells increase, making older adults more prone to respiratory infections. These normal changes in the respiratory system make control of breathing less efficient in older persons, so they are consequently at greater risk for acute respiratory problems such as pneumonia.

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Gastrointestinal System The gastrointestinal (GI) system includes the mouth, pharynx, esophagus, the stomach, the small intestine, the large intestine (i.e., colon) the liver, gallbladder, and the pancreas. Changes associated with age to this system are relatively minor, but the two most affected areas are the upper tract (i.e., pharynx and esophagus) and the large intestine (i.e., colon; Hall, 2002). Table 7.1 illustrates age-related changes of the GI system.

Genitourinary System Urinary Changes The kidneys, ureters, urethra, and bladder make up the urinary system, which undergoes noteworthy changes with age (Beck, 2000). As a person ages, the kidneys shrink, both in size and weight. Blood flow decreases and the size of the nephrons (i.e., filtering units) decrease. The combination of changes reduces the ability to filter blood, concentrate urine, and to clear drugs. Furthermore, with age, there is a reduced hormonal response (i.e., vasopressin) and a diminished ability to conserve fluids, which may increase an older person’s risk of dehydration. With aging, the changes in the bladder are characterized by decrease in capacity, a decrease in urinary flow, an increase in urgency, and an increased amount of residual urine. These changes tend to increase nocturia (i.e., frequent urination at night time) and the risk for urinary tract infections. In men, the prostate gland surrounding the neck of the bladder and urethra can become enlarged, causing urinary dysfunction (Mauk, 2006). TABLE 7.1  Overview of Age-Related Gastrointestinal System Changes Part

Age-Related Change

Mouth

The mouth and teeth are used for mastication (i.e., chewing). Teeth may become less sensitive and brittle with age. Some experience loss of teeth. Atrophy of muscles of the jaw, pharynx, and mouth may affect mastication and swallowing.

Esophagus

Older adults may have stiffening of the esophageal wall and less sensitivity to pain/ discomfort, which can affect swallowing.

Stomach

Older adults are more prone to gastric ulcers than younger persons, especially if using aspirin and nonsteroidal pain medications.

Small intestine

No or minimal changes. As we age, the small intestines absorb less calcium. Older adults need more calcium to prevent bone mineral loss and osteoporosis.

Large intestine

Older adults often have reduced peristalsis (intestinal muscle contractions) of the large intestine (colon). This slower rate of food transport can contribute to constipation. Constipation is aggravated by a low intake of fiber and water, inactivity, medications, and overuse of laxatives.

Liver

Functional changes of the liver with age include reduced blood flow, altered clearance of some drugs, and a diminished capacity to regenerate damaged liver cells. The half-life of certain drugs may be prolonged due to decreased metabolism by the liver.

Gallbladder

In older adults, there is a decline in the emptying rates of bile, which may increase risk of gallstone formation.

Pancreas

May decrease in weight, but this does not affect function in normal aging.

Sources: Hall and Wiley (1999); Rao, Mudipalli, Mujica, Patel, and Zimmerman (2003).

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Reproductive Changes Both men and women experience reproductive system changes with age. For women, menopause usually occurs between the ages of 45 and 52. At menopause, the production of estrogen markedly decreases and ovulation ceases. The decrease in estrogen may cause atrophic changes in the vagina, and uterus and vaginal secretions are reduced. Common symptoms of menopause include hot flashes, palpitations, irritability, headaches, depression, fatigue, weight gain, insomnia, night sweats, forgetfulness, and inability to concentrate. For some women, this can be treated with estrogen replacement therapy (ERT). In men, testosterone levels gradually fall and the size of the testes decreases, with variable effects over time on the rate of sperm production, sex drive, and/or erectile function.

Integumentary System Skin Skin and its derivatives (i.e., hair, nails, sweat, and oil glands) make up the integumentary system. Skin is the largest human organ and protects the body’s organs and tissues. Both intrinsic and extrinsic factors affect how the skin ages. For example, although the passage of time does influence the formation of wrinkles in the skin, exposure to sun may be a more significant factor. Common age-related changes to the skin are a thinning of the area between the dermis and the epidermis, a decrease in elastin and collagen, a reduction in the size of supporting cell structure, and a decreased ability of the skin to retain moisture.

Hair Gray hair occurs in older adults in varying degrees. Hair mainly becomes gray because of a gradual decrease in the production of melanin (by the pigment cells in the hair bulbs). Graying of the hair is also influenced by heredity and hormones. With age, hair follicles on the scalp diminish in number and the growth rate of hair decreases in the scalp, armpits, and pubic areas. Both men and women may grow bald, but the prevalence is much higher in men. Hair growth accelerates and thickens in places like nostrils, ear, and eyebrows, especially in men. Older women may have an increase in facial hair as estrogen levels decrease.

Musculoskeletal System The musculoskeletal system includes bones, muscles, joints, tendons, and cartilage and serves to shape, support, and protect the body and control its movements. Bone loss is an inevitable consequence of aging but its onset and rate depends on many factors such diet, exercise, and genetic background. Once peak bone mass is reached around the age of 30, bone mass can be maintained but not built. In middle age, bone mass begins to gradually decline as a result of change in the balance between the cells that produce bone and the cells that absorb bone. Women have a more rapid rate of bone loss than men (Arking, 1998), with the most rapid losses occurring in the 5 years following menopause. Osteoporosis (i.e., thinning of the bones with reduction in bone mass due to depletion of calcium and bone protein) affects about 8 million American women and 2 million American men (National Osteoporosis Foundation, 2004). Generally, with age, muscles decrease in size, weight, strength, and endurance. These changes may be magnified by factors such as inactivity and poor nutrition.

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Nervous System There are two components to the nervous system, the central nervous system consisting of the brain and the spinal cord, and the peripheral nervous system. The idea that age causes an inevitable decline in brain function and loss of functional capacity is a myth. There is a decrease in the weight of the brain that occurs with natural aging and some nerve cells may degenerate but generally this does not affect ordinary daily functioning. Although the adult brain does undergo changes, it retains a remarkable plasticity in its ability to compensate functionally for those losses that do occur. Some cognitive abilities and wisdom based on life experience may be enhanced with age.

Cognition Most neurological decline occurs after age 60 and is generally not that severe (Sailer, Dichgans, & Gerloff, 2000). At age 65, fewer than 2% of older Americans have cognitive impairment. The cognitive abilities of older persons vary among individuals as they do among younger adults. Within individuals, some functions may change, whereas others do not. Statistically, the incidence of cognitive impairment increases with age so that by age 85, up to one third of older persons have some degree of cognitive impairment. However, we find many older adults who continue to perform at the level of a younger adult. Memory problems are a common concern of older adults.

Dementia Dementia is not a disease—it is a group of symptoms that may be caused by a number of different sources. Dementia is a loss of brain function and it affects memory, thinking, language, judgment, and behavior (U.S. National Library of Medicine, 2011). Dementia usually occurs in older age. It is rare in people younger than 60 years. The risk for dementia increases as a person gets older. There are many types of dementia. Many believe that Alzheimer’s disease is the most common type of dementia. See Chapter  14 for further information of Alzheimer’s disease. Other common dementias include vascular dementia (i.e., dementia due to many small strokes) and Lewy body disease (i.e., abnormal protein structures in certain areas of the brain). There are certain medical conditions that can lead to dementia such as Huntington’s disease, multiple sclerosis, certain infections, Parkinson’s disease, and Pick’s disease. Some dementia may be stopped or reversed if the cause is found soon enough and treated, such as brain tumors, low vitamin B12 levels, alcohol abuse, and normal-pressure hydrocephalus. Dementia usually first appears as forgetfulness. The progressive symptoms of dementia occur in areas of mental function, including (a) language, (b) memory, (c) perception, (d) emotional behavior or personality, and (e) cognitive skills (e.g., calculation, abstract thinking, or judgment).

Delirium Delirium is a common syndrome seen in older adults, especially in hospital settings. Delirium is defined as “disturbance of consciousness with impaired attention and disorganized thinking or perceptual disturbance that develops acutely, has a fluctuating course, and with evidence that there is an underlying physiologic or medical condition causing the disorder” (Tullmann, Mion, Fletcher, & Foreman, 2008, p. 67). Although most often reversible, delirium is associated with increased mortality, increased hospital costs, and long-term cognitive and functional impairment. Delirium may be prevented with recognition of high-risk patients and the

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implementation of a standardized protocol. Delirium, when it develops, is often underrecognized by physicians and nurses in acute care settings.

Depression The nervous system is also susceptible to changes in mood and affect. Depression is not uncommon in older adults and can be identified and treated successfully. Depression is often underrecognized in older adults, especially those with chronic health conditions. Left untreated, depression may progress and have dramatic effects on overall health.

Immune System The immune system consists of cells and biochemicals that work together to defend the body against microorganisms such as viruses, bacteria, parasites, and fungi. With age, changes in the immune system may increase an older person’s susceptibly to infections and other conditions. The mortality rate from infection is much higher in older persons. Older adults are more likely to die of pneumonia, urinary tract infections, or sepsis than their younger counterparts. Age, hormonal changes, nutrition, and stress can all affect immune system function.

Endocrine System The endocrine system is a network of various glands that secrete hormones into the blood, which are used by “target” organs. The endocrine system controls a variety of important functions such as energy metabolism, reproduction, and stress response. Age-related changes to the endocrine system are seen specifically in individual glands and illustrated in Table 7.2.

TABLE 7.2  Overview of Age-Related Endocrine System Changes Gland

Age-Related Change

Hypothalamus/ pituitary gland

The pituitary is located in the brain below the hypothalamus. Hormones secreted by the pituitary gland regulate other endocrine glands, such as the thyroid and adrenal glands. The pituitary peaks in size during middle age and then gradually shrinks. Growth hormone level declines, which contributes to loss of muscle mass and decreased bone formation.

Thyroid gland

Thyroid hormone levels decrease slightly with age but usually remain in the lower range of normal.

Parathyroid gland

Parathyroid hormone, which regulates calcium metabolism, generally shows insignificant changes with aging.

Pineal gland

The hormone melatonin declines with age and this may impact sleep patterns.

Adrenal glands

A decrease in cortisol and aldosterone produced by the adrenal glands may affect immune and cardiovascular function but there is only a moderate change with age.

Islets of Langerhans (in the pancreas)

Insulin continues to be produced in sufficient quantities in older adults but their muscle cells may become less sensitive to the effects of insulin.

Source: Timaras (2003).

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Sensory System With age, senses (i.e., vision, hearing, taste, smell, touch) may become less acute. The most dramatic sensory changes with age affect vision and hearing, but all the senses can be affected. Many of these changes can be compensated for with assistive devices (e.g., glasses, hearing aids) or by changes in lifestyle. Table 7.3 summarizes age-related sensory changes. TABLE 7.3  Overview of Age-Related Sensory System Changes Sense

Major Age-Related Changes

Vision

Changes in the eye: Corneal flattening. As the eye ages, the corneal surface flattens, admitting less light into the eyeball. This reduces the transmitted light into the older eye by one third. Lens transparency. Diminishes with aging, which weakens available light to receive colors with short wavelengths (e.g., blue and violet). When new lens fibers multiply at the edge of the lens, older fibers move to the center to create a dense center of the lens. The lens accumulates yellow substances that can, over time, become cataracts and obscure vision. Less efficient retina. The most sensitive part of the retina functions less well with age because of decreased blood supply and the cumulative effects of radiation damage. This results in decreased spatial discrimination, black and white contrast, and flicker sensitivity. Eyes become less able to tolerate glare and have more trouble adapting to darkness or bright light. Presbyopia (i.e., reduced lens elasticity). Over time, the lens of the eye becomes less elastic, which diminishes the focusing power of the eye and causes a decline in visual acuity. As presbyopia becomes more pronounced, people hold reading materials further away from their eyes. Many eye diseases can be minimized or slowed with proper treatment. Eye diseases such as macular degeneration, glaucoma, cataracts, and diabetic retinopathy are often painless and the onset is gradual; they can greatly impair vision if not identified and properly treated.

Hearing

Changes in the ear: Membranes in the middle ear, including the eardrum, become less flexible with age. In addition, the small bones in the middle ear, the ossicles, become stiffer. Both these factors somewhat decrease hearing sensitivity but are not thought to cause significant impairment. Changes can also occur in the inner ear, but it is unclear whether it is aging or exposure to environmental noise that causes the problems that result in hearing loss. Presbycusis, literally “old man’s hearing,” is the most common form of hearing loss with aging. It is characterized by a decrease in perception of higher frequency tones and a decrease in speech discrimination. The magnitude of presbycusis varies widely and it is hard to determine how much of the hearing loss is due to aging and how much is due to exposure to environmental noise, ototoxic drugs, or chronic age-related conditions such as hypertension and diabetes. Tinnitus refers to a chronic ringing, buzzing, tinkling, humming, or other noise in the ears that only the individual can hear. Nearly 36 million Americans have tinnitus. Tinnitus is more common among older adults because it may represent a lifetime of exposure to loud noise. Treatable causes of tinnitus include high blood pressure, wax in the ear canal, or some medications (e.g., aspirin, antibiotics, antidepressants).

Smell

With age, the number of working smell receptors decreases and this increases the threshold for smell. It requires a more intense smell for it to be identified and distinguished from other smells. After the age of 50, the sense of smell decreases rapidly. By age 80, the sense of smell is reduced by about half.

Taste

Taste diminishes with age and older persons often complain that food does not taste as good as it used to. Some atrophy of the tongue occurs with age. Receptor cells for taste are found in the taste buds on the tongue and are replaced continuously.

Touch

With age, sense of touch and response to painful stimuli decreases. The actual number of touch receptors decreases, which results in a higher threshold for touch. The major concern in a loss in touch sensitivity relates to personal safety (e.g., older adults do not sense heat as quickly so they tend to have worse burns).

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PROMOTING HEALTH AND WELLNESS Health Promotion Although the presence of chronic illness clearly influences function as we age, the largest determinant of function is related to lifestyle, dietary, and health-related behavior. Quite simply, the evidence suggests that if you regularly exercise, avoid under- and particularly overnutrition, avoid smoking and other substance abuse, and retain a stimulating social and intellectual life, you are much more likely to retain your independence as you age. Even the diseases most associated with loss of independence with aging are in part related to these factors. We now understand that diabetes, for example, is a risk factor for Alzheimer’s disease as well as heart disease and osteoporosis, and, of course, diabetes predisposition can be minimized by avoidance of obesity and inactivity. Hypertension is a risk factor for stroke and heart failure, and hypertension predisposition can be minimized by exercise and avoiding smoking and alcohol abuse. Osteoporosis and its associated function-limiting complications from fractures can be minimized by dietary factors, exercise, and again by avoiding smoking and alcohol excess. The common theme is that although one’s genetics may contribute to propensity toward diseases of aging, there are almost always multiple controllable factors that can help minimize the severity or allow avoidance of the functional decline that triggers the need for functional assistance. Diet is very important in health promotion. The total daily intake of calories is the major determinant of weight gain and development of obesity. Diet composition emphasizing consumption of fruits and vegetables, whole grains, legumes, seeds, and nuts can minimize risk of many diseases. Adequate dietary calcium helps avoid osteoporosis. Adequate dietary omega (ω)-3 polyunsaturated fatty acids have been associated with the prevention of cardiovascular disease and a lower incidence of dementia.

Risk Reduction Deconditioning and sarcopenia (i.e., loss of muscle mass) are among the most preventable and potentially reversible causes of functional disability. The medical literature is replete with studies documenting the benefit of exercise. Exercise has the potential to improve the cardiovascular reserve limitations that impair a person’s ability to perform necessary life tasks like shopping, use of transportation, and housework. Exercise and muscle strengthening can help prevent falls and other injuries that have the potential of precipitously impairing function. Exercise minimizes the loss of lean muscle mass and strength that characterize sarcopenia. Abdominal obesity is an independent risk factor for loss of mobility, aside from its predisposition to cardiovascular disease or diabetes (Penninx et al., 2009). Caloric moderation to avoid overnutrition and obesity can prevent abdominal obesity from developing in those genetically at risk for such a distribution of fat cells. Smoking avoidance or smoking cessation has demonstrable benefits irrespective of age. Smoking remains one of the most important preventable risks associated

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with the diseases of aging—cardiovascular, neurologic, ophthalmologic, cognitive, dermatologic, pulmonary, and metabolic. Smoking is a risk factor for osteoporosis, Alzheimer’s disease (Cataldo, Prochaska, & Glantz, 2010), cataracts (Chang et al., 2011), and macular degeneration (Klein, Francis, Ferris, Hamon, & Clemons, 2011) as well.

Disease Prevention There is inherent overlap between strategies that reduce risk and those that prevent disease. In particular, we are now aware that the metabolic syndrome, with insulin insensitivity, hypertension, and hyperlipidemia, is associated with dramatic increases in the risk of diabetes mellitus, atherosclerosis, and peripheral vascular disease. Diabetes is then associated with an increased risk of dementia. All the strategies discussed above that reduce the risk of metabolic syndrome—foremost being exercise and weight moderation—therefore can be expected to help prevent multiple diseases. There is also an overlap in strategies to prevent bone fractures in older adults— best practices would emphasize both prevention of osteoporosis and prevention of falls, both of which contribute to fracture risk. Osteoporosis prevention starts in childhood, when weight-bearing exercise, adequate dietary calcium, and sunlight exposure to produce sufficient vitamin D allow the production of maximum bone density. After young adulthood, in general, we all lose bone mass and strength, but again, adequate vitamin D and dietary calcium help prevent accelerated loss, whereas weight-bearing exercise and smoking avoidance also help minimize rate of loss. A screening process, using measured bone density, can identify those at highest risk of pathologic fracture and allow additional measures such as pharmacologic prevention with bisphosphonates. Fall prevention can be promoted with strength and balance exercises, alcohol moderation or avoidance, proper footwear, and environmental factors such as adequate lighting and reduction of clutter and other environmental hazards. Atherosclerosis can be prevented or at least minimized by similar factors that prevent metabolic syndrome, plus moderation of blood lipids by dietary and, if necessary, pharmacologic means. Stroke and congestive heart failure risk can be lowered by control of hypertension, again by both lifestyle and pharmacologic strategies. If the cardiac rhythm disturbance, atrial fibrillation, is present, then stroke risk can be dramatically lowered with a variety of pharmacologic strategies that prevent blood clots from forming. If diabetes is present, then complications such as kidney failure, blindness, and loss of limbs can be minimized by using lifestyle measures (e.g., diet, exercise, smoking avoidance) and good pharmacologic control of blood sugar to minimize the hyperglycemia of diabetes while also avoiding the consequences of iatrogenically low blood sugars. Death and disability due to cancer can also be minimized with lifestyle factors (e.g., avoidance of obesity) and proper screening (e.g., periodic colonoscopy and mammography). Smoking avoidance also is a great way to minimize the chance of many cancers. Minimizing environmental exposures, for example, to asbestos and arsenic, also helps avoid cancer. Avoiding excess sunlight exposure and, in particular, avoiding sunburn can minimize several types of skin cancers, including melanoma.

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Advance Directives Modern medicine has provided a remarkable spectrum of interventions to interrupt the natural history of disease states. For some, the benefit clearly outweighs the downside—for example, vaccination has eliminated many serious infections as common causes of death or disability without any significant burden on those being administered the vaccine. Other interventions do not have such a clear benefit compared to the burden they cause. An example would be the use of artificial feeding administered through a tube through the abdominal skin into the stomach. There are circumstances in which this is invaluable, for example, in otherwise healthy individuals who cannot safely swallow. Under other circumstances, however, the benefit is not so clear and the burden is heavier. In advanced dementias such as Alzheimer’s disease, the loss of appetite and ability to chew and swallow safely can occur as a late stage of the natural history of the disease state. To use a “tube feeding” under those circumstances often requires restraining the individual’s hands because the individual will repeatedly pull out the tube. There is little evidence that tube feeding under those circumstances actually prolongs life or prevents the complications of malnutrition, such as pressure ulcers (Sampson, Candy, & Jones, 2009). How does one decide whether to use interventions such as cardiopulmonary resuscitation, tube feeding, intubation and artificial ventilation, and so forth? For an individual capable of understanding the potential benefits and the burdens, and understanding the alternatives and the full set of implications of the proposed intervention, we ask the patient to decide whether or not to choose the intervention. It is the circumstance, as in the case of advanced dementia, in which such decision-making capacity is absent, that we need to look to alternative decision makers such as family members. That is where the potential exists to provide an intervention that would not have coincided with the wishes of the person to whom the interventions will be applied. A protection against this, which also relieves much of the burden of decision making from family members, is to outline your wishes in a document or through verbal communication. Such communication is called an advanced directive (Crane, Wittink, & Doukas, 2005). Many jurisdictions have incorporated advance directives in their regulations governing the provision of medical care.

CHRONIC DISEASE MANAGEMENT Management of Common Illness As we age, it is common to accumulate multiple chronic illnesses. Some of these chronic illnesses have etiologies that are linked. For example, the constellation of abnormalities called “metabolic syndrome” is very common and is associated with the development of hypertension, hyperlipidemia, atherosclerosis, diabetes, and dementia. As diabetes progresses, it is associated with peripheral vascular disease, neuropathy, retinopathy, and renal disease. Consequently, it is common to have to juggle multiple treatments for multiple conditions in any one individual. The total number of potential medications useful for treating every chronic condition a client has can be in the dozens. It is necessary to balance the potential benefit from any

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one of these medications with potential problems associated with polypharmacy. Often it is necessary to prioritize the medications, with only the most important and potentially beneficial being provided. As the number of medications increases, the potential for drug–drug interactions increases. Also, the more complicated a medication regimen, the more likely it is that accurate compliance will suffer. The use of a structured pillbox, such as a Mediset, blister cards, or compliance card packaging from the pharmacy, can help improve compliance. Frequent medication monitoring by professionals also helps minimize the potential for medicationrelated problems. Of course, not all management of common illness is pharmacologic. For diabetes, for example, lifestyle strategies, including weight loss, exercise, and dietary modification are part of the management of most diabetics. For some chronic conditions like osteoporosis, in addition to attempting to treat the underlying condition, important benefits can be obtained by strategies to avoid complications such as fractures. This might mean improving balance with tai chi, or using hip protectors (Garfinkel, Radomislsky, Jamal, & Ben-Israel, 2008) to decrease chance of fractures after a fall.

Management of Common Challenges One of the most common challenges in managing older adult clients is addressing risk. Often there is a conflict, for example, between the goal of retaining independence and staying in one’s own home and the risks of falling, other accidents, inadequate nutrition, substance abuse, wandering, financial abuse, and a myriad of other “bad things.” As frailty increases from the aging process and from accumulated chronic illness, it is necessary to frequently reassess the client to help determine his or her risks and his or her willingness to tolerate such risks. This becomes even more difficult when having to consider cognitive impairment or psychiatric illness, when the client’s capacity to make such decisions in an appropriately informed manner can be impaired. Under such circumstances, it may be necessary to engage consultants (i.e., medical and mental health professionals) to determine decision-making capacity. Unfortunately, financial constraints also present a common challenge to successfully navigating age- and disease-related frailty. Many interventions that can help, such as personal attendant care, transportation, and assisted housing are not normally benefits paid for by the Medicare program, and in many states they are being eliminated or restricted from Medicaid. In the case of inadequate personal or family resources, the choices an older person can make are restricted. Even with adequate finances, useful services may simply be unavailable. This is particularly a problem in rural settings, where low population density can make many senior services economically unviable. Physical dependence and cognitive impairment make an elder very vulnerable to abuse. Such abuse can be from family, paid caregivers, or strangers. Abuse can be physical, emotional, or fiduciary. It is necessary for all professionals involved in eldercare to be vigilant for signs of abuse and be knowledgeable about reporting requirements to allow episodes of abuse to be identified and addressed.

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case study: chronic disease management Mrs. G. is an 89-year-old retired sales clerk. She was widowed 12 years earlier and has one son living halfway across the world, who remains in frequent phone contact but is unable to visit very often. He cannot provide his mother with any financial support. She lives in her long-time rent-controlled apartment, and although most of her friends have died or moved, she does remain close to a couple that lives on her same floor. They have assumed some responsibility for supervision of her medical care needs, as she has become more needy, but they are not able to provide much help for personal care as their own health status is precarious. Mrs. G. has a very limited monthly pension that disqualifies her for many financial assistance programs, and she has less than $10,000 in savings. Mrs. G. has been in very good health throughout her life, but in the past few years she has developed several conditions that impair her function. She takes thyroid replacement hormone for hypothyroidism. She has osteoarthritis of her knees that makes getting out of a chair painful and makes her gait less stable. Her vision is limited by macular degeneration that makes reading and watching television difficult. Her hearing is impaired, which makes speaking with her neighbors difficult and has almost eliminated her ability to understand her son when he telephones her. Most troubling, her memory has been progressively getting worse over the past 3 years. She now leaves herself notes all over her apartment, but in spite of that, she forgets to take her medications, misses medical appointments, and recently has begun to forget meals. She has run into problems with her landlord and utilities when she forgot to pay her bills. She set off smoke alarms in her apartment when she forgot a pot cooking on the stove. Mrs. G. illustrates many common issues that confront frail elders. She would prefer to stay in her familiar apartment near her friends, but she is at risk for all kinds of troubles. She could fall and be alone on the ground for a prolonged period. Although this risk could be mitigated with a personal alarm, that service costs money, which is in short supply. She is at risk of financial abuse. Her medical condition is not bad, but she could get in trouble if she forgets to take her thyroid medicine. Her dementia is likely to be progressive. She has little financial reserve in case of emergency and few resources to either bring in resources to her home or to let her move to a more sheltered living environment. Most likely, any management strategy will entail some compromise. For example, if her stove is turned off to decrease her chances of causing a fire, then provisions to provide meals need to be made to prevent malnutrition. If a paid caregiver is obtained, then her savings will be depleted faster.

SUMMARY Enhancing the Quality of Health Care of Older Adults This chapter has given the reader an understanding of the aging population and normal aging processes. We have considered both health promotion and chronic disease management and learned from a case study. As we enter the new millennium, the nation is confronted with the enormous challenge of preparing to meet the demands of an aging society. In the face of current demographic trends, increasing health care costs, and concerns about the ­quality of health care, the financing and delivery of care for older people is a critical health care

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policy challenge. Health services research is needed to assure that older people do indeed benefit from recent advances in biomedical, clinical, and behavioral and social science research with respect to a host of aging-related issues. Since its inception, the Agency for Healthcare Research and Quality (AHRQ), has engaged in, supported, and disseminated aging-specific health services research. However, prior efforts have not been coordinated. In January 1999, AHRQ’s Director, John Eisenberg, MD, established the Task Force on Aging to make recommendations regarding the appropriate role of the agency in aging-related health services research and to recommend areas in which AHRQ should play a leadership role. Early in the task force discussions, it was decided to focus efforts on costeffective interventions that enhance functioning and health-related quality of life (HRQOL) or prevent functional decline. With this decision, the Task Force focused on gaps in knowledge that influence the ability of health care services to improve functioning and HRQOL, including costs, financing, barriers to access, organization and delivery of care, and clinical practice, as well as the interaction of these factors with individual patient characteristics and preferences of family and community. A focused research effort to determine how the health care system can most cost-effectively prevent disability, reduce functional decline, and extend active life expectancy in older people can provide decision makers with the information needed to accelerate the decline in age-specific disability rates and to allocate limited resources efficiently. The following summarizes the findings and recommendations of the Task Force and provides a rationale for developing an agenda on health services research related to aging (Improving the Health Care of Older Americans, 2001).

Delivering Health Care to an Aging Population The changing composition of the population is already putting increasing pressure on the health care system. In 2011, 77 million baby boomers will begin to turn 65, and by 2025, the number of Medicare beneficiaries is expected to reach 69.3 million, representing 20.6% of the U.S. population, with the “old old”—those older than 80 years—comprising the fastest growing segment of the population. Along with the increased numbers of older Americans, the elder population is becoming increasingly diverse; it is expected that by the year 2030, one in four people older than 65 years will be from a racial or ethnic minority. Moreover, there is also concern that changes in fertility, women’s labor force participation, and increases in the divorce rate may reduce the ability of families to take care of older family members who have disabilities, placing even greater demands on public and social programs. Because of these demographic trends, there is concern that health care costs for the older adult population will continue to grow dramatically. Per capita expenditures for older adults living in the community were more than three times those of the nonolder adults in 1996—$5,644 versus $1,865—and are projected to increase to $7,674 (in 1996 dollars) by 2005. Medicare and Medicaid LTC expenditures are also projected to double by 2005. These projected increases in taxpayer-funded costs will place great pressure on these programs to reduce costs. Consequently, there is apprehension that continuing and rising pressures to contain costs will adversely affect health care quality and access. Furthermore, the rapid changes in the health care system that have already occurred have had significant effects on the care provided to older adults. For example, previous efforts to control costs have resulted in an increase in Medicare-managed care, market instability, and

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shifting of care to ambulatory settings. There have also been significant changes in the provision and financing of LTC, with growing use of community-based LTC such as home care and assisted living communities. The role of institutions has also changed, with nursing homes being used more extensively for subacute care. Nursing homes are confronting many other changes, such as capitation and prospective payment for skilled nursing home care and quality measurement and reporting. There are many unanswered questions about the effect of these changes on quality and cost.

Providing and Financing Health Care Services for Older People Caring for older people involves clinical complexities that are difficult to coordinate at the health system level and, because of fragmented financing, are also difficult to manage financially. Aging results in both pathophysiologic and pharmacokinetic changes that must be addressed in clinical practice. Comorbidity is common, presenting a challenge to clinical management. End-of-life decision making grows in importance, focusing attention on quality of life. Family members often play an important role in providing and managing care and require education, support, and assistance in these tasks. Nevertheless, the majority of older people remain active and independent and the prevention of disability among this group of elders is critical. Effective and efficient care for older people therefore requires new models of coordination among preventive, acute, chronic, rehabilitative, and LTC services. Furthermore, financing of care to older people is fragmented and improved models of care will depend on appropriate payment models. Improving the quality of care for older people is likely to have a substantial impact on their functional status and therefore their quality of life. The underuse of effective interventions, the overuse of interventions shown to be ineffective, and the misuse of others (especially polypharmacy) have all been well documented in older adults. Many doctors neither routinely assess the functional status of their older patients nor have the knowledge and skills requisite for geriatric practice. Quality measures are needed to assess the effectiveness of interventions to improve care in these areas. Although the unique constellation of issues confronting older adults described here necessitates a targeted focus on older people, aging-related research shares common issues with research on improving care for the chronically ill and disabled, so there is a need to coordinate and collaborate research in all three of these areas.

Using Aging-Related Health Services Research to Answer Key Questions The issues addressed in general health services research (e.g., optimal treatment, access to care, and the organization of care) need to be addressed specifically with respect to the health needs of older people. Health services research is uniquely able to address the multiple factors that impact health outcomes in older adults, such as comorbidity, patient beliefs, values and preferences, social support, and multiple sites and settings of care, as well as finance and policy factors. Health services research is multidisciplinary and conducted collaboratively by clinicians, nurses, and social scientists. Distinctive features of this research are its patientcentered focus and emphasis on studies related to maximizing function and HRQOL. The

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“basic sciences” of health services research are essential to this endeavor: outcomes and effectiveness research, cost-effectiveness analysis, decision analysis, health status measurement, quality measurement and improvement, and health economics.

Filling Gaps in the Knowledge Base Enormous gaps exist in our knowledge of what works with respect to 1. The organization, financing, and delivery of health care services to achieve measurable improvement in the HRQOL of older people 2. The most cost-effective ways of achieving these improvements 3. How to implement existing knowledge of what improves function in clinical practice During the 1990s, two committees of the Institute of Medicine (IOM) recommended a concerted research effort supported by a substantial financial commitment to address these gaps. The first report, which was published in 1991, defined the complementary roles of basic biomedical research, clinical research, behavioral and social science research, health services delivery research, and research in biomedical ethics. The committee recognized both health services research and the role of AHRQ in supporting this research as an integral part of this agenda. The report from the second committee, which was chaired by present AHRQ Director John M. Eisenberg, further defined the role of health outcomes and health services research in providing the critical information needed to improve the health and function of older people. Cognizant of research advances since the publication of that report in 1996, as well as changes in the health care environment, this task force report builds on priority areas identified.

Improving Clinical Practice, Health Care Organization, and Delivery We need to understand how best to improve and integrate preventive, acute, chronic, rehabilitative, and LTC for the purpose of reducing illness burden and improving HRQOL. Overarching research issues that need to be addressed in this area include •  Developing cost-effective models of acute, preventive, chronic, rehabilitative, and LTC delivery (including informal care) that improve the health and functioning of older adults •  Assessing the outcomes and effectiveness of clinical, organizational, and social interventions that improve or delay decline of functional status; and •  Improving our ability to measure change in functioning across the broad range of functional levels for a diverse aging population and developing strategies to incorporate these functional status measures routinely in clinical practice •  Understanding how best to integrate preventive, acute, chronic, and long-term (formal and informal) care and coordinate the delivery of care across multiple sites and settings— outpatient, hospital, rehabilitation, subacute care, home care, LTC (institutional and community care), and community-based social services. Progress in this area will also require specific attention to the following components of care: •  Prevention. Preventive interventions are an integral component of promoting healthy aging, but important gaps remain in our knowledge about the efficacy, appropriateness, and cost-effectiveness of specific preventive strategies in older people.

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•  Chronic care. Eighty-five percent of people age 65 and older report at least one chronic condition; more than half report at least two; and more than a quarter report three or more. Research is needed on the outcomes and effectiveness (including cost-effectiveness) of clinical and organizational interventions that prevent morbidity from these conditions. There is a need to develop working models of collaborative care for chronic illness between doctors and patients as well as to assess the effectiveness of these models. •  Comorbidity. Much research on older adults has been disease or symptom specific. Research is now needed to understand the impact of comorbidity. Although significant progress has been made in the clinical management of common chronic diseases, much less is known about the impact of comorbidity—including both physical and mental health comorbidities—on disease management and clinical outcomes. Competing risks from multiple conditions in an individual will influence patient and physician decision-making processes. Comorbidity must also be considered in quality-measurement and qualityimprovement efforts. •  LTC. Gaps in knowledge for this population include clinical issues and organizational concerns. Information is needed on how to prevent institutionalization and on cost-effective models of community-based LTC. Because LTC creates a large burden on the family, research is needed on improving the effectiveness of informal care as well as relieving caregiver burden. Improvements are also needed in health status measures in LTC, especially measures that are adapted for the cognitively impaired, quality measures for LTC settings and HRQOL measures. •  Best practices across settings of care. We need to learn how to coordinate the delivery of care across multiple sites and settings of care, including outpatient, hospital, rehabilitation, subacute care, home care, LTC (institutional and community care), and community-based social services. Studies of the cost-effectiveness of rehabilitation, home care, and subacute care can inform the Medicare debate. •  Patient decision making. Older people face many complex choices, such as treatment and insurance, about their health care. Studies are needed to determine how to best assure that patients are informed and are active participants in the decision-making process. Studies are also needed that focus on improving doctor–patient communication and interpersonal quality of care. •  Enhancing patient safety. Unique issues need to be addressed to enhance safety for older adult patients. Their unique constellation of comorbidity, use of multiple sites and settings of care, and polypharmacy—within the context of a higher prevalence of functional impairments, including cognitive impairment—places older adults at increased risk for medical errors. This risk is compounded by the lack of awareness among many providers about general principles of geriatric management.

REFERENCES Arking, R. (1998). Biology of aging: Observations and principles (2nd ed.). Sunderland, MA: Sinauer Associates. Beck, L. H. (2000). The aging kidney. Defending a delicate balance of fluid and electrolytes. Geriatrics, 55(4), 26–8, 31. Cataldo, J. K., Prochaska, J. J., & Glantz, S. A. (2010). Cigarette smoking is a risk factor for Alzheimer’s Disease: An analysis controlling for tobacco industry affiliation. Journal of Alzheimer’s Disease: JAD, 19(2), 465–480. Chang, J. R., Koo, E., Agrón, E., Hallak, J., Clemons, T., Azar, D., . . . Chew, E. Y.; Age-Related Eye Disease Study Group. (2011). Risk factors associated with incident cataracts and cataract surgery in the Age-related Eye Disease Study (AREDS): AREDS report number 32. Ophthalmology, 118(11), 2113–2119.

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Colello, K. (2007). Where do older Americans live? Geographic distribution of the older populations. Washington, DC: Congressional Research Service. Crane, M. K., Wittink, M., & Doukas, D. J. (2005). Respecting end-of-life treatment preferences. American Family Physician, 72(7), 1263–1268. Garfinkel, D., Radomislsky, Z., Jamal, S., & Ben-Israel, J. (2008). High efficacy for hip protectors in the prevention of hip fractures among elderly people with dementia. Journal of the American Medical Directors Association, 9(5), 313–318. Hall, K. E. (2002). Aging and neural control of the GI tract. II. Neural control of the aging gut: Can an old dog learn new tricks? American Journal of Physiology. Gastrointestinal and Liver Physiology, 283(4), G827–G832. Hall, K., & Wiley, J. (1999). Age-associate changes in gastrointestinal function. In W. Hazzard, J. Blass, W. Ettinger Jr., J. Halter, & J. Ouslander (Eds.), Principles of geriatric medicine and gerontology (4th ed., pp. 835–842). New York, NY: McGraw-Hill. Improving the Health Care of Older Americans. (2001, May). A report of the AHRQ Task Force on Aging (AHRQ Publication No. 01–0030). Rockville, MD: Agency for Healthcare Research and Quality. Retrieved from http://www.ahrq.gov/research/olderam/oldam1.htm Klein, M. L., Francis, P. J., Ferris, F. L., Hamon, S. C., & Clemons, T. E. (2011). Risk assessment model for development of advanced age-related macular degeneration. Archives of Ophthalmology, 129(12), 1543–1550. Mauk, K. (2006). Gerontological nursing: Competencies for care. Sudbury, MA: Jones and Bartlett. National Osteoporosis Foundation. (2004). About osteoporosis: Fast facts. Retrieved February 1, 2012 from http://www.nof.org/sites/default/files/pdfs/PressRoomKit.pdf Penninx, B. W., Nicklas, B. J., Newman, A. B., Harris, T. B., Goodpaster, B. H., Satterfield, S., . . . Kritchevsky, S. B.; Health ABC Study. (2009). Metabolic syndrome and physical decline in older persons: Results from the Health, Aging And Body Composition Study. The Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 64(1), 96–102. Pugh, K. G., & Wei, J. Y. (2001). Clinical implications of physiological changes in the aging heart. Drugs & Aging, 18(4), 263–276. Rao, S. S., Mudipalli, R. S., Mujica, V. R., Patel, R. S., & Zimmerman, B. (2003). Effects of gender and age on esophageal biomechanical properties and sensation. American Journal of Gastroenterology, 98(8), 1688–1695. Sailer, A., Dichgans, J., & Gerloff, C. (2000). The influence of normal aging on the cortical processing of a simple motor task. Neurology, 55(7), 979–985. Sampson, E. L., Candy, B., & Jones, L. (2009). Enteral tube feeding for older people with advanced dementia. Cochrane Database of Systematic Reviews (Online), (2), CD007209. doi:10.1002/14651858.CD007209.pub2 Timiras, P. (2003). The thyroid, parathyroid, and pineal glands. In P. S. Timiras (Ed.), Physiological basis of aging and geriatrics (3rd ed., pp. 233–249). Boca Raton, FL: CRC Press. Tullmann, D., Mion, C., Fletcher, K., & Foreman, M. (2008). Nursing standard of practice protocol: Delirium: Prevention, early recognition, and treatment. Retrieved February 1, 2012 from http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001748/ U.S. National Library of Medicine. (2011). Dementia. Retrieved February 1, 2012 from http:// www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001748/ Vincent, G., & Velkoff, V. (2010). The next four decades, the older population in the United States: 2010 to 2050. Current Population Reports, 25–1138. Washington DC: U.S. Census Bureau. Wiener, J. M., & Tilly, J. (2002). Population ageing in the United States of America: Implications for public programmes. International Journal of Epidemiology, 31(4), 776–781. Yee-Melichar, D., Renwanz-Boyle, A., & Flores, C. (2011). Assisted living administration & management: Effective practices and model programs in elder care. New York, NY: Springer Publishing Company.

8 PREVENTING ELDER ABUSE AND NEGLECT Erika Falk Cristina M. Flores Prescott Cole

LEARNING OBJECTIVES On the completion of Chapter 8, the reader will be able to Describe the various definitions and types of elder abuse  Understand and recognize the signs and symptoms of elder abuse Identify the major risk factors of elder abuse Become familiar with the identification and reporting requirements related to elder abuse •  Learn about preventing elder abuse in long-term care (LTC) facilities •  Hear about specific case studies that reinforce the concepts of the chapter relative to financial elder abuse •  •  •  • 

According to the World Health Organization (2011), Maltreatment of elderly people is an important public health problem. While there is little information regarding the extent of maltreatment in elderly populations, especially in developing countries, it is estimated that 4–6% of elderly people in high-income countries have experienced some form of maltreatment at home. However, older people are often afraid to report cases of maltreatment to family, friends, or to the authorities. Although it is predicted that aging baby boomers will experience health, vitality, and longevity unknown to previous generations of elders, it is also forecasted that many will live with greater levels of disability, frailty, and sadly, vulnerability to abuse. For many years, advocates in the field of elder abuse prevention have pointed out that public awareness about elder abuse has lagged behind other types of family and interpersonal violence such as child abuse and domestic violence. Ageism ­(Butler, 1969, p. 243) “reflects a deep seated uneasiness on the part of the

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young and middle-aged—a personal revulsion to and distaste for growing old, disease, and disability; and fear of powerlessness, ‘uselessness’ and death.” Ageism is frequently cited as one of many potential reasons for the relative lack of recognition of elder abuse. There are hopeful signs that interest in identifying and treating elder abuse and its traumatic aftermath is increasing among health care practitioners, clinicians, researchers, law enforcement, and policy makers. The purpose of this chapter is to provide an overview of the nature and effects of abuse in later life. This is accomplished through the dissemination of relevant information on elder abuse.

OVERVIEW OF ELDER ABUSE Definition Federal definitions of elder abuse first appeared in the Amendments to the Older Americans Act (OAA). Because each state defines elder abuse according to its unique statutes and regulations, definitions do vary from state to state. Researchers also use varying definitions to describe and study the problem. Domestic elder abuse usually refers to any of the following types of mistreatment that are committed by someone with whom the elder has a special relationship (e.g., a spouse, sibling, or caregiver). Institutional abuse commonly refers to any of the following types of mistreatment occurring in residential facilities (such as a nursing home, assisted living facility, etc.) and is usually perpetrated by someone with a legal or contractual obligation to provide some element of care or protection.

Types of Elder Abuse Elder abuse can affect people of all ethnic backgrounds and social status and can affect both men and women. Table 8.1 illustrates types of abuse that are commonly accepted as the major categories of elder abuse, including descriptions and ­examples. Although there are distinct types of abuse defined, it is not uncommon for an older adult to experience more than one type of mistreatment at the same or different times. For example, an elder who is not going to the doctor or taking appropriate medications may be having those medications stolen and be prevented from seeking care.

Recognizing Signs of Elder Abuse Possible Physical Abuse Indicators The following are clues for recognizing signs of physical elder abuse (California Advocates for Nursing Home Reform [CANHR], 2013). It is not intended to be exhaustive: •  Unexplained weight loss, malnutrition, and/or dehydration •  Physical injury: Areas painful on touching, fractures or broken bones

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TABLE 8.1  Types of Elder Abuse Type

Description

Examples

Physical abuse

Use of physical force against an older adult that may result in bodily injury, physical pain, or impairment.

Striking (with or without an object), hitting, beating, pushing, punching, shoving, shaking, slapping, kicking, pinching, burning, inappropriate use of drugs and/ or physical restraints, force-feeding, and physical punishment of any kind.

Sexual abuse

Nonconsensual, sexual contact of any kind with an older adult. Sexual contact with any person incapable of giving consent also is considered sexual abuse.

Unwanted touching and all types of sexual assault or battery, such as rape, sodomy, coerced nudity, and sexually explicit photographing.

Psychological abuse

Infliction of anguish, pain, or distress on an older adult through verbal or nonverbal acts.

Verbal assaults, insults, threats, intimidation, and humiliation; treating an older person like an infant; isolating an older adult from his or her family, friends, or regular activities; giving an older person the “silent treatment”; and enforced social isolation.

Financial exploitation

Illegal or improper use of an older adult’s funds, property, or assets.

Cashing an older adult’s checks without authorization or permission; forging an older person’s signature; misusing or stealing an older person’s money or possessions; coercing or deceiving an older person into signing any document (e.g., contracts or will); and the improper use of conservatorship, guardianship, or power of attorney.

Neglect

Refusal or failure to fulfill any part of a person’s obligation or duties to an older adult. May also include failure of a person who has fiduciary responsibilities to provide care for an elder (e.g., pay for necessary home care services) or the failure on the part of an in-home service provider to provide necessary care.

Refusing or failing to provide an older adult with such necessities as food, water, clothing, shelter, personal hygiene, medicine, comfort, personal safety, and other essentials.

Abandonment

Desertion of an older adult by an individual who has assumed responsibility for providing care for an elder, or by a person with physical custody of an elder.

Desertion at a hospital, nursing facility, or shopping center with no identifying information.

Source: National Center on Elder Abuse (2011).

•  Bruises and skin damage: – Bruises on the inner arm or thigh – Bruises with shape similar to an object or thumb/fingerprints (oval markings from fingers) – The presence of old and new bruises in the same place as from repeated injury or injuries in different stages of healing – Clustered marks as from repeated striking; bilaterally on soft parts of body, not over bony parts (knee and elbows) – Scratches, cuts, pinch marks, choke marks, burns, welts, gag marks, sprains, punctures, bedsores, or fractures

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Behavioral Indicators The following are possible behavioral indicators for recognizing signs of elder abuse (CANHR, 2013). •  Agitation •  Anger •  Defensiveness •  Denial •  Nonresponsiveness •  Hesitation to talk openly •  Anxiety •  Implausible stories •  Confusion or disorientation •  Fear •  Withdrawal •  Depression •  Helplessness

Possible Relationship Abuse Indicators The following are clues for recognizing signs of relationship elder abuse (CANHR, 2013). •  The elder may not be given the opportunity to speak for himself or herself •  Obvious absence of assistance, attitudes of indifference, or anger toward the elder by family member or caregiver •  Social isolation or restriction of activity of the elder •  Conflicting accounts of incidents by the family or caregivers •  Substance abuse by individual responsible for the care of the elder

Major Risk Factors Elder abuse is extremely complex. Generally a combination of psychological, social, and economic factors, along with the mental and physical conditions of the victim and the perpetrator, contribute to the occurrence of elder maltreatment. Although the factors listed below cannot explain all types of elder maltreatment, the following are some of the risk factors researchers think are related to elder abuse.

Age According to the National Incidence Study on Elder Abuse (National Center on Elder Abuse [NCEA], 1998), the oldest elders (those older than 80 years of age), who made up about 19% of the U.S. older adult population at the time of the study, were far more likely to be the victims of all categories of abuse, with the exception of abandonment (NCEA, 1998). They accounted for over half the reports of neglect (51.8%), and 48.0% of financial/material abuse, 43.7% of physical abuse, and 41.3% of emotional/psychological abuse. In all types of abuse and neglect, older adult victims in the 60 to 64 and 65 to 69 age groups accounted for the smallest percentages. Thus, age is one of the strongest predictors of vulnerability to abuse.

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Gender The NCEA found that female elders were more likely to be the victims of all categories of abuse, except for abandonment (NCEA, 1998). Although making up about 58% of the total national older adult population in 1996, women were the victims in 76.3% of emotional/psychological abuse, 71.4% of physical abuse, 63% of financial/ material exploitation, and 60% of neglect, which was the most frequent type of maltreatment. A majority of the victims of abandonment were men (62.2%).

Health and Functional Impairment The term functional impairment refers to any reduction in the person’s ability to perform essential activities of everyday life. A person’s functional abilities usually are assessed according to his or her ability to perform activities of daily living (ADLs) such as dressing, bathing, feeding, ambulating, and toileting, as well as higher level instrumental activities of daily living (IADLs) such as cooking, shopping, bill paying, and using the telephone. These activities are necessary to maintain health independence and quality in an older adult’s life (University of Nebraska Medical Center [UNMC], 2011). The National Incidence Study has found that elders who are unable to care for themselves are more likely to suffer from abuse (NCEA, 1998). Approximately one half (47.9%) of the substantiated incidents of elder abuse involved older adults who are not able to care for themselves, 28.7% who are minimally capable, and 22.9% who are able to care for themselves.

Cognitive Impairment/Dementia Persons with cognitive impairment are at risk of abuse because they may be unaware of the abuse or unable to defend themselves (U.S. Government Accountability Office [GAO], 2011). There are many reasons that an older person may have cognitive impairment, including potentially reversible conditions such as delirium or adverse reactions to medication, and nonreversible conditions such as a progressive dementia. The term “dementia” describes a progressive, degenerative decline in cognitive function that gradually destroys memory as well as the ability to learn, reason, make judgments, communicate, and carry out daily activities. Although it often includes memory loss, memory loss by itself does not mean that a person has dementia. There are many different causes of dementia, but the most common cause in persons 65 and older is Alzheimer’s disease, which accounts for 47% of all dementias (University of California San Francisco [UCSF], 2010). In the National Incidence Study (NCEA, 1998), approximately 6 out of 10 substantiated elder abuse victims have experienced some degree of confusion (31.6% have been very confused or disoriented and 27.9% have been confused periodically). More recent research has indicated that people with dementia are at greater risk of elder abuse than those without (Cooney, Howard, & Lawlor, 2006). Approximately, 5.4 million Americans older than 65 years have Alzheimer’s-type dementia and, of those, 66% or 3.4 million are women. One of eight Americans has Alzheimer’s disease, and close to half of all of those older than 85 years, the fastest growing segment of the U.S. population, has Alzheimer’s disease (Alzheimer’s Association, 2011). A recent study by Wiglesworth et  al. (2010) has found that 47% of participants with dementia had been mistreated by their caregivers.

Mental Health Conditions According to the NCEA (1998), about 44% of all substantiated abused elders were gauged to be depressed at some level, with about 6% of them severely depressed.

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One study (Dyer, Pavlik, Murphy, & Hyman, 2000) found that victims of elder abuse who had been referred to a Houston-area hospital had higher levels of depression than older patients referred for other reasons (as cited in GAO, 2011). Another study of older adults in Pennsylvania (Beach, Schulz, Castle, & Rosen, 2010) found that risk of clinical depression was a consistent predictor of financial and psychological abuse. Low self-esteem and substance abuse also were cited as possible risk factors. The loss of a spouse or other family member has been viewed as a factor that may increase elders’ need for care and may result in neglect if there is not an adequate response (Nerenberg, 2008).

Social Support, Resources, and Living Conditions Social support is a key factor in the prevention of, and recovery from, elder abuse (Nerenberg, 2008). Research suggests that those who lack ongoing and caring connections are at greater risk of abuse. A recent study by Acierno et al. (2010) has indicated that low social support among those over the age of 60 is a predictor of most forms of abuse and that high social support can help prevent abuse. The study has suggested that addressing low social support might have significant public health implications. Those with fewer financial resources may be more dependent on others for their care, have fewer options, and be at higher risk for abuse and neglect. Residents of nursing homes are at high risk for abuse due to frailty and greater cognitive and physical impairments.

Effects of Abuse Research has indicated that elder abuse affects victims’ health and longevity. For example, one study (Fisher & Reagan, 2006) found that older women in the Midwest who were psychologically abused once, repeatedly, or in conjunction with other forms of abuse, also reported higher rates of bone or joint problems, digestive problems, depression or anxiety, chronic pain, and high blood pressure or heart problems than older women who had not been abused. A 2010 study by Mouton, Rodabough, Rovi, Brzyski, and Katerndahl found a relationship between exposure to abuse and poorer psychological health. They also found that exposure to verbal abuse, even without physical abuse, had a strong effect on psychological health. In a qualitative study of 64 women aged 50 and older who were interviewed about their experiences of violence and abuse, several of the respondents spoke of ongoing health and mental health problems (Hightower, Smith, & Hightower, 2006). A longitudinal study (Lachs, Williams, O’Brien, Pillemer, & Charlson, 1998) comparing abused and nonabused community-dwelling older adults in Connecticut, found that only 9% of those abused at some point between 1982 and 1992 were still alive in 1995, compared to 40% of those who had not been investigated for abuse during that same period. Although underreported, the annual financial loss by victims of financial ­elder abuse is estimated to be at least $2.6 billion (MetLife Mature Market Institute, 2009). Unlike younger victims of financial crimes, older victims may not have the ability to recoup losses over time and restitution, if any is forthcoming, may not arrive before the elder victim has died (MetLife Mature Market Institute, 2009). Loss of finances can result in restricted choices with regard to care and services and may result in loss of independence. Deem (as cited in MetLife Mature Market Institute, 2009) indicates that financial losses can result in shame, guilt, or general mistrust, escalating into paranoia or depression.

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IDENTIFICATION AND REPORTING Elder abuse often is called a hidden crime. Victims may be reluctant to report because of shame, particularly as family members are overwhelmingly the perpetrators. Victims may also be unable to report abuse because they are isolated or cognitively and/or functionally impaired (NCEA, 2011). Due to these barriers, it is important that any person who suspects that an elder is being abused or neglected attempts to get help by contacting someone who can respond to the alleged abuse (e.g., physician, Adult Protective Services [APS], law enforcement). Many states have laws that designate mandated reporters of elder abuse. There is wide variability across the United States as to who is a mandated reporter, with some states requiring everyone to report suspected abuse and other states specifying some combination of physicians, home health care providers, mental health service providers, law enforcement officers, and financial institutions (GAO, 2011).

The Role of APS According to the National Adult Protective Services Association (NAPSA, 2004), APS are those services provided to older people and people with disabilities who are in danger of being mistreated or neglected, are unable to protect themselves, and have no one to assist them. The guiding value of APS is that every intervention should balance the duty to protect vulnerable adults and their right to selfdetermination. Interventions provided by APS include, but are not limited to, the following: receiving reports of adult abuse, exploitation, or neglect; investigating these reports; and case planning, monitoring, and evaluation. In addition to casework services, APS may provide or arrange for the provision of medical, social, economic, legal, housing, law enforcement, or other protective, emergency, or supportive services (NAPSA, 2004). Eligibility criteria for receiving APS services are determined by state law and therefore vary from state to state. Eligibility criteria may individually, or in some combination, include age of the victim, type of alleged elder abuse, victim’s vulnerability or dependence, and the victim’s relationship with the perpetrator. For example, in California, an individual must be either 65 or older, whereas in Florida, an individual must be at least 60 and unable to care for or protect himself or herself; and the alleged perpetrator must be a caregiver, family member, or household member (GAO, 2011). One of the aspects that make APS work complex is that adults have the right to refuse services and are presumed to have decision-making capacity unless adjudicated otherwise in court (NAPSA, 2004).

The Role of the LTC Ombudsman Under the federal OAA, every state is required to have an Ombudsman Program that addresses complaints and advocates for improvements in the LTC system. The Ombudsman Program is administered by the Administration on Aging (AoA). According to the National Long-Term Care Ombudsman Resource Center (NORC, n.d.), the network has 8,700 volunteers certified to handle complaints and at least 1,300 paid staff. The Long-Term Care Ombudsman advocates for residents of nursing homes, board-and-care homes, and assisted living facilities. ­Ombudsmen ­provide

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information about how to find a facility and what to do to get quality care. They are trained to resolve problems, but the consent of a resident is required to share concerns beyond the confidential resident–ombudsman relationship. The types of complaints that Ombudsmen handle include violation of residents’ rights or dignity; physical, verbal, or mental abuse; deprivation of services necessary to maintain residents’ physical and mental health, or unreasonable confinement; poor quality of care, including inadequate personal hygiene and slow response to requests for assistance; improper transfer or discharge of a patient; inappropriate use of chemical or physical restraints; or, any resident concern about quality of care or quality of life (NORC, n.d.).

BEST PRACTICE: PREVENTING ELDER ABUSE IN LTC The CANHR (2013) offers the following best practices to assist in improving the quality of care and life for older adults living in LTC facilities (i.e., skilled nursing facilities [SNFs], residential care communities, assisted living). This information was produced through a donation from Roberta Dangcil in honor and memory of her mother, Melba L. McCord.

Support Loved One’s Transition to the Care Facility The decision to consider placement in an LTC facility, such as a residential care facility for older adults (sometimes called assisted living) or a nursing home, is a complex and emotionally demanding process. Preplanning and the involvement of the person entering a care facility will help ease the transition. Unfortunately, there is limited or no planning for many placement decisions. A decision for out-of-home placement is often made in response to a crisis such as a broken hip, heart attack, or stroke. Even in the best of circumstances, there will be strong feelings of loss and abandonment by the person being placed and guilt by the person assuming responsibility for the placement. Acknowledging these feelings is one way to cope with the transition. Visiting frequently can also be helpful. During some of these visits, if possible, try to meet other residents, talk to staff, and explore other parts of the facility in an effort to familiarize yourself and your loved one to his or her new environment. There are some other very practical things that can be done during the ­transition: •  Make sure that he or she is given a comprehensive assessment. If he or she is being discharged from the hospital, make sure he or she is checked for skin breakdown and possible overmedication. •  Become involved in the care-planning process right away. You know your loved one the best. Assist the facility in getting to know him or her and work with the staff in developing a transitional care plan and then a more comprehensive one. •  Monitor the elder’s needs, changes, and care during the transition. He or she might experience depression, which will affect appetite, sleeping patterns, motivation, and ability to socialize and to participate in therapy or activities. A new environment, a roommate, or different medications can also affect a person. Be attentive to changes and communicate them to the appropriate staff.

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Make Your Visits Count There is more to making your visits count than visiting frequently. Visit at different times and shifts, and on different days of the week. It is also important to visit at meal times, when activities are planned, and definitely at night and on the weekends. These strategies are important to get a full picture of the patterns of care in the facility and the performance and attitude of care staff at different shifts. The unpredictability of your visits can also keep the facility on its toes. Visits can easily become routine or something that is done out of duty or even dreaded. In addition to the tips above, make a plan for weekly visits. This can bring new purpose, freshness, and sometimes adventure to the visits. In making a plan, here are some considerations: •  What days and times will I visit this week? What do I want to discover this week? •  Who are the residents or staff to meet during this week? •  What section(s) of the facility are we going to visit? •  What can I plan to talk about or do? Is there something that I can bring to talk about or do together? Is there someone I can bring along for a visit? •  Anticipate special occasions and plan something special, for example, birthdays, anniversaries, and so forth. •  Plan occasional outings, if possible. •  Coordinate visits and contacts from family, friends, and volunteers.

Get to Know the Staff and Build Relationships As part of your plan for visiting, you want to get to know all key staff on a firstname basis on all shifts that care for your loved one. One of the hardest things can be turning over the direct, caregiving responsibilities to someone else, especially if you have been doing it at home for a number of years. Your new role is to provide emotional support to your loved one, to help the staff know your loved one on a personal basis, and to be an advocate. Generally, staff resent being told how to do their jobs but appreciate knowing more about what your loved one’s likes and dislikes are and what might have worked for you. Genuine praise can go a long way in building good relationships. When you observe a staff member providing good care or handling a difficult situation well, tell the person that you appreciate the quality service. And let the supervisors know about good staff performance. Develop good working relationships with key administrative and supervisory staff. The director of nursing and charge nurses for the wing will be particularly valuable resources in understanding, questioning, and promoting quality care in skilled nursing homes. The administrator or supervisors in residential care facilities or assisted living facilities are also key persons. Know the facility’s policy and procedures on who you should go to with concerns or problems. Bring your concerns forward as matters come up that need to be resolved. Do not wait until you have a lot of problems or major issues. Communicate frequently and openly. Again, offer positive feedback when concerns have been addressed or when positive things are happening in the facility.

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Be an Active Participant in All Care Plan Meetings The plan of care describes the strategies that the facility and staff will use to enhance, restore, or maintain a person’s optimal physical, mental, and psychosocial wellbeing. Care plans are based on assessments and need to be completed before or shortly after a person is admitted as a resident in an LTC facility. Care plans are reviewed and updated whenever there are significant changes in a resident’s physical, medical, mental, behavioral, and/or social conditions. Skilled nursing homes have a quarterly review cycle, whereas residential care facilities for older adults are required to review and update the care plan only annually or when there is a significant change in the resident’s care needs. The care plan meeting provides an opportunity to evaluate whether the plan is working and to make necessary changes to better meet the individualized needs of the resident. Some tips to make the care plan work for your loved one are: •  Personalize the needs and interests of your loved one. •  Make sure that all key players will attend the care planning meeting, including direct-care staff. •  Bring concerns and suggestions. •  Insist on concrete, measurable plans and a timetable. •  Follow-up the meeting with a written understanding of what is going to be done, by whom, and when.

Monitor Care Use the care plan to monitor the overall care of your loved one. Hold the facility accountable for carrying out the plan in good faith. As indicated above, an effective care plan will be concrete, with many areas to observe and monitor. It will give you many practical things to look for in the overall care and in specific care approaches for your loved one. In monitoring care, consider using the following approaches depending on the circumstances: •  Keep notes. Write down important facts by answering who, what, when, where, and how questions. Describe what happened. Be as specific as possible. Use quotes if a person made an important statement. •  Check records. With the resident’s permission, or if you are the legal representative or health care agent, you have the right to access and to obtain copies of the medical records, care plan, nursing, and certified nurses aides progress notes and resident’s file. Records can be important sources to see whether the care that is planned for is actually being provided. Make sure that the records are an accurate reflection of what is actually happening and that the records are not being obviously changed or falsified. •  Obtain copies of relevant files whenever there is poor, neglectful, or abusive care. •  Maintain close contact with the doctor. Get a second opinion or obtain assistance to interpret medical or resident records. Check on the medications that have been prescribed and monitor your loved one’s reactions. •  Make a physical inspection of your loved one. A nonintrusive way to do this is to give a back rub to your family member. It is nice for the family member and a good opportunity to inspect for signs of redness or sores. If necessary, take

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­ ictures and make complaints to the Ombudsman Program and to the approprip ate licensing agency.

Act as an Advocate for Loved Ones At the heart of effective advocacy is knowledge of the rights of residents and your rights as the representative of the resident. These basic rights should be explained at the time of admission and should be posted in the facility. One of the most important rights is the right to express concerns, suggestions, or to make complaints and to do so without fear of retaliation. In exercising these rights, strive to maintain a calm manner, act with assertiveness, be persistent, ask for honest communication, and insist on accountability. Listed below are some additional tips to make your advocacy more effective: •  Follow-up on all concerns identified in monitoring care. •  Ask for meetings with key people to resolve problems. Plan carefully for the meeting by clearly identifying the results that you want. It is important to summarize your understanding of the agreed outcomes, persons responsible, and timetables before the meeting ends. Whenever possible, put this summary in writing and ask that it become part of the resident’s file. •  Contact the Ombudsman Program to assist you in exercising your rights. The ombudsman is the resident’s advocate. A poster with the telephone number for the local Ombudsman Program must be prominently displayed in residential care facilities for older adults and in SNFs. •  File complaints with the appropriate licensing agency. You have the right to confidentiality in making complaints to both the Ombudsman Program and the licensing agencies.

Prevent Abuse In July 2001, the Congressional Special Investigations Division found that 35% of nursing homes in the United States were cited for more than 10,000 instances of abuse over a 2-year period. The truth is that the percentage is probably higher because abuse often goes unreported. To prevent abuse, remain active in the care of your loved one by following the tips already presented for visiting, building relationships with staff, actively participating in the care planning process, monitoring care, and acting as an effective advocate. It is also critical to learn signs of elder or dependent-adult abuse and know how to report suspected abuse promptly. •  Some of the signs of physical abuse in care facilities are unexplained bruises, scratches, or marks on face, inner arm, or thigh, or on breast or genital areas. Check for marks caused by use of restraints, for example, belts. Look for signs of overmedication like drowsiness, dry and cracked lips, drooling, and vacant stares. •  Indicators of neglectful behavior are poor personal hygiene, urine smell, residents being left unattended for long periods in bed or on the toilet, unexplained weight loss, malnutrition or dehydration, frequent falling, and signs of skin breakdown and bedsores. •  Financial abuse can occur with lost or stolen personal belongings. There can also be fraudulent billing practices.

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•  If you suspect abuse, do not wait and try to resolve this alone. Seek help. Contact the Ombudsman Program, make a complaint to licensing, refer any physical or sexual abuse to local law enforcement, and seek the advice of an attorney through CANHR’s lawyer referral service.

Become Active in Quality-of-Care Issues You are not alone. There are hundreds of thousands of people in nursing homes and residential care facilities in California and throughout the United States. They share many of your concerns. Do not act alone. Support and power can be gained by acting collectively. Group action can offer protection from the fears of retaliation and produce change that can positively affect the quality of care and life for all residents. •  Encourage your loved one to become an active member of a resident council. A nursing home is required to have a resident council and residential care facilities must support the development of a resident council if initiated by residents. •  Family members and concerned friends can either join or form a family council. You can obtain helpful organizing materials, including a video, from CANHR. •  Contact your state and federal elected officials about your concerns of poor care and the need for increased funding for community-based alternatives. •  Support legislation that will enhance resident rights and improve quality of care.

case STUDIES: UNDUE INFLUENCE AND ELDER FINANCIAL ABUSE One of the fastest growing areas for financial predators who target older adults is the business of “prequalifying” individuals for government benefits programs such as Medicaid or the Veterans Affairs (VA) Aid and Assistance Benefit. Confusion about what legitimate services are available, combined with the fear of ending up broke in a nursing home, is what makes seniors vulnerable to these unscrupulous “advocates.” These so-called advocates charge unconscionable fees for unnecessary or unsuitable services. These services often turn out to be nothing more than simply filling out a government benefits application form or supplying the senior with a handful of state statutory forms. What the services are really about is creating an opportunity for the predators to help themselves to the senior’s wealth. These predators manipulate seniors into believing they possess special skills and knowledge and know the ins and outs of “getting around the system.” These predators often charge exorbitant fees that are out of proportion to the worth of their advice, as well as making substantial commission by selling unnecessary or wholly unsuitable financial investments. Often, the advice they give to seniors damages the seniors’ estates or preexisting estate plans and end up thwarting their testamentary wishes. Sometimes the damage to their estates is so extensive that the seniors, or their heirs, end up needing to seek the aid of a civil litigator to sue the predators for the harm they have caused. This may also result in seeking advisement from district attorneys. The following are a few examples of actual situations in which seniors were taken advantage of by predators who recognized their vulnerabilities.

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Case Study 1: Senior Government Benefits Scam Background: The Department of Veteran Affairs has a special benefit that it pays to low-wealth veterans, their spouses, or surviving spouses who need financial help with in-home care, an assisted living facility, or a nursing home. This benefit is known as the VA Aid and Attendance Benefit. It is a benefit available to those with limited or no income who served in the military during the time of war. This is not an entitlement, it is a needs-based benefit, and the senior is only eligible if he or she has minimum savings. Seniors with excess assets are ineligible for the benefit. The Scam: Financial predators seek out veterans who cannot qualify because they have too many assets. The predators tell these seniors that they deserve and are entitled to the benefit, when they actually are not. The predators then tantalize the seniors with promises that they can receive thousands of dollars to help pay for in-home health care or to help pay for a stay at an assisted living facility. Seniors who express interest are then encouraged to follow the predators’ advice and buy into their estate-planning method. The method invariably costs thousands of dollars and, in some instances, irreparably damage their estates. Civil lawsuit filed against a government benefits service group: These are some facts that were presented in a civil lawsuit against two insurance agents and an attorney who were working as a team to qualify senior veterans for the VA Aid and Attendance Benefit. In this particular case, the agents and attorney worked together to convince a 93-year-old senior vet and his 89-year-old wife that they could receive the VA benefit if they followed the team’s advice. The seniors ended up having their estate plan ruined, their family in crisis, and having to seek the services of a civil litigator. This all began when the seniors heard about a volunteer organization that helped a widowed friend who was living in an assisted living facility. The friend told them about the wonderful VA benefit and how some volunteers had helped her to get it. The senior vet and his wife contacted someone they thought was a volunteer and invited him to come into their home to help them sort through paperwork and to learn more about applying for the special VA benefit. The seniors were unaware that the man they invited into their home was an insurance agent who was in the business of selling insurance products and his true interest was to attempt to sell them an annuity. In the home, after looking through the seniors’ paperwork and learning about their income and assets, the “volunteer” recommended that they put their assets into an irrevocable trust so that, for the purpose of qualifying for the benefit, they would not have countable income or available assets. He then introduced the seniors to an attorney who allegedly was accredited to work on veteran benefit issues and “specialized” in estate planning. The attorney said he would help the senior vet and his wife for $2,000, which would be his fee for forming an irrevocable trust. Even though the seniors already had in place a revocable trust that contained very explicit instruction about which of their children, grandchildren, and great-grandchildren would receive their inheritance, they took the lawyer’s advice. The lawyer’s advice dramatically changed their estate plan. The irrevocable trust developed by the attorney did not follow the explicit instruction detailing the seniors’ distribution wishes as set forth in their previous trust. The lawyer told the seniors that the revocable trust was too complicated and that was why it was better to have a trust that divided their assets equally among four of their six children. Some of the problems with changing from a revocable trust to an irrevocable trust (facts that the lawyer neglected to tell the seniors) was that the designated beneficiaries under the irrevocable trust were under no legal obligation to follow their wishes, and if the seniors ever changed their minds they would need the consent

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of all four beneficiaries to change or undo the trust. As this was a second marriage for both of the seniors and there were some long-standing unresolved negative feelings (the husband had two children and wife came to the marriage with four), this change in estate plan led to very serious interfamilial conflicts and the wife ended up going to the emergency room with stress attacks. Another problem about the irrevocable trust, which the attorney also neglected to tell the seniors about, was the possible adverse tax consequences. In the several meetings the seniors had with the men they thought were there to help and give guidance, there was never discussions about the possibility of what would happen if the seniors needed ready access to their income and assets in the event of a major change in their conditions, such as a decline in health necessitating significant medical services or a move to a resident care facility or SNF. The volunteers never broached the subject. After the attorney finished the irrevocable trust, one of the insurance agents began pressing the seniors to use the money in the irrevocable trust to purchase an annuity. The seniors refused to purchase the annuity. After the refusal, the insurance agent sent the seniors a bill for $10,000 for his “planning services.” The insurance agent billed his time at $250/hour. The agent’s itemized bill included 13 hours for “in-person meetings and consultation,” 14 hours for e-mails, 6 hours for “financial plan research and development,” and 9.5 hours for “phone calls and conference calls.” After receiving and paying the bill, the seniors received a letter from the VA stating that the lawyer was not an accredited individual and therefore could not represent them in presenting the claim. When the seniors’ application was finally approved, it was for a benefit amount that was substantially smaller than what the group had promised they would get. The seniors ended up having to pay another estate-planning attorney several thousand dollars to undo the irrevocable trust. The seniors later sought and hired a litigation law firm to sue the group. After filing a civil complaint this case was settled for an undisclosed amount.

Case Study 2: Case Misuse of a Durable Power of Attorney for Property The operative fact in a civil lawsuit for financial abuse through the misuse of a Durable Power of Attorney for Property (DPA) was as follows: An 88-year-old woman who had never married and lived alone in her home was found by a neighbor on the floor of her cluttered and dirty kitchen, where she apparently had been for at least 2 days. After being taken to the ER she was later released to an LTC nursing home. The woman’s sister, who lived out of state, contacted a great-nephew who lived in the vicinity of the nursing home and implored him to get the DPA to pay bills, do the banking, and take care of her sister’s home. The nephew agreed and used a nonattorney to prepare a DPA. With the DPA, the nephew not only paid his great-aunt’s nursing home bills but also started buying things for himself. He purchased a GT Mustang for $31,500, spent $1,551 for two televisions, used $1,400 for his own mortgage, and used his aunt’s money for a $15,000 payment toward building a garage on his wife’s parent’s property. Because the great-nephew was engaged in paying for his aunt’s stay in the nursing home, he found out about the LTC Medicaid program. He went to an estate-planning attorney and learned that his aunt, who had a modest-sized estate, could become “eligible” by transferring assets out of her name. With the help of the attorney, the nephew embarked on a scheme to have all of his aunt’s property transferred to himself and his wife. With a promise to be paid $6,000 by the nephew, the attorney drafted documents that divested the woman of all her assets and made her great-nephew and his wife her sole beneficiaries. The attorney

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designed a Medicaid-qualification plan for the aunt without ever meeting or communicating with her in any way before drawing up this plan. The first and only time the attorney would meet or talk with the aunt was when he was to go over to her nursing home room to execute the documents. Those documents would divest her of all her assets and leave her estate to the nephew and his wife. On the day the attorney went to “visit” the aunt, he first met with the nephew at a café across the street from the nursing home. The attorney’s agreement with the nephew was that he was to be paid $500 for drawing up the documents and the balance of the $6,000 if he would go into the nursing home and return with the aunt’s signature on those documents. It was understood that if the aunt refused to sign the documents then the attorney would only receive a payment of $500, and no more, for his time. The attorney went into the nursing home, met the aunt, and succeeded in his mission. When he returned to the café he delivered the signed documents to the nephew. Once the nephew had the documents, he cashed and kept the aunt’s $200,000 saving bond and put his name onto his aunt’s home’s deed. The nephew and his wife began writing checks to themselves. Over the next 17 days they wrote checks totaling $168,000. The aunt died on the 17th day after she signed the documents. After her death, the check writing stopped. Further, after the death there was a will contest and the would-be heirs sued the great-nephew and his wife under the state’s Probate Code on grounds that the aunt had lacked mental capacity and that the great-nephew had used undue influence to get her to sign those documents. At the trial the would-be heirs prevailed. The court’s decision was that the power of attorney was invalid and therefore the purported gift deed and will was denied. The great-nephew and his wife were ordered to transfer away all their claimed title and interest in the aunt’s property and to pay damages in the amount of more than three quarters of a million dollars.

Case Study 3: Unsuccessful Prosecution of a Case for Theft by Undue Influence This particular case demonstrates the importance of having state laws in place that explicitly define what kind of conduct constitutes elder financial abuse. An appellate court reversed the verdict of a defendant who was found guilty by a jury for theft through the use of undue influence. The conviction was reversed because the state had no legal theory for “criminal” undue influence. Although the prosecution presented facts that led the jury to believe that the defendant used undue influence on an elder, the state did not have a criminal statute that made using undue influence a criminal offense. Not having a statute to prosecute under is a legal error. Regardless of what one would think about the conduct of another, that conduct is not criminal conduct unless the government passes a law making that conduct illegal. An individual cannot be prosecuted unless he or she has broken a criminal law (in its ruling the appellate court did point out that the prosecution could have pursued, and the facts may have proved, other legal theories that would have supported a valid conviction, such as theft through duress or coercion, but they failed to do so). Facts presented at trial: A cognitively impaired elder developed a friendship with an individual (defendant) who helped the elder through anxiety attacks, spent time in the elder’s home and traveled with the elder at the elder’s expense. A psychologist testified that the elder suffered from a cognitive disorder and was neurocognitively impaired, exhibited a strong desire to please, was extremely vulnerable to undue influence, and the elder’s impairment was obvious to lay people. The prosecutors presented evidence of a pattern in which large sums of money were being given to

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the defendant by an elder who prosecutors contended had a weakened state of mind and was subject to undue influence. The defendant frequently asked the elder for money and the elder wrote checks or deposited money into the defendant’s account. The defendant often told the elder not to discuss these payments with anyone and when, on occasion, the elder refused to write checks, the defendant would write out the checks himself, follow the elder around the house, and ask him to sign the checks until he did so. The defendant was shown to have had great influence over the elder. For example, once when the elder purchased a $100,000 annuity, the defendant called the bank, identified himself as the elder’s legal advisor, and directed cancellation of the annuity. The bank complied and returned the elder’s money. Later, the elder purchased another annuity and designated his niece as the beneficiary. When the defendant learned of this, he convinced the elder to cancel the annuity. The defendant again called the bank and even wrote a letter for the elder to sign to effect the cancellation. On another occasion, the defendant convinced the elder to withdraw and split with him $119,558 from another annuity. Although the defendant had been telling the elder that he had been filing his taxes for him, no taxes had been filed for a period of several years, resulting in state and federal government liens and fines. The defendant asked the elder to take out a $350,000 mortgage on his home and to give him half of it, which the elder did. The elder gave the defendant $30,000 to invest in real estate but the defendant kept the money and told the elder he had used the money to pay bills, which he did not. When the elder’s niece visited the elder, he told her that he was worried about all the checks he had written to the defendant and was afraid the defendant was stealing from him. The niece suspected that the elder was suffering from diabetes and noticed that some of his expensive furniture was missing. The niece contacted APS, who in turn contacted the police. When the police, along with an APS case worker, interviewed the elder they noticed that he talked slowly, seemed confused and fearful, and became agitated when asked about his financial situation. He also displayed motor and verbal tics and deflected questions by saying, “You better ask [defendant].” The elder told the investigators that he did not know how much money he had or why he refinanced his house. Following the jury verdict, the defendant was sentenced to 5 years in prison and ordered to pay $661,400 in victim restitution. This verdict was overturned because state prosecutors cannot put an individual on trial unless there is a specific state statue making a certain type of conduct a criminal offense. In this case, the state had no criminal undue influence statute; therefore no one could be guilty of committing theft through undue influence. The way to rectify this would be for the state to adopt a statute making undue influence a criminal office. What would be of paramount importance in any such attempt to create a law making undue influence criminal conduct would be having that statute contain a comprehensible definition of what constitutes undue influence. This, no doubt, would give rise to long and exhaustive debates, which one hopes would conclude with a statute that would give prosecutors a powerful tool to use against those who prey on the vulnerabilities of elder citizens.

SUMMARY There is a demographic imperative for all clinical practitioners to better understand the needs of older adults. Those most at risk of abuse in later life are the “oldest old,” socially isolated elders, and persons with dementia and concomitant ­behavioral problems. Understanding the warning signs of abuse and resources for reporting and intervening in abuse is critical to preventing, stopping, and ­ameliorating the

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impact of abuse. Effective counseling for this older adult population takes into account the unique needs of older adults, incorporates effective strategies from domestic violence treatment, and builds an awareness of resources specific to older adults.

REFERENCES Acierno, R., Hernandez, M. A., Amstadter, A. B., Resnick, H. S., Steve, K., Muzzy, W., & Kilpatrick, D. G. (2010). Prevalence and correlates of emotional, physical, sexual, and financial abuse and potential neglect in the United States: The National Elder Mistreatment Study. American Journal of Public Health, 100(2), 292–297. Alzheimer’s Association. (2011). 2011 facts and figures. Retrieved from http://www.alz.org/ documents_custom/2011_Facts_Figures_Fact_Sheet.pdf Beach, S. R., Schulz, R., Castle, N. G., & Rosen, J. (2010). Financial exploitation and psychological mistreatment among older adults: Differences between African Americans and nonAfrican Americans in a population-based survey. The Gerontologist, 50(6), 744–757. Butler, R. N. (1969). Age-ism: Another form of bigotry. The Gerontologist, 9(4), 243–246. California Advocates for Nursing Home Reform (CANHR). (2013). Elder abuse. Retrieved from http://www.canhr.org/abuse/ Cooney, C., Howard, R., & Lawlor, B. (2006). Abuse of vulnerable people with dementia by their carers: Can we identify those most at risk? International Journal of Geriatric Psychiatry, 21(6), 564–571. Dyer, C. B., Pavlik, V. N., Murphy, K. P., & Hyman, D. J. (2000). The high prevalence of depression and dementia in elder abuse or neglect. Journal of the American Geriatrics Society, 48(2), 205–208. Fisher, B. S., & Regan, S. L. (2006). The extent and frequency of abuse in the lives of older women and their relationship with health outcomes. The Gerontologist, 46(2), 200–209. Hightower, J., Smith, M. J., & Hightower, H. C. (2006). Hearing the voices of abused older women. Journal of Gerontological Social Work, 46(3–4), 205–227. Lachs, M. S., Williams, C. S., O’Brien, S., Pillemer, K. A., & Charlson, M. E. (1998). The mortality of elder mistreatment. Journal of the American Medical Association, 280(5), 428–432. MetLife Mature Market Institute. (2009, March). Broken trust: Elders, family and finances. Retrieved from http://www.metlife.com/assets/cao/mmi/publications/studies/mmistudybroken-trust-elders-family-finances.pdf Mouton, C. P., Rodabough, R. J., Rovi, S. L., Brzyski, R. G., & Katerndahl, D. A. (2010). Psychosocial effects of physical and verbal abuse in postmenopausal women. Annals of Family Medicine, 8(3), 206–213. National Adult Protective Services Association (NAPSA). (2004). Ethical principles and best practice guidelines. Retrieved from http://www.apsnetwork.org/Resources/docs/Ethical%20Principles.pdf National Center on Elder Abuse (NCEA). (1998). The National Elder Abuse Incidence Study, final report. Washington DC: The National Center on Elder Abuse. National Center on Elder Abuse (NCEA). (2011). Frequently asked questions. Retrieved from http://www.ncea.aoa.gov/NCEAroot/Main_Site/FAQ/Questions.aspx National Long-Term Care Ombudsman Resource Center (NORC). (n.d.). About ombudsmen. Retrieved from http://www.ltcombudsman.org/about-ombudsmen Nerenberg, L. (2008). Elder abuse prevention: Emerging trends and promising strategies. New York, NY: Springer Publishing Company. University of California San Francisco (UCSF). (2010). UCSF Memory and Aging Center: Education overview. Retrieved from http://memory.ucsf.edu/education/overview U.S. Government Accountability Office (GAO). (2011, March). Elder justice: Stronger federal leadership could enhance national response to elder abuse (GAO Publication No. 11–208). Washington, DC: U.S. Government Printing Office.

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University of Nebraska Medical Center (UNMC). (2011). Geri pearls: Functional disability assessment. Retrieved from http://webmedia.unmc.edu/intmed/geriatrics/reynolds/ pearlcards/functionaldisability/functionaldisability_prlcard.htm Wiglesworth, A., Mosqueda, L., Mulnard, R., Liao, S., Gibbs, L., & Fitzgerald, W. (2010). Screening for abuse and neglect of people with dementia. Journal of the American Geriatrics Society, 58(3), 493–500. World Health Organization. (2011). Elder maltreatment. Retrieved from http://www.who.int/ mediacentre/factsheets/fs357/en/index.html

9

PROMOTING STAFF RETENTION AND SATISFACTION Edwin P. Cabigao David Hahklotubbe

LEARNING OBJECTIVES On the completion of Chapter 9, the reader will be able to critical importance of adequate nurse staffing to providing qual•  Discuss  ity patient care •  Describe crisis in nurse staffing shortages due to workforce dynamics,

insufficient geriatric emphasis in nurses’ training/curriculum, nurses’ poor orientation and lack of ongoing training, and issues contributing to nurses’ reluctance to work in long-term care (LTC), specifically nursing homes, will be analyzed •  Evaluate how LTC industry recruits, retains, and values nurses to promote staff retention and satisfaction •  Describe several practical strategies; “best practice” staff retention programs are profiled to assist LTC facilities to create and sustain positive work environments, thus creating high staff and resident satisfaction

The LTC industry has been experiencing much more significant challenges in nursing retention and quality of care as compared to other health care settings such as acute hospitals, clinics, home health, and so forth (Harrington et al., 2000a; Schnelle et al., 2004; Unruh & Wan, 2004). According to the Center for Medicare & Medicaid Services (CMS), two significant challenges that LTC settings, specifically nursing homes, face are inadequate staffing (Harrington et al., 2000a; Zhang, Unruh, Liu, & Wan, 2006) and substandard quality of care (Bliesmer, Smayling, Kane, & Shannon, 1998; Bowers, Esmond, & Jacobson, 2000). Sufficient staffing is crucial to providing safe and quality patient care (Burgio, Fisher, Fairchild, Scilley, & Hardin, 2004; Harrington et al., 2000a, 2000b, 2000c). With the nursing shortages that the entire health

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care industry is currently facing and the anticipated worsening of this significant issue in the next decade, it is very critical to find keys to open doors toward improving recruitment and retention efforts and making nurses feel good about their jobs. This intervention requires immediate attention in the nursing home industry as the older adult population is growing rapidly every single day (U.S. Bureau of the Census, 2001). To be able to manage health care, the industry needs sufficient manpower. In addition, the LTC industry mostly requires nursing care. Without adequate nurse staffing, it will be impossible to manage the industry and be able to reach every health care organization’s goal: to provide quality care to residents. Given the fact that nursing homes are faced with a serious nursing shortage, it is essential to study the root of the problem—why cannot we recruit nurses to work in nursing homes? Why cannot we retain them? To answer these questions, it is imperative to look at the nurses who are currently working in nursing homes. It is vital to recognize that nurses do have choices. There are various avenues and opportunities for nurses to work in different settings. Generally, nursing homes pay less (Robertson, Herth, & Cummings, 1994) and offer fewer benefits (CohenMansfield, 1997). In addition, there is a certain stigma of abuse and substandard care that is attached to one’s name once he or she works in nursing homes. Newspaper, magazine, and journal articles on nursing homes have not only instigated this negative impact on the LTC industry, but they have also created a permanent unfavorable mark on the reputation of every individual who works or has worked in a nursing home. Surprisingly, we still have nurses who have not only challenged all the barriers in LTC but also embraced them by deciding to stay and work for nursing homes. So the most important questions to ask are the following: What encourages nurses to stay in nursing homes? What makes nurses feel good about what they do? What influences them to provide quality care? By investigating the root and the cause of the nursing-shortage issue and finding out the common denominator among the nurses who are currently challenged in nursing homes, the LTC industry can use all its resources to focus on improving nurses’ job retention, satisfaction, and performance. The process of discovering what influences nurses to stay in nursing homes is the key to solving the nursing-shortage crisis that nursing homes currently face and at the same time, the solution is critical in planning ahead to ensure adequate staffing in the coming years.

turnover rate affects nurse staffing and Quality Adequate nurse staffing is critical to providing quality patient care (Bliesmer et al., 1998; Bowers et al., 2000; Burgio et al., 2004; Harrington et al., 2000a; Harrington, Woolhandler, Mullan, Carrillo, & Himmelstein, 2001; Zhang et  al., 2006). In this context, adequate nursing staff can be defined as the appropriate number of welltrained, properly supervised individuals who meet the personal as well as clinical care needs of nursing home residents. Presently, licensed nurses (LNs)—licensed vocational nurses/licensed practical nurses (LVNs/LPNs) and registered nurses (RNs)—provide 80% to 90% of clinical care (Harrington et al., 2001). Clinical care includes assessment and management of the resident’s overall clinical needs, for example, medication, condition, physical well-being, cognition, and sometimes even activities of daily living. In recent years, workforce dynamics along with a

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growing elder population have resulted in nurse staffing shortages across the LTC continuum. Clearly, well-trained staff, and especially LNs, have an important role in providing a high standard of quality care in nursing homes. High turnover among LNs, who provide the clinical care in nursing homes, means that residents are constantly receiving care from staff who often lack experience and knowledge of individual residents. Nurses are clinical professionals and have sworn to care and protect the safety of patients under their care. In consideration of this, should nurses be held responsible for not stepping up and acknowledging what they need to provide good quality care and to manage working in nursing homes without the burnout, poor care practices, and job dissatisfaction? Or, is it the responsibility of the nursing home industry to find the source of why today’s nurses are deciding not to stay in a nursing home environment, while some stay but do a poor job? Most previous studies have examined job satisfaction (Larrabee et al., 2003; Ma, Samuels, & Alexander, 2003), retention of nurses (Prevosto, 2001), and acceptable staffing ratio in general care settings not specific to LTC settings (Shader, Broome, Broome, West, & Nash, 2001; Spence Laschinger, 2004).

NURSING RETENTION ISSUES Staffing Requirements The federal standard does not require specific staffing levels for skilled nursing facilities (SNFs), either in terms of hours per patient day or staff-to-patient ratios, according to the U.S. Health and Human Services Agency, Health Care Financing Administration (2000). The federal standard addresses a staffing level sufficient to meet the nursing needs of residents. The federal government established guidelines in 1987 that required nursing facilities to provide residents with licensed nursing services 24 hours/day (Omnibus Budget Reconciliation Act of 1987 [OBRA], 1987). The law specifies that an RN must be on duty for at least 8 of those 24 hours, 7 days/week. Since the OBRA passage in 1987, 35 states have adopted nursing staff requirements to augment the general federal nursing standard. Of these, 15 (including California) are considered to have more demanding standards. Currently, only Arkansas and Delaware have more stringent staffing requirements than California (3.2 hours/patient day) for standard SNFs (Harrington et al., 2001; Zhang et al., 2006). As of May 2000, Delaware requires 3.25 hours of nursing care per patient day. In Arkansas, legislation requires staff-to-patient ratios that are equivalent to 3.5 hours per patient day. The current federal standards require an RN to be on duty for 8 consecutive hours per day, 7 days a week (OBRA, 1987). The director of nursing (DON) must be an RN, who may also serve as a charge nurse when the facility has 60 or fewer residents (OBRA, 1987). Each facility is required to have an LN (i.e., RN, LVN, LPN) on duty 24 hours/day 7 days a week (Code of Federal Regulations, 42 CFR 483.30). When these specific requirements are converted to number of hours per resident day (HPRD), the total LN requirements are approximately 32 HPRD, or 19 minutes per resident per day for an average facility with 100 residents. The federal standards do not require minimum levels for nursing assistants, direct-care staff, or total nursing staff, but require levels sufficient to provide adequate care to residents (Zhang et al., 2006). The requirement for California SNFs to provide a minimum of 3.2 nursing hours per patient day took effect on January 1, 2000. In recognition of the impact

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of the increase in terms of recruiting new staff during a nursing shortage, the Department of Health Services (DHS) notified all SNFs that on or shortly after April 1, 2000, they would be expected to be in full compliance. DHS enforces the 3.2 hours staffing requirement primarily through on-site reviews of SNFs in response to complaints filed against facilities, and during routine periodic licensing and certification surveys when other findings suggest that staffing may be an issue (Harrington et al., 2001; Zhang et al., 2006). If a facility is found out of compliance with the 3.2-hour standard, DHS may issue a deficiency or a citation, depending on the impact on patient care (Harrington et al., 2001). Both a deficiency and a citation require the facility to prepare and implement an acceptable plan of correction. A citation also carries with it imposition of a monetary fine (OBRA, 1987). State and federal staffing requirements clearly define the need for adequate staffing to provide sufficient care. Who will take care of older adults when today our industry is already facing stringent staffing requirements and serious nursing shortages in all health care settings? This is an important question that requires an immediate and thoughtful answer.

Critical Nursing Shortage and Associated Costs Current forecasts within the United States project more than 100,000 staff-nurse vacancies, with future shortages estimated at more than 800,000 by 2020 (Martin, 2003). These projections are in general hospital settings and not specific to nursing homes. Additionally, according to Martin (2003), approximately one third of working nurses are over the age of 50. The average age of nurses in 2000 was 43.3 years (Heinrich, 2001). Nurses are expected to be retiring in large numbers over the next decade. As a result, the RN vacancy rate will be 20% by year 2020 (Buerhaus, Staiger, & Auerback, 2000; Heinrich, 2001). These alarming projections are exacerbated by the reality that fewer young people are pursuing nursing education at a time many nurses are nearing retirement age (Foley, 2001). Without nurse educators, the number of new graduates required to meet the need will not be achievable. Approximately 500,000 nurses, which is 18% of the nursing workforce, maintain active nursing licenses but do not work in nursing according to 2000 National Sample Survey of Registered Nurses (Foley, 2001). Public and private companies are competing for nurses in the marketplace. Most important, many nurses are leaving the profession due to reduced nurse-to-patient ratios, unsafe working conditions, lack of autonomy, inadequate pay, and other workplace issues (Martin, 2003). This crucial ongoing issue of high turnover rate of nurses requires the industry to constantly fill the gap and ensure that there are sufficient numbers of nurses to provide quality care. In reality, nursing is the backbone of the health care system; therefore, it is only imperative for the health care industry to implement programs that will attract and keep nurses who will stay in the nursing profession for a long time. In addition, nursing shortage costs are high. The most obvious cost is in actual dollars. Current projections within the United States estimate more than 100,000 staff-nurse vacancies, with future shortages estimated at more than 800,000 by 2020 (Kleinman, 2004). The rate of nurse turnover in 2000 was 21.3% (The HSM Group, Ltd., 2002). Also, the cost of replacing a nurse includes human resources expenses for advertising and interviewing, increased use of agency nurses, overtime, lost productivity, and termination payouts (Colosi, 2002). If a hospital with 100 nurses experienced turnover at the rate of the national ­average of 21.3%, ­expenditures could amount to as much as $1,969,015 yearly for the turnover of medical–surgical

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nurses alone (The HSM Group, Ltd., 2002). Another cost of the nursing shortage is negative patient outcomes (Harrington et al., 2001). Needleman, Buerhaus, Mattke, Stewart, and Zelevinsky (2002) explained that fewer RN hours were directly responsible for increased lengths of stay, higher rates of urinary tract infections, pneumonia, upper gastrointestinal bleeding, shock or cardiac arrest, and failure to rescue.

Current Nurse Retention/Recruitment Focus Contributing factors related to the nursing shortage remain the same, such as women having more choices for a career (Galbraith, 1991), nursing not being viewed as a highly desirable career (Takase, Kershaw, & Burt, 2001), men having issues with nursing as a profession for women (Boughn, 2001; Galbraith, 1991), and nurses aging every day (Buerhaus et al., 2000; Cohen, 2006). In addition, the fundamental changes in how patients are cared for in a health care environment are compounding the shortage (Aiken, Clarke, Sloane, Sochalski, & Silber, 2002). According to Copeland (2005), past economic solutions such as sign-on bonuses, relocation coverage, housing allowance, or new premium packages will have limited and temporary effects because they simply redistribute the supply of nurses, not increase it. However, these solutions are already gaining in popularity again as evidenced by ads in local newspapers, journal magazines, fliers, and even mailers (Foley, 2001; Nevidjon & Erickson, 2001). Several professional organizations have developed executive statements to solve the national nursing shortage and high turnover rate among staff nurses (American Nurses Association [ANA], 2002; American Organization of Nurse Executives [AONE], 2002). More than 60 professional nursing organizations participated in the development of a strategic implementation plan entitled “Nursing’s Agenda for the Future” (ANA, 2002). The plan has 10 focus items to improve the future status of nursing by the year 2010. One vision for the nursing profession involved developing leadership behaviors that promote collaboration with colleagues. Several researchers have concentrated on application of a mentorship program to improve retention of nurses (Almada, Carafoli, Flattery, French, & McNamara, 2004; Hale, 2004; Rosser, Rice, Campbell, & Jack, 2004). Others focused on effective nursing leadership as a significant factor in work satisfaction among staff nurses (Shader et al., 2001) and staff-nurse retention (Ribelin, 2003). With any type of focus of study, the solutions to create a sustained improvement to the nursing shortage will need to be more radical, revolutionary, and creative. It certainly must address the longterm issues, which is the root of why we have the shortage of nurses especially in nursing homes.

Staffing and Quality of Care Aiken et  al. (2002) determined that each additional patient, over a patient–nurse ratio of 4:1 was associated with a 7% increase in the chance of failure to rescue, as well as a 7% increase in the likelihood of the patient dying within 30 days of admission. Furthermore, they reported that a 6:1 ratio increased the chance of death by 2.3/1,000, and an 8:1 ratio increased the chance of death by an additional 8.7/1,000.

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Each patient over a 4:1 ratio increased the odds of nurse burnout by 23% and job dissatisfaction by 15%. Numerous studies (Harrington et  al., 2000b; Schnelle et  al., 2004; Unruh & Wan, 2004) have shown a significant positive relationship between higher nurse staffing levels, especially LN staff, and improved nursing facility care outcomes. Higher staff levels and lower RN turnover rates have been associated with better quality of care, including fewer pressure ulcer wounds (Bostick, 2004), fewer infections and less use of antibiotics (Schnelle et al., 2004), and reduced injuries and death (Harrington et al., 2001). Inadequate nurse staffing and poorly trained nurse staffing are factors related to substandard quality-of-care deficiencies from federal inspections, including high incidence of weight loss, hospitalization, malnutrition, and dehydration (Harrington et al., 2000a, 2000c; Kayser-Jones, 1997). Similarly, published studies have found positive correlations between RN participation in direct caregiving or providing hands-on guidance to certified nursing assistants (CNAs) and improvements in the quality of patient care (Bliesmer et  al., 1998; Iwasiw & Oison, 1995). As licensed nursing professionals, according to Bliesmer et al. (1998), RNs and LPNs are crucial in providing not only the clinical expertise but also consistent guidance and supervision in the nursing home environment. RNs spend less time with residents in nursing homes than they do in hospitals. In hospitals, RNs spend an average of 45 minutes per patient per day compared with an average of 14 minutes per patient per day in nursing homes (Harrington & Carrillo, 1999). Although the new federal legislation for nursing homes (the Omnibus Reconciliation Act of 1987) requires one RN on duty 24 hours a day and 7 days a week, a provision that will cost the government an estimated $75 million over current staffing levels, these staffing standards are considered far from adequate by the nursing profession (Harrington et  al., 2000b). Staff levels should reflect the complexity of care required, the size of the facility, and the type of services delivered.

Acute Hospital Versus Nursing Home If a new graduate nurse is given a choice between working for an acute hospital or SNF, the new nurse generally will choose to work for the acute hospital (Tradewell, 1996). Who would want to work in a nursing home if one can work in an acute hospital and get paid more? There are many factors contributing to why nurses would choose hospitals over nursing homes. The reputation that nursing homes have can significantly affect a new nurse’s decision in choosing which setting to work for. The negative reputation that is attached to nursing homes comes not only from the media, but from the government as well. According to Stoil (2000), “Nursing homes can have its reputation assailed by the government on the Internet, lose its ability to admit patients, and be driven into bankruptcy, with no right to defend itself in court.” He summarizes what nurses and administrators of the nursing home industry face every day in taking care of our older adults. With the low government reimbursement for most patients, increasing penalties for fraudulent nursing homes, and increasing health care claims from $2,000 to $10,000 according to Department of Health and Human Services (Guagliardo, 2000), the government still expects nursing homes to do a perfect job. In addition to the reputation that nursing homes have, the industry continues to experience a major and critical nursing staff shortage. According to Blankenheim (2000), for

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many nurses, including CNAs, low salary, rigid work, and negative publicity about ­nursing homes do not make a job in the long-term industry appealing and satisfying. The nursing home industry’s negative appeal can create a major problem for the nursing facilities, which definitely can affect how an individual provides quality care. This negative reputation and its effect in standards of care are just two major challenges in the nursing home industry, both of which can affect how nurses feel about working for nursing homes. In addition, LTC nursing facilities require nurses to coordinate care for residents with complex care needs, manage nursing personnel with diverse backgrounds, and meet multifaceted government regulations. Typically, a nurse will handle about 25 to 30 residents (McGregor et al., 2005; Zhang et al., 2006). In reality, nurses working in nursing homes do extend their work from an 8-hour job to about a 9- to 12-hour shift just to finish all their work and make sure that accurate and clear documentation is in place (Cox, Kaeser, Montgomery, & Marion, 1991). Most of the time, these nurses do work and stay for extended hours without asking for overtime. If nurses in nursing homes are underpaid and overworked, then why do they stay working in these poor conditions and negative environments? The answer can be an assumption of multiple factors. First, they lack the training and experience to be employed in an acute hospital (Beecroft, Kunzman, & Krozek, 2001; Bowles & Candela, 2005; Carr & Kazanowski, 1994; Robertson et al., 1994). Most of the acute hospitals require at least 2 years of acute hospital background (Firth, Mellor, Moore, & Loquet, 2000). Another factor is job security. Acute hospitals are known to be very strict with nurses and have strenuous disciplinary systems used in improving quality of care of nurses (Casey, Fink, Krugman, & Propst, 2004). Many of the nurses who work in nursing homes refuse work in a threatening and rigorous environment. Also, nurses are aware of the critical nursing shortage in nursing homes and they know these LTC settings would tolerate and allow their average or below-average performance. The fact is, practicing nursing, regardless of which setting one works for, can eventually lead to job stress (Garner, 1992; Hinshaw, Smeltzer, & Atwood, 1987), burnout (Aiken et al., 2002), and job dissatisfaction (Larrabee et al., 2003). It stems from looking into how nurses see their role as an individual working in a nursing home. It goes back to what type of training they need and what standards of practice are necessary. Effective and well-trained nurses promote quality care outcomes (Kimball & O’Neil, 2002; Weinberg, 2003). Knowledge and skill in caring for the aged can be improved in a given organization only if someone assumes accountability by recognizing that new standards of care are needed and expectations for positive outcomes are required.

Job Dissatisfaction and Burnout Job dissatisfaction is a major cause of nurse turnover, and turnover significantly increases the nursing shortage (Schaefer & Moos, 1991; Shader et al., 2001; Taunton, Boyle, Woods, Hansen, & Bott, 1997; Tumulty, Jernigan, & Kohut, 1994). Multiple studies have shown that job dissatisfaction is a predictor of nurses’ intent to leave their jobs. Intent to leave is the greatest predictor of whether or not nurses actually do leave (Boyle, Bott, Hansen, Woods, & Taunton, 1999; Ingersoll, Olsan, DrewCates, DeVinney, & Davies, 2002). Job satisfaction is the extent to which individuals enjoy their jobs (McCloskey & McCain, 1987). Unreasonable workload, workplace

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safety, payment and benefits, and opportunities for advancement often undercut nurses’ efforts to provide quality care and are the chief reasons for job dissatisfaction among nurses and nursing home staff. Nurses may constitute the most dissatisfied professionals in the United States today. According to the Department of Health and Human Services (2000), slightly more than two thirds of RNs (69.5%) reported being even moderately satisfied with their jobs. By contrast, 85% of workers in other industries and 90% of professional workers are satisfied with their jobs. A 1999 survey conducted by the Nursing Executive Center reported similarly troubling findings: 28% of RNs said they were either somewhat or very dissatisfied with their jobs; 51% were somewhat satisfied; and only 21% were very satisfied (Breisch, 1999). According to Firth et  al. (2000), staff nurses have lower satisfaction (66%) than any other type of nurse. When analyzed by place of work, nursing homes top the worst list (65%). All other types of nurses have somewhat higher levels of satisfaction, with the highest being nursing education (83%). But even this highest category remains lower than the average for professionals in other occupations (Firth et  al., 2000). Nurses’ dissatisfaction with their jobs is surprisingly universal. Personal factors such as age, years of experience, or education have relatively little impact on job satisfaction. Bratt, Broome, Kelber, and Lostocco (2000) found no evidence of difference in job stress when factoring in education, the age of the nurse, or the shift worked. They did find a significant decrease in job satisfaction when nurses worked rotating shifts. They also found that newer and inexperienced nurses had increased job stress as compared to experienced nurses. In contrast to other research, their findings indicated no relationship between nurse–physician interaction and job stress. According to Firth et al. (2000), the problem is not in the person; it is in the job. Several reasons affect nursing job satisfaction and the nurses’ decisions to stay in nursing homes. The following research studies have identified different factors that relate to nursing job satisfaction and retention: problems with quality of care in some of the nation’s nursing homes, secondary to low staffing standards in nursing homes (U.S. General Accounting Office [GAO], 1998, 1999, 2000); workload, organizational constraint (Adams & Bond, 2000; Hoffman & Scott, 2003; Shaver & Lacey, 2003); supervisor and mentor support (Larrabee et al., 2003; McNeese-Smith & Crook, 2003); nurses’ lack of recognition (Ma et al., 2004); lack of respect (Laschinger, Finegan, Shamian, & Wilk, 2001); autonomy and social integration (McCloskey, 1990); organizational commitment (Laschinger et  al., 2001; McDermott, Laschinger, & Shamian, 1996; Wilson & Laschinger, 1994); decision involvement (Laschinger, Sabiston, & Kutzscher, 1997); management trust (Laschinger et al., 2001); and job stress (Hatcher & Laschinger, 1996; Laschinger et al., 2001). In addition, physical environment and its culture can also affect job satisfaction and retention of nurses. Williams (1990) attempted to determine whether there was a difference between the job satisfaction of RNs in medical–surgical units and those in critical care units. She identified evidence that ranked pay and autonomy as most important and organizational policies and task requirements as least important. Lynch (1994) investigated job satisfaction factors for home health care nurses, which indicated that the majority of the home health care nurses were satisfied with salary, hours, flexibility in scheduling hours, weekends off, compensation for weekend work, and social contact at work. Lack of recognition for work, inadequate levels of encouragement, and lack of positive feedback from superiors were noted as factors for dissatisfaction, along with failure to have autonomy. Carr and Kazanowski (1994) evaluated nurses’ job satisfaction in LTC settings (not specific to nursing homes) and nurses who work in other settings with

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­ atients older than 60 years. Comparison of job satisfaction between the two groups p revealed that the geriatric nurses were more dissatisfied than the other group due to heavy workload, poor staff cohesiveness, inadequate levels of staffing, poor working relations with administrators, lack of recognition, and inadequate salaries. Purk (1993) performed a qualitative study on rehabilitation nursing and found that all nurses interviewed were happy with the specialty of rehabilitation nursing even though it was not their first choice for a specialty. Olsen (1988) performed a study of the job satisfaction of operating room (OR) staff and identified length of orientation time, adequacy of staffing, opportunities to develop new skills, and collaboration between colleagues as factors for retention and job satisfaction. Multiple studies have confirmed that job satisfaction is directly linked to retention and turnover rates (Firth et  al., 2000). Dissatisfaction is expressed most clearly in the number of nurses who consider leaving the profession. In addition, nurses across the nation are reporting increased stress and dissatisfaction with nursing (Boyle et al., 1999; Bratt et al., 2000; Needleman, Buerhaus, Mattke, Stewart, & Zelevinsky, 2001; Shader et al., 2001). Nurse–physician conflicts add to an already stressful work environment (Rosenstein, 2002). One in five nurses plans to leave the profession within the next 5 years (Letvak, 2002). Considering all these issues, it becomes imperative to search for ways to retain experienced nurses. Although nurses face worsening conditions in many countries, American hospitals seem to be particularly hard hit. In her five-country study of nursing, renowned scholar Linda Aiken (2000) reported that 41% of U.S. nurses were dissatisfied with their jobs and that nearly one in four plan to leave their job within a year. She further explained that the rate of dissatisfaction in the United States was the highest of all five countries studied, and American nurses were three to four times more likely to be dissatisfied with their jobs than the average U.S. worker. This study used a standardized measure of burnout and found that 43.2% of nurses scored in the high burnout range according to norms. One of the most telling findings of one study is that 33% of nurses under the age of 30 were planning to leave their job within the year, according to Aberge (2002). The fact that even young nurses are already dissatisfied and thinking about leaving nursing points to the futility of focusing on the pipeline of nursing students as a strategy for solving the nursing shortage. A previous study performed by Aberge (2002) asked nurses to describe how they felt at the end of a day’s work. Nearly 50% reported that they typically felt “exhausted and discouraged”; 40% felt “powerless to affect change necessary for safe, quality patient care”; 26% felt “frightened for their patients”; and 24% felt “frightened for themselves.” Burnout, on the other hand, is described by Maslach (1998) in the literature as a syndrome of emotional exhaustion, depersonalization, and reduced personal accomplishment. Emotional exhaustion occurs when an individual has feelings of being emotionally overextended and depleted of emotional resources. Burnout is a phenomenon in which the cumulative effects of a stressful work environment gradually overwhelm the defenses of staff members, forcing them to psychologically withdraw. Garrett and McDaniel (2001) described environmental uncertainty as being important in all aspects of burnout. To understand the experience of professional and paraprofessional nurses suffering from burnout requires a close examination of the environments in which they function. Burnout is a term frequently used to describe the feelings of stress among those in the helping professions. Aiken et  al. (2002) reported nurses with the highest nurse-to-patient ratio experience burnout and dissatisfaction more than twice as much as those with lower ratios. The researchers noted that 43% of nurses who reported high levels of burnout and ­dissatisfaction intended to leave their

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jobs within a year. This was compared to nurses who did not complain of burnout or dissatisfaction. Only 11% of these nurses intended to leave their current jobs.

Substandard Care Since 1995, the Healthcare Financing Administration (now called CMS) has been enforcing the toughest nursing home regulations in the history of the Medicare and Medicaid programs. CMS has sharply increased the number of penalties levied on poor-quality nursing homes (OBRA, 1987; Office of the Inspector General [OIG], 1999). No issue for nursing homes is as difficult and controversial as quality of care. Nonetheless, significant quality problems persist. GAO (1999) reports that one fifth of nursing homes still have serious quality problems even though the quality of care appears to have improved in numerous domains during the past decade (Berlowitz, Bezerra, Brandeis, Kader, & Anderson, 2000; Castle, 2000; GAO, 1999). One of the most stringent federal regulations, the Nursing Home Reform Act (NHRA) of 1987 (Public Law 100–203), changed the focus of nursing home inspections to include examining patient health outcomes and expanding the range of sanctions that could be imposed on facilities that do not comply with the law. The end result was that many nursing homes continued to be noncompliant with the standards of care outlined in the NHRA (Edelman, 1998; GAO, 1999). In fact, national data indicated that approximately 40% of the homes cited with serious deficiencies during one inspection were found to have deficiencies of equal or greater severity in subsequent inspections (GAO, 1999). Moreover, Greene Burger, Kayser-Jones, and Prince Bell (2000) estimate that 35% to 85% of nursing home residents suffered and/ or died from malnutrition. Such findings have led numerous analysts to conclude that the weakening of NHRA’s enforcement provisions has had a negative impact on nursing home residents’ health outcomes (GAO, 1999; Greene Burger et al., 2000; Harrington & Carrillo, 1999; OIG, 1999). The GAO (1999) conducted a national study that found 41% of skilled nursing and 34% of intermediate care facilities were out of compliance during three consecutive inspections with one or more requirements considered by experts to be the most likely to affect patient health and safety. Although many nursing homes offer high-quality care, the wide variation in quality among nursing homes indicates a need for concerted efforts of improvement. Providing consistent high-quality care in nursing homes to a varied group of frail, older adult residents requires that the functional, medical, nursing, social, and psychological needs of residents be identified individually and holistically. In addition, holistic needs of residents need to be met by careful assessment and care planning, which are steps that require professional skill and judgment.

Effects of Inadequate Training Among the many factors contributing to the high levels of job dissatisfaction and turnover rates of direct-care workers are poor orientation and lack of ongoing training (Amerson, 2002; Neuhauser, 2002). The Joint Commission on the Accreditation of Healthcare Organizations (Joint Commission on Accreditation of Healthcare Organizations [JCAHO], 2005) reports, “inadequate orientation and training of nurses is a factor in 58 percent of serious errors.” JCAHO (2005) further states, “staffing levels

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have been a factor in 24 percent of 1,609 sentinel events over the past five years.” LNs—RNs and LVNs/LPNs—are often asked to take care of clients and residents without enough training and proper orientation. Studies undertaken to examine the adequacy of training for LNs before handling older adult residents are almost 10 years old and most of these studies were not specific to nursing homes. Another continuing area of inquiry is the association of education and job satisfaction. A study of 1,853 nurses in New York showed that the most highly educated nurses were the most satisfied, with associate degree-prepared nurses the least satisfied (Ingersoll et al., 2002). Previous research by the authors showed that RNs’ intention to leave their current positions decreased with increasing education (Rambur, Palumbo, McIntosh, & Mongeon, 2003). According to Jones, Bonito, Gower, and Williams (1987), government-owned facilities had higher retention rates for RNs than proprietary facilities. Nurses employed in independent facilities had a significantly higher retention rate than did nurses in medium or large chains. The same study identified the following factors as important to RN retention in nursing homes: (a) provision of a comprehensive orientation program for newly hired RNs, (b) availability of in-service education, (c) RNs with geriatric training were more likely to have a longer tenure than those without geriatric training. Another important issue found among the nurses in nursing homes is the fact that 56% of them graduated primarily from diploma schools of nursing (Strahan, 1988). Most professional nurses in nursing homes have little or no formal training in gerontology and LTC (GAO, 1999). Many nursing home attendants or aides have no formal training at all. Few studies relate the educational preparation of staff-topatient outcomes, and most have focused on specialized education for RNs. The role of leadership can also influence nurses’ success working in nursing homes. Effective nursing leadership is critical in the modern health care setting, where complex, high-acuity inpatients are the norm (Shader et al., 2001). The charge nurse role is important because of current staffing issues, the use of agency and/ or foreign nurses, and the need for a proficient nurse to be accountable for issues arising in the unit (Ribelin, 2003). Concisely, charge nurses must take ownership for all unit activities during their shift. Unprepared charge nurses create problems of first-line leadership, such as failure to adequately supervise other staff. Quality can be affected, especially in areas where the most acutely ill patients receive care. Because there is a lack of research, or even current general information concerning this clinical role, it is difficult to understand the significance of the role of charge nurse specifically in nursing homes. In addition, innovative nursing home or rehabilitation care practices require health care teams to learn new skills and to adopt new practices. This task is complicated by the complex care challenges from adults with functional and cognitive impairment in these settings and by the diversity of health care teams, which are typically composed of both professional and paraprofessional personnel from multiple disciplines (Almada et al., 2004). If care is to be improved, new skills and practices must be introduced in a culture that supports their adoption. Furthermore, staff require proper training and education to be able to handle these challenging practices in nursing homes.

Resources and Recognition for Nursing Home Staff Although there is substantial evidence that nursing retention and satisfaction are influenced by many factors, a study conducted by Cabigao (2009) suggests that

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resources are the best predictor of nurses’ intention to quit, and recognition is the best predictor of nursing satisfaction among nurses in nursing homes. Simply put, nurses who are satisfied with the organization’s resources are less likely to quit; nurses who are recognized are satisfied. Relating the outcome of the study to the PRECEDE model, which influences a change in one’s behavior, the results illustrated resources as an enabling factor and recognition as a reinforcing factor (Cabigao, 2009). Resources act as enabling factors of the environment, which facilitate nurses to be able to complete required tasks. By enabling nurses to be able to achieve desired goals, resources simply support their intentions of staying rather than quitting. Recognition, however, reinforces and strengthens one’s motivation to feel satisfied in his or her job. Receiving positive feedback about his or her performance everyday reinforces the nurse’s motivation to feel satisfied working in this setting. Recognition provides a reward or incentive for nurses’ feelings of satisfaction to be achieved. These two factors truly define the underlying principle behind nurses’ intention to quit and what influences their emotions to feel satisfied (Cabigao, 2009).

Similar but Different Challenges for Assisted Living Although many of the services and practices are similar between skilled nursing and assisted living, the fundamental difference between the two, is that skilled nursing follows a medical model and assisted living was designed to follow a social model. Thus, the assisted living world does not require skilled personnel. However, over its evolution, responding to the continuing trend of Americans who wait to consider LTC placement until their loved ones are much older and more frail, assisted living has blurred the lines of what is considered to be medical versus social care. Accordingly, licensing guidelines in most states have been broadened to accommodate these in-coming elders. Despite the populations looking very similar between skilled and assisted, the personnel requirements have changed very little, in particular, the credentials of the leadership team and no minimum staffing requirements for the line-level staff. Most assisted living communities do not employ nurses, social workers, or gerontologists, and are commonly run by those from alternative fields such as hospitality, hotel, and restaurant management. Worse, since there are no strict staffing ratio requirements in most states for assisted living, the companies, in a misguided attempt to save money, are often understaffed. This combination provides for the perfect storm, and sadly, it is self-inflicted, unlike the situation in skilled nursing. Although the skilled nursing field struggles with legitimate barriers such as social stigmas, strict staffing requirements, and nursing shortages, the assisted living field’s biggest barrier continues to be a combination of chasing the bottom line and a crisis of perception in the overall paradigm of thinking about the system of care. It is no secret that the largest operating expense in assisted living is labor. Because many of those responsible for making decisions about cost are not health care professionals, a wide variety of interesting choices are made on how to control or reduce this expense. Many decisions, not surprisingly, work for a very limited amount of time and, over the long run, can destroy the business entirely, not to mention jeopardize the quality of life of countless elders and hardworking, caring individuals.

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Morale, Productivity, and Retention—Results of the Empowerment Model A small handful of more progressive and, subsequently, more successful assisted living companies have adopted a different approach to the system of care. This model views the personnel as the most important people in the building. The simplified equation is as follows: If the personnel are thoughtfully recruited, well trained, empowered, and rewarded, they will be happy. If the personnel are competent and happy, the residents will be well cared for and happy. If the residents are happy, the families (decision makers) will be validated by their decision and thus, happy. If the families are happy, licensing fields fewer complaints and is happy. If licensing is happy, the company is happy. If all are happy, the bottom line naturally grows with increased census and sustains the growth with continued word-of-mouth referrals. Oh, and let us not forget that the overall quality of life of everyone under that roof is markedly increased! The following is a thumbnail of the critical pieces of any quality empowerment program. Many fine books have been published on the subject and should be on the shelf of every assisted living facility. The most common definition of empowerment is found in research by Bowen and Lawler (1992, p. 32). Empowerment is “the sharing with frontline employees four organizational ingredients: 1. Information about the organization’s performance, 2. Rewards based on the organization’s performance, 3. Knowledge that enables employees to understand and contribute to organizational performance, and 4. Power to make decisions that influence organizational direction and performance.” In the production-line approach, which is the most common approach in LTC, these features tend to be concentrated in the hands of senior management. With an empowerment approach, they tend to be moved integrally to frontline ­employees. Research done on psychological empowerment by Gretchen Spreitzer (1995, p. 602) defines empowerment as, “a process by which individuals gain control over their lives.” The common set of dimensions defined by Spreitzer (1995) for the psychological experience of empowerment in the workplace includes a sense of meaning, competence, self-determination, and impact. Meaning, or purpose, involves a fit between the needs of one’s work role and one’s beliefs, values, and behaviors. Competence, or self-efficacy, is specific to one’s work and is a belief in one’s capability to perform work activities with skill. ­Self-determination is a sense of choice in initiating and regulating one’s actions. Selfdetermination reflects autonomy of work behavior and processes. Finally, impact, the converse of learned helplessness, is the degree to which one can influence strategic, administration, or operating outcomes in one’s department or work unit. Selfdetermination and impact reflect different perspectives on the notion of control; control over one’s work and control over one’s work unit. Together the four dimensions reflect a proactive, rather than passive, orientation of an individual in relation to his or her work role. Although there seems to be a gradual awakening of empowerment models finally bleeding into the LTC industry from other industries, such as the dotcom and high-tech fields, the LTC field remains woefully behind in its approaches to attracting, retaining, and empowering quality personnel into its workforce.

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Step 1: Hiring Practices In contrast to the skilled nursing personnel shortage, the assisted living field suffers from “too much of a good thing” with hundreds of applicants answering a single job opening in some cases, particularly during a down economy. However, although this situation may seem like a great problem to have, it is where many companies begin their path to failure. The screening process is critical when creating and maintaining a culture within a company. Many hire to fill rather than fit openings. During this diligent search, it may require the manager to cover shifts on the floor, which is a win–win situation, as it shows the team that their manager is not a remote operator but a hands-on leader. Besides, it gives the manager a true view of what the workloads are like. This seemingly small act can convert followers to disciples. Knowing that their leader would not ask the team to perform a task that he or she has not or would not perform is tremendous. During the search, it is critical not to waste time with candidates who are simply looking for a job. These people tend to be more interested in bridging a gap with a paycheck and not intrinsically motivated by caring for people. Without passion driving a caregiver, she or he is simply in the way. Aside from being short-term employees, they can do a lot of damage during their short tenure, including bringing down morale and the quality of life of everyone in the system, which of course, is the worst-case scenario. During this event, the delicate balance of mutual happiness, discussed earlier, is at risk.

Step 2: Quality Training Essentially, training is the schematic tool that a management team gives the personnel to base their autonomous decision making on. If the company has substandard training, the personnel will make substandard decisions, by definition. Additionally, if the company does not trust the quality or efficacy of its training program, there is no chance that it will trust the decisions made on the floor, thus destroying any potential for true empowerment. Clearly, training is a key yet remains somewhat of an enigma to most assisted living companies. Some of this can be attributed to nonindustry leadership’s inability to identify what is critical in the scope of training. It can also be attributed to the bottom-line watchers. Training costs money, as it should. This is where perception has great influence. If training is perceived as a necessary evil, it will reflect in the quality of the output. Ironically, team members who feel role ambiguity, sense that they are doing harm, or feel unsafe in their position will likely turnover, leaving new team members to train, a never-ending paradox unless a perception change is initiated. Ironically, it is this method that costs far more.

Step 3: Empowerment Quite possibly the most challenging stage for most autocratic managers, the true magic of retention comes when the team member is allowed autonomy to apply his or her expert training and make decisions based on that knowledge. Aside from granting the personnel freedom from the micromanagement style of leadership they would be otherwise oppressed by, the team member will find a renewed sense of motivation and morale knowing that he or she has been given the respect and trust to apply his or her skills, taking control of the day. It is a wonderful thing to witness, as a line-level staff member beams with pride after sharing a victory story of how she or he applied her or his training to solve an issue on the floor. To share this story among management is validating; to share it among his or her cohort, priceless.

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Where many programs fall short and good intentions ultimately go unrealized is the in the paradigm of thinking of the entity and management team. Like many programs, such as the enrichment programs used to retain nurses in nursing school, any basic empowerment program is a process, not an event. Jeffreys (2012, p. 285) indicates that “enrichment program design, implementation and evaluation should be a well-planned process. This involves time, energy, money, commitment, collaborative partnerships, and a systemic plan.” Jeffreys’ (2012) assertion is widespread and applies to the field of assisted living, where the senior management team must be committed constantly to reinforcing and validating the decisions being made at the ground level, regardless of the outcomes, and modifying the decisions that need fine-tuning.

Step 4: Reinforcement (Reward Systems) This stage is where those who understand the process really pull away from their cohorts. The concept of rewards systems can be confusing and even the most heartfelt programs can actually do significant damage. The most important thing that can be said about rewarding performance is: be sure the reward is linked to the performance of the individual. This is not to discourage team performance goals. It is to make clear that the rewards should be attainable by behavior and performance of the individual and not be reliant on other factors such as census or revenue goals. It is hard to find an assisted living company that has not perpetrated this cardinal sin and paid dearly for it by losing morale. The other major tenet of rewards systems is that if a team decides to start an employee appreciation program, the team must maintain it. There are so many examples of companies that ultimately do more damage by starting a program and then abandoning it. We see it daily, if we open our eyes. A perfect example of this is when we visit a business and view an “employee of the month” wall or plaque. Pay close attention to what month and year that smiling face is representing. On inspection, it may be interesting to see that the program has not been maintained. The subliminal message to the employee is, “We once cared for our team members, but those days are over.” What it says to incoming applicants is, “Don’t expect support in this job.” What it says to the consumer is, “Don’t expect customer service.” Does this have to cost a lot of money? No! What it does require is sweat equity, creativity, purposeful planning, and heartfelt compassion for the team.

Step 5: Constant Feedback Loop To truly maintain morale and increase satisfaction, which translates into retention, morale needs to be measured. There needs to be a constant feedback loop between management and the team. During this discovery, it is important to identify how the team and the individuals of the team enjoy being reinforced. The most creative and meaningful rewards are very rarely expensive and create deeper bonds than simply handing out gift cards, for instance. All-staff team meetings are a great way to simply ask the team as a whole how things are going and give them a safe forum to report their feelings. Additionally, 1:1 meetings are helpful in retrieving specific ways to enhance the program. Periodic anonymous and confidential surveys allow the team to safely identify items that need attention that would otherwise go unaddressed. Again, this does not cost a lot of cash but requires dedication and time. It is worth every second of time invested. Lastly, and most important, apply the knowledge gained from the feedback and continue to reinvest in the program. Although all this seems very simple, it is not, but from the outsider’s perspective it will look like magic when it’s working.

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SUMMARY Nursing administrators should recognize the importance of these two variables, resources and recognition, as they create specific programs to cultivate an environment of motivation and inspiration for nurses as well as programs that will help nurses feel satisfied. Because the result of the study suggests that nurses who are satisfied with the organization’s resources are more likely to stay, it is critical for nurses to feel empowered with enough resources but the resources need to be adequate for them to decide to stay. Additionally, it is also essential for nurses to feel recognized, either by their peers or the administration, because it affects the level of their job satisfaction. These two variables combined are the reasons why current nurses in nursing homes continue to decide to stay in this setting and what makes for job satisfaction. The process of discovering resources and recognition, which significantly affects the nurses’ job retention and satisfaction, is important to unlocking the nursing-shortage crisis that nursing homes currently suffer from. In addition, it is imperative to include these two variables as we strategically plan ahead to guarantee satisfactory staffing in the imminent years. In contrast, the assisted living field (Yee-Melichar, Renwanz-Boyle, & Flores, 2011) has a lot of “low-hanging fruit” to take advantage of for improvement as the baby boom generation begins to flood through the doors. The opportunities are there to be quite successful in providing quality care to the elders seeking it and providing a quality of life to those who are interested in joining the team to provide it. However, the field as a whole must make great strides to change the way business is currently done. The bottom line is affected more by making decisions to either do the right thing or to attempt to take shortcuts to get to the finish line first. Essentially, it could be said that the companies that hire qualified and credentialed management teams that are driven by a passion to care, that follow the empowerment system, and consider the personnel to be the most important people in any building will rise above and expand. But there needs to be an obvious word of caution: You cannot fake passion, nor can you buy it.

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10 MARKETING AND CENSUS DEVELOPMENT Kyle Cotter Fredrickson Candiece N. Milford

LEARNING OBJECTIVES On the completion of Chapter 10, the reader will be able to •  Understand that long-term care (LTC) businesses are approaching an

industry that is rapidly changing •  Define the difference between marketing and sales within LTC •  Understand the usefulness of a strengths, weaknesses, opportunities,

and threats (SWOT) competitive analysis Identify a market segment Identify how to position a long-term business within a market segment Become familiar with common advertising methods Identify the characteristics of top sales professionals Define and distinguish between marketing demographics and psychographics •  Identify a business’s referral “ecosystem” •  Understand marketing an LTC business or services toward the future baby boomer generation •  •  •  •  • 

The success and sustainability of LTC services depend on a business or agency’s ability to develop services and products that generate revenue. As a result, an effective marketing strategy is imperative in creating awareness among those who need LTC products and services, as well as those who make referrals and drive customers to use them. Services within the LTC continuum are becoming increasingly competitive as more businesses, inspired by growing opportunities, are seeking to join the LTC service industry (Yee-Melichar, Renwanz-Boyle, & Flores, 2011). As a result, maintaining and growing census or revenue (whether facility or agency based) has become challenging. This is partly due to the increased competition within the LTC industry,

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and also as a result of recent budgetary changes in federal and state reimbursement structures that impact many facility-based businesses, such as skilled nursing facilities and home health agencies. These entities rely on Medicare and Medicaid dollars, including reimbursement from insurance structures such as Medicare advantage plans, health maintenance organizations (HMOs), and LTC policies. Additionally, the recent economic and stock market downturn has impacted many seniors’ savings and retirement plans. Now, more than ever, LTC businesses are increasing their focus on marketing and sales initiatives to identify potential opportunities for revenue and census development.

MARKETING VERSUS SALES: WHAT’S THE DIFFERENCE? Marketing According to the American Marketing Association, “Marketing is the activity, set of institutions, and processes for creating, communicating, delivering, and exchanging offerings that have value for customers, clients, partners, and society at large” (American Marketing Association, 2012). In effect, marketing takes a macro approach by researching and identifying the targeted marketplace and linking potential consumers to a business’s product or service (American Marketing Association, 2012). Forming the core of marketing research are the imperative processes of completing a competitive analysis, identifying a targeted marketing segmentation to present a business’s products, and positioning said products successfully within the identified marketplace segment.

Competitive Analysis Essentially, a competitive analysis is an assessment of a business’s position in the marketplace compared to its competitors. Identifying other competitors that offer similar products or services, as well as differentiating key differences between competitive business products, is critical in understanding how an organization approaches its position in the marketplace. The most common form of competitive analysis used is a SWOT. SWOT stands for strength, weaknesses, opportunities, and threats. When used properly, a SWOT analysis can assist with identifying changes in the marketplace and help a business more readily adapt its strategic planning to address impending changes and remain competitive.

Case Study 1 ABC Hospice, a local nonprofit agency, has been providing hospice services in San Francisco, California, for over 15 years. ABC enjoys an established reputation in the community and maintains strong working relationships with many of the community’s hospitals, physicians, and skilled nursing facilities. Currently, ABC is only able to accept patients who are enrolled in Medicare or Medicaid. Recently, a national for-profit hospice agency has applied for licensure in San Francisco and is expecting approval to begin offering services in the next 4 to 6 months. Being a larger, national organization, they have established contracts with

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TABLE 10.1  ABC Hospice—SWOT Analysis Strengths Established 15 years in marketplace Positive community reputation Good working relationships with referral sources Consistent quality outcomes Opportunities Increase sales/marketing team Update collateral materials, focusing on nonprofit status Evaluation of additional services to offer in the marketplace Evaluate contracting options with local insurance carriers to increase revenue and patient clientele

Weaknesses Historically, minimal marketing in community Outdated collateral materials Recruitment for staffing limited Limited operating budget Threats New agency entering marketplace New agency with exceptional financial resources available for recruitment of current staff Established insurance contracts—ability to accept patients from all providers

insurance carriers as well as Medicare and Medicaid. Additionally, the national agency has considerable resources at its disposal, has already begun a city marketing campaign, and has started to send their sales teams into the community to meet with prospective referrals sources in the marketplace (Table 10.1). Discussion: In reviewing the SWOT analysis for ABC Hospice, what other areas should the business be evaluating as part of their marketing strategy? To be effective, business should be reviewing and updating a SWOT at least every 6 months—or on significant changes in their marketplace. SWOTs, when used properly, assist with identifying areas in which an LTC business can improve, as well as help shape viable visions for the future. Businesses that become complacent and do not regularly analyze their businesses’ positions and/or changes in the marketplace run the risk of losing their competitive edge and may miss opportunities for advancement, revenue, and census development.

Market Segmentation and Product Positioning Market segmentation is the process by which a business “divides a market into smaller groups with distinct needs, characteristics, or behaviors that might require separate marketing strategies or mixes” (Armstrong & Kotler, 2009, p. 194). In the case of most LTC businesses, “seniors” are generally the targeted consumers of choice, but which seniors? As a rather large demographic, seniors vary in multitudes of ways, including in factors such as age, gender, income, culture, and lifestyle. Understanding the specific needs of a desired market segment, and targeting specific group(s) within that segment, is essential in developing appropriate marketing strategies and approaches to reach the desired customer. As an example of identifying a market segment, University Mound, a nonprofit assisted living community in San Francisco, California, has been providing low-cost senior care for over 128 years. Their founding mission has been to serve seniors of “modest means.” As a market segment, University Mound’s targeted segment has focused on working with seniors who resided in San Francisco and the

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Primarly Nonambulatory / Palliative Care or Hospice Eligible Assest/Financial Reservers≤$150,000 Modest Means Average Age Range 75–85 San Francisco Resident / Local Bay Area Senior

FIGURE 10.1  University Mound Ladies Home, assisted living community for seniors of “modest means.”

surrounding Bay Area, who generally are older than the typical assisted living consumer, are more frail, and whose income/assets place them on the edge of having to spend-down their finances to become eligible for nursing home reimbursement under the state Medicaid program (Figure 10.1).

Product Position Product positioning, in turn, is the process by which a business arranges its services to occupy a clear, distinctive, and desirable position relative to competing products in the marketplace (Armstrong & Kotler, 2009). Once a business identifies its market segmentation and desired customer, positioning and marketing its product or services should speak to the needs of the potential customer. As an example, the last two decades have seen an exponential growth in custodial home care agencies. These agencies mainly provide care with bathing, dressing, grooming, and meal preparation for seniors who require assistance and wish to remain in their homes. A home care agency that positions itself as a “boutiquetype” of service versus an agency that focuses on culturally based services (such as Mandarin- or Cantonese-speaking customers) will have identified vastly different market segments and will develop different marketing approaches—though they may conduct business within the same marketplace.

Customer Psychographics At any point in time, the LTC continuum is in flux—continually evolving with changes in demographics, representing multiple sets of cultural values and ­attitudes, better known as psychographics. Understanding the mind-set of the multiple

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generations that will require LTC services and how to balance this with a younger demographic that is either exploring or assisting loved ones with identifying appropriate services, is imperative to successfully managing expectations and identifying appropriate market segments for outreach. So what is the difference between psychographics and demographics and how can this information help businesses build and retain census? These terms are distinct from each other in that demographics studies variables such as age, gender, fertility rates, income, and ethnic origin, whereas psychographics hones in on values, attitudes, lifestyles choices, and interests. Understanding both aspects as they play into how potential customers choose LTC products and services builds the foundation for intelligent advertising, marketing, and product development options for both current consumers and those researching the decision to elicit services themselves. A thorough understanding of the customers is critical in meeting them where there are, on their terms, to influence their decision regarding a business’s product or service over other competitors. Using the continuing care retirement community (CCRC) model as an example, a snapshot of many residents in these types of communities represents the cohort of people born between 1925 and 1942, often referred to as the “silent generation.” Born during the Great Depression, the demographic profile of this generation reflects a group that is better educated, wealthier, and most likely still to be married. As a result of the impact of the Great Depression, the psychographic profile of the Silent Generation presents a cohort of consumers whose life experiences inspired them to be hard workers who saved their financial resources, are independent, are active, and travel. “Silents” also expect to live longer, show brand loyalty, are price- and value-oriented when purchasing products or services, desire choice and control in their retirement, and want to participate in their community rather than be passive receptors of existing programs (Morrison Senior Living, 2012). Understanding and identifying the differences between the demographics of a consumer and the psychographics of the consumer, although related, are critical for any LTC business strategy, as well as preparing for future consumer demands. In contrast to the Silent Generation, many facility-based communities are preparing for the impact of the baby boomers (those born between 1946 and 1964); however, based on the psychographic profile of this demographic, communities understand that the current boomer is not necessarily ready to use the majority of CCRC services for at least 10 or more years. Yet, despite not being ready to use services, these types of communities are being proactive in their strategic business planning to meet the future needs of this cohort by researching how best to meet the demands of this upcoming demographic, which values options regarding lifestyle choices, independence, and may be hypersensitive to aging and related services— particularly facility-based services.

Sales and the Salesperson In contrast to the macroapproach that marketing takes in identifying competitors, potential customers, and how products are perceived and positioned in the marketplace, “sales” is the activity of carrying out the targeted message of a business’s offered services directly to customers with the objective of generating revenue and building census (Armstrong & Kotler, 2009).

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In LTC, most businesses have an individual (or team of individuals) whose function within the organization is to identify and generate referrals from prospective customers and/or those who recommend services. In facility-based communities, such as assisted living or skilled nursing facilities, communities have an “admission director” or “marketing director.” Home health or custodial-care agencies may employ an “account executive” or “community liaison.” Regardless of the title, the objective of the salesperson is to generate increased census and grow business through personal selling. Personal selling, essentially, is based on developing productive and trusted relationships with referral sources and customers. Some sales professionals are highly skilled and others struggle with the stress of meeting financial objectives. Top-performing salespersons, therefore, are often individuals who possess unique characteristics that make them successful when interacting with customers. In an article by Amanda Ruth and Allen Wysocki (2002), some of the common attributes of a top salesperson include •  Not taking “no” personally •  A high degree of job commitment •  Intelligent •  Social/interpersonal •  Authoritative •  Ethical •  Persistent •  Ability to improvise •  Tenacious •  Self-disciplined •  Creative Many salespersons are also highly extroverted and have an innate ability to see connections among people, services, and ideas. They easily relate to others and can identify opportunities for meeting the needs of the potential customer while simultaneously developing an atmosphere of trust, which facilitates a willingness on the part of the consumer to use or try their businesses’ services. As LTC as an industry continues to grow and become more competitive, the need for quality, topperforming sales professionals will continue to remain one of the most critical positions for any business.

Understanding the Referral “Ecosystem” Within the LTC continuum, opportunities to present and market a business’s product or service are vast and continually expanding. As more and more seniors age and require services, businesses are developing creative marketing ideas and pursuing partnerships with both traditional and nontraditional customer-referral sources. Traditional referral sources may include hospital case mangers/discharge planners, physicians, and families of seniors using services. In a nontraditional approach, businesses are also exploring opportunities with other LTC providers (which may have been perceived strictly as competitors in the past), radio and television advertisement, as well as community networking and Internet social marketing platforms. Whether traditional or cutting edge, referrals and opportunities for business development can be perceived akin to an evolving ecosystem—alive, resourceful, and adaptive in nature.

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Hospitals—Case Managers, Discharge Planners, and Social Workers In many areas of LTC sales marketing, case managers, social workers, discharge planners, and others focused on postacute planning at the acute levels are highly sought after as their positions often wield great influence over which businesses or agencies receive customer referrals. Although every patient has the right to choose which agency or facility he or she would like to use for his or her postacute care needs, case managers are often called on to assist their patients with identifying local services that meet their needs. As a consequence, the case manager, or other discharge-focused professional, presents prescreened or preferred agencies for patients to choose from. Given that most marketplaces harbor numerous agencies or facilities that offer similar services, much depends on the sales team’s ability to develop working relationship with those who oversee the discharge arrangements for patients coming from acute settings. For the LTC salesperson, developing a relationship with acute-based case managers can be complicated and, at times, difficult. Case managers and other discharge professionals are regarded as having one of the most complex and time-consuming positions in the acute care setting. Due to their influence over the referral process, case managers can expect to receive several (if not a dozen or more) visits form sales professionals daily. As a result, the time involved with managing so many visitors can be frustrating and influence their perception of sales persons as well as the business the salesperson is representing. As a result of the increasing number of salespeople, many hospitals have begun to eliminate or restrict individuals visiting the case managers directly. Some hospitals require that sales personnel should have gone through a process of registering as a certified vendor—in some cases through a third-party agency or vendor system, which may require criminal background checks, Health Insurance Portability and Accountability Act (HIPAA) clearance, and may also need required financial compensation for being a registered and approved vendor. Before a meeting may be granted with a case manager or discharge planner, an appointment must be made and the salesperson entered into the hospital vendor system to obtain a visitor’s badge. Sales professionals, who are not registered and/ or do not have an appointment, yet consequently “walk the floors,” run the risk of being excused from the hospital—in some cases, permanently. Occasionally, hospitals offer sales professionals the option of presenting an in-service to the discharge-planning team, generally at a regularly scheduled meeting or during particular blocks of time set aside for such a purpose. In-services are prime opportunities for an LTC business to present its services; however, obtaining one of these coveted slots can also be a challenge. Generally, a single individual or “gatekeeper,” is responsible for arranging and maintaining the in-service schedule. Finding out who this individual is (and establishing a relationships with him or her), is critical. In-services slots are generally limited and often scheduled months, if not a year or more, in advance. As a result, the sales professional needs to identify and develop a relationship with the scheduler in hopes of obtaining an audience. Case managers, discharge planners, and social workers who are based in the acute setting value LTC resources that are responsive, have positive community reputations, and are willing to accept difficult clients/patients in addition to more straightforward cases. As stated previously, the caseload that hospital-based case managers/discharge planners face is highly stressful. Successful salespeople are those individuals who seek to assist the case managers and make the process for referring, reviewing, and accepting (or declining) clients as streamlined as p ­ ossible.

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As an example, some more aggressive postacute rehabilitation centers have taken to creating full-time, clinical liaison positions wherein a representative is present in the acute setting, making determinations of acceptance immediately on site. Other companies have trained their sales staff to conduct acceptance or admission assessments in the field to increase the chances of a referral going through. Regardless of the approach, an organization should strive to make the process of referring as convenient and efficient as possible to meet demand. Although improving the convenience and response time of the referral acceptance process is important, case managers and discharge planners are also concerned with the reputation of a community resource or facility. Word of mouth (WOM) and community reputation highly influence the willingness of professionals and clients to refer and use services. As such, any agency or business needs to be aware of how other customers in the community, both professional and clientele, view their services and their company as a whole. Customer-satisfaction surveys are very useful tools in obtaining feedback and can be tailored to evaluate a business’s performance toward specific audiences as needed. Sales professionals should also routinely ask referral sources how satisfied they are with the services their companies are providing, and seek to identify any areas of concern (or other opportunities for growth) that should be addressed.

Physicians Physicians may be the first to identify and discuss options regarding patient care needs and potential services. Patients often place high value in their medical provider’s recommendations and rely on his or her recommendation for needed services. As such, physicians are a prime source of referrals for nearly every type of LTC business. Similar to the situation involving case managers/discharge planners, obtaining an audience with a physician may be challenging due to the inherent workload associated with the profession. Most physicians keep office hours and have a key staff member involved with managing his or her schedule. These “gatekeepers,” as they are referred to by professional salespeople, are often left to use their own discretion in setting sales appointments. Developing a relationship with him or her may take multiple visits before an audience may be granted. Also important is recognizing that in most cases, patients/clients often have numerous physicians involved in their care, including a primary doctor and possibly several specialists, depending on the individuals’ health needs. In the acute setting, a primary doctor may or may not have privileges or make rounds on patients when hospitalized. Primary medical responsibility may be diverted to a hospitalist or specialist who assumes care until discharge. Identifying what type of physician, his or her current role in the patient’s care, and the degree to which he or she has influence over making recommendations for services is an important distinction any agency or sales professional needs to determine for each client. Top-performing LTC businesses and agencies understand the complexity of the physician services their clients receive and many have developed programs or procedures in assisting with the facilitation of coordinating services as their customers move through the continuum of care. As an example, some medically based services such as skilled nursing facilities employ a method of actively communicating a patient’s progress during his or

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her rehabilitation to the various physicians involved in the patient’s care by verbal or written updates. Some progressive rehabilitation programs will also send a therapist to accompany a patient to a follow-up medical appointment to give a personal, professional report on the patient’s progress. This type of communication can have the positive effect of increasing opportunities of outreach and marketing of a business’s services, while simultaneously improving the coordination and quality of outcomes of the patient receiving services.

Case Study 2 Mrs. Brown, an 81-year-old woman, had been living at home alone when she sustained a fall getting out of the shower. After being taken to the hospital, it was determined that she had a hip fracture. Assigned to her medical care are a physician hospitalist, an anesthesiologist, and an orthopedic surgeon. Her primary physician, a general medicine physician, does not make rounds at the acute setting but has received an update from the hospitalist following her surgery. Given her living situation, the hospital team determines that a rehabilitative skilled nursing facility would be the most appropriate next step to facilitate her therapy and recovery. The skilled nursing facility accepts Mrs. Brown into their postacute care rehabilitation unit. On transfer to the skilled nursing facility, Mrs. Brown is assigned to the care of the skilled nursing medical director. After 3 weeks of being in the skilled nursing facility, Mrs. Brown has a follow-up appointment with the orthopedic surgeon who repaired her hip to review her progress and evaluate her weight-bearing status. After an additional 3 weeks of rehabilitation, Mrs. Brown is scheduled for discharge with a medical order for home health services, including a visiting nurse, physical therapist, and occupational therapist. Her primary physician would like to see Mrs. Brown 1 to 2 weeks after she returns home, and her orthopedic surgeon would like to see her again in 1 month. Discussion: What opportunities exist for a provider to assist and develop relationships with the physicians involved in Mrs. Brown’s care?

Families Many individuals who work in LTC are aware of the saying, “Every client comes with a family.” Although it may seem common sense to most, the implied message is that families are also “clients”—and can be a potential source of referrals. Families may be both formal and informal in nature and may comprise a network of persons, including next of kin, extended family, neighbors, friends, and social affiliations. The experience (and critique) of the quality of care and services provided must be closely monitored and actively seek to make those involved in the client’s care feel comfortable and confident in the services being provided. Families are, in many case, responsible for assisting their loved ones with choosing services when needs arise. In many areas of LTC, services are sought after an acute or critical event that often acts as a catalyst for finding and obtaining services. In cases wherein frail older adults are involved, families may be charged with making all necessary arrangements with limited or even no input from the potential customer. In this regard, families are the primary clients and decision makers for choosing services.

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Top-performing sales professionals and LTC businesses recognize the importance of professionally and ethically guiding families through the decision-making process as well as ensuring that operations support the family throughout the entire length of time services are being performed. The most common and recognizable type of process are “customer service” programs. These programs may vary by organization but generally include the following core requirements: •  Treating the client’s family with the same degree of regard as the clients themselves •  Systematic and measurable methods for measuring client/family satisfaction •  Having solidified processes for managing and resolving complaints or concerns •  Frequent staff training on the organization’s philosophy of customer service •  Methods for communicating the condition and progress of the client to those involved Any sold marketing or business plan should include approaches for working with and supporting families of the clients they serve. It is vital that businesses recognize that families are a continuous presence in the clients’ experience and may be intimately involved in the utilization of services throughout the LTC continuum. Families interface with other professionals, referral sources, as well as their own personal networks, including physicians, case mangers/discharge planners, ancillary agencies, friends, and coworkers. The experiences and customer service that families receive will influence their opinion to recommend (or not recommend) the service or agency to others and will greatly contribute to an agency’s reputation in the community.

Other Vendors A unique element in the LTC industry is that often a single client can be connected to multiple levels of care and services. In many cases, consumers use, either simultaneously, in progression, or in succession, multiple LTC services (Figure 10.2). The LTC industry is highly interconnected and top-performing agencies recognize this unique fact. As a result, top-performing businesses develop opportunities for networking and partnering with other organizations as a source of referrals and community business development. Some agencies develop formal or informal relationships with other agencies or vendors. Formal relationships can be seen in multiple arenas such as when an HMO requires a negotiated contractual agreement for its members. Informal relationships may consist of an agency having a “provider” list of ancillary services that are given to clients as a reference in making their own determination for other needs. Regardless of the formality of the relationship, agencies should nurture and develop working relationships with other LTC services in their area. As a prime example, skilled nursing facilities are a rapidly growing interim service for postacute rehabilitation. Nearly 2.5 million patients use skilled nursing care following an acute medical event for a short-term rehabilitative stay of less than 100 days (My InnerView, 2008). Often being at midpoint in a client’s needs, a skilled nursing or other LTC business has an opportunity to develop relationships not only with referring hospitals but also with assisted living communities, boardand-care homes, home health care agencies, and state/government services, among others, along the LTC continuum. It is important to note that some levels of care require that state and federally certified agencies provide a generalized list of all services that meet the client’s

10.  MARKETING AND CENSUS DEVELOPMENT  195

Skilled Nursing Rehabilitation Center Insurance Provider

Adult Day Care

Patient / Customer

Physician Services

Custodial Home Health Agency / IHSS

Medical Home Health Agency (PT, OT, ST)

Assisted Living / CCRC

FIGURE 10.2  Patient/customer relationships involved with long-term care providers. Note: CCRC, continuing care retirement community; PT, physical therapy; OT, occupational therapy; ST, speech therapy; IHSS, in home supportive services.

needs while not influencing the decision-making process. For example, patients whose care is being funded under a federal program (such as Medicare or Medicaid) are allowed by law to choose any participating agency that is a certified necessity for their particular needs and in which the client qualifies under program requirements—such as a skilled nursing facility, a home health agency, or durable medical equipment company. These laws are required by both state and federal governments and may be subject to either (or both) Stark and federal antikickback statutes, which govern the legal acceptability for agencies and providers regarding referrals and business dealings.

Stark Laws The federal Stark Law prohibits, with limited exceptions, a physician from making a referral to an entity, such as a hospital, skilled nursing facility, or home health agency, for the utilization of services if the physician, or an immediate family member, has a financial relationship with the entity. Under the Stark Law, the giving of nonmonetary compensation, such as expensive meals, gifts, or entertainment by a business to a referring physician may be considered creating a “financial relationship” under the Stark Law (Stark Law, 2010). Under the Stark Law’s nonmonetary compensation exception, the giving of nonmonetary compensation would not be deemed a prohibited “financial relationship” with the hospital if such compensation, given from a receiving business to a referring physician, does not exceed $359. In addition to allowing the provision of

196  II.  CURRENT ISSUES IN LONG-TERM CARE

nonmonetary compensation up to the prescribed $359 limit, the Stark Law permits an entity to provide one local medical staff appreciation event per year for the entire medical staff, such as a holiday party. However, any gifts or gratuities provided in connection with the medical staff appreciation event, such as door prizes, are subject to the limit of $359 (Stark Law, 2010).

Federal Antikickback Statutes Federal antikickback statutes are described under 42 USC §1320a-7b (b). Essentially, participants in any federal or state-funded program are prohibited from the following: Knowingly and willfully soliciting or receiving any remuneration (including any kickback, bribe or rebate) directly or indirectly, overtly or covertly, in cash or in kind, in return for referring an individual to a person for the furnishing or arranging for the furnishing of any item or service for which payment may be made in whole or in part under [Medicare] or a State health care program, in return for purchasing, leasing, ordering, or arranging for or recommending purchasing, leasing, or ordering any good, facility, service, or item for which payment may be made in whole or in part under [Medicare] or a State health care program. (Brunts & Lewis, n.d., p. 2) Although in some other areas of business, giving gifts or cash for referrals may be common practice, state and federal financial recipients are not allowed to accept or receive compensation for making or receiving referrals. Punishments for doing so are subject to criminal and or civil penalties, which may include felony charges, imprisonment, and up to $25,000 per incident and/or 5 years in prison. In addition, those programs that do break antikickback legislation may be subject to having federal or state payment refused as a result (Brunts & Lewis, n.d.). For example, a facility that accepts or provides payment for their placement on a “preferred provider list” would be subject to antikickback statutes. In addition, an ancillary provider that offers a vacation, a gift card, or product from a retail establishment could be considered breaking antikickback statutes. Providing discounts on noncovered state/federal items (such as durable medical equipment [DME] or co-pays) in exchange for anticipation of receiving covered items may also be suspect under law (Brunts & Lewis, n.d.). Essentially, ethical business practices need to be examined and adhere to current laws. Although establishing professional relationships within a community can be valuable in developing referrals, each involved party should have full disclosure in how each other refers business to one another and should check applicable laws before making any formal or informal agreements.

Employees and Internal Marketing Often underlooked by businesses is the power and influence employees have in furthering business development, generating increased referrals, and impacting an agency’s reputation. An employees’ perspective and interaction with the businesses’ services and their work environment can greatly impact both the outcome

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of the services the business provides as well as how the business is perceived in the community. Any solid marketing strategy must include addressing how employees fit into the larger equation of interacting with customers and potential clients. This incorporation of employees into the broader marketing strategy is a process commonly referred to as internal marketing (Cooper & Cronin, 2000). Internal marketing is the effort by a business to train and motivate its employees to provide better service (Cooper & Cronin, 2000). Providing employees with adequate training/education, resources to successfully carry out their job/duties, input and solicitation when addressing operation issues, as well as a responsive and fair leadership that focuses on individual development can contribute to increased job satisfaction and can increase the chance of employees having a positive perspective regarding the employer. Having employees who value the business they represent not only impacts performance (and outcomes) and the services provided but also increases satisfaction of the client served and the willingness to recommend the services to others (Cooper & Cronin, 2000). In addition to incorporating work satisfaction into marketing strategies, some employers also view each employee as an extension of the marketing team itself. Providing nonsales-focused employees with opportunities to learn basic customer service and manage initial customer inquiries can prove fruitful. Although not every employee can or should be required to manage the entire marketing or direct-sales process, establishing a business culture wherein employees are trained and recognized for their involvement in the sales process can impact census development and strengthen community reputation.

Community Networks and Professional Organizations Community networks and professional organizations are invaluable resources for any sales or marketing professional and exist in nearly any type of marketplace. Active participation in local and national organizations can help strengthen a business and the representing sales professional’s reputation in the local community as well as provide opportunities for outreach, business development, education, and knowledge about changes in one’s marketplace. Community networks tend to be localized, wherein larger professional organizations tend to be regional and/or nationally focused. Depending on the focus and participation involved in the organization, some organizations may be more valuable than others. Iteration of a business’s involvement among the multitude of possible organizations may depend on the business’s objectives and how those networks facilitate revenue and census development. For example, San Francisco, California, enjoys a magnitude of professional networks, including a very active Senior Roundtable (regional/local) and Case Management Society of America (regional/national). In San Francisco, Senior Roundtables tend to have a very high participation in community-based programs and services, whereas the Case Management Society of America has greater participation among hospital-based case managers, social workers, and discharge planners. Depending on where a business’s marketing and target segments are focused, participation in a professional networking group should be critically evaluated in terms of the commitment necessary to be an active and fruitful member, as well as the appropriateness of involvement when compared to business and census development.

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Advertising Today’s LTC marketplace has multiple approaches that businesses use to advertise their products and services. Common advertising methods may include varying types of print advertising, including collateral materials such as brochures, direct mailing, radio or television commercials, and the increasingly popular Internet advertising and social media. Collateral materials are the staple of most organizations’ advertising. Often it is the role of the businesses’ salesperson to ensure that customers and referral sources, such as case managers and physicians, are amply stocked with brochures describing the businesses’ services.

Collateral Materials In order for collateral materials to be an effective tool for both the salesperson as well as marketing, brochures or other literature should be readily identifiable with the businesses’ logo and branding, be concise in the information regarding the services the business wants to promote, and clearly have the information for making a referral present. Brochures that appear cluttered or have lengthy paragraphs with too many details are often ineffective and may turn away potential customers. Brochures and printed literature are also highly used in the common practice of direct-mailing campaigns. Many facility-based services such as assisted living or CCRCs, purchase direct-mailing lists that indicate where their targeted market segment resides. In this type of advertising, the intersection of psychographics and demographics comes into play in that the marketing objective is to qualify prospective customers through age, income, and residential zip codes by purchasing directmailing lists with this information in mind for outreach. Knowing that most potential clients are mined locally, it is important to keep track of zip codes that historically draw people to one’s business. However, market segment research needs to be ongoing as neighbors and those residing within targeted areas change overtime. If one assumes that certain areas (and zip codes) that have historically performed well will use a business’s services without current research, an LTC business may run the risk of poor responses to a direct-mailing campaign. As an example, the San Francisco Presidio (zip code 94123) had historically been a targeted area for several of the city’s premier CCRCs. Today, however, the average age has dropped dramatically since Lucas Films™ moved into the neighborhood in 2005, bringing hundreds of younger workers to the area whose median age is 35 years (Census Bureau, 2010). What was once a haven for older adults who sold their homes to finance their move and care in facility-based communities in San Francisco is no longer viable with direct impact on media placement and directmailing campaigns.

Radio/Television Radio and television are also becoming more popular with LTC business though the cost associated with such media can be prohibitive for many smaller or localized businesses. Radio and television can be effective in reaching large audiences

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and can further a business’s name recognition; however, such methods often reach a wide audience that may not necessarily coincide with appropriate market segments and may be ineffective in conveying a business’s product or service to viable customers.

Internet and Social Marketing Platforms Internet marketing is increasingly being use by businesses in LTC. Businesses may position their websites on search engines to facilitate increased traffic to their website, which, in turn, generates prospective clients. Social media methods such as Facebook, Twitter, and LinkedIn have expanded past the personal and have developed devoted business-focused “pages” that may be linked with other social media sites to market products and provide potential customers with greater access to explore a business’s services. Social media, as a plus, is also highly cost-effective and can be easily tailored to reach targeted market segments. As a negative, however, potential consumers using this form of media expect (if not demand) current information and regular updates or “posts” to a business’s page. Businesses that fail to keep their pages updated with current information may appear to be negligent and unreliable in the consumers’ mind, thereby negatively impacting its business image.

Marketing to Baby Boomers: Future Business for LTC Who Are the “Boomers”? The word itself defines the span of the baby to boom generation as described by Landon Jones in his 1980 book, Great Expectations: America and the Baby Boom Generation. Their sheer number, coupled with an equally staggering buying potential, has laid the burden of awe on this generation born between 1946 and 1964. Seventy-eight million strong, the “boomers” comprise 28% of the population in the United States, embodying over half of the purchasing power of over $2 trillion in assets (Thompson, 2008). This is a demographic that is used to spending, given their higher income level when compared to previous generations. They have a higher rate of home ownership (82% compared to 70% for the general population), want choice in decision making, are highly educated, love to travel—often in luxury, dine out four to five times a week, and spend more on health and personal care than any other age group (Bolt, 2007). As more boomer women work outside the home, the domestic role has lost some of its value to their identity so that paying for vendors to care for personal needs, from fitness trainers to financial planners, is very common. They earn money and also plan to enjoy it. Growing up during a time of dramatic social change and affluence, boomers assumed an optimistic attitude that the world will improve over time. They tend to reject traditional ways of thinking—being directly involved with the Civil Rights movement; feminism; lesbian, gay, bisexual, and transgender (LGBT) advancement; disability rights; and the right to privacy (“Baby Boomer,” n.d.). Due to the magnitude of this group, they are accustomed to having their interests addressed by astute product marketers from “almost the time they were conceived, reinforcing a sense of generational distinctiveness” (“Baby Boomer,” n.d.).

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This is also the first generation in Western countries to grow up with modern communication technologies such as television, the advent of the personal computer, and all the peripheral innovations that have evolved in the current era. As media “junkies,” the manner in which boomers consume information is unlike that of any previous generation. Items such as personal computers and mobile devices have become popular avenues for gathering information among the boomers’ generation. Impressive to be sure, but the thought of retirement and the use of LTC services has yet to seriously impact the mind-set of most boomers. Boomers tend to view themselves as younger than their actual age and many still avoid the complications and difficult discussion of aging and planning for it. However, the recent economic downturn forced many, including the boomer generation, toward introspection and thoughts regarding aging.

The Impact of the Economic Downturn of 2008 Wealthy or not, no one was exempt from the dramatic downturn in the economy in the fall of 2008. The tightening of credit, a roller-coaster ride in the stock market, job losses, and a shrinking real estate market are impacting all, including those seeking or on the verge of requiring LTC services. In fact, the 2011 Associated Press and LifeGoesStrong.com surveys show •  Boomers lost 60% of the value in their investments, delaying retirement •  Twenty-five percent plan on never retiring (Knowledge Networks, 2011)

So How Do You Market to the Boomers? Marc Freedman, founder of Civic Ventures and author of The Big Shift, Navigating the New Stage Beyond Midlife, discusses the profound social impact the boomers are creating through their sheer number and longevity. In this book, he discusses that the educated, informed, and experienced group of boomers may find themselves at 65 years old (the socially anticipated age of retirement); yet they fully acknowledge that they are not ready to retire at all. Some within this cohort may be ready to downsize or try something new, including professional retraining or even returning to educational institutions to pursue a latent educational desire or ambition (Freedman, 2011). With an extra 20 to 30 years ahead of them in “retirement,” Freedman challenges us to redefine aging by staying engaged and useful, and leveraging an entire lifetime of experience in this postretirement period that has variously been termed the third age, third act, second adulthood, late middle age, Indian summer, or encore phase— phrases that Marc Freeman has coined. By analyzing the impending market segments, positioning their products, and integrating their marketing strategies toward the future baby boomer consumer, some progressive facilities-based senior communities have aligned with or provide on-site courses for continued learning in retirement. In some cases, communities are strategically planning to build developments near college campuses, complete with transportation options that would engender more interest from a younger demographic, such as the boomers. From a sales perspective, this very informed generation consumes huge amounts of information when making major life decisions. Boomers take the time to research via the Internet and personal computers/mobile devices, and e-mail

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questions rather than pick up the phone—initially preferring less personal contact. The challenge then is to get them in the door. Some of the tried-and-true marketing tools, such as educational events, can be highly effective as long as they are not directly selling to the prospective resident. Communities, in order to address the boomers’ disdain for direct-selling approaches, are opting for methods such as holding informational seminars that empower decision making, yet build trust and feel safer than a “sales pitch.” This gives credulity to the speaker, making it easier for boomers to identify with the content as well as the business sponsor. Nonetheless, personal referral remains as strong with the boomer as with any other demographic. However, the promise of a longer life is one of the strong impediments to starting the research about “retirement” living and the challenges of declining health with age. Boomers are introduced to LTC services mostly through a friend, relative, or family member who has a need or expressed a desire to learn about senior care options and services. However, in some anomalous cases, a health or other issue presents itself and propels a prospective boomer customer toward needing to use services or exploring LTC services. Injury and acute health conditions have introduced boomers to the rapidly changing environments of rehabilitation/ convalescent centers, nursing homes, and even some assisted living communities that are moving away from the custodial-care model toward a short-term, postacute model of care. As a result, boomers are slowly being inducted into the LTC industry and are starting to formulate their perceptions and expectations on how services should work and operate, once they are truly ready to become full-time consumers of such services. Businesses can expect that boomers will maintain high expectation regarding the products and services they choose. Managing those expectations, within the realm of what is possible from a fiscal point of view, is an education process that starts with the marketing research (macro) and the direct customer interaction that salespeople experience as a part of their positions (micro). Boomers are highly skilled in identifying marketing values. As such, a business’s product positioning and market messages must be clearly articulated and seamless throughout the positioning and sales processes. The art of marketing to this demographic will be challenging, particularly as boomers are well aware that they very likely will be living longer than previous generations, are concerned that their assets will endure, but do not want to compromise on a rich palette of choice and services that will fit their expectations.

SUMMARY For business within the LTC industry, emphasis on marketing and sales will continue to be a critical aspect of any strategic marketing plan. Understanding how one’s business or services is differentiated and positioned comprises the foundation of an effective marketing campaign and can give salespeople a competitive edge when addressing potential customers. With the rapid changes the LTC industry is experiencing, businesses must be acutely aware of changes in the marketplace, think in creative ways, challenge conventional methods of doing business (including with whom), and understand the wants and needs of potential customers beyond the statistics of age, income, and so forth. Businesses that become complacent and too comfortable with the status quo run the likely risk of other businesses encroaching on market shares and losing revenue or seeing their census drop.

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REFERENCES American Marketing Association. (2012). Retrieved July 14, 2012, from www.marketingpower. com Armstrong, G., & Kotler, P. (2009). Marketing an introduction, (9th ed.). Upper Saddle River, NJ: Pearson Prentice Hall. Bolt, K. (2007). Retirement, the impact of baby boomers on the senior living market. Vienna, VA: Land Development. Brunts, E. M., & Lewis, A. E. (n.d.). Managing relationships: Manufacturers, institutional providers and the affiliated practitioners. Retrieved July 15, 2012, from Fraud and Abuse Laws: Federal Anti-Kickback Statutes: http://www.adea.org/InteractionGuidelines/Documents/taskforce/documents/Section2/(2.4.1)-Managing-Relationships.pdf Census Bureau (2010). Retrieved December 26, 2011, from http:// www.zip-codes.com/ zipcodes/94123/zip-code-94123-2010-census.asp Cooper, J., & Cronin, J. J. (2000). Internal marketing: A competitive strategy for the long term care industry. Journal of Business Research, 48(3), 177–189. Freedman, M. (2011, April 5). The big shift: Navigating the new stage beyond mid life. New York, NY: Public Affairs. Knowledge Networks. (2011, March 16). Boomers survey. Menlo Park, CA: Associated PressLifeGoesStrong.com Morrison Senior Living. (2012). Cornering the market: A strategic approach to driving occupancy, a voice to the silent generation, Part III. Atlanta, GA: Morrison Senior Living. My InnerView. (2008, May). The changing landscape from long term care to short term stay. Provider, pp. 1–3. Ruth, A. & Wysocki, A. (March, 2002, revised December 2012). Top sellers: Characteristics of a superior salesperson. Gainesville, FL: University of Florida, IFAS Extension. Retrieved December 26, 2012, from www.edis.ifas.ufl.edu/sn004 Stark Law. (2010). Retrieved July 15, 2012, from http://starklaw.org/ Thompson, M. (2008, September 23). Marketing targets baby boomers. Retrieved June 25, 2012, from http://www.lifewhile.com/money/17537774/detail.html Baby Boomer. (n.d.). In Wikipedia. Retrieved June 25, 2012, from http://en.wikipedia.org/ wiki/Baby_boomer Yee-Melichar, D., Renwanz-Boyle, A., & Flores, C. (2011). Assisted living administration & management: Effective practices and model programs in elder care. New York, NY: Springer Publishing Company.

11 FINANCING AND REIMBURSEMENT Mauro Hernandez

LEARNING OBJECTIVES On the completion of Chapter 11, the reader will be able to between formal or paid long-term services and supports •  Distinguish  (LTSS) and those that are informal or unpaid •  Understand changes in the availability, supply, and costs of different

formal LTSS options •  Understand  national spending trends for LTSS by various payment sources •  Discuss the main private financing options, including personal income,

savings, and private long-term care (LTC) insurance benefits as well as trends in out-of-pocket spending and insurance costs •  Become more familiar with the primary public financing options, including Medicaid, Medicare, and other smaller federal programs •  Understand who qualifies for Medicaid, what services are covered, and how service spending and availability varies by state •  Identify the major policy developments that are shaping the future financing of LTSS

A growing population of older Americans has a high likelihood of needing LTSS during their lifetimes due to increased longevity as well as the probability of living with a disability. Demand for LTSS has also been growing among nonolder adults with disabilities. Few recipients and their families are prepared for the high and growing costs of paid LTSS, which tend to be impoverishing. LTSS expenditures also represent a significant component of national health care spending and an ongoing concern for policy makers, given the substantial role of state and federal spending. LTSS financing is essential for providers to understand the economics of LTSS in terms of the various revenue sources available to sustain their ­organizations. Private and public spending, as well as their associated policies, can serve as both the ­drivers and constraints of industry changes over time. Understanding the ­challenges

203

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and opportunities of LTSS financing can allow operators to more readily adapt and grow in response to changes in financing conditions. This chapter discusses LTSS financing by first providing a brief overview of paid and unpaid LTSS options, industry changes during the last few decades, and cost comparisons for different options. The second section describes the range of private and public financing options, as well as spending trends and issues. The final section identifies current policy developments that are likely to drive future LTSS spending and influence the supply and demand of various service options. These include state-level efforts to rebalance public spending in favor of ­community-based LTSS, experiments with Medicaid-managed LTC, and selected provisions of the Patient Protection and Affordable Care Act (PPACA).

LTC SERVICES AND SUPPORT-INDUSTRY TRENDS What Is Out There and What Has Changed? LTSS include a range of “formal” service options that are paid by a combination of private and public funding sources as well as “informal” options that are unpaid. Historically, most people have received LTSS through informal and uncompensated sources, specifically their family caregivers and friends. Formal LTSS options are categorized by federal and state reimbursement policies as being either institutional or home- and community-based (HCB). Since the enactment of Medicaid in the mid-1960s, most public dollars have paid for institutional LTSS options, which include skilled nursing homes, intermediate care facilities, and facilities for individuals with mental retardation or developmental disabilities (MR/DD). Older population growth and public reimbursement policies fueled the rapid growth of mostly institutional LTSS options until the mid-1980s when federal Medicaid rules were changed that allowed states to fund HCB services (HCBSs) using federal waivers. Nursing facility growth has since been dampened by shifts in LTSS supply, consumer demand, and policy developments favoring HCBS options. The more recent growth of HCBS options has been fueled by entrepreneurial efforts and diversification activities within the private sector as well as growing interest in nursing home alternatives among consumers, policy makers, and researchers. HCBSs can be purchased and provided either in the recipient’s own home, at community locations, or in group supportive housing settings that are typically licensed. Examples of in-home services include personal care/homemaker support, companions, home-delivered meals, medication management, nursing, transportation, case management, and hospice. Other community-based services that are provided outside of one’s personal home or in licensed settings include adult day care, congregate meal sites, residential care/assisted living, adult foster homes, and respite care. There were about 4,600 adult day centers in the United States in 2010 serving 260,000 participants, which represented a 35% increase in supply and a 63% increase in utilization compared to estimates from 2002 (Mature Market Institute, 2010). About 1.7 million individuals received congregate meals at about 6,400 federally funded senior centers (U.S. Administration on Aging, 2010). As noted in Chapter  4, there were about 31,100 licensed residential care/assisted living settings in 2010, with a capacity to serve almost 1 million residents (Park-Lee et al., 2011). By comparison, there were 15,622 nursing facilities serving almost 1.4 million residents in 2009 (Harrington, Carrillo, Blank, & O’Brian, 2010).

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Despite the proliferation of a wide array of formal LTSS options, informal care from family and friends continues to represent the most common source of help that is uncompensated. Family caregivers are the only LTSS providers for two out of three older adults with disabilities living at home. The rest either receive paid help only (9%) or some combination of informal and formal care (26%; Doty, 2010). Futhermore, there is some indication that the proportion of family caregivers providing LTSS without additional paid support has actually increased during the last 20 years (Houser, Gibson, & Redfoot, 2010). This may be due to several factors, including the high cost of LTC, aversion toward or lack of information about formal LTSS options, underdeveloped public financing options, inadequate supply of service providers, as well as higher unemployment conditions in recent years.

How Much Do LTSS Options Cost and Who Pays? Annual LTSS costs for individual users are very high relative to household incomes and vary widely by service intensity and setting type. Nursing homes are the most expensive settings, largely due to the more intensive service capacity and operating costs (e.g., 24-hour nursing). In 2011, national average rates in a nursing home were over $87,000/year for a private room and $78,000/year for a semiprivate room. Average base rates for assisted living settings were almost $42,000/year. In-home care can also be costly if there is little or no family support available and service needs are higher. In 2011, average national private-pay rates for home health aides and homemaker/companions were $21 and $19/hour, respectively. Receiving 44 hours/week of home care (e.g., assistance with bathing, dressing, meal preparation, food, chores, etc.) would cost almost $46,000/year. Average national rate for adult day care was $70/day, which translates to $18,200/year assuming a typical attendance rate of 5 days/week. Higher amenities and greater service needs can result in higher costs across all service categories. Prices for each of these services vary considerably both between and within states (Mature Market Institute, 2011). Because annual household incomes also vary between and within states, LTSS can be less affordable in some states resulting in relatively fewer options for those in costlier states as well as more rapid depletion of personal savings. Figure  11.1 illustrates the relative affordability of LTSS across states by comparing median household incomes for people aged 65 or older, median private-pay rates in a nursing home, and median private-pay cost for 30 hours/week of licensed home health aide visits and then calculating a percentage of cost compared to income. In the five most affordable states, annual nursing home and home care costs average 171% and 69% of older people’s household income, respectively. By comparison, the five least affordable states had annual nursing home and home care costs that average 374% and 115% of older person’s household income, respectively. With LTSS costs exceeding average incomes by such a large degree, it should be no surprise that so many older adults eventually deplete their savings and come to rely on public payers to pay for their care (Reinhard, Kassner, Houser, & Mollica, 2011 ). As discussed in the next section, individuals pay for most of these services with their own personal resources unless family members are purchasing the services or they qualify for other financing options. Only about one in five longer term nursing home residents primarily pay for their own monthly costs using private resources, whereas most others rely primarily on Medicaid to cover their cost of care (Kasper & O’Malley, 2007). The reverse is true for assisted living residents who mostly pay with their own personal resources (see Chapter 4). By comparison, public payment sources represent

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Best state

Top 5 states average

All states median

Bottom 5 states average

Lowest state

500 444

Percentage

374

250

224 166

171

55

69

89

115

125

0 Median annual nursing home private-pay Median annual home care private-pay cost as a percentage of median household cost as a percentage of median household income, age 65+ income, age 65+ Top 5 states 1. District of Columbia

1. District of Columbia

2. Utah

2. Maryland

3. Missouri

3. Virginia

4. Kansas

4. Hawaii

5. Iowa

5. Wyoming

FIGURE 11.1  State variation: Private-pay nursing home and home health cost. Source: Reinhard et al. (2011). Data: AARP Public Policy Institute analysis of 2010 Genworth Cost of Care Survey and 2009 American Community Survey Public Use Microdata Sample.

over half of adult day service provider revenues (55%; Mature Market Institute, 2010). Payment data are not available for services paid directly by clients for non-Medicare home care; however, these services are financed by multiple public and private sources. HCBS options have grown more rapidly in states where Medicaid funds have enabled older adults with limited financial resources to qualify for these services.

Private Financing Options Most LTSS recipients rely on their own personal resources to secure needed services. Informal care represents most of the care that people with disabilities receive, typically by family and friends without compensation. The most recent estimates by AARP show that there were over 42 million caregivers in 2009 at any point in time and almost 62 million providing care at some time that year. The national estimated economic value of their unpaid help was about $450 billion. According to this study, this amount is greater than all Medicaid spending for health and LTSS, four times as much as Medicaid LTSS spending, and twice as much as all LTSS spending from private and public sources. For many family caregivers, this support takes a significant financial toll, which can include direct out-of-pocket spending, work accommodations, lost wages and retirement benefits, lost productivity, and higher health care costs (Feinberg, Reinhard, Houser, & Choula, 2011). When it comes to paid LTSS, the two main private financing sources are self-payment using personal income supplemented by savings and benefits from having a private LTC insurance policy.

11.  FINANCING AND REIMBURSEMENT  207

Self-Payment Out-of-pocket costs represented about 18% of national LTSS or about $43.5 billion in 2008 (O’Shaughnessy, 2010; see Figure  11.2). These costs mostly include direct payments for LTSS, such as for home care or nursing home care if not covered by a third party, such as Medicaid or LTC insurance. Indirect costs represent copayments for limited short-term skilled nursing or home health coverage provided by Medicare or private health insurance plans. Over half of those turning 65 are projected to use formal LTSS with average out-of-pocket costs of $35,000 for those who receive some Medicaid funded services and $38,600 for those who do not. Even among those who will receive Medicaid-funded LTSS, about 10% of those will spend more than $100,000 of their own money to pay for their care (Kemper, Komisar, & Alecxih, 2005 –2006). As noted previously, individual costs vary by setting type, intensity of service needs, and length of service. For example, the value of unpaid help for an individual averaging 18.4 hours of care/week worth $11.6/hour is about $11,100/year (Feinberg, Reinhard, Houser, & Choula, 2011). By comparison, market prices for assisted living and nursing home care in private units were about $42,000 and $87,000/year (Mature Market Institute, 2011). These costs vary widely both between and within states. Individuals who do not qualify for Medicaid, do not have LTC insurance or have exhausted their LTC insurance benefits, or do not qualify for other publicly funded LTSS must pay the total cost of care using their personal income and savings.

Private LTC Insurance Individuals may purchase LTC insurance policies as a way to protect themselves from the financial risks associated with high LTSS costs. In exchange for policyholders making regular premium payments, insurers provide covered benefits to individuals that reach a specified level of disability. Policies usually specify a maximum daily benefit (e.g., $150/day), a maximum coverage period (e.g., 4 years), and a ­predetermined

$22.3, 9%

$6.2, 3% $52.4, 21% $243.4 Billion Medicare

$43.5, 18%

Medicaid Out of Pocket Other Private Other Public

$119.0, 49%

FIGURE 11.2  Total LTC expenditures by source, 2008 (in billions). Note: LTC, long-term care. Source: O’Shaughnessy (2010).

208  II.  CURRENT ISSUES IN LONG-TERM CARE

maximum lifetime payment amount. Although earlier policies tended to cover only nursing home stays, current policies provide much broader coverage. Most plans help cover the cost of nursing homes, assisted living, home health, hospice, and respite care. They may also provide coverage for case management, homemaker, and medical equipment expenses. Typically, beneficiaries must need assistance with two or more activities of daily living (ADLs) for at least 90 days or have severe cognitive impairment. Policies can be purchased directly by individuals or through an employer-sponsored group plan (Tumlinson, Aguilar, & O’Malley Watts, 2009). As of 2007, payments from these policies represented only 7% of national LTSS spending, which reflects the limited penetration and demand for this financing option. After more than 15 years of strong growth, fewer than 11% of Americans aged 55 and older had LTC insurance policies in 2008. Coverage rates are higher for individuals who are older than 65 years (12%) or wealthier, 19% among those whose annual incomes exceeded $10,000. Coverage rates are much lower among African Americans (3%) and Hispanics (2%) aged 55 and older (Johnson & Park, 2011). Rates of private LTC insurance coverage vary considerably across states. With 300 policies in effect per 1,000 people aged 40 or older, Maine has the highest coverage rate, which is 10 times higher than the five lowest states. By comparison, national average coverage rates are about 44 policies per 1,000 people aged 40 or older (Reinhard, Kassner, Houser, & Mollica, 2011). One of the more significant barriers to more widespread use of private LTC insurance is its cost. Because premiums increase with age and younger adults are less motivated to purchase these plans, average costs tend to be relatively high. In 2005, the average premium for an individual between age 55 and 64 was almost $156/ month compared to over $195/month for someone between age 70 and 74. In recent years, premium prices have increased at a faster rate than inflation in response to preferences for more comprehensive benefits and the added cost of premium inflation protection. Product complexity and disqualifying preexisting conditions may also present barriers to purchasing LTC insurance policies (Mulvey, 2010). Nevertheless, the average age of LTC insurance policyholders seems to be decreasing and there are about 6 to 7 million policies currently in force (Life Plans, Inc., 2007).

Public Financing Options The cost of formal LTSS continues to be unaffordable for a growing number of older and disabled adults despite decreasing rates of poverty among older adults during the last several decades (Purcell, 2009). For those whose needs exceed what family caregivers can provide, high out-of-pocket expenses can exceed retirement income and deplete life savings. As a result, government plays a major role in purchasing LTSS on behalf of eligible individuals. In 2008, public payment sources comprised 66% of the $243 billion in nursing home and home health expenditures (O’Shaughnessy, 2010). The following provides an overview of the major public financing sources for LTSS starting with the largest programs.

Medicaid For individuals who do not have sufficient private resources to purchase LTSS directly, federal and state governments jointly finance these costs for eligible beneficiaries, primarily through the Medicaid program. In 2008, Medicaid financed the health and LTC needs of 60 million people in the United States, accounting for 14% of all U.S. health care spending and 32% of all nursing home care (Centers for Medi-

11.  FINANCING AND REIMBURSEMENT  209

care & Medicaid Services, 2010; Kaiser Commission on Medicaid and the Uninsured, 2010). Almost half of all formal LTSS costs in the United States are financed by Medicaid (O’Shaughnessy, 2010). Established in 1965 and ­authorized under Title XIX of the Social Security Act, this program provides health and LTSS coverage for eligible children, adults, seniors, and persons with disabilities. In 2007, older and disabled adults made up 25% of the 58 million Medicaid beneficiaries; however, their more intensive service needs made up 67% of the $300 billion in total Medicaid expenditures (Kaiser Commission on Medicaid and the Uninsured, 2010). Medicaid LTC costs are projected to increase from $64 billion in 2010 to $101 billion in 2030, largely in response to the growing population of older and disabled adults (The Lewin Group, 2010). Although this program is governed by federal statutes and regulations, there is a great deal of variability between states in terms of who qualifies for different services, what services and provider types are covered, how much providers receive for different services, how many individuals will be eligible to receive certain services, and how much money will be spent on various LTSS services. Each state’s share of Medicaid costs also varies although the federal share has historically been larger, about 57% of expenditures.

Who Qualifies? In order for Medicaid to cover an individual’s LTSS costs, they must meet fairly restrictive eligibility criteria that are established by each state (see Figure  11.3).

Within broad federal rules, states have considerable flexibility in determining who may qualify for Medicaid and what services they will receive. To qualify for LTSS, individuals must meet three major criteria: Income: A state may use numerous income eligibility pathways. In nearly all states, individuals may qualify for Medicaid if they have incomes that do not exceed the federal Supplemental Security Income (SSI) level ($674 per month for a single person in 2011, $1,011 for a couple). Several states have extended eligibility up to 100 percent of the federal poverty level (about $908 per month for a single person in 2011, $1,133 for a couple). About two-thirds of the states allow people with LTSS needs to have income up to 300 percent of SSI. States also vary in the extent to which they allow beneficiaries with higher incomes to qualify after “spending down” their incomes paying for health and LTSS costs. For example, Medicaid beneficiaries in nursing homes generally must contribute all their income (except for a small “personal needs allowance”—usually $30 to $50 per month) to pay for the services they receive, and Medicaid pays the remainder of the cost. Married beneficiaries also may protect some income to support a spouse who lives in the community. Assets: In most states, an individual may not have more than $2,000 in assets to qualify for Medicaid, although the home is generally considered an exempt asset. Many people enter a nursing home paying for services out-of-pocket. After exhausting their life savings, they may qualify for Medicaid. Married beneficiaries also may protect some assets for a communityresiding spouse. Functional Criteria: In order to qualify for LTSS, an individual must meet the state’s “level of care” (LOC) criteria. Each state develops its own standards. In some states, LOC is based primarily on limitations in ADLs or measures of cognitive impairment. In other states, specific medical criteria must be met. While it is difficult to compare states’ LOC criteria, it may be harder for low- or modest-income people with LTSS needs to qualify for services in states that use medical criteria than in states that use only ADL criteria.

FIGURE 11.3  Medicaid LTSS eligibility. Note: LTSS, long-term services and supports. Reproduced from Reinhard et al. (2011).

210  II.  CURRENT ISSUES IN LONG-TERM CARE

To meet financial eligibility criteria, individuals must be determined to be very ­low-income and have limited assets, such as savings, that are typically less than $2,000. There are multiple approaches that states have adopted for financially qualifying for Medicaid, which can adversely and differentially impact individual access to institutional or HCBSs (Walker & Accius, 2010). For example, the maximum income eligibility threshold for nursing home residents in some states is three times higher and therefore less restrictive than it is for HCBS recipients. Categorical needs criteria are met when individuals fit into a certain category (e.g., being older or disabled) and meet the state’s definition of medical or functional need. Functional eligibility criteria for Medicaid nursing home services also vary by state and can be more or less restrictive than for various HCBS options both within and between states (Hendrickson & Kyzr-Sheeley, 2008). State Medicaid programs are considered institutionally biased when eligibility criteria make it more difficult and less likely for individuals to receive needed LTSS in an HCBS setting than in a nursing home.

What LTSS Are Covered? According to federal law, Medicaid programs must include certain “mandatory” LTSS, which means that states must finance such service costs for all eligible beneficiaries. States may also choose to provide coverage so that beneficiaries may receive services from a range of other LTSS providers. These are either specified as optional services within the Medicaid state plan or as a service provided under an HCB waiver. According to the most recent report to Congress from the Congressional Research Service (Stone, 2010), Medicaid institutional and HCB LTSS include, but are not limited to, the following major categories1:

Mandatory Services •  Nursing Facility Care: State Medicaid programs must provide coverage for nursing facility care for beneficiaries aged 21 and over, which includes room and board, skilled nursing care and related services, rehabilitation, health-related care, as well as selected therapeutic services. •  Home Health Care Services: State Medicaid programs must provide home health services to nursing home–eligible beneficiaries. These services must be medically necessary and authorized by a physician as part of a written care plan. Covered services vary by state and include intermittent or part-time nursing services and personal care.

Optional Services •  Personal Care Services: States may choose to cover personal care services for eligible Medicaid beneficiaries. These services must be provided in the individual’s home or in other noninstitutional settings, as authorized either by a physician or as part of a plan of care. Typical services include assistance with

1  See

original source for other categories not listed, which includes nursing facility services for persons under age 21; inpatient hospital services and nursing facility services for persons aged 65 and older in institutions for mental diseases; case management or targeted case management; respiratory care for persons who are ventilator-dependent; and transportation.

11.  FINANCING AND REIMBURSEMENT  211

ADLs (e.g., bathing, dressing, eating, toileting) and instrumental activities of daily living (IADL; e.g., light housework, laundry, grocery shopping). States may cover consumer-directed personal care in which the beneficiary is responsible for employing and managing the caregivers’ responsibilities and schedule. •  Intermediate Care Facilities for People With Mental Retardation (ICFs/MR): States provide coverage of institutional care to people with MR and DD (developmental disabilities) in ICFs/MRs. Services include room, board, and a wide range of specialized health and rehabilitative services. •  Program of All-Inclusive Care for the Elderly (PACE): Such programs integrate all Medicare and Medicaid-funded services (health, medical, LTSS, social) under one program that is often based at an adult day or other community center. PACE clients receive service through a broad network of employed or contracted service providers with care plans developed and monitored by a large interprofessional team. •  HCBSs State Plan Option: States may choose to cover one or more HCB benefits for certain individuals with LTC needs and in selected parts of the state. Eligible individuals must meet the state’s level-of-need criteria and may not have incomes that exceed 150% of the federal poverty level. States may choose to use a level-of-need criteria that is less restrictive than it is for nursing home care. Total program size may be limited in terms of the maximum number of eligible beneficiaries. Furthermore, covered services are limited to homemaker/home health aide, personal care, adult day health, habilitation, respite care, day treatment or other partial hospitalization services, psychosocial rehabilitation services, and clinic services for individuals with chronic mental illness, although individual exceptions are permitted. •  Medicaid Home and Community-Based 1915(c) Waivers: States may choose to cover a very broad range of HCBSs to individuals in selected population categories who also meet the state’s level-of-need criteria for nursing home, ICF/MR, or hospital settings. Covered services may include, but are not limited to, such services as case management, in-home care (chores, personal care, home health aide), adult day care, habilitation, respite care, rehabilitation, day treatment or partial hospitalization services, and adult foster care, assisted living/residential care, and psychosocial rehabilitation. Payments are for services and may not include room-and-board costs. All states currently use these waivers for selected populations, including persons aged 65 or older, individuals with MR and DD, persons younger than 65 years with physical disabilities, persons with HIV/AIDS, persons who are medically fragile or technologically dependent, and persons with mental illness. Enrollment may be capped at specified levels and limited to selected geographic areas.

Medicaid HCBS Expansion and Variability Federal Medicaid regulations have historically treated costlier nursing home care as an entitlement, which requires all states to provide coverage for this service to eligible beneficiaries. HCBS have not been considered mandatory since states can choose whether or not to cover such services, often under more restrictive conditions. As a result, most Medicaid LTSS dollars have been spent on institutional care; however, HCBS expenditures have grown at a faster rate in recent years as has the number of people served. As shown in Figure 11.4, the proportion of all Medicaid LTSS spending for institutional care (nursing homes and care in ICFs/MR)

212  II.  CURRENT ISSUES IN LONG-TERM CARE

Home- and Community-Based Services Institutional Care $56.1 billion

$114.1 billion

24% 45%

76% 55%

1997

2009

FIGURE 11.4  Medicaid LTSS expenditures, 1997 and 2009. Note: LTSS, long-term services and supports. Source: Eiken, Sredle, Burwell, & Gold (2010).

decreased from 76% in 1997 to 55% in 2009. By comparison, the national percentage of Medicaid spending on HCBS nearly doubled during the same 12-year period. In terms of total growth, Medicaid institutional expenses grew by 47% between 1997 and 2009 compared to HCBS expenditures, which grew by 281%.

Medicare Individuals who are either aged 65 and older or permanently disabled are entitled to Medicare. Contrary to common belief, this federal health insurance program plays a very limited role in paying for LTSS. Although there is some disagreement about whether Medicare pays for any LTSS, basic coverage (Part A) does include limited nursing home care and limited home health care intended for postacute care as well as hospice care. Specifically, Medicare pays for up to 100 days of nursing home care for individuals needing skilled nursing or rehabilitation services following a recent hospital stay of at least 3 days. Such short-term stays are often the precursor for becoming a long-term resident of a nursing home or receiving LTSS at home. Medicare may also cover home health visits for part-time skilled nursing or therapy services for individuals who are homebound and according to a physician’s plan of care. Certain health conditions may extend the duration of Medicare-covered home health services; however, the benefit is intended to be short term following hospitalization (Kaiser Family Foundation, 2010). Medicare does not cover home care services for individuals who need ongoing help for physical or cognitive limitations alone. In 2008, Medicare’s LTSS spending was $52.4 billion, about 22% of all spending for LTSS (O’Shaughnessy, 2010). Despite recent Medicare reform developments, including expanded coverage for prescription drugs and chronic care and disease management initiatives, most reform proposals have not included provision of LTSS coverage under Medicare.

11.  FINANCING AND REIMBURSEMENT  213

Other Public Sources A much smaller portion of federal funding for LTSS comes from a variety of other sources such as the Administration on Aging and the Social Services Block Grant (SSBG) Program.

Older Americans Act Enacted by Congress in 1965, the Older Americans Act (OAA) receives very limited funds, considering its broad mission of helping older adults maximize their independence and ability to remain in their own homes and community-based settings while promoting a continuum of care (O’Shaughnessy, 2012). Federal funds that are authorized by the OAA are allocated by the Administration on Aging to State Units on Aging, which administer state programs through local Area Agencies on Aging. These funds are used to manage programs and purchase a wide range of services that community-dwelling seniors may access such as information and referral, transportation, senior center activities, LTC ombudsman, family caregiver support, adult day care, elder abuse prevention, legal services, home-delivered and congregate meals, and so forth. Recent appropriations have included awarding grants for developing and implementing disease prevention and health-promotion programs as well as “one-stop-shop” programs known as aging and disability resource centers. Such programs are intended to reduce public health care and LTC expenses through improved management of chronic illness, healthy behaviors and improved access to community-based LTSS. In some states, Area Agencies on Aging may also be responsible for providing eligibility screening, enrollment, and case management services to Medicaid waiver participants. OAA appropriations for fiscal year 2010 totaled $2.3 billion of which congregate meals ($441 million) and supportive services and centers ($368 million) were the largest programmatic categories (Colello, 2010).

Social Services Block Grants The SSBG Program (Title XX of the Social Security Act) is another funding source that states may use to provide community-based care for older and disabled adults. States have wide discretion over the use of these funds although restrictions do not permit payments for most room-and-board costs, nursing home care, and other categories. Limited information is available about services, users, and expenditures. However, states have used these funds in various degrees to pay for case management, adult day care, adult protective services, homemaker, chore, companionship, and other services for eligible children, disabled adults, and seniors. Services for children represented the largest proportion of funds, with child day care comprising 8% of expenditures compared to 0.6% for adult day care in 2006. Appropriations for the SSBG have been cut from $2.4 billion in 1982 to less than $1.7 billion in 2008 due to concerns about the program’s effectiveness and funding of social services through other federal programs (Committee on Way and Means, 2008). As shown in Table 11.1, there are several other key programs administered by federal agencies that also fund LTSS with different covered services and eligibility criteria.

214  II.  CURRENT ISSUES IN LONG-TERM CARE

TABLE 11.1  Other Public Programs for Long-Term Services and Supports Program

Services

Eligibility

Admin. Agency

Veterans Health Administration (VHA)

Includes nursing home (NH) care (community living centers, community, and state veterans homes), domiciliary care, medical, rehabilitative, respite, and hospice services; and home- and community-based care in noninstitutional settings such as home-based primary care, respite care, home hospice care, community residential care, purchased skilled home care, adult day health care, and homemaker/home health aide services.

VHA pays for NH care for veterans who require NH care and have either at least a 70% service-connected disability, who are rated 60% (or more) service-connected and who are unemployable or are considered permanently disabled, or who need NH care for a service-related disability. If space and resources are available, VA may also provide VA NH care to other veterans who do not fall into the categories listed above. Eligible persons may choose to receive their LTC services outside of NHs. All veterans enrolled in VA’s health care system are eligible for home and community-based longterm care services. Clinical indicators and conditions help determine the need for these services.

Department of Veterans Affairs, VHA

Department of Housing and Urban Development (HUD) Supportive Services Programs–Multifamily Service Coordinators, Resident Opportunities and Self-Sufficiency (ROSS) Service Coordinators, and Congregate Housing.a

Services available to residents may include the arrangement of transportation, meal services, housekeeping, personal care, medication management, and visits from nurses or other health care professionals. Some HUD-supportive services programs are available to all residents, whereas others target those residents with limitations in activities of daily living (ADLs).

Residents of HUDassisted housing who are either “elderly,” defined as residents aged 62 or older, or who meet the definition of “person with disabilities” are eligible for services. Not all HUD-assisted facilities, even those dedicated to older adult residents and residents with disabilities, receive service coordinator or congregate housing funds.

Department of Housing and Urban Development (HUD) Offices of Multifamily Housing (Service Coordinators and Congregate Housing) and Public and Indian Housing (ROSS Service Coordinators)

(continued)

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TABLE 11.1  Other Public Programs for Long-Term Services and Supports (continued  ) Program

Services

Eligibility

Admin. Agency

Developmental Disabilities Assistance and Bill of Rights Act (DD Act)

Supported living, case management, residential habilitation with 24-hr supervision, day habilitation services, transportation, specialized medical equipment and supplies, skilled nursing, behavioral services, mental health services, dental and vision services, among others.

Selected persons with developmental disabilities.

U.S. Department of Health and Human Services, Administration for Children and Families, Administration on Developmental Disabilities

State Vocational Rehabilitation (VR) Programs

Counseling and guidance, assessment, vocational training, postsecondary education, assistance with living expenses, personal assistance services, and job placement.

Individuals with physical U.S. Department of or mental impairment Education, Office of that results in a Special Education substantial impediment and Rehabilitation to employment and who Services require VR services to achieve an employment outcome. If a state is unable to serve all eligible individuals, priority must be given to servicing individuals with the most significant disabilities.

Centers for Independent Living (CILs)

An array of independent living services such as information and referral, independent living skills training, peer counseling, and individual and systems advocacy.

Individuals with disabilities and their informal caregivers.

Assistive Technology Act

Any item, piece of Certain states that equipment, or product improve the provision system, whether acquired of assistive technology commercially, modified, to individuals with or customized, that is disabilities of all ages used to increase, maintain, and their families. or improve functional capabilities of individuals with disabilities. It can range from relatively lowtech items, such as canes, walkers, magnifying glasses, or dressing aids to more high-tech equipment such as computer screen readers or power wheelchairs.

U.S. Department of Education, Office of Special Education and Rehabilitation Services U.S. Department of Education, Office of Special Education and Rehabilitation Services

Note: This list describes the major payers of LTC services but may not be comprehensive. aMany

of these programs focus on assessment and referral to outside community service organizations. Other HUD programs directly support the linkage of supportive services for elderly households residing in HUD-assisted properties. Reproduced from Stone (2010).

216  II.  CURRENT ISSUES IN LONG-TERM CARE

Current Policy Issues Given the large role that federal and state policies have in paying for LTSS, the following section provides an overview of the major policy developments that will impact LTSS providers and users in the near future. The three selected developments—state rebalancing efforts, Medicaid-managed LTC, and selected health care reforms—are all intended to control future cost growth for the public and for individuals.

State Rebalancing Efforts In the absence of a cohesive national policy for financing LTSS and the limited success of private financing solutions, most activity in LTSS financing has occurred at the state level. Anticipated growth in LTSS demand and cost, as well as state fiscal crises and concerns about Medicaid’s institutional bias have put increasing pressure on states to actively pursue strategies that expand access to HCBS and reduce nursing home use. Such state strategies fall into three types of activities that are either intended to (a) reduce barriers for Medicaid HCBS eligibility among clients, (b) divert or relocate LTSS users away from nursing homes to HCB settings, or (c) expand the supply of and coverage for HCBS options. For each LTSS beneficiary who is served in a nursing home, it is estimated that state Medicaid programs could serve three individuals for the same average cost in an HCB setting (AARP Public Policy Institute, 2009). Given that only five states spend more Medicaid dollars on HCBS than in nursing homes, there are considerable opportunities to rebalance public financing of LTSS. However, states also face a number of barriers to rebalancing LTSS systems. According to a report by the Centers for Health Care Strategies (Engquist, Johnson, Lind, & Palmer Barnette, 2010), these include •  Concerns that expanding access to HCBS will attract LTSS users, who would not have sought nursing home care, to use publicly funded services •  An inadequate supply of HCBS providers in rural and nonmetropolitan communities •  Federal policies that have historically not supported or have limited the expansion of HCBS except incrementally and with great difficulty •  Federal policy restrictions and state agency structures that make it difficult for states to create more LTSS delivery systems that are more integrated, and financing structures that target specific populations and remove eligibility barriers Provider reimbursement policies represent another major barrier to expanding HCBS. Specifically, there are no requirements that payment rates are adequate to cover HCBS costs or that they are periodically adjusted to reflect inflationary pressures from new regulatory requirements or other market factors. As a result, the adequacy of HCBS payments can erode over time and become too low to attract providers to serve Medicaid clients. Other identified barriers include the lack of integration between LTSS and acute care services, underdeveloped information technology systems, and stakeholder opposition from the nursing home industry, as well as labor unions and families in some cases. States that have aggressively pursued rebalancing efforts have done so by adopting one or more of the following policy strategies: •  Streamlining and improving processes for determining Medicaid HCBS eligibility and enrollment

11.  FINANCING AND REIMBURSEMENT  217

•  Expanding and incentivizing HCBS undermanaged care plans (discussed below) •  Improving state and local information technology for more timely and integrated information needs, service use, and case management capacity •  Expanding opportunities for greater consumer direction through programs such as those that allow beneficiaries to use a cash allotment for hiring and supervising their own direct-care workers for needed services.

Increased Interest in Medicaid-Managed LTSS Most states have historically paid for Medicaid LTSS on a fee-for-service basis. An increasing number of states provide these services through managed care plans, which receive a capitated monthly payment to cover all services that enrolled clients may need. According to an eight-state review of such programs, States perceive Medicaid managed long-term care (MMLTC) as a way to control the rapid growth of Medicaid long-term care costs, increase access to HCBS, facilitate budget predictability, limit the state’s financial risk, allow states to distance themselves from potential fallout on service decisions, and reduce fragmentation between acute care and long-term care or within the long-term care system. (Kane, Priester, Kane, & Milne, 2007, p. iii) The Arizona’s LTC system (ALTCS) was the first capitated LTSS Medicaid program in the United States that operated on a statewide basis. Compared to traditional payment systems, the state had realized considerable savings through conservative needs-based eligibility criteria that have constrained potential “woodwork” effects and capitation policies that have incentivized greater use of HCBS over nursing home care (Congressional Budget Office, 2004). In other states, ­Medicaid-managed LTSS plans are optional and/or only available in certain parts of the state. As of 2009, 13 states were delivering LTSS through managed care plans, most of these with limited penetration, considering that only three states had programs whose expenses accounted for more than 40% of Medicaid spending (The Scan Foundation, 2012). Depending on how much risk the managed care plan assumes for nursing home expenses, Medicaid-managed LTSS plans may reduce the use of institutional services and increase access to HCBS compared to fee-for-service programs (Kaiser Commission on Medicaid and the Uninsured, 2011a). Nevertheless, numerous states are moving to either expand their managed LTSS programs or integrate LTSS with medical services.

LTSS Reforms in the PPACA The Patient Protection and Affordable Care Act of 2010 provided states with new and expanded tools to rebalance their Medicaid LTSS delivery systems in favor of more HCBS and less institutional care. According to Barth, Klebonis, and Archibald (2011), several PPACA provisions were designed to increase Medicaid HCBS benefit options, expand eligibility criteria, and incentivize states to shift their LTSS budgets to noninstitutional settings. Major provisions include the following: •  The Community First Choice State Plan Option (1915(k)) will allow nursing home eligible beneficiaries with higher incomes to receive community-based attendant

218  II.  CURRENT ISSUES IN LONG-TERM CARE

services and supports while also receiving a 6%-point increase in their federal matching rate for these services. •  The Medicaid Home and Community-Based Services State Plan Option (1915(i)) amends a previously established program that allows states to include HCBS as an optional benefit by modifying the eligibility criteria and the range of benefits provided under this program option. •  The Money Follows the Person (MFP) demonstration, which assists eligible Medicaid beneficiaries’ transition from institutional settings to the community, was extended through 2016. •  The State Balancing Incentive Payments Program provides new financial incentives for states to shift Medicaid beneficiaries out of nursing homes and into community-based settings. Specifically, eligible states can receive additional federal matching funds for HCBS if they meet certain targets and adopt structural reforms for increasing nursing home diversions and HCBS access. One of the more promising developments for LTSS financing since Medicaid’s enactment was the creation of the community-living assistance services and supports (CLASS) program, a new voluntary federally administered insurance program. This program was designed to provide a cash benefit to eligible LTSS users without using taxpayer funds. Average daily benefits were designed to start at $50/ day, which would supplement individual resources to pay for home care, nursing homes, and assisted living facilities. This cash benefit would have reduced Medicaid dependence by curtailing asset spend-down. The CLASS Act was repealed in early 2013 and the commission of LTC was established to make recommendations to Congress about LTSS financing.

SUMMARY The aging of the population and increasing disability rates in the United States will continue to drive higher rates of LTSS utilization and spending. In the absence of a comprehensive national plan for insuring LTSS costs, recipients first use their own private resources to purchase needed services and eventually rely on public assistance, typically Medicaid. Federal and state reimbursement policies have historically favored care in nursing homes although more recent policy developments have sought to expand Medicaid funding for community-based service options. ­Private-sector solutions have included developing a growing supply of nursing home alternatives, such as assisted living, home care, and adult day care, which are more affordable but still expensive (Yee-Melichar, Renwanz-Boyle, & Flores, 2011). Private LTC insurance has also expanded in recent decades yet continues to play a relatively limited role in LTSS financing, partly due to increasing costs. One growing concern is that public reimbursement policies have inadvertently produced inequitable differences in the ability of lower income individuals to access preferred HCBSs and receive quality care (Smith & Feng, 2010). This is partly because Medicaid continues to have an institutional bias in most states, reflected in marked differences in eligibility, available services, total spending, and access controls for HCBS. Nevertheless, state Medicaid HCBS programs continue to grow, whether in terms of the number of participants, overall spending, and per person spending (Kaiser Commission on Medicaid and the Uninsured, 2011b). It will be important for various LTSS stakeholders to continue monitoring and advocating for changes in financing policies to ensure a more equitable system for delivering desirable and high-quality care.

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REFERENCES AARP Public Policy Institute. (2009). Providing more long-term services and supports at home: Why it’s critical for health reform. Washington, DC: Author. Barth, S., Klebonis, J., & Archibald, N. (2011). Long-term services and supports opportunities in the affordable care act. Hamilton, NJ: Center for Health Care Strategies. Centers for Medicare & Medicaid Services. (2010). National health expenditure accounts. Washington, DC: U.S. Department of Health and Human Services. Colello, K. J. (2010). Older Americans Act: Funding. Washington, DC: Congressional Research Service. Committee on Way and Means. (2008). Green book, section 10—Title XX Social Services Block Grant Program. Washington, DC: U.S. House of Representatives. Congressional Budget Office. (2004). Financing long-term care for the elderly. Washington, DC: Author. Doty, P. (2010). The evolving balance of formal and informal, institutional and non-institutional long-term care for older Americans: A thirty-year perspective. Public Policy & Aging Report, 20(1), 3–9. Eiken, S., Sredle, K., Burwell, B., & Gold, L. (2010) Medicaid long-term care expenditures in FY 2009. Thomas Reuters. Engquist, G., Johnson, C., Lind, A., & Palmer Barnette, L. (2010). Medicaid-funded long-term care: Toward more home-and community-based options. Hamilton, NJ: Center for Health Care Strategies, Inc. Feinberg, L., Reinhard, S. C., Houser, A., & Choula, R. (2011). Valuing the invaluable: 2011 update, the growing contributions and costs of family caregiving. Washington, DC: AARP Public Policy Institute. Harrington, C., Carrillo, H., Blank, B., & O’Brian, T. (2010). Nursing facilities, staffing, residents, and facility deficiencies, 2004 through 2009. San Francisco, CA: Department of Social and Behavioral Sciences, University of California, San Francisco. Hendrickson, L., & Kyzr-Sheeley, G. (2008). Determining Medicaid nursing home eligibility: A survey of state level of care assessment. New Brunswick, NJ: Rutgers Center for Health Policy. Houser, A., Gibson, M. J., & Redfoot, D. (2010). Trends in family caregiving and paid home care for older people with disabilities in the community: Data from the National Long-Term Care Survey. Washington, DC: AARP Public Policy Institute. Johnson, R. W., & Park, J. S. (2011). Who purchases long-term care insurance? Washington, DC: Urban Institute. Kaiser Commission on Medicaid and the Uninsured. (2010). Medicaid: A primer. Washington, DC: The Henry J Kaiser Family Foundation. Kaiser Commission on Medicaid and the Uninsured. (2011a). Examining Medicaid managed long-term service and support programs: Key issues to consider. Washington, DC: The Henry J. Kaiser Family Foundation. Kaiser Commission on Medicaid and the Uninsured. (2011b). Medicaid home and community-based services programs: Data update. Washington, DC: The Henry J. Kaiser Family Foundation. Kaiser Family Foundation. (2010). Medicare: A primer. Washington, DC: Author. Kane, R. L., Priester, R., Kane, R. A., & Milne, D. (2007). Managed long-term care and the rebalancing of state long term care systems. Washington, DC: Centers for Medicare & Medicaid Services. Kasper, J., & O’Malley, M. (2007). Changes in characteristics, needs, and payment for care of elderly nursing home residents: 1999 to 2004. Washington, DC: The Henry J. Kaiser Family Foundation. Kemper, P., Komisar, H. L., & Alecxih, L. (2005–2006). Long-term care over an uncertain future: What can current retirees expect? Inquiry, 42, 335–350. The Lewin Group. (2010). Medicaid and long-term care: New challenges, new opportunities, and implications for a comprehensive national long-term care strategy. Retrieved from http://www .lewin.com/publications/Publication/411. Life Plans, Inc. (2007). Who buys long-term care insurance? A 15-year study of buyers and nonbuyers, 1990–2005. Washington, DC: America’s Health Insurance Plans.

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Mature Market Institute. (2010). The MetLife national study of adult day services. Westport, CT: MetLife. Mature Market Institute. (2011). Market survey of long-term care costs. Westport, CT: MetLife. Mulvey, J. (2010). Factors affecting the demand for long-term care insurance: Issues for Congress. Washington, DC: Congressional Research Service. O’Shaughnessy, C. (2010). The basics: National spending for long-term services and supports. Washington, DC: National Health Policy Forum. O’Shaughnessy, C. (2012). Older Americans Act of 1965: Programs and Funding. Washington, DC: National Health Policy Forum. Park-Lee, E., Caffrey, C., Sengupta, M., Moss, A. J., Rosenoff, E., & Harris-Kojetin, L. D. (2011). Residential care facilities: A key sector in the spectrum of long-term care providers in the United States. Washington, DC: National Center for Health Statistics, Centers for Disease Control and Prevention, U.S. Department of Health and Human Services. Purcell, P. (2009). Income of Americans aged 65 and older, 1968 to 2008. Washington, DC: Congressional Research Service. Reinhard, S. C., Kassner, E., Houser, A., & Mollica, R. (2011). Raising expectations: A state scorecard on long-term services and supports for older adults, people with physical disabilities, and family caregivers. Washington, DC: AARP. Smith, D. B., & Feng, Z. (2010). The accumulated challenges of long-term care. Health Affairs, 29(1), 29–34. The Scan Foundation. (2012). Data Brief: Medicaid managed long-term services and supports ­spending. Long Beach, CA: The Scan Foundation. Stone, J. (2010). Long-term care (LTC): Financing overview and issues for Congress. Washington, DC: Congressional Research Service. Tumlinson, A., Aguilar, C., & O’Malley Watts, M. (2009). Closing the long-term care funding gap: The challenge of private long-term care insurance. Washington, DC: The Henry J. Kaiser Family Foundation. U.S. Administration on Aging. (2010). Fiscal year 2010 profile of state older Americans act programs. Washington, DC: U.S. Department of Health and Human Services Walker, L., & Accius, J. (2010). Access to long-term services and supports: A 50-state survey of Medicaid financial eligibility standards. Washington, DC: AARP Public Policy Institute. Yee-Melichar, D., Renwanz-Boyle, A., & Flores, C. (2011). Assisted living administration & management: Effective practices and model programs in elder care. New York, NY: Springer Publishing Company.

12 ANTICIPATING AND MANAGING LITIGATION AND ARBITRATION IN LONG-TERM CARE Christopher Cherney Denise A. Platt

LEARNING OBJECTIVES On the completion of Chapter 12, the reader will be able to the frequency and cost of legal claims against long-term care •  Discuss  (LTC) providers •  Describe the reasons clients (plaintiffs) or their agents file legal claims

and demand arbitration against LTC providers (defendants) •  Define key medicolegal terms, including duty, breach, standard of care,

causation, damages, and negligence •  Cite legal cases—both for and against plaintiffs and defendants—that

highlight common themes addressed in LTC litigation and arbitration •  Describe the basic elements of a legal claim made against an LTC

provider and detail common legal strategies employed by plaintiff and defense attorneys •  Detail  effective strategies and protocols that LTC providers might employ before adverse client outcomes may occur, so as to (a) promote client health, safety, and satisfaction; and (b) mitigate the risks associated with potentially adverse outcomes, including litigation and arbitration

LTC providers in the United States provide care and services to millions of persons, most of whom require assistance with some activities of daily living, including eating, dressing, transferring, ambulating, communicating, grooming, and voiding. For example, more than 4,600 adult day health centers care for 260,000 persons who require assistance and/or supervision during the day (National Adult Day Services Association, 2011). Approximately 5,000 hospices provide care to more than 1.45 million persons who are dying (National Hospice and Palliative Care Association, 2009).

221

222  II.  CURRENT ISSUES IN LONG-TERM CARE

Some 16,000 U.S. nursing homes care for 1.5 million dependent residents (Center for Medicare & Medicaid Services [CMS], 2009), and 11,000 ­Medicare-certified home health agencies annually serve 3.4 million clients across 122 million discrete home visits (CMS, 2011a). For millions of clients, U.S. LTC providers generally provide competent, compassionate care, and many clients are satisfied with LTC providers. For example, satisfaction surveys indicate that approximately 85% of nursing home residents would recommend their nursing home (My InnerView, 2010), and 96% of hospice clients are satisfied with the frequency of pain treatment (CMS, 2011b). At the same time, for a variety of reasons, some LTC clients at times express dissatisfaction with LTC providers or experience what they consider to be undesirable, adverse outcomes. On occasion, clients suffer serious injuries, or die unexpectedly while receiving care or services from an LTC provider. In the wake of what may be perceived to be negative outcomes, a small percentage of LTC clients litigate or arbitrate claims of negligent care, reckless care, and wrongful death and demand remedies, namely, compensation. In turn, LTC providers must respond to—and defend themselves against—these claims. This chapter describes the scope of litigation and arbitration in LTC, defines common legal terms, and describes the common elements of legal complaints made against LTC providers. The chapter concludes by elucidating some strategies LTC providers can implement in advance of unanticipated, adverse outcomes to mitigate litigation risk as well as to promote client health, safety, and satisfaction.

LEGAL CLAIMS AGAINST LTC PROVIDERS The Frequency of Legal Claims There have been few research studies examining legal claims against LTC providers (Aon Risk Consultants, Inc., 2001–2011; California Advocates for Nursing Home Reform [CANHR], 2003; Insurance Services Office, 2002; Stevenson & Studdert, 2003). The available research indicates that about 1% of LTC clients file a legal complaint against an LTC provider. Across states profiled, a 2011 study concluded that Texas appeared to have the lowest rate of claims, at approximately 0.45% of clients served, whereas West Virginia had the highest rate, at 1.29%. States with so-called tort reform (Chicotel, 2011)—that is, those that limit noneconomic damages to $500,000 or less—averaged a slightly lower rate of legal claims—at 0.86%—than states without it, which averaged a claims rate of 0.93% (Aon Risk Consultants, Inc., 2011). On a related note, the vast majority of U.S. patients who suffer a medical injury, including serious injuries, do not file lawsuits or demand arbitration (Studdert et al., 2006). The U.S. health care system also does not devote inordinate resources to managing claims of medical malpractice. A 2004 Congressional Budget Office study concluded that malpractice costs account for less than 2% of health care spending (Congressional Budget Office [CBO], 2004). LTC clients infrequently pursue legal claims for a variety of reasons. Some clients fear retaliation from long-term care providers on whom they must rely for ongoing care or services. Other clients or their families may be unaware that a medical error or injury has even occurred (Studdert, Mello, Gawande, Brennan, & Wang, 2007). Some clients are disabled by communication or cognition deficits and are unable to access legal services to bring claims. Moreover, clients older than 75 years are

12. LITIGATION AND ARBITRATION IN LONG-TERM CARE  223

­ arkedly less likely to file legal claims (Studdert et al., 2000), and medical malpractice m cases can stretch across years, frequently longer than the remaining life expectancy of some older adult clients (Studdert et al., 2006). Some states allow legal claims for a deceased client’s predeath pain and suffering. In Texas, medical malpractice claims filed by elders settle on average 3.5 years after injury (Paik, Black, Hyman, Sage, & Silver, 2010). Some older adult clients are unable to secure attorneys willing to pursue a legal claim against an LTC provider. Plaintiff attorneys generally bear all expenses incurred in mounting a legal action and do not get paid until a case is settled or until funds awarded by a jury or arbitrator can be collected. Because LTC cases can be costly—frequently due to the high cost of expert witnesses—many attorneys accept only those few referred LTC cases with manifestly egregious outcomes, or a high likelihood of a quick financial settlement. Moreover, in cases in which economic damages apply, older adult clients no longer earning optimal incomes represent lower potential monetary damages—as well as attorney fees (Bragg, 1997; Hemp, 1994).

Outcomes That Lead to Claims Overwhelmingly, LTC legal claims are made for adverse outcomes. Nationally— for settled cases with liability insurance payouts of less than $1 million—falls with injury is the most common type of claim against LTC providers, with an average payout of $131,000. However, acquired pressure ulcer/wound cases account for more claim dollars in the aggregate and a higher average claim payout than all other claims, at $265,000 (see Table 12.1). For nursing home claims alone, including those in excess of $1 million, the average claim payout is slightly more than $400,000, and wrongful death accounts for more than half these claims (Stevenson & Studdert, 2003).

Falls With Injury Falls with injury frequently occur when frail clients attempt to ambulate without assistance, fall, and sustain hip, back, leg, arm, shoulder, wrist, or rib fractures, frequently necessitating hospitalization and surgery. Legal claims for falls with injury frequently specify damages related to postinjury pain and suffering. TABLE 12.1  6,300 Long-Term Care Claims Limited to Total Losses of Less Than $1,000,000 Type of Claim

Percentage of Claims Filed

Percentage of Claim Average Claim Payout Payouts (in Dollars)a

Fall with injury

27

22

131,000

Unspecified/unknown

23

14

97,000

All other

22

23

162,000

Pressure ulcer/wound

17

29

265,000

Treatment/procedure adverse outcome

11

12

169,000

100

100

159,000

Note: aIncludes payments to plaintiffs and to their attorneys. Source: Aon Risk Consultants, Inc. (2011). Used with permission.

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Case Study 1: Donegan v. Embassy Nursing Home At 11 a.m. on July 18, 2005, in Wilmington, Illinois, 53-year-old nursing home resident Martin Donegan fell in another resident’s room. After the fall, his blood pressure was noted at 189/111. He was put back to bed, but nursing staff failed to perform neurological checks, as required per facility policy. At 2 a.m. the following morning, Mr. Donegan was found unresponsive and was transferred to an acute care hospital, where he died the same day of a massive intracranial hemorrhage. Plaintiffs sought $3 million in damages. At trial, the defense argued that Mr. Donegan died as the result of an undiagnosed ruptured aneurysm, not the fall. The jury returned a unanimous verdict for the defense, unable to link the facility’s actions or inactions as the cause of Mr. Donegan’s death (QPWB Gets Defense Verdict, 2011).

Pressure Ulcers Pressure ulcers—also known as decubitus ulcers, bed sores, wounds, and pressure sores—can develop when frail clients are immobilized, even for short periods of time. Contributing factors can include, but are not limited to, malnutrition, dehydration, severe pain, immobility, vascularization disorders, diabetes, depression, and obesity. Lawsuits or demands for arbitration related to pressure ulcers usually allege that the client would not have developed ulcers had the provider not negligently—or recklessly—breached its duty to abide by the standard of care.

Case Study 2: Dean v. Country Crossing Assisted Living/Hutcheson Home Health Care In 2006, a Georgia jury awarded $9.5 million to the family of Charlotte Pauline Dean, a 51-year-old woman with cerebral palsy. Ms. Dean was a client of both Country Crossing Assisted Living and Hutcheson Home Health Care. Each LTC provider was found liable for infected pressure ulcers that caused Ms. Dean’s death. After a weeklong trial, the jury awarded $5.5 million for wrongful death and $4 million for pain and suffering (Swartz, 2011).

Wrongful Death Wrongful death legal actions can include claims for loss of consortium (i.e., companionship) by the surviving spouse or family, as well as intentional or unintentional infliction of emotional distress on surviving family members, including those who may have witnessed the decline and/or death of the deceased LTC client.

Case Study 3: Dora Taylor v. Nexion Health at Garland d/b/a Castle Manor Nursing Home At 9 a.m. on March 18, 2002, near Dallas, Texas, Ms. Taylor, an 89-year-old nursing home resident, was noted unresponsive by nursing staff. Ms. Taylor’s physician was notified but did not respond for 4 hours. Ms. Taylor showed improvement during the day but later that evening declined and was transferred to an acute care hospital, where she was diagnosed with sepsis, dehydration, and renal failure. She died 3 days later. Plaintiffs sought $1 million in damages for wrongful death. On April 29, 2005, after 7 hours of deliberation, a jury found the nursing home not guilty of negligence (Dora Taylor v. Nexion Health, 2005).

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Other Claims Other legal claims may include client-on-client assaults, physical abuse of a client by an employee of a provider, the unwarranted administration of physical or chemical restraints, sepsis, airway obstruction or choking, elopement (i.e., a client wanders away from a provider site or while in a provider’s custody), medication errors leading to serious injury or death, injuries not related to falls (e.g., being dropped from a mechanical lift and sustaining serious injury), isolating a client as punishment, and financial abuse.

Case Study 4: Vukoye v. Huntington Eldercare, Inc. In October 2010, in Orange County, California, the family of Sylvia Vukoye sought $500,000 in damages from an assisted living facility for allegedly overdosing their mother with Remeron, an antidepressant and appetite stimulant. The family claimed that, after administering four times the prescribed dose of Remeron to Ms. Vukoye, the facility administrator willfully falsified medication administration records. After a 1-week trial, a jury found no liability (Beach, Whitman, & Cowdrey, LLP, 2010).

Case Study 5: Estate of Ruby Larson v. Pheasant Pointe On July 23, 2007, Ms. Larson, a 75-year-old with dementia, wandered away from Pheasant Pointe Retirement and Assisted Living Residence. She was never seen alive again. She had previously eloped from the facility three times, once for more than 4 hours, necessitating a call to local police. On May 20, 2010, her remains were discovered in blackberry bushes located a quarter of a mile from the facility. After a 5-week trial in Multnomah County, near Portland, Oregon, a jury awarded $821,000 to the family, which had alleged the facility failed to provide adequate care and supervision to Ms. Larson (Karas, 2010).

Client Frustration Can Fuel Legal Claims Research has long demonstrated that patients sue physicians for ineffective communication, among other factors (Beckman, Markakis, Suchman, & Frankel, 1994; Hickson et al., 1994). Similarly, some clients sue LTC providers because of perceived failures of communication. Many clients and families who choose to sue providers report initially not intending to file suit or to demand arbitration. They do sue, however, when their pleas for understanding, explanation, or apology are repeatedly met with perceived provider indifference, resistance, or defensiveness. One California nursing home attorney uses the tag line—developed in consultation with a marketing consultant—“the dignity of being heard.” Provider strategies for actively engaging clients who might express concerns are addressed later in this chapter.

Arbitration Arbitration is a process by which disputes between two parties are resolved by an impartial arbitrator or arbiter—similar to a judge—whose decisions are binding. Arbitration—a form of alternative dispute resolution (ADR)—operates outside the court system. Arbitration attempts to avoid costly and lengthy litigation. As compared to litigation, arbitration typically is less formal—especially with respect to rules of evidence—and more flexible, especially with respect to ­scheduling

226  II.  CURRENT ISSUES IN LONG-TERM CARE

of depositions and testimony. It is the subjective experience of many LTC providers that arbitration is less hostile than litigation. A 1992 U.S. General Accounting Office (GAO) report to Congress on arbitration noted that private medical insurance cases lasted, on average, 19 months, versus 33 months for litigated cases. The shorter life cycle of arbitrated cases correlated, in the aggregate, with lower overall costs to disputing parties (GAO, 1992). The GAO report also concluded that defendants generally prevailed more often in arbitration than litigation. Other studies, however, suggest strongly that arbitration favors plaintiffs with respect to decisions as well as payouts (Rutledge, 2008). In LTC environments, the arbitration process typically requires that clients— or their legal agent(s)—sign a predispute arbitration agreement. Generally, these agreements must comply with the requirements of the Federal Arbitration Act. Not uncommonly, arbitration agreements have been contested in court. Signatories or their agents frequently have argued that a predispute arbitration agreement was not sufficiently explained to an LTC client or was signed by an elder who was under duress or unable to understand the arbitration agreement’s content and import. Many state and federal courts have invalidated arbitration agreements due to the processes by which those agreements were signed. Additionally, by some state statutes, some legal claims are not subject to arbitration. In California, for example, a claim for violations of resident rights is not subject to arbitration for public policy reasons.

Case Study 6: Koricic v. Beverly Enterprises Nebraska, Inc. In 2007, Manda Baker sustained injuries at Beverly Hallmark, a nursing home in Omaha, Nebraska. Her son Frank Koricic sued Beverly for breach of duty, negligence, and breach of contract. Beverly asked the court to compel arbitration, which request was granted. On appeal, the Nebraska Supreme Court ruled that Mr. Koricic lacked the authority to sign the arbitration agreement provided by Beverly Hallmark because that agreement was not a condition of admission to the nursing home (Koricic v. Beverly Enterprises Nebraska, Inc., 2009).

The Impact of Legal Claims on LTC Providers Given the low frequency of formal legal claims made against LTC providers, many LTC professionals may never in the course of their careers participate in a legal proceeding. Nevertheless, many long-term providers remain perpetually aware of the potential impact of litigation and know other providers, physicians, administrators, or directors of nursing who have been involved in contentious or drawn-out legal proceedings with dissatisfied clients and their legal agents. Frequently, LTC providers are fearful, anxious, and frustrated about the processes of litigation and arbitration. Adding to provider anxieties and frustrations is uncertainty about whether litigation and arbitration actually lead to improvements in the quality of LTC, deter substandard care, or consistently result in payments to litigants for meritorious claims. Some data suggest that legal actions against nursing homes cause financial hardship that can result in diminished quality outcomes (Troyer & Thompson, 2004). Partly in response to provider concerns about the value of litigation, some states have pursued so-called medical malpractice “tort reform” and have capped awardable noneconomic damages (i.e., pain and suffering) to typically between $250,000 and $500,000. In Texas, in the wake of a statewide tort reform amendment in 2003,

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medical malpractice payouts and claims plummeted, especially for older adults. In 2002, Texas elders collected $40 million in medical malpractice claims (excluding nursing home claims). In 2007, in the wake of tort reform, medical malpractice payouts to Texas elders dropped to $14 million, a 65% decrease (Paik et al., 2010). By contrast, other states have expanded citizens’ rights to sue. Florida Statute Section  400.023 allows nursing home residents or anyone on their behalf or with their consent to sue for violation of their rights and allows awarding actual or punitive damages as well as attorney’s fees. From 1987 to 1994, jury verdicts in Florida nursing home cases doubled, to $526,000 on average, in the wake of newly granted rights to U.S. nursing home residents (Troyer & Thompson, 2004).

LEGAL TERMS AND CONCEPTS Case Study 7 incorporates key legal concepts and terms that apply to many LTC legal complaints (see Table 12.2 for definition of terms). TABLE 12.2  Legal Terms and Definitions Within the Context of Long-Term Care Legal Term

Definition

Breach (of duty)

A failure to fulfill a duty of care.

Causation

Cause in fact that a provider’s act or omission was a necessary antecedent to a long-term care plaintiff’s injury.

Damages

Monetary compensation awarded in a civil action to a party injured through another party’s wrongful conduct. Compensatory damages are awarded for the direct consequences of a defendant’s wrongful conduct. Punitive damages are awarded for conduct deemed willful, reckless, or oppressive and with intent to punish the defendant as well as to deter others from similar conduct.

Defendant

In a civil lawsuit, the party sued.

Discovery

Procedures engaged prior to trial/arbitration to require one party to disclose to the other party information essential to arguing the case.

Duty of care

A requirement that, for a given set of circumstances, a long-term care provider act with that degree of attentiveness, prudence, and caution that would reasonably be expected of other long-term care providers.

Expert testimony

Testimony about a professional, technical, or scientific issue, given by a person qualified by virtue of their training, credentialing, licensure, and/or experience.

Negligence

Conduct that fails to meet the standard of care for protecting others against a reasonable risk of harm. A long-term care defendant has acted negligently if he or she has departed from conduct expected of a reasonably prudent provider acting under similar circumstances.

Plaintiff

In a civil lawsuit, the party initiating a lawsuit by filing a complaint and demanding damages.

Standard of care

The level at which the average, prudent long-term care provider would act in the same or similar circumstances. Or, the degree of caution required of a person or entity acting under a duty of care. Expert witnesses testify to the standard of care. Failure to fulfill the standard of care amounts to negligence, and damages arising from negligence can be claimed by the injured party in a civil lawsuit.

Willful misconduct

An intentional, conscious, or knowing violation or disregard of the rights or safety of others, or of a reasonable and uniformly enforced rule or policy.

228  II.  CURRENT ISSUES IN LONG-TERM CARE

Case Study 7: Tom Douglas v. ManorCare On September 4, 2009, the family of Dorothy Douglas placed her at Heartland of Charlestown, a West Virginia nursing home owned by ManorCare, Inc. Ms. Douglas, aged 87, had been diagnosed with Alzheimer’s disease. After 3 weeks at Heartland of Charlestown, Ms. Douglas lost 15 pounds and was unable to walk or talk. On September 23, 2009, after having resided one day at Heritage Center, another local nursing home, she was transferred to Cabell Huntington Hospital, where she died a day later. After discovery, attorneys for Ms. Douglas’s son Tom Douglas, the plaintiff, alleged that dehydration caused (causation) Ms. Douglas’s death. During the civil trial, attorneys argued that the nursing home (a) breached its duty to provide basic care to Ms. Douglas (duty of care), including food and water, and (b) breached the standard of care, by consistently understaffing the facility per directives from ManorCare, Inc., the corporate owner, and defendant. At trial, several former directcare staff employed by Heartland testified that it had been impossible to perform their duties because of insufficient staff. The rate of staff turnover was reported to be 112%. The nursing home’s attorneys argued that Ms. Douglas’s death certificate listed dementia, not dehydration, as her cause of death. Moreover, defense attorneys provided expert testimony that the facility provided 3.14 hours of direct patient care per day during Ms. Douglas’ stay, which level exceeded the state staffing standard of 2.25 hours/day. The defense also provided expert testimony that Ms. Douglas had been in physical decline before being admitted to Heartland, and that her death was not caused by any negligence on the part of the nursing home. The defense also alleged that the former staff members had been paid to testify and that Ms. Douglas neither drank nor ate during her 1-day stay at Heritage Center, after being discharged from Heartland of Charlestown, and just prior to her death at the hospital. In August 2011, a West Virginia jury awarded to Ms. Douglas’s son $11.5 million in compensatory damages as well as $80 million in punitive damages. The jury found that the facility failed to feed and care for Ms. Douglas (Taylor, 2011a, 2011b). In every LTC legal action alleging negligence, plaintiffs must establish that the provider was bound by a duty of care, must demonstrate that the provider breached the duty of care by its acts or omissions, and must prove that the plaintiff suffered injury or loss as a direct result of the provider’s breach. In mounting a legal defense against alleged negligence, providers (as defendants) commonly argue that the duty of care was not breached and, moreover, that the provider’s acts or omissions did not cause the plaintiff’s injury or loss. In a civil negligence lawsuit, a jury determines whether the defendant is liable and, if so, establishes damages. In arbitration, a mutually agreed upon arbitrator determines liability and determines monetary damages, if applicable. In LTC legal actions, negligence is a common cause of action, which is the combination of facts (or legal theories) that allows a plaintiff to seek relief for damages. Other common causes of action include (a) strict liability, which is a defendant’s legal responsibility for damages or injury without proof of the defendant’s carelessness or fault and which may arise in cases alleging violations of client rights (as established by statute) and (b) intentional or deliberate acts that interfere with clients’ legally recognized interests and cause harm. So-called intentional torts include battery, fraud, willful misconduct and, commonly in LTC legal actions, abuse (especially elder abuse). It is common for LTC legal complaints to include multiple causes of action, including, all at the same time, negligence, statutory, and intentional torts. These different causes of action, which can be supported in many cases by the same set of facts, must satisfy different legal elements or theories and require different standards of proof.

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ELEMENTS OF A LEGAL CLAIM Legal claims are composed of common elements that, although not occurring in strict order, follow a rough chronological pattern. Usually a legal claim commences with a plaintiff’s perception of injury or neglect. Then, the aggrieved party files a complaint, which can include many components that may be amended over time. Once a complaint has been served by the plaintiff, the process of discovery begins. Discovery includes (a) gathering evidence—most especially provider documentation; (b) obtaining testimony via depositions—that is, statements given under oath in the presence of an attorney; and (c) obtaining expert witness testimony and/ or opinions with respect to the standard of care and/or causation. At any time during a lawsuit or arbitration, including during trial or arbitration, the plaintiff and defendant may enter into settlement negotiations. Nationally, it is estimated that less than 10% of nursing home legal claims proceed to trial (Stevenson & Studdert, 2003). Most LTC legal cases settle out of court/arbitration, due to the costs—and risks—of taking a case to trial. Posttrial activities can include appeals and actions for the collection of damages.

PLAINTIFF AND DEFENSE STRATEGIES IN MANAGING A LEGAL CLAIM Since the 1960s, television shows and motion pictures have reminded legal professionals and laypersons alike that there are many ways—some dramatic—to prosecute and defend legal claims. Although there is room for—and a long history of—compelling and dramatic LTC legal cases, most continuum-of-care legal complaints hew to common themes and strategies.

Common Plaintiff Strategies In general, plaintiffs attempt to demonstrate that LTC providers failed to fulfill their duty to provide care per the community standard and that such failure caused client injury, or damages. Common plaintiff strategies include 1. Suggesting that the client’s adverse outcomes were ratified by corporate policies aimed not at providing optimal care but at maximizing profit and/or ­shareholder value 2. Strongly emphasizing breaches of written policies and procedures 3. Carefully examining written plans of care for (a) evidence of a failure to create or revise plans as care needs changed; and (b) the creation of “rote,” as opposed to individualized plans of care 4. Examining a client’s clinical records for evidence of inaccuracy or falsification 5. Strictly evaluating provider contractual covenants and/or promises, including those made explicitly or implicitly via marketing materials 6. Obtaining still and/or videographic images of allegedly deficient, negligent, or reckless care 7. Seeking testimony from former, disgruntled, provider employees 8. Suing multiple defendants, including corporate parent entities, LTC administrators, physicians, nursing managers, and even line staff 9. Attempting to admit opinions of state licensing agencies that the defendant has violated regulations

230  II.  CURRENT ISSUES IN LONG-TERM CARE

Common Defense Strategies LTC defendants attempt to demonstrate that they have fulfilled their duty of care and that any client injury or loss was not caused by provider acts or omissions. Common defense strategies include 1. Emphasizing that provider documentation is not equivalent to the provision of care and that much, if not most, care may not have been documented 2. Emphasizing that neither policies and procedures nor government regulations amount to the standard of care 3. Suggesting that the client and/or his or her family members are motivated at least in part by greed or guilt (usually for not visiting an inpatient client, or not optimally supporting a client who was receiving outpatient LTC services) 4. Suggesting that the client’s decline was due to the natural disease progression of one or more disease states (commonly referred to as the “old, sick, and frail defense”) 5. Highlighting the uniqueness of a client’s medical and/or psychosocial condition as a contributing factor to client outcomes, and emphasizing client behaviors or lifestyle choices that may have predisposed the client to the alleged adverse outcomes 6. Attempting to undermine the testimony of former, potentially disgruntled employees 7. Detailing instances wherein the client refused care, to suggest that the facility was not neglectful, but rather honored the client’s right to choose or refuse care 8. Detailing the many services that may have been provided to the client within the standard of care and for which the client may have expressed appreciation or praise 9. Drawing attention to the negligent actions of persons not employed by the provider who nevertheless were providing concurrent care

MITIGATING RISKS IN ANTICIPATION OF LITIGATION AND/OR ARBITRATION Many LTC providers serve clients who are frail, older adult, and at some risk for serious injury. As such, providers motivated to provide compassionate, qualitydriven care must maintain awareness of the risks associated with service delivery and attempt to mitigate those risks through prudent practices, which may include (a) employing consistent, experienced, and engaged managers; (b) engaging in frequent and meaningful communications with clients and their families, which may include acknowledging errors; (c) maintaining robust communication and documentation protocols among all members of the provider service delivery team; and (d) ensuring that clients whose needs cannot be served are directed to other providers in the continuum of care.

Consistent, Experienced, and Engaged Managers Many providers manage risk by attempting to employ a stable, experienced cadre of hands-on managers who over time can build responsive management systems. Managerial tenure itself can mitigate provider risk (Castle & Lin, 2010). High rates of LTC management turnover can correlate to adverse outcomes as well as litigation.

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Effective LTC managers can engage systems of staff oversight that extend to all elements of service provision. Systems of oversight incorporate common elements that can be enhanced by manager tenure, including •  Engaged and visible managers: When, over time, managers are enmeshed in the processes and relationships of ongoing service provision, and know client needs firsthand, they can more easily devise and implement management systems that simultaneously meet the needs of clients and the frontline staff who serve them. •  Robust staff orientation and continuing education: Optimally, LTC provider staff regularly acknowledge in writing their ongoing understanding of provider protocols, as well as organizational policies and procedures that change over time. Written systems of staff acknowledgment help inoculate providers from legal claims that staff were neither oriented to nor continually educated about the evolving standards of care provision. •  Systems of accountability to standards of care: Provider staff must be held accountable to objective standards of care and service delivery, and managers must be able to demonstrate that systems of accountability are effective on a continuing basis. Management should evaluate staff competencies regularly and consistently discipline staff who fail to meet established standards.

Robust Communication With Clients and Their Families It is well known that a physician’s risk of a malpractice lawsuit is related to specific communication behaviors (Hickson et al., 1994). Litigants sue physicians who are perceived to be unavailable, uncaring, poor deliverers of information, or apt to discount patient or family concerns (Beckman et al., 1994). Robust physician communication systems include mechanisms for (a) eliciting patient concerns and (b) addressing the informational as well as emotional aspects of those concerns. Patient satisfaction with physicians is enhanced when concerns have been elicited and responded to (Stein, Frankel, & Krupat, 2005). Cognizant of research findings regarding physician communications and litigation, LTC providers can evaluate their own systems for eliciting client concerns. Techniques might include “acknowledging and emptying,” wherein providers elicit client needs, acknowledge them, and then ask, “How else can we meet your needs?” Or, “Tell me more” (see Table 12.3). In physician communications involving acknowledging and emptying, patients report three or fewer concerns (Anderson, 2011). LTC providers can target the emotional aspects of client concerns by employing techniques such as showing empathy. Studies on physician communication indicate that responding to emotion does not correlate to longer communications, and as little as 40 seconds of empathy can enhance patient satisfaction (Fogarty, Curbow, Wingard, McDonnell, & Somerfield, 1999).

Acknowledging Errors There is debate as to whether disclosing medical errors can benefit providers or their clients. Although some suggest that the disclosure of medical errors will only prompt a spike in legal claims and costs (Studdert et al., 2007), others point to evidence supporting medical error disclosure policies (Lamo, 2011). The Veterans Affairs Medical Center of Lexington, Kentucky, reduced payments for medical errors by

232  II.  CURRENT ISSUES IN LONG-TERM CARE

TABLE 12.3  Communication Skills for Eliciting and Responding to Informational and Emotional Aspects of Client Concerns Function Elicit concerns

Skills

Example

Open-ended question

“I’m hoping to ask you some questions and discuss the treatment plan. But first, could you tell me what you’d like to talk with me about—so we can be sure to address that?”

Acknowledging and emptying

“Okay, we’ll make sure to discuss that. What else would you like to talk about?”

Communicate information clearly

Ask–tell–ask

Client: “I don’t understand the treatment for pneumonia.” Provider (Ask): “Would it help if I give you an overview?” Client: “That would be great.” Provider (Tell): “We’ll give you antibiotics in the IV for a few days, then give you antibiotic pills for a few more days.” Provider (Ask): “Does that answer your question?”

Show empathy

NURSE (Name– understand–respect– support–explore)

Client: “It will be so hard if I can’t take care of my family.” Provider responses Name: “You sound worried.” Understand: “I can understand how you would feel that way.” Respect: “It sounds like you have been so strong for them.” Support: “We’ll work on this together.” Explore: “What worries you most?”

Source: Anderson (2011). Used with permission.

introducing a policy of disclosing and apologizing for errors, and compensating victims (Kraman & Hamm, 1999). In 2001, the University of Michigan Health System (UMHS) introduced a medical error disclosure program. Five years later, UMHS reported to the U.S. Congress that the number of open claims had dropped considerably and that claims duration had decreased more than 50% (Boothman, 2006). By 2010, researchers concluded that the average cost of a UMHS lawsuit dropped from $406,000 before implementing error disclosure to $228,000 after implementing error disclosure (Kachalia et al., 2010).

Robust Communication Within the Provider Care/Service Team Clear, consistent, and redundant communications between LTC provider staff may be as important to mitigating adverse outcome as are communication protocols that elicit and address clients’ concerns. Techniques for ensuring robust communication among provider care team members include (a) using checklists to ensure that relevant client information is collected and documented in consistent ways, especially during unusual occurrences, or when client needs change emergently; (b) employing written agendas at staff meetings, staff huddles, or change-of-shift reports, to ensure that required informational elements are systematically addressed and documented; (c) regularly auditing team

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communications—employing external auditors or consultants as needed—to ensure that required elements of service provision are being recorded, transmitted, and/or received per provider protocols and the standard of care; (d) conducting multidisciplinary rounds at required intervals; (e) routinely training staff on communication and/or documentation protocols as they may change; and (f) promoting a culture of teamwork and collaboration (Leonard, Graham, & Bonacum, 2004 ). Litigation and arbitration rely heavily on documentation. As such, providers must ensure that documentation is complete and consistent, and evolves as standards and client needs change. Unfortunately, some providers have been known to alter existing documentation, create false documentation, or omit/destroy potentially damaging information, in misguided efforts to bolster a legal defense. Willful material falsification is illegal and, when revealed, seriously undermines a defendant’s case.

Case Study 8: Saucedo v. Cliff View Terrace, Inc. Four days after being admitted to Mission Terrace Convalescent Hospital in January 2009, Sylvia Saucedo fell and sustained a permanent brain injury. During discovery, her attorneys noted in the medical record a fall-risk assessment, completed by the director of nursing, indicating that Ms. Saucedo was at low risk for falls. However, the fall-risk assessment appeared to be fraudulent. It included hole punches indicating that the document could not have been aligned in the patient’s actual medical record. A jury awarded Ms. Saucedo and her daughter more than $2 million. On appeal, damages were reduced to $1 million (Saucedo v. Cliff View Terrace, Inc., 2011).

Clear and Consistent Client-Selection Protocols Providers should endeavor to serve only those clients for whom they can reasonably ensure safe and appropriate service provision, and promptly transition existing clients to higher levels of care when clinically indicated, or regulatorily required. In many states, regulations governing nursing homes explicitly require providers to admit only those residents for whom appropriate care can be provided. In the wake of unanticipated adverse outcomes, it is common for plaintiffs to argue that outcomes were worsened, if not caused by, a provider’s failure to transition the client to a higher level of care or to seek out additional resources to meet the client’s changing needs.

SUMMARY About 1% of clients file legal claims against LTC providers. Many clients do not sue because (a) they fear retaliation, (b) they may be unaware that an error or injury has occurred, (c) they are disabled by communication or cognition deficits, (d) they cannot find a plaintiff’s attorney who is willing to take their case, or (e) cases can stretch across years. When clients do file lawsuits (or pursue arbitration) against LTC providers, reasons commonly include falls with injury, acquired pressure ulcers, and wrongful death. The average payout on a settled, insured case equals $159,000. Pressure ulcer payouts average $256,000. About 90% of LTC legal cases are settled before trial/arbitration and, on average, arbitrated cases settle faster. In LTC legal actions alleging negligence, plaintiffs must establish that the provider was bound by a duty of care, must demonstrate that the provider breached

234  II.  CURRENT ISSUES IN LONG-TERM CARE

the duty of care by its acts or omissions, and must prove that the plaintiff suffered injury or loss as a direct result of the provider’s breach. LTC providers can mitigate the risk of litigation and arbitration by instituting prudent practices that may include (a) employing consistent and engaged managers, (b) soliciting and responding to client concerns and possibly acknowledging errors, (c) employing techniques to ensure systematic communication among all members of the provider service delivery team, and (d) ensuring that clients whose needs cannot be served are provided access to other providers in the continuum of care.

REFERENCES Anderson, W. G. (2011). Patient-centered communication for the hospitalist: Skills for communicating information clearly and building rapport. Doctor’s Advocate, Third Quarter 2011. Aon Risk Consultants, Inc. (2001–2011). Annual long term care general liability and professional liability actuarial analysis. Columbia, MD: Aon Corporation. Aon Risk Consultants, Inc. (2011). Aon 2011 long term care general liability and professional liability actuarial analysis. Columbia, MD: Aon Corporation. Beach, Whitman, & Cowdrey, LLP. (2010). Defense verdict in favor of assisted living facility in medication error case. Retrieved from www.beachwhitman.com/?p=98 Beckman, H. B., Markakis, K. M., Suchman, A. L., & Frankel, R. M. (1994). The doctor–patient relationship and malpractice. Lessons from plaintiff depositions. Archives of Internal Medicine, 154(12), 1365–1370. Boothman, R. (2006). Medical justice: Making the system work better for patients and doctors. Testimony before the U.S. Senate Committee on Health, Education, Labor and Pensions. Bragg, D. (1997). Dealing with nursing home neglect: The need for private litigation. Southern Texas Law Review, 39(1), 1–22 California Advocates for Nursing Home Reform (CANHR). (2003). Much ado about nothing: Debunking the myth of frequent and frivolous elder abuse lawsuits against nursing homes. San Francisco, CA: California Advocates for Nursing Home Reform. Castle, N. G., & Lin, M. (2010). Top management turnover and quality in nursing homes. Health Care Management Review, 35(2), 161–174. Center for Medicare & Medicaid Services (CMS). (2009). Nursing home data compendium. ­Baltimore, MD: U.S. Department of Health and Human Services. Center for Medicare & Medicaid Services (CMS). (2011a). Home health quality initiatives. Retrieved from http://www.cms.gov/HomeHealthQualityInits/ Center for Medicare & Medicaid Services (CMS). (2011b). Home health compare. Retrieved from http://medicare.gov/homehealthcompare/search.aspx Chicotel, A. (2011). Legal concepts and issues in assisted living facilities. In D. Yee-Melichar, A. Renwanz-Boyle, & C. Flores (Eds.), Assisted living administration & management: Effective practices and model programs in elder care (pp. 243–281). New York, NY: Springer Publishing Company. Congressional Budget Office (CBO). (2004). Limiting Tort Liability for Medical Malpractice. Washington, DC: U.S. Government Printing Office. Dora Taylor v. Nexion Health at Garland, Inc. d/b/a Castle Manor Nursing Home, No. 03-4675-H (160th D. Tex. Apr. 29, 2005). Fogarty, L. A., Curbow, B. A., Wingard, J. R., McDonnell, K., & Somerfield, M. R. (1999). Can 40 seconds of compassion reduce patient anxiety? Journal of Clinical Oncology, 17(1), 371–379.

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Hemp, S. J. (1994). The right to a remedy: When should an abused nursing home resident sue? Elder Law Journal, 2(2), 195–224. Hickson, G. B., Clayton, E. W., Entman, S. S., Miller, C. S., Githens, P. B., Whetten-Goldstein, K., & Sloan, F. A. (1994). Obstetricians’ prior malpractice experience and patients’ satisfaction with care. Journal of the American Medical Association, 272(20), 1583–1587. Insurance Services Office. (2002). Nursing home liability insurance: A discussion of the current insurance crisis. Jersey City, NJ: Verisk Analytics Company. Kachalia, A., Kaufman, S. R., Boothman, R., Anderson, S., Welch, K., Saint, S., & Rogers, M. A. (2010). Liability claims and costs before and after implementation of a medical error disclosure program. Annals of Internal Medicine, 153(4), 213–221. Karas, A. (2010). Jury awards $821,000 to family of 74-year-old who wandered away from Molalla care facility and die. Oregonian. Retrieved from http://www.oregonlive.com/ clackamascounty/index.ssf/2010/10/jury_awards_821000_to_family_o.html Koricic v. Beverly Enterprises Nebraska, Inc., 278 Neb. 713, 773 N.W.2d 145, 149 (2009). Kraman, S. S., & Hamm, G. (1999). Risk management: Extreme honesty may be the best policy. Annals of Internal Medicine, 131(12), 963–967. Lamo, N. (2011). Disclosure of medical errors: The right thing to do, but what is the cost? Lockton Companies LLC. Retrieved from http://www.lockton.com/resource_/pageresource/mkt/ disclosure%20of%20medic al%20errors.pdf Leonard, M., Graham, S., & Bonacum, D. (2004). The human factor: The critical importance of effective teamwork and communication in providing safe care. Quality & Safety in Health Care, 13(Suppl. 1), i85–i90. My InnerView. (2010). Consumers, workforce, willing to recommend nursing home. Retrieved from http://www.myinnerview.com/_media/doc/national_report/2009nationalreport_ pressrelease.pdf National Adult Day Services Association. (2011). Retrieved from http://www.nadsa.org National Hospice and Palliative Care Association. (2009). Retrieved from http://www.nhpco .org/ Paik, M., Black, B., Hyman, D., Sage, W., & Silver, C. (2010). How do the elderly fare in medical malpractice litigation? Evidence from Texas, 1988–2007. Rochester, NY: Social Science Electronic Publishing, Inc. Retrieved from https://editorialexpress.com/cgi-bin/conference/ download.cgi?db_name=ALEA2010&paper_id=273 QPWB gets defense verdict on $3 million wrongful death claim. (2011, March 4). Quintairos, Prieto, Wood, & Boyer, P.A. Retrieved from http://qpwblaw.com/defense-verdicts/383qpwb-gets-defense-verdict-on-3-million-wrongful-death-claim.html Rutledge, P. (2008). Arbitration—A good deal for consumers. U.S. Chamber Institute for Legal Reform. Saucedo v. Cliff View Terrace, Inc., 2011 WL 680121 (Cal. App. 2011). Baltimore, MD: U.S. Department of Health and Human Services. Stein, T., Frankel, R. M., & Krupat, E. (2005). Enhancing clinician communication skills in a large healthcare organization: A longitudinal case study. Patient Education and Counseling, 58(1), 4–12. Stevenson, D. G., & Studdert, D. M. (2003). The rise of nursing home litigation: Findings from a national survey of attorneys. Health Affairs, 22(2), 219–229. Studdert, D. M., Mello, M. M., Gawande, A. A., Brennan, T. A., & Wang, Y. C. (2007). Disclosure of medical injury to patients: An improbable risk management strategy. Health Affairs, 26(1), 215–226. Studdert, D. M., Mello, M. M., Gawande, A. A., Gandhi, T. K., Kachalia, A., Yoon, C., . . . Brennan, T. A. (2006). Claims, errors, and compensation payments in medical malpractice litigation. New England Journal of Medicine, 354(19), 2024–2033. Studdert, D. M., Thomas, E. J., Burstin, H. R., Zbar, B. I., Orav, E. J., & Brennan, T. A. (2000). Negligent care and malpractice claiming behavior in Utah and Colorado. Medical Care, 38(3), 250–260.

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Swartz, K. (2011). Jury orders health care facilities to pay $9 million in wrongful death suit. Atlanta Journal & Constitution. Retrieved from http://www.ajc.com/news/jury-ordershealth-care-861993.html Taylor, Z. (2011a). Care home’s neglect was fatal, lawyers argue. Charleston Gazette. Retrieved from http://www.wvgazette.com/News/201107261096. Taylor, Z. (2011b). Heartland must pay $91.5M in fatal neglect case. Charleston Gazette. Retrieved from http://sundaygazettemail.com/News/201108051077. Troyer, J. L., & Thompson, H. G. (2004). The impact of litigation on nursing home quality. Journal of Health Politics, Policy and Law, 29(1), 11–42. U.S. General Accounting Office (GAO). (1992). Medical malpractice, alternatives to litigation. Retrieved from http://archive.gao.gov/d31t10/145592.pdf. Report #HRD-92–28

III

Trends In Long-Term Care

13

HUMAN DIVERSITY AND ELDERCARE Joseph F. Melichar Darlene Yee-Melichar

LEARNING OBJECTIVES On the completion of Chapter 13, the reader will be able to •  Understand the concept of human diversity as applied to the continuum

of options in long-term eldercare •  Understand the broadening of the concept of human diversity to include

• 

• 

•  • 

the dimensions of the life experience and population description in an eldercare program Understand the main contexts under which to consider human diversity (individual senior, eldercare program, political division) and the purpose/use of human diversity in the various contexts (such as population description, oversight/enforcement, program operation, and senior view) Understand the influence of the different dimensions of human diversity and its measures (parameters) on eldercare programs; their delivery of services; and in the life space, experience, and daily lives of the eldercare participants Provide an overview for matching eldercare programs to senior needs and how it affects the human diversity to be experienced Understand human diversity factors in the development, management, and operational business plan of eldercare programs

This chapter discusses human diversity as it applies to eldercare programs, their operation, oversight on the services provided, and influence on participants. The basic question being addressed is “why and how to consider human diversity?” To accomplish this end, the review looks at how context, diversity parameters, functional purpose, and eldercare program type influence the selection, definition, and use of a diversity measure. A summary of these factors is presented in Figure 13.1.

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240  III.  TRENDS IN LONG-TERM CARE

Gender Race Language Food Culture SES Religion Diversity Parameters

Population Political Subdivision (national, regional, state, county, community)

Population Statistic Context

Functional Purpose

Operation/ Management

Program Individual

Oversight/ Enforcement

Diversity Focus & Specific Definition

Individual/ Experiential

Eldercare Program

At Home Community-Based NORCs Assisted Living CCRCs SNFs Independent

Dependent

FIGURE 13.1  Summative view of human diversity and aging. Notes: SES, socioeconomic status; NORCs, naturally occurring retirement communities; CCRCs, continuing care retirement communities; SNFs, skilled nursing facilities.

“Context” is the situation to which the diversity measure is to be applied. The specific contexts to be addressed are population, political subdivisions (e.g., national, regional, state, county, and community), eldercare program types, and senior participants. In the broadest perspective, all the contexts share a common environment, but the direct impact, type of interaction, and strength of interaction narrows from political subdivision to program to individual senior. Similarly, the meaning, utility, and operational use of human diversity measures vary. Human diversity “parameters” are the specific measures to be reviewed relative to eldercare and its contexts. The specific diversity measures would be selected by the context application, functional purpose, elder program type, and specific goals for its use. Not all parameters are applicable to all situations. Some parameters of human diversity include, but are not limited to, age, gender, race/ethnicity, culture, language, socioeconomic status (SES), and education (Brah, 1991; Capitman, 2002; Fried & Mehrotra, 2008; Mehrotra & Wagner, 2009; Yee-Melichar, RenwanzBoyle, & Flores, 2011). The importance of human diversity also varies by “functional view”: (a) general population description; (b) for oversight/enforcement—to assure services are

13.  HUMAN DIVERSITY AND ELDERCARE  241

available to all people in a population or political subdivision; (c) for programs—to provide operational guidelines to better serve all people in the program equally and to meet their individual needs; and (d) for individual seniors—to provide for and meet their needs, expectations, and desires. The functional purpose is how the diversity measure will be used in any of the contexts. Specific to an eldercare program and/or facility, the “senior-oriented focus” on human diversity is important to both the services provided to the senior and the diversity that can be experienced. To achieve these ends, the program business plan also requires the diversity factors to be considered and applied to the operation of the program and/or facility. The impact of the applicable diversity measures to the management and operation of the program create the framework for the diversity in the participant’s experience. There are a large number of resources describing human diversity and the Internet adds even more. This chapter will not replicate this information, but rather places a focus on the senior and on the relationship between seniors and eldercare services and programs. There will be less focus on political subdivision views of diversity that generally are discussed in statistical terms. As the focus on the senior’s experience and ­environment increases, the importance of statistical difference diminishes. The eldercare “program to senior” and “senior to senior” interactions, and, in turn, how the programs address the senior’s interaction with the human diversity available are reviewed. The following section presents some common definitions of human diversity leading to the conclusion that a meaningful definition of diversity requires a context and functional purpose to be established. The section following discusses eldercare programs and the services they provide ranging from community programs through care in skilled nursing facilities (SNFs) with the intent of illustrating change in independence, type and level of service, and the impact on diversity experience. The change in independence also alters the individual life space, environment, interaction potential, and experience with human diversity.

DEFINITION OF DIVERSITY In the simplest terms, diversity is a measure of difference in any population by some parameter or measure. In terms of eldercare, the breadth of the definition provides no immediate guidance for any functional purpose. Typical definitions of diversity focus on individual differences, equality of service, representative participation, and statistical analysis of service equality across statistical groupings. Before considering the concept of diversity in eldercare, three common definitions are reviewed: one addressing a broad view typical of university definitions, a dictionary definition, and the last definition considers diversity as an index. The lack of guidance on what measures to use and how to use them can be seen in the definitions of diversity, namely, The concept of diversity encompasses acceptance and respect. It means understanding that each individual is unique, and recognizing our individual differences. These can be along the dimensions of race, ethnicity, gender, sexual orientation, socioeconomic status, age, physical abilities, religious beliefs, political beliefs, or other ideologies. It is the exploration of these differences in a safe, positive, and nurturing environment. It is about understanding each other and moving beyond simple tolerance to embracing and celebrating the rich dimensions of diversity contained within each individual. (“Definitions of Diversity and Cultural Competence,” n.d.)

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The preceding definition is consistent with multiple other definitions that can be found through Internet and traditional searches using key words “diversity + definitions.” There is a similar equally good definition for research purposes on diversity: While heterogeneity refers to individual-level variation, diversity refers to group-level variation within a society. For example, cultural diversity can refer to a group’s ethnic background, its country of origin, and the language and heritage it brings to society. (Mehrotra & Wagner, 2009, p. 25) The dictionary definition is similar, yet less specific: 1. The condition of having or being composed of differing elements: variety; especially: the inclusion of different types of people (as people of different races or cultures) in a group or organization . 2. An instance of being composed of differing elements or qualities: an instance of being diverse . (“Diversity,” 2011) A more formal approach is provided in a diversity index that statistically describes diversity in a population or demographic group. The index provides a measure of membership in a group (e.g., ethnicity). Examples of this type of approach can be found in Maly (2000), Morgan and Wilson (1990), and Rushton (2008). Human diversity also can be approached through social borders as in anthropology (Ross et al., 1975). In legislative, legal, societal, organization, and regulatory domains, human diversity is aimed at measuring difference in population target parameters (e.g., age, race, or sex). The goals are to insure a socially defined allocation of resources, services, and rights. Some examples of these focuses are child labor laws, affirmative action, elimination of segregation, increasing minority participation in society, economic rights, and rights of population segments. The diversity concept is then used to describe differences in age, gender, racial or ethnic classifications, religion, philosophy, physical abilities, socioeconomic background, sexual orientation, gender identity, intelligence, mental health, physical health, genetic attributes, behavior, attractiveness, or other identifying features. Given the focus on seniors, we would include diversity of experience to be essential; it would include interests in arts, literature, news, science, and/or sports. These definitions indicate a need to start a process of selection of a framework to put substance into the definition to meet the goals and purposes for which it is to be applied. In summary, “diversity” is then not an absolute but a relative term as applied to any eldercare situation and is context sensitive. For example, consideration of human diversity on a national basis can differ from that within a community just simply on the composition of the membership in the two contexts. The variation within eldercare programs and types of programs can differ even more greatly. Given the different application of the principles of diversity within an eldercare service, process must follow some general rules and tenets set out in legal guidelines and in program business and operational plans.

ELDERCARE FRAMEWORK The type of eldercare programs is also included in Figure 13.1. The rationale is that the various program types have different population mixes, foci, environments, and participant functional abilities and independence; all these influence potential

13.  HUMAN DIVERSITY AND ELDERCARE  243

diversity that can be experienced by the elder. Moreover, as dependence increases, the senior’s environment is reduced, placing some limit on diversity that can be experienced. There are multiple definitions of eldercare, including some of which identify eldercare and long-term care (LTC) as equivalent (“Elder Care,” n.d.). The most common general definition is that eldercare is not a single programmatic approach but a spectrum of activities and/or care from independent living to dependent care. Included in the spectrum of services are senior care programs, elder support systems, and facilities with the common thread of support and service to seniors. Within the spectrum of services, there is a change in the elder’s independent to dependent activity and living and with it the potential diversity experience (Capezuti, Siegler, & Mezey, 2007; Harlton, Keating, & Fast, 1998; Kandel & Adamec, 2009). In this chapter, the term “eldercare” includes situations and programs ranging from independent to dependent living situations (“Aging in Place,” n.d.). Each situation has its own identification of human diversity and its meaning and impact. The continuum of independent to dependent living and level of care and senior independence include 1. Community programs wherein the elder is completely independent and includes programs such as education, exercise, nutrition, recreation, wellness, and family activities, with diversity of experience unchanged 2. Adult day care programs wherein the elder comes to a central facility that provides a range of activities and supports as part of an integrated program; the service typically provides midday meals, may include health-related services, and slightly narrows the senior’s independence and diversity experience 3. Home care programs wherein the services to the elder are provided in his or her home and are designed to support seniors for in-home living; typically, these services might include programs such as “meals on wheels,” exercise, cleaning, medication assistance, nursing, transportation, or in-home health services; the senior’s independence is further reduced, limiting external contacts and activities, and thereby reduces the diversity experience 4. Assisted living facilities that are residential programs requiring a degree of ­independence; typically, these facilities provide some level of support and care depending on the needs of the elder, which can vary over time and include meals, health, and cleaning service; the facility may include a continuum of care allowing it to adjust to the senior’s changing care needs; the balance starts to shift toward a restricted independence and further reduced diversity experience 5. LTC facilities (e.g., continuing care retirement communities [CCRCs]) that provide full services to elders who are less independent and need support to function in a controlled environment; meals, health care, and general support (e.g., mobility services, shopping) are provided; diversity experience becomes limited to the facility’s population and activity profile 6. SNFs that provide a more chronic care environment for the elder; the elder typically cannot function independently to address life’s daily needs and the activities of daily living and consequently provides the most restricted diversity experience The term “continuum of care” (Havens, 1995) represents the movement of the elder from the more independent care frameworks to those that address the needs of a less independent person. The differing levels of care may occur in one facility or site. In the broadest sense, the different programs reflect a change from independent living within the community to supportive facilities within the community. The continuum of care is part of the progression of added needs of the elder in later life and alters the diversity in the senior’s environment.

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The transition in the continuum described from independent living within the community to dependent living in an SNF reflects a situation of decreasing diversity and natural exposure to the environment of the individual. In the independent situations, the elder has the opportunity to be exposed to a broad range of situations, differences, people, cultures, types of food, and so forth. The elder may choose not to take advantage of the diversity, but it surrounds him or her within the confines of the community. In enrolling in an eldercare program or facility, the individual’s potential exposure to difference becomes more limited as the diversity exposure is dependent on specific situation in the program or facility. Any program or facility is at best a small segment of the community and cannot provide the diverse options within the community at large. The availability of diversity to the individual does not mean the individual will opt to use the opportunity or even desire to have it available. In addressing diversity, it is therefore important to determine in what setting the diversity considerations and measures will be applied. The usefulness of this chapter cannot be tied to a definition, but to focus on the understanding of diversity within various types of eldercare programs. The individual diversity components can then be applied to the specific contexts of the specific eldercare type. The following section addresses the definition of diversity across all these areas. Later sections will address diversity relative to the specific programs and services to the seniors in the eldercare program.

DIVERSITY CATEGORIZED BY DIFFERENT CONTEXTS Diversity measures also can be categorized as (a) population based, (b) enforcement based, (c) operationally based, and (d) resident based. 1. “Population-based diversity” is a representation of the characteristics of a specified population. Some typical population-based diversity measures are gender, age, education, income, social class, and race/ethnicity. 2. “Enforcement-based diversity” measures are used to compare the characteristics of a given population against a target population. An example of this type of measure is the difference between a specific gender ratio in the general population versus the same measure in target populations (like an eldercare program). 3. “Operationally based diversity” measures are used in provision of services to the program participants and in the general operation of the eldercare program. 4. “Resident-based diversity” is the resident view of diversity within a facility/ program as it applies to that resident. Population-based measures of diversity are statistical in nature. The measures are selected to describe a population by some parameter (e.g., age, gender, etc.). These measures can be used for any of the contexts using some common methodologies. The population-based measures can be used as a baseline against which to measure compliance, oversight, program design, or simply for information. They can also be used for sociopolitical purposes as described earlier (e.g., reduction of discrimination and segregation, affirmative action, and multiculturalism). The above factors are typically used in oversight and enforcement programs. Relative to eldercare, these approaches must be used in the business plan to build and/or check (knowing about) the diversity of specific eldercare program services that are targeted. When viewing diversity using the population-based or enforcement-based measures in the various contexts, the measures are broad and often focused on the

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most often used diversity measures of race, gender, education, and income level. The measures are summaries over large portions of the population. Given the size of the data set (such as census information), analysis of the overall diversity can be undertaken (e.g., gender vs. race, vs. education, vs. SES). This type of information can be used to plan services, create legislation, and evaluate how the aging services are provided to the various population sectors. Other options might be to look at health and longevity in terms of the services provided versus the diversity measures. The large-scale and population views are mainly of value for oversight or research studies. Examples of population-based measures can be found in U.S. Bureau of the Census reports (2000, 2003). A broad view of diversity using population measures typically includes government agencies, legislative bodies, professional and watchdog agencies, and research programs. This use of the population data is to insure that various sectors of the population are adequately represented by appropriate services ranging from national to local situations. The representation community is a much smaller population size, and diversity in some categories will be limited by the characteristics of the local population. At a program/facility level, the context changes. The most likely situation is that an eldercare program census has a population that is a subset of the community. The program/facility may further limit diversity if it serves a particular segment of the population (e.g., based on religious preferences or perhaps ethnicity). The value of a diversity profile to the program/facility is dependent on the intended use such as 1. Reporting on a mix of diversity measures required by an outside agency 2. Compiling statistics for internal use defined by the business plan 3. Creating or developing an eldercare program with specific goals 4. Reviewing how diversity influences individuals within the program 5. Evaluating the diversity in the staffing to assure compliance with employment regulations 6. Determining whether the program offered meets participant needs

POPULATION-BASED DIVERSITY There are many data sets that describe the characteristics of the general population by a range of common parameters. These data sets mostly come from federal agencies. There are numerous excellent sources of population-based statistics, which also provide a perspective of the diversity in the general population as well as excellent summaries (Angel & Angel, 2006; Capitman, 2002; Mehrotra & Wagner, 2009; YeeMelichar et al., 2011).

Population-Based Diversity: A Numbers Problem Measures of diversity can be limited by the population size being surveyed. For example, if age, gender, and race are being reviewed for a facility with 100 residents and there are three age groupings, two gender groupings, and five race groupings, the result might look like the following (assuming equal divisions within groupings): •  Age in three groups = 33 people/group •  Gender in two groups = 50 people/group

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•  Race in five groups = 20 people/group •  Age by gender = 6 groups of 16 people each •  Age by gender by race = 30 groupings of 3.33 people each The above simple example highlights the potential difficulty of viewing multiple diversity measures simultaneously within an eldercare program. In a comparative mode, the group measures used in a small program could make it harder to produce meaningful group sizes. For example, in a program of 100 people, if the race grouping had a membership of 50% for Race 1, 30% for Race 2, 25% for Race 3, 10% for Race 4, and 5% for Race 5, the 5% grouping would be 0.8 (16 × 0.05) people, which is too small to be meaningful in any comparison. Accordingly, it is important to have an established purpose for the diversity measure. The groupings become more problematic if the groupings are unequal.

Community Perspective or Subpopulation Selection If an eldercare program can serve a community’s entire population and is open to any and all community members, there would be no need to focus on any population measure for compliance. The limitation of service relative to any diversity measure only would relate to each facility’s service capacities. Population diversity measures would be descriptive of the facility population. Recruitment would follow the business plan for serving that community. Eldercare programs described earlier indicated program types ranging from independent living within the community to facility-based dependent care. The description did not discuss the process of how a senior selects and enters a program. There are several possible selection options: (a) the senior self-selects, (b) the senior selects along with family, (c) the family or a surrogate makes the selection, or (d) the senior is incapacitated or is in need of an external agent for the senior’s protection. Figure 13.2 represents an overview of the selection and decision process. In terms of human diversity, the above selection options have a common thread. The program selection will limit diversity that may be experienced. Only the very general in-community programs would be expected to provide any representation of the general population diversity in that community. Even in the most general situation, there is some restriction simply due to the program’s age-grading and activity focus (e.g., arts and crafts, exercise, or any focus of program activities aimed at specific participant interests). The selection process also weighs the seniors’ needs and where they are in the independence–dependence continuum (Greenwald, 1999). The program selection is then restricted not only by functional need, but also by service offerings. Many communities offer a range of services that can be selected by (a) health needs; (b) religious preference; (c) military or occupational service; (d) cultural or linguistic preference; (e) financial capacity, which may also include education level and social class; (f) ability to move geographically; and (g) family support or a range of other factors. As stated above, the various types of community eldercare program may target a subpopulation of the community for specific needs or desires of seniors as defined in its business plan. The subpopulation would represent a portion of the community and limits diversity by the program focus. For example, in the San Francisco Bay Area, there are a number of these subpopulation-focused eldercare programs that will be used as examples of focused eldercare programs.

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Eldercare Programs Available

Senior Functional Needs

Data Collection

Senior/Family Preference

Selection Process

Decision

Eldercare Program Enrollment

FIGURE 13.2  Selection and decision process. 1. Ethnicity based: On Lok (http://onlok.org/) tends to serve the Chinese American community and is centered in the area known as Chinatown in San ­Francisco, California. It has offered a long-standing service to this community, and is often cited as an example of community-focused eldercare. The program became part of the Program for All-Inclusive Care for the Elderly (PACE; Trice, 2006) and also broadened its services to different areas and to other populations. Kimochi is another example of a similar service program for Japanese American elders (http:// kimochi-inc.org). 2. Specific religion based: Jewish Home (http://jhsf.org) located in San Francisco, California, is a facility with a long history of serving the Jewish citizens of the San Francisco Bay Area. Jewish Home provides skilled nursing, acute geropsychiatry, and rehabilitation services. Moldaw Family Residences (http://moldaw. org/index.htm?gclid= CK6ckpX6jbkCFWyCQgodASIAuw) is also managed by Jewish Senior Living Group (JSLG) and tends to serve the Jewish residents living in Palo Alto, California. Moldaw family residences provides independent living/ assisted living services. Admission to these LTC facilities is not limited by religious or cultural affiliation. 3. Racial community based: Bayview Hunters Point Multipurpose Senior Services (http://bhpmss.org/contact_us) helps to address the needs of African American elders in the Bayview Hunter’s Point community of San Francisco, California. The program’s focus is on the needs of the seniors living in the community. In serving the community, racial diversity is minimized but is representative of that community. 4. Mental health based: Mental health-based focus for seniors is generally centered on services to seniors with Alzheimer’s disease (AD) and other dementias. These very specific programs have less need of focus on diversity of experience and have more

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focus on management and care related to AD and other dementias. An example of this type of memory-enhancement program is Lakeside Park Specialized eldercare (http://lakesideparksenior.com/about-assisted-living-dementia/overview). 5. Health based: The eldercare program may focus on a specific health need (e.g., rehabilitation services) or extended nursing care (e.g., skilled nursing care). The specific health need may be embedded in less age-specific programs (e.g., participants would reflect the community diversity). Some examples are Stanford Hospital (http://stanfordhospital.org/forPatients/patientServices/agingAdults) and Mills-Peninsula Hospital (http://www.mills-peninsula.org/seniors/ adulthealthcare.html). 6. General service based: Many community programs (both nonprofit and for-profit) simply serve as referral points for seniors. They may or may not offer other services and can provide a supporting service in the selection process. Some examples of this type of program are represented in the programs documented in the following websites: Coalition of agencies serving the elder (CASE; http:// www.sfseniors.org), Eldercare Network (http://www.theelder­carenetwork .org) and San Francisco senior center (http://www.sfsenior.com). These services (http://careforseniorsagency.com/referrals.htm; http://www.ioaging .com) also may be found as part of the other services described in this s­ ection. 7. Faith based: These programs have a strong focus on faith-based activities and lifestyle, and may not be focused on any one specific faith (ElderCare Alliance; http://www.almavia.com). 8. Family or home based: The family-based services are within home supports versus external agency supports and are typical in some ethnic populations (Clark & Huttlinger, 1998; Home Instead Senior Services, http://www.homeinstead.com/ pages/home.aspx). 9. Embedded senior based: Eldercare/senior services also can be embedded in a general community program that reflects more the diversity in the community served. An example of this type of program can be found in the Peninsula Jewish Community Center (http://www.pjcc.org). There are similar types of services for other segments of the population in other ethnic, religious, or other focus-based enclaves. The focus of the subpopulation eldercare programs is specific to the needs of the target subpopulation. Diversity measures in terms of the general population are less important, and the operational and participant needs and desires are the important foci.

OPERATIONAL DIVERSITY Operational diversity is the eldercare program’s focus on diversity in its operational guidelines, goals, and recruiting, and typically would be reflected in its business and operational plan. Operational diversity is focused on in program or facility– senior differences and can also be used to compare populations served against one another or any population statistic. These diversity measures are used to produce, maintain, and operate the service of the facility and to adapt the services to the resident’s needs, life choices, and requirements. Some examples are dietary restrictions, preferred foods, religious services, and translation services for the non-English speakers. These diversity measures are internal to the facility and solely are focused on the resident and the operation of the facility. In reviewing this area, references to specific processes to address operational diversity were not found. The processes exist either planned or ad hoc. A later section discusses how a business plan can, in part, address the issue. Operational

13.  HUMAN DIVERSITY AND ELDERCARE  249

diversity may lead to cultural competence which is the integration and transformation of knowledge about individuals and groups of people into specific standards, policies, practices, and attitudes used in appropriate cultural settings to increase the quality of services, thereby producing better outcomes (“Definitions of Diversity and Cultural Compentence,” n.d.).

PARTICIPANT AND PARAMETRIC DIVERSITY At the participant/resident level the view of diversity differs. The view is that of the participant enmeshed in the program combined with personal involvement outside of the program. Diversity is important in terms of the individual’s needs, life space, interests, and experience. From a view of or by participants, there is a set of parameters describing the diversity of the community, eldercare program, and personal environment interactions, needs, and desires. Some of these parameters were reviewed in the discussion of enforcement/oversight in political subdivisions but may not be of much interest to, or have an impact on, the participant (Trang, 2008–2009). There are additional parameters within the eldercare programs that are important to the individual. The following subsections address some of the major issues that directly impact the senior.

General Measures Every program will have some general measures (parameters) of diversity. The most common are the ratio of sexes, age, and race/ethnicity. These parameters are descriptions of who we are and cannot be avoided. The operational issue arises if the imbalance is different from the general population or expectation based on the program business plan.

Spirituality and Religiosity The religious- and faith-based programs address one set of measures that are part of the senior’s selection process for eldercare. Unless the program is part of a religiousor faith-based institution, the participants are likely to have different religious and spiritual baselines. In this situation, there needs to be a capacity to support participant’s religious and spiritual diversity. The goal has to be to provide the platform, but not require or enforce the religious experiences. Spirituality and religiosity are different aspects of an individual identification of self in the continuum of the universe (Ellor, Netting, & Thibault, 1999). Spirituality is then not a priori absorbed in religiosity, but religiosity can be subsumed as a form of spirituality. Religiosity is identification and participation in a formal religion and its dogma, systems of worship, belief systems, and rites. Spirituality “refers to the way a person seeks, finds, uses, and expand personal meaning in the context of the entire universe” (Mehrotra & Wagner, 2009, p. 318). The eldercare programs that are community and home based allow continuation of the participant’s normal religious participation. Residential eldercare programs have a more restricted capacity for continuation of a normal religious experience for the participants. A part of any residential program has to include mechanisms for elders to participate in formal religious rules observances (McFadden & Kozberg, 2008).

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Self and Life Space Each individual coming into an eldercare program brings along his or her life experience set, knowledge, history, expectations, culture, strengths and weaknesses, sense of self, individuality, social network, status set, role set, family ties, social skills, and knowledge and skill set (George, 2006; Hendricks & Hatch, 2006). Moving into eldercare introduces the senior to a new environment and relationships and starts a transition period into the new life space he or she will occupy. There may be additions, subtractions, and changes that vary by individual and can be viewed as positive or negative. The diversity experience will vary by type of program, any decrease in independence, change in activity, and need for adaptation. The eldercare program management needs to be aware of the influence of the change in diversity on each individual and provide appropriate supports.

Elder View on Eldercare Entry The eldercare participant has the following views of diversity: •  Environmental—diversity that is available to the individual •  Experiential—diversity that is experienced by the individual •  Operational—diversity that is part of the operation and processes of the program •  Personal—diversity that is viewed and desired by the individual Each new participant alters the diversity profile of the eldercare program. The change may be minor and can be ignored or used if appropriate. If the program is rigid, it will simply enforce its standards and the effect of the individual will be a secondary effect. How the program responds is dependent on the management and business plan of the eldercare program. An individual’s diversity experience will be altered in moving from independent to a more dependent living situation. The further along the continuumof-care spectrum, the less diversity is experienced by the elder. The provision and amount of diversity will vary by the type of eldercare program. The more restricted the environment (the more care provided), the less diversity experienced. The eldercare program has the control of the degree of diversity the resident can experience. The eldercare program must be aware of a need to both provide diversity and accept diversity. Maintenance of the individuality of the individual and his or her own diversity measures is important to his or her long-term well-being and wellness. A rigid restrictive program limiting diversity experiences, if less than or more than expected, requires more adaptation by the senior. The adaptation may simply be the acceptance of a narrower experience set (if narrower) or more adaptation demand (if broader). The issue is the gap of the difference between prior and current experience.

Elder Adaptation Prior to participation in an eldercare program the individual is part of a social network (Hall & Wellman, 1985; Moren-Cross & Lin, 2006) and has a role set and status

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set (Merton, 1957). An eldercare community program is the most independent; yet in joining the program new elements are added to the participant’s social network. The new elements can add diversity to the individual’s experience (or limit it) and require some adaptation by the participant. An eldercare program might consider a process for facilitating the adaptation by the individual. The individual also has a sense of self and identity (Stets & Burke, 2000), and the changes in role, status, and network require adaptation of behavior and self-perception (Crosnoe & Elder, 2002; Montgomery, 2000; Schafer & Shippe, 2010). Movement into any eldercare program changes the elder’s status set and with it his or her role set (Merton, 1957). These changes are dislocations in the senior’s life space and force adaptation. In part, the changes require socialization to the new experience as described by Rosow (1974) in his work on socialization to old age. Rosow addressed the ongoing interaction with social situations and social expectation on the individual and whether it influences the elder’s perception of and expectation of the aging process. Enrollment in an eldercare program automatically requires a socialization process to occur. The unresolved issue is what these changes do to the senior’s interest in diversity. Moving from independent to more dependent care would reduce and alter the social network (Krause, 2006b) and, with it, the likely potential diversity experience. As the social network shrinks, there are the fewer contact points external to the immediate environment. An eldercare program has to weigh how the individual is adapting to the reduction in potential diversity experiences, particularly during the transition period. It also could serve its residents by determining any common issue and replacing some of the diversity that might be lost through its service programs and adapting them to each participant. At various times in the past there have been efforts to define these changes as aging theories. Although shown not to be valid aging theories, it is useful to consider them as potential process models that individuals may encounter; these include social breakdown theory (Kypers & Bengston, 1973; Schulz, 2006b) and disengagement theory (Cumming & Henry, 1961; Schulz, 2006a). Social breakdown theory focused on describing the reduction and elimination of a social network as an active element of the aging process, whereas disengagement theory attributed many age-related changes to an active disengagement of the individual from his or her social network. Although shown not to be universally accurate, it does describe a potential dynamic profile of change a senior may experience. Neither serves as an aging theory, but again, the focus is on the change in the social network, which is the key for this review. It is the change that is the important focus for an eldercare program to address. The elder’s ability to adapt is idiosyncratic and may follow a lifelong pattern. Recent studies have suggested that personality is less rigid than once believed (Mroczek, Spiro, & Griffin, 2006), but such changes as are possible may be limited by the elder’s time in the program and other life changes being experienced. The eldercare program in its business plan should define how the adaptation demands and abilities of the participants would be addressed and include the influence of the diversity experience within the program.

Race and Ethnicity Typically, race/ethnicity (Kramer & Barker, 1994; Markides & Gerst-Emerson, 2014; Mutchler & Burr, 2011) is a main component when considering human diversity. The

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focus usually is for enforcement and oversight. These foci are targeted at ensuring all portions of the population have access to and participation in needed services. The distribution of ethnicities ultimately is relative to the community’s diversity profile. Of particular interest is (a) how the eldercare program operates, and (b) how the participants with different ethnic/racial backgrounds are served and interact (Krause, 2006a, 2006b; Maly, 2000; Rempusheski, 1989). The program operation influences the diversity mix within the program through its recruitment. After recruitment, the program operation helps to define how the different racial/ethnic groups are served and, equally important, how the different groups can interact. Not all racial and ethnic groups are homogeneous and can vary by culture, diet, language, religion, and so forth. For example, Chinese has numerous dialects and one may not be understandable by the other. Hispanic populations also have a large variation in culture, food, and language among counties. An eldercare program should have the operational flexibility to support these variations (Brotman, 2003).

Culture and Language The preceding sections indicated variation within ethnic groups. Language was one area mentioned. The eldercare program needs the capability to support the range of languages spoken by its participants. In addition, there is the issue of communication among participants. A highly diverse population based on linguistic capability (Li, McCardle, Clark, Kinsella, & Berch, 2001) could create a degree of dysfunction and/or isolation among participants (Lazar, 1997). Language and culture are often defined as interrelated. Originally, the Sapir– Whorf and Sapir–Whorf–Korzrybski hypotheses defined a strong and inflexible relationship that over the years has weakened, but it is important to note that the basic concept still applies to diversity issues. For the eldercare program’s consideration of diversity, it is useful and instructive to consider language and culture congruently (Chandler, 1994). There is also variation by generation for immigrant groups: First (Issei), second (Nisei), and third (Sansei) generations all have differences in culture (Kiefer, 1974). Acculturation differs across all generations (Perez & Padilla, 2000; Torres-Gil, 1986; Waters et. al, 2010; Zhang, 2008). The first generation is focused on assimilation, but retains a lot of the culture from their native land. This generation also must learn a new language and social and cultural mores. The second generation has the advantage of growing up in the new land and having been socialized and acculturated (Berry, 1994). It has been indicated that the third generation tries to incorporate more of their ethnic heritage into their lives. These differences are in addition to the historic events between different cohorts/generations (Elder, 1999; Yang & Lee, 2009). A general discussion of immigrant generations can be found in work by Duncan and Trejo (2012). Culture also includes art, music, science, technology, and belief systems; the individual in independent living makes choices to participate in the cultural world. The issue is, as the individual enters a less independent environment and desires to maintain diversity, how does the eldercare program provide these opportunities for its participants? Similarly, does an eldercare program have a responsibility or desire to expand the cultural environment and intergenerational interactions (Henkin & Kingston, 1998-1999) for all participants?

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Food and Diet In preceding sections, differences in ethnicity and culture were described and are presented as part of the individual’s profile, which can differ from the population of the program. The individual can have dietary preferences or requirements based on culture, personal preference, health concerns, medical restrictions or direction, religious beliefs, and/or a mix of the above. In independent care, the individual remains in control, but as the individual cedes independence to the eldercare program, the program has responsibility to meet the individual’s needs. Depending on the diversity in the program population, the eldercare program must provide an appropriate diversity in menu options. A general discussion of food service and diet in eldercare is available (Johnson & Fischer, 2004; Singh, 2005).

Gender and Sexuality There is disparity in sex ratio with age mainly because women live longer than men (Administration on Aging, 2011). The desire would be for more balance, but the naturally occurring sex ratio simply mirrors a statistical reality. Of most interest would be how the needs, expectations, and preferences exist for both groups (male and female) and what commonalities they share. Diversity due to gender difference is less important than what it means for the individual’s experiential diversity and for the program’s provision of the opportunity for interaction. The normative view is in the population profile, but the idiosyncratic view of the individual is of paramount importance. Moreover, in considering sex ratio it is important to remember that a person’s sex does not form a monolithic set of interests. A general review of gender and aging is available (Coon, 2003; Venn, Davidson, & Arbor, 2011). Gender also is not a fixed entity but is more variable than traditionally considered. Lesbian, gay, transgender, and bisexual elders may be part of every community. Within the community, they have different levels of acceptance but a relative freedom of movement. Within an eldercare program, the movement may be restricted and acceptance must occur within the program. Sexual preference is a separate parameter for consideration by the program residents who have and will express their own views on sexual preference. The program has to work out an approach to the issue to enable comfortable interactions for the residents (Butler, 2004; Cleas & Moore, 2001).

Social Class and Education Differences in social class and education may be muted by the eldercare program’s community and recruitment. The differences are important, namely, as a secondary indicator of interests, cultural pursuits, values, language, economic means, health, and social ties (George, 2006). The issue for an eldercare program would not be stratification, but rather the means for providing for adaptation strategies that create a harmonious situation for all program participants. The program also needs to be able to support participant’s diversity issues (Duncan & Trejo, 2012).

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Recreation/Exercise The participants also will have different perspectives and interests on recreational activities and exercise programs. For many people, these parameters are important parts of life and, for others, activities to be avoided. The diverse set of views and needs all have important implications for the individual’s life but create diversity within an eldercare program population, which needs to be addressed. As the type of eldercare program addresses increasingly reduced independence, the need for provision of exercise programs switch more to the program. Exercise may only be part of the life-diversity experience. Recreational activities would extend past exercise. Recreation is part of the activities and the individual’s experience of both the diversity of experience and the diversity experienced in recreation are important (Singh, 2010).

Health and Medical Issues Diversity in health and medical parameters also influences the individual’s life experience and, although not typically included as “diversity,” they are important differences (Yang & Lee, 2009). Within an eldercare program, there may be a large variation in health and medical issues among participants. This creates a large difference in functional capability and interests. The ability to share experience among participants can be restricted. The larger the disparity, the more difficult for the facility to provide a broad diversity experience (Kornblatt, Eng, & Chin Hansen, 2002). There also is a class of programs and facilities that serve medically and functionally limited individuals. This limits the diversity of the population. An example would be a program focused on serving dementia patients. Participation in this type of program automatically reduces diversity and the types and range of activities and experiences possible. A general discussion of health, behavior, and optimal aging is available (Aldwin, Spiro, & Park, 2006; Centers for Disease Control and Prevention, 2009; George,1996).

Diversity, Business Plan, and Management Model Diversity in a business plan is defined by the program goals and restricted by the community it serves. The degree of effort required to increase diversity in the eldercare program is dependent on the goals of the organization and resources. The effort required over and above admitting call-in and walk-in participants is restricted by the characteristics of the community being served. Short of recruiting outside the area served, the community defines the potential program population diversity. A general model of how the business plan might be developed and maintained relative to diversity is depicted in Figure 13.3. The business plan goals set the program service targets. Some examples were provided earlier of focused programs (e.g., On Lok, Jewish Home). The services focus and goals set for this type of target service program restricts the diversity option to those within the service population. The program diversity targets are only those variables that apply to the specific population being served. It is important that the business plan clearly and specifically states (a) the target population, (b) links to the community, (c) diversity plans internal to the pro-

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Community

Diversity Profile

Population Available

Target Population

Diversity Resources

Service Focus

Recruitment

Difference

Program Census

Diversity Profile

Staffing

Participant Needs

Program Plan Goals

Monitor

Operation

Evaluation Program Adjustment

FIGURE 13.3  Business plan outline—human diversity and eldercare.

gram, (d) program planning procedures to assess adequate diversity options and responses to participants, and (e) an evaluation mechanism to assure the desired participant diversity experience can be met and is being met. The eldercare program should be viewed as a purposeful system (Ackoff & Emery, 1972) with clear goals and procedures focused on “establishing and maintaining quality care” and or services (Allen, 1999; Singh, 2005). The business plan for the program must define the meaning of the term “diversity.” As described earlier, there is no all-encompassing definition of diversity. Planning for diversity can be meaningfully accomplished by identifying the components of diversity and the framework they fit in (Singh, 2005). The planning has to be inclusive of all diversity dimensions and support the best care and services for participants and have a focus on their quality of care and quality of life. Part of the business plan must address external expectations and compliance requirements (Singh, 2010). It is possible that there may be no external requirement,

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but this does not reduce the requirement within the program. When compliance is required, the business plan must set up the data systems needed, data collection, and report systems. The discussion of, and approach to, business plans relative to assisted living administration and management (Melichar, 2011) can be directly applied to other eldercare programs. The business plan also should identify a case management system (Kane, 1995) for participants appropriate to the level of support offered (type of eldercare program). Relative to the subject of this chapter, the case management system must have a means for including the diversity factors appropriate to the level of care and to the specific participant. First, it must identify the important parameters; second, it must match the appropriate services; and third, it must integrate them with the overall program and other participants (Singh, 2005).

SUMMARY This chapter focused on the concept of human diversity influenced by a range of conditions (context, functional purpose, descriptive parameter, and eldercare program type and focus). The combination of the influence results in a definition that is specific to the eldercare program and situation. The application of the concept of diversity also is influenced by the type of eldercare program and the degree of independence experienced by the enrolled seniors (e.g., from care at home to community program to skilled nursing home, and independence to dependence). The more traditional uses of diversity measures were summarized under the section on enforcement/oversight. References to resources for these purposes were provided but not replicated. Stronger influences were shown to exist in the selection of the program type of the senior. The selection of program type mirrors the degree of independence and functional ability and, in turn, strongly influences the diversity that can be experienced. As the individual transitions through the continuum of care, his or her environment changes, as does the diversity he or she can experience not only from his or her own limitations and interests, but also from a narrowed environment. There always is personal selection by participant. The eldercare program business plan selects a target population by community and its service focus, and creates a management framework for the program. The targeted population and service focus define the diversity profile within the eldercare program and what the participants will experience.

REFERENCES Ackoff, R. L., & Emery, F. E. (1972). On purposeful systems. Chicago, IL: Aldine-Atherton. Administration on Aging. (2011). A profile of older Americans. Washington, DC: U.S. Department of Health and Human Services. Retrieved April 29, 2013, from www.aoa.gov/Aging_ Statistics/Profile/2011/docs/2011profile.pdf Aging in place. (n.d.). Retrieved December 15, 2013, from http://aginginplace.com Allen, J. E. (1999). Assisted living administration. New York, NY: Springer Publishing Company. Aldwin, C. M., Spiro, A., III & Park, C. L. (2006). Health behavior, optimal aging: A life-span developmental perspective. In J. E. Birren & K. W. Schaie (Eds.), Handbook of the psychology of aging (6th ed., pp. 499–518). Burlington, MA: Elsevier Academic Press.

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Morgan, D. R., & Wilson, L. A. (1990). Diversity in the American states: Updating the Sullivan index. Publius: The Journal of Federalism, 20(1), 71–82. Mroczek, D. K., Spiro, A., III & Griffin, P. W. (2006). Personality and ageing. In J. E. Birren & K. W. Schaie (Eds.), Handbook of the psychology of aging (6th ed., pp. 363–377). Burlington, MA: Elsevier Academic Press. Mutchler, J. E., & Burr, J. A. (2011). Race, ethnicity, and aging. In J. A. Settersten Jr., & J. L. Angel (Eds.), Handbook of the sociology of aging (pp. 71–82). New York, NY: Springer Publishing Company. On Lok Life Ways. (2013). Retrieved April 29, 2013, from http://www.onlok.org/ Perez, W., & Padilla, A. M. (2000). Cultural orientation across three generations of Hispanic adolescents. Hispanic Journal of Behavioral Sciences, 22(3), 390–398. Rempusheski, V. F. (1989). The role of ethnicity in elder care. Nursing Clinics of North America, 24(3), 717. Rosow, I. (1974). Socialization to old age. Berkeley, CA: University of California Press. Ross, J. K., Aggarwal, P. C., Bessac, F., Blacking, J., Brentjes, B., Casagrande, L. B., & Ward, W. (1975). Social borders: Definitions of diversity [and Comments and Reply]. Current Anthropology, 16, 53–72. Rushton, M. (2008). A note on the use and misuse of the racial diversity index. Policy Studies Journal, 36(3), 445–459. Schafer, M. H., & Shippee, T. P. (2010). Age identity in context: Stress and the subjective side of aging. Social Psychology Quarterly, 73(3), 245–264. Schulz, R. W. (Ed.). (2006a). The encyclopedia of aging: A comprehensive resource in gerontology and geriatrics (Vol. I, 4th ed., pp. 321–322). New York, NY: Springer Publishing Company. Schulz, R. W. (Ed). (2006b). The encyclopedia of aging: A comprehensive resource in gerontology and geriatrics (Vol. II, 4th ed., pp. 1088–1090). New York, NY: Springer Publishing Company. San Francisco Senior Center. (2013). Retrieved April 29, 2013, from http://www.sfsenior. com/ Singh, R. A. (2005). Effective management of long-term care facilities (1st ed.). Sudbury, MA: Jones & Bartlett. Singh, R. A. (2010). Effective management of long-term care facilities (2nd ed.). New York, NY: Springer Publishing Company. Stets, J. E., & Burke, P. J. (2000). Identity theory and social identity theory. Social Psychology Quarterly, 63(3), 224–237. Trang, A. (2008–2009). What older people want: Lessons from Chinese, Korean, and Vietnamese Immigrant Communities. Generations, 32(4), 61–63. Trice, L. (2006). PACE: A model for providing comprehensive healthcare for frail elders. Generations, 30(3), 90–92. Torres-Gil, F. (1986). The Latinization of multigenerational population: Hispanics in an aging society. Daedalus, 115(1), 325–348. U.S. Bureau of the Census. (2000). The 65 years and older population: 2000 census brief. Retrieved April 29, 2013, from http://www.census.gov/ U.S. Bureau of the Census. (2003). Statistical abstract of the United States 2003. Retrieved April 29, 2013, from http://www.4uth.gov.ua/usa/english/facts/statab03/abstract.htm Venn, S., Davidson, K., & Arbor, S. (2011). Gender and aging. In J. A. Settersten Jr., & J. L. Angel (Eds.), Handbook of the sociology of aging (pp. 71–82). New York, NY: Springer Publishing Company. Waters, M. C., Tran, V. C., Kasinitz, P., & Mollenkopf, J. H. (2010). Segmented assimilation revisited: Types of acculturation and socioeconomic mobility in young adulthood. Ethnic Racial Studies, 33(7), 1168–1193. Yang, Y., & Lee, C. L. (2009). Disparities in health: Cohort variations in the life course. Social Forces, 87(4), 2093–2124. Yee-Melichar, D., Renwanz-Boyle, A., & Flores, C. (2011). Assisted living administration management: Effective practices and model programs in elder care. New York, NY: Springer Publishing Company. Zhang, D. (2008). Between two generations: Language maintenance and acculturation among Chinese immigrant families. El Paso, TX: LFB Scholarly Publishing.

14

ALZHEIMER’S DISEASE Kimberly Weber Linda R. Barley Caroline Alcantara Darlene Yee-Melichar

LEARNING OBJECTIVES On the completion of Chapter 14, the reader will be able to the causes of the aging process and the functional changes of •  Identify  senescence •  Assess the progression of dementia along with the various stages of

Alzheimer’s disease (AD) •  Define AD and related dementias based on fundamental criteria •  Learn about recent studies, interventions, and treatments for AD •  Understand the financial and legal issues of caring for a patient/family

member with AD •  Learn legislation, social awareness efforts, health care proposals, and

organizations that support AD patients and their family members

Aging is inevitable. The aging processes are biological, psychological, and social. The indisputable manifestations often feared are the decrepit physical and mental conditions. The outward expressions of aging include reduced immunity, loss of muscle strength, decline in memory and other aspects of cognition, loss of color in the hair, and elasticity in the skin. Over the past several decades, researchers and social scientists have tried to unravel the process of aging in human beings, to investigate what it means to age well, and to associate the possible correlations among independent variables associated with healthy aging.

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SENESCENCE Senescence, derived from the Latin word senex meaning old age, is an integral part of the discourse on aging. Senescence is the period of decline following the development phase in an organism’s life. Strehler (1977) established three criteria for differentiating aging from disease; these include the following: 1. The phenomenon must be universal, experienced by all aged persons regardless of gender, race, or ethnicity and occur at some point in time. For example, a decline in the body’s immunity is a part of aging, whereas lung cancer is not a part of senescence. 2. The change occurs gradually from within the body and excludes external variables such as poor air and water quality, and situations such as accidents. 3. The aging process has a negative effect, otherwise it would be maturational (growth) or maturity (no change), not aging. Senescence, or the gradual biological changes in an organism, leads to increased risk of weakness, disease, and death. The physiological change experienced by aging adults has its etiology in cellular organization, replication, and efficiency. Although universally experienced, the rate of decline varies among individuals. Human beings function using multiple systems composed of organs, tissues, and cells. The body exerts control over these organs, different systems communicating chemically and electrically. The declines in metabolism, excretion, cell restoration, bone replacement, and increasing inability to adapt to stress are the causes of the overall effects of aging.

Biological Clock and Longevity Researchers continue to examine the premise of a biological clock and the influencing variables that may lengthen or shorten the biological clock’s longevity. The biological processes of growing old are expressed as changes in the following areas: (a) the functional capacities that include sight, hearing, taste, smell, muscle tone, oxygen capacity, rate of metabolism; (b) the number of chronic diseases experienced, for example, sinusitis or osteoporosis; (c) the need for assistance in activities of daily living (ADLs), which include the ability to shop, cook, clean, travel, think, and make appropriate decisions; and (d) changes in social and psychological functioning. The functional changes are evidenced in the internal and external alterations. Internally, cells, tissues, and organ systems “slow down.” The rate of cell replacement in bone, nerve, and blood is slower. The slower the body’s functional systems, the slower the body’s stress response. The vascular system loses elasticity (arteriolosclerosis) causing the heart to work harder to pump the blood, consequently increasing the blood pressure (hypertension) as well as the health risk factor. The duration of digestion lengthens due to reduced production of digestive enzymes (hypotrophic gastritis). Typically, these aggregate changes impair an older adult’s immunity and the body’s ability to produce antibodies. Externally, the age-related changes are distinguished as increased body fat due to lower basal metabolic rate; wrinkles on the face and neck following the loss of fat, collagen, and elasticity of skin; graying hair and age spots as the result of increased melanin deposits on the face, hands, and arms; and the necessity for reading glasses (presbyopia) and hearing aid due to minor hearing loss (presbycusis).

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Aging encompasses a group of processes, hence researchers have had considerable difficulty in extricating aging from disease. Researchers have even debated whether AD and other forms of dementia are part of the aging process or a ­disease.

Dementia The human brain has about 100 billion nerve cells (called neurons), and each neuron has 10,000 connections (called synapses). There are an estimated 100 to 500 trillion synapses, and at each synapse a specific chemical is released that opens or closes a channel, an electrical circuit in the adjacent neuron. The death or malfunction of neurons negatively affects one’s comprehension, behavior, and orientation. Dementia is the consequence of irremediable damage to brain cells and is a term that encompasses a myriad of diseases and conditions that develop when neurons in the brain die or no longer function in a normal manner. Dementia is usually chronic and distinguished by gradual, irreversible decline in intellect, including memory, learning, language, and judgment. Dementia is associated with several underlying brain pathologies, including AD, frontotemporal dementia, dementia with Lewy bodies, and vascular ­dementia. AD and vascular dementia are the most common neurological impairments associated with dementia. The boundaries between each type of dementia are indistinct and overlap is common (Alzheimer’s Disease International, 2009). Generally, there is a gradual progression of symptoms in persons diagnosed with AD, whereas those with vascular disease show abrupt signs of symptoms. From onset of the initial symptoms, death can occur in 3 to 20 years, with an average of 8 to 10 years of living with dementia symptoms (Alzheimer’s Disease International, 2009).

AD AD is named after the German psychiatrist and neuropathologist Alois Alzheimer who presented the first case of presenile dementia in 1906 after extensive study of the postmortem brain of a former patient. The pathological conditions in AD are a consequence of the death of brain cells from the aberrant aggregation of neurofibrillary tangles and plaques in the neuron (Alzheimer’s Association [AA], 2013). Consequently, there is a loss of synapses between the neurons leading to the deterioration of cognitive functioning such as organizational ability, perception, and thinking (AA, 2013). Stroke is known to be the primary cause of vascular disease when it eradicates brain cells by compromising the blood flow to the brain and preventing the supply of nutrients and oxygen (AA, 2013).

Stages of AD The Global Deterioration Scale The Global Deterioration Scale (GDS; Reisberg et al., 1982) was first presented as a scale of the assessment of primary degenerative dementia. To date, the GDS remains

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a primary scale for assessing AD and related dementias. The GDS assessment has seven stages, which include the following: 1. The patient reports and exhibits no memory deficit during the medical interview. 2. The clinician detects no memory deficit; however, the patient complains of memory lapses that include forgetting the names of people as well as location of everyday objects. 3. The patient exhibits mild memory deficit during medical interview, becomes disoriented while traveling, forgets the names of people close to him or her, has difficulty find the “right” words, and experiences attention deficits. 4. The patient shows clear-cut evidence of memory deficit through decreased memory of current and recent events, decreased ability to travel or handle finances, and inability to perform complex tasks. Though the patient may also deny there is any problem with his or her memory, it is evident to friends and family. 5. The patient can no longer handle activities of daily life without some assistance. He or she is unable to recall a major aspect of current life such as his or her current address or telephone number and may have trouble choosing proper clothing to wear. 6. The patient is largely unaware of all recent events and experiences, may forget his or her spouse’s name, become incontinent, and show personality changes. 7. The patient loses all verbal abilities, is incontinent, and requires help with feeding and toileting. He or she begins to lose (or has lost) basic motor skills, including the ability to walk, sit up without assistance, or difficulty in swallowing.

The Mayo Clinic Stages of AD The Mayo Clinic (2013) describes a five-stage progression of AD, and notes each individual is different and may experience the stages at different rates. The stages are preclinical AD, mild cognitive impairment, mild dementia due to Alzheimer’s, moderate dementia due to Alzheimer’s and severe dementia due to Alzheimer’s. AD is often diagnosed in the mild or early stage when the individual is having significant trouble with memory and thinking (this correlates with the GDS as Stages 2–3). People may experience memory loss of recent events or new information, or repeatedly ask the same question. At the mild stage, problem solving and complex tasks become overwhelming and judgment lapses, particularly with finances. Mild AD is also characterized by changes in personality that include being subdued, withdrawn, irritable, angry, or a reduced attention span. There is also a decreasing ability to organize and express one’s thoughts. In the mild stage, it is rather common for the individual to become lost while traveling, or to misplace or lose valuables. In the moderate or middle stage of AD (correlates with the GDS as Stages 3–5), people grow more confused, forgetful, and require assistance with the ADLs. Most ADL checklists assess the client’s ability to perform the following activities: eating, toileting, transferring, dressing, bathing, oral care, climbing stairs, cooking, doing laundry, using the phone, driving, and managing medications and finances. The moderate phase of AD includes increasingly poor judgment and deepening confusion, greater memory loss (in particular of personal history), confusion of family and friends, or making up stories to create a memory of something. Wandering becomes a high-risk behavior. As the deficits become more pronounced, it is increasingly unsafe to leave the individual on his or her own. Another significant hallmark of moderate AD is further changes in personality and behavior. It is not unusual for the patient to become suspicious, to be convinced caregivers are stealing from him or her, that spouses have been unfaithful, or to hear and see things that are not there. These suspicions are often accompanied by

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verbal outbursts, accusations, or cursing; some individuals may bite, kick, scream, or attempt inappropriate sexual behaviors. In severe or late-stage Alzheimer’s (this correlates with the GDS as Stages 6–7), communication is limited; meaningful conversation is no longer possible, and words or phrases are occasionally uttered. The person will require assistance to walk, to ascend or descend stairs, to sit or stand, and hold up his or her head. Muscles may become rigid and reflexes abnormal. Eventually, a person loses the ability to swallow and to control bladder and bowel functions. The immune system is frail, and the person is vulnerable to physical and pathogenic stressors.

Geriatric assessment of AD and related dementias Diagnostic and Statistical Manual of Mental Disorders The Diagnostic and Statistical Manual of Mental Disorders (5th ed., DSM-5; American ­Psychiatric Association, 2013) defines dementia as the development of multiple cognitive or intellectual deficits that involve memory impairment for new or previously learned information. Typically, a person with dementia will exhibit deficits in one or more of four critical areas: 1. Language disturbance (aphasia) 2. Impaired ability to carry out skilled motor activities (apraxia) 3. Deficits in ability to recognize familiar persons or objects (agnosia) 4. Impairments in planning, initiating, organizing, and abstract reasoning (executive dysfunction) These deficits affect the quality of life (QOL) in family life, social interactions, mobility, and employment. The DSM-5 lists multiple categories of dementia, including 1. Alzheimer’s type 2. Vascular dementia 3. Dementia resulting from HIV, head trauma, Parkinson disease, Huntington disease, Pick disease, Creutzfeldt–Jakob disease 4. Dementia due to a specific condition 5. Substance-induced dementia 6. Dementia due to multiple etiologies Most often, dementia subgroups (types) are identified as (a) cortical degeneration, an example is AD; (b) subcortical degeneration, an example is dementia with Lewy bodies; (c) cerebrovascular accidents or stroke; and (d) structural or traumatic injury, two examples are brain tumor and normal pressure hydrocephalus. These foregoing categories are not exhaustive; additional subtypes of dementia include infectious disease, organ failure, and endocrine and inflammatory diseases.

Geriatric Assessment Dementia can mimic many physical and psychological disorders; therefore, a differential diagnosis is essential. The first step is to determine any preexisting deficit in memory and/or cognitive ability, to determine age-appropriate versus age-­inappropriate cognitive changes. The difference between age-appropriate and age-inappropriate is inconclusive depending on subjective reports and the diagnostic criteria, which are still under debate.

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An assessment of age-appropriate and age-inappropriate functioning begins with “normal cognition” and concludes with “dementia.” The assessment follows a “yes” or “no” response. If “yes” the diagnosis appears in the right-hand column. If the response is “no” then assessment continues to the next level (AA, 2011a). These criterion levels include 1. Normal cognition: If yes, the diagnosis is no dementia. If no, then assess at the second level. 2. Mild cognitive impairment: If yes, then diagnosis is age-associated memory impairment and mild cognitive impairment. If no, assess at the third level. 3. Retrograde/anterograde memory impairment due to injury: If yes, the diagnosis is amnesic disorder. If no, assess at the fourth level. 4. Concomitant depressive symptoms; cognition improves on antidepressant: If yes, the diagnosis is psuedodementia. If not, assess at the fifth level. 5. History of chronic psychosis: If yes, the diagnosis is cognitive impairment associated with schizophrenia. If no, assess at the sixth level. 6. Acute onset of mental status changes comorbid medical cause: If yes, the diagnosis is delirium. If no, the assessment is dementia.

Medical and Mental Screening Tests A typical dementia diagnostic will include all the components of a standard medical and psychiatric history, including a home assessment. Furthermore, the diagnostic should incorporate a series of age-specific and dementia-specific inquires to determine the risk factors for dementia, as well as to identify individuals at risk for harm, abuse, or exploitation due to their cognitive impairment. The main goal of the physical and neurologic examinations is to identify and treat any medical factors that are causing or exacerbating cognitive impairment. The mental status examination (MSE) is a general screening test for cognitive impairment and identifies psychiatric symptoms. The Mini-Mental State Examination (MMSE), the Mini-Cog, and Clock Drawing Test (CDT) are popular and informative screening tests used for triage purposes. Other screening tests for cognitive impairment include the Mattis Dementia Rating Scale, Neurobehavioral Cognitive Status Examination, Neurobehavioral Rating Scale, Modified Mini-Mental State, and the AD Assessment Scale (cognitive subscale). In addition to the medical and psychiatric history and examination, the typical dementia diagnostic includes laboratory tests, a brain scan, and neuropsychological testing. The standard laboratory tests range from a complete blood count, urinalysis, glucose tolerance, venereal disease research laboratory (VDRL) test, and renal function. More specialized testing may include drug screening, heavy metal screening, and viral screening for HIV, Epstein–Barr, and cytomegalovirus. A brain scan has become an essential feature of almost every AD and dementia and medical diagnostic. Clinicians generally order a CT scan because it is efficient and affordable, and readily identifies strokes, bleeds, and masses. The MRI is more reliable but expensive. The MRI is able to identify white matter lesions, and subacute bleeding and lesion in the brainstem, subcortical regions, and the posterior fossa. Two functional brain scans are increasingly more common: the positron emission tomography (PET) and single photon emission computed tomography (SPECT). The scans are employed to measure the amount of pathological entities, such as beta-amyloid, which had been previously visualized only on postmortem examination. The PET and SPECT tests are complex to administer, not always well

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tolerated, and require the administration of radiolabeled isotopes. Future diagnostic tests and techniques will include refinements to the brain imaging, enhancements to the testing of mental abilities, and the measurement of key proteins or protein patterns in blood or spinal fluids. The importance of an early diagnosis cannot be underestimated. Early diagnosis allows for the identification and treatment of reversible medical causes of cognitive impairment and/or psychiatric problems. An early diagnosis provides family members and caregivers with explanations for unusual or distressing behaviors. Equally important, an early diagnosis provides the individual with essential information, and time to make critical life decisions while still able to do so. Dementia is a colossal global problem. There are an estimated 35 million people worldwide who have AD and other forms of dementia (AA, 2012). Every 4 seconds someone in the world develops dementia (AA, 2012). By 2050, it is estimated that 115 million people in the world will be afflicted by the disease (AA, 2012). The 2012 AA report estimates that 5.4 million Americans of all ages had AD or other forms of dementia. Two million were aged 65 and older, and 200,000 were younger than 65 years (AA, 2012). Nearly half of persons age 85 and older have AD, which accounts for 60% to 80% of cases; 3.4 million were women and 1.8 million were men (AA, 2012). Recent studies from Denmark and Britain published in July 2013 find that the rate of dementia has fallen sharply. The British study led by Dr. Carol Braye of the Cambridge Institute of Public Health indicates that the dementia rate among people 65 and older in England and Wales has dropped by 25% over the past two decades. The Danish study led by Dr. Kaare Christensen of the University of Southern Denmark in Odense indicates that people in their 90s scored substantially better than people who reached their 90s a decade earlier. Although the British and Danish researchers predict continuing decline in the dementia rates, there are researchers in the United States who are not convinced that the trend is definitive or will be true for the United States.

RESEARCH AND INTERVENTIONS FOR ALZHEIMER’S AD is the sixth leading cause of death in the United States, and there is currently no definitive cause or cure. The research on AD is extensive and new studies continue to emerge on the cause and subsequent cure. It is important to check the validity of the study by knowing the duration, understanding the controls, the number of participants of the study, and identifying the administrator of study. By making a more thoughtful examination to these studies, one is a better judge of how far-reaching their findings will be. Although some findings seem promising, there are still many more questions about AD than answers. Until a cure is found, it is important to look at the interventions that may manage or help families and individuals with the disease.

Research APOE-e4 Genes One major study in the Journal of Neurology cites the significance of APOE-e4 genes and its relation to persons with AD. This significant gene is found on ­Chromosome

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19, and the study indicates that a person with one or more copies of this e4 gene has a greater risk of developing AD (Evans, Hui, Perkins, & Lahiri, 2004). Although an indicator of AD, it is important to note that having this gene does not mean a person will necessarily develop the disease. In addition, it is not common to test for this gene; consequently, many individuals with this gene are unaware of their predisposed risk. The significance of this gene and what it might mean for a cause and cure for AD remains unknown, and is still being researched (Genetic Testing, 2008).

Dominantly Inherited Alzheimer’s Network Project The Dominantly Inherited Alzheimer’s Network (DIAN) project at the Washington University School of Medicine in St. Louis has been expanding an international registry of families with Autosomal Dominant AD (ADAD), a rare form of early-onset Alzheimer’s that afflicts 50% of descendants and is caused by one of three genes. In the first phase of the DIAN study, researchers have been testing the memory of participants and administering spinal taps and scans of individuals who are members of families with the Alzheimer’s genes. Using the baseline of the parent’s age when the disease was first diagnosed, researchers have detected changes in the brains of participants with the ADAD gene as early as 20 years before the appearance of symptoms. Therefore, the researchers conclude the optimal time to administer the experimental drug is within 15 years of the onset. At the second phase, an international team of scientists and a consortium of pharmaceutical companies will dispense one of three drugs to more than 260 participants in the United States, Britain, and Australia. The researchers hope to find evidence that one of the drugs effectively slows the progression of AD.

Beta-Amyloids Another finding cited in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association describes a microscopic sticky brain protein fragment called beta-amyloids. This compound accumulates in the brain, disrupts communication among brain cells, and eventually kills those cells. A number of research studies have shown that flaws governing the accumulation and or disposal of beta-amyloid are the primary cause of AD. Although an important initial finding, recent studies have shown that certain drugs slow the progression of AD without reducing beta-amyloid levels. This conflicting information questions the significance of AD related to beta-amyloids (Subhani, 2008).

AD and Type 2 Diabetes Archives of Neurology published an article that found participants who reported a history of diabetes had a 65% greater chance of developing AD over the course of the study than those with no history of diabetes. This is one of the first long-term studies that followed people who start out with no evidence of AD and track how having diabetes affects their risk of developing it. The study cites that specifically type 2 diabetes can further increase one’s likelihood of getting AD. Type 2 diabetes is largely related to lifestyle choices like maintaining healthy blood pressure, cholesterol, blood sugar, and weight. This study supports the connection that a healthy lifestyle can help support cognitive health (Arvanitakis, Wilson, Bienias, Evans, & Bennett, 2004).

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For over 30 years, person-centered care (a model in dementia care) has provided high-quality personal care that validates personhood, the core of which is preservation of self. The main components of person-centered care include 1. Valuing people with dementia and those who care for them 2. Treating people as individuals despite similarities and differences 3. Looking at the world from the perspective of the person with dementia 4. A positive social environment in which the person living with dementia can ­experience relative well-being (Dewing, 2007)

Narrative Citizenship Person-centered care achieves positive QOL outcomes, positive psychological well-being, and productive behavior. However, person-centered care does not support empowerment and influence for people with dementia. Brannelly (2011) suggests narrative citizenship as a vision beyond person-centered care, emphasizes rights and responsibilities, and examines the challenges of discrimination and stigma. Narrative citizenship redefines an individual with dementia as a citizen with a more empowered and powerful status. Baldwin (2008) suggests that linking citizenship and narrativity results in clarity of identity, belonging, and social relationship. Narrative citizenship is an expression of oneself in a recognizable form (dance, song, or mirroring), and there are many emerging programs that facilitate opportunities of expression, including curation, memories in the making, and art therapy. The primary premise is that the voice of the person with dementia is heard, his or her presence is acknowledged, and there is an opportunity for social exchange (Alcantara, 2013).

Interventions Currently, there is no definitive cure for AD. New research on the cause and possible cure for AD continues. It is important to check the validity of the study by understanding the controls, the number of participants of the study, the duration, and who administered the study. By thoughtfully examining these studies, one can better judge how far-reaching the results and findings will be. Although some results seem promising, there are still many more questions about them than answers. Until a cure is found, it is important to look at the interventions that may temporarily delay, manage, assist, or help families and individuals with the disease.

Drugs Although there are no drugs proven to cure AD, the U.S. Food and Drug Administration (FDA) has approved the use of four drug treatments: Aricept®, Exelon®, Razadyne®, and Namenda®. These approved drugs do not reverse Alzheimer’s and might only slow symptoms, at best, for a few years. The drugs are similar, but an Alzheimer’s patient may respond better to one drug than another. When individuals are taking these prescriptions, it is important to have them closely monitored by their doctors because of potential adverse side effects (Alzheimer’s Disease Education and Referral Center, 2010).

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Opportunities for Expression The burgeoning aging population has prompted attention to changes in the infrastructure and public policy to accommodate the increased needs of people with dementia. Narrative citizenship is a model that can provide opportunities for expression and promote agency for people with AD. It is a portal for people without dementia to enter the world of dementia and understand the experiences of dementia (Alcantara, 2013). Artists for Alzheimer’s (ARTZ) offers people with dementia opportunities in the museums, movie theaters, and art workshops; the AA’s Memories in the Making Art program offers thousands of opportunities for people with dementia to express themselves and communicate with their loved ones through various art mediums. The emerging Memory Cafés are examples of public places where people with dementia can gather for support and fellowship. Here they are given opportunities for moments of joy, acts in defiance against the disease, and to challenge the misperception that they no longer exist (­Alcantara, 2013).

Alternative Treatments Over-the-Counter Medications As persons with AD and their families experience inadequate amelioration with traditional medications, more people turn to alternative treatments. Some alternative over-the-counter AD treatments include caprylic acid, coconut oil, coenzyme Q10, coral calcium, ginkgo biloba, huperzine, omega-3 fatty acids, phosphatidylserine, and tramiprosate. The FDA has less oversight with herbal remedies and dietary supplements than prescription drugs; consequently, claims about the alternative product’s effectiveness are based on testimonials rather than scientific study. Although it is possible that they may produce alleviation in some iteration or combination, there are potential risks. The side effects include the purity of supplements as the FDA does not monitor the contents, unknown reactions to supplements that are not recorded, and adverse interactions with other prescribed drugs. These are all factors to be considered when deciding whether alternative treatments are appropriate for an individual (Alzheimer’s Disease Education and Referral Center, 2011).

Assistive Technologies Assistive technologies can enhance existing abilities or compensate for diminished ones. Assistive technology is defined as “any type of device used to increase, maintain, and improve functional capabilities of a person with some type of disability” (Arizona Technology Access Program, 2005, p. 2). Using appropriate assistive technologies can help provide continued independence whether it is a morning shower, medication management, mobility, or even leisure activities. Current assistive technology includes equipment such as iPads, automatic medication dispensaries, handrails, interactive medical devices, or interactive health visits with doctors. There is a wide range of cost and complexity of technologies available. It is just a matter of understanding what would prove helpful within a particular care setting tempered with what a facility, family, or individual can afford.

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FINANCIAL AND LEGAL CONSIDERATIONS Financial Considerations The average duration of AD is between 4 and 20 years; consequently, the needs of the individual with AD will change, and long-term planning is critical to ensure adequate care throughout the progression of the disease (AA, 2011b). In long-term care (LTC) planning, it is important to know the totality of available finances in areas that include investments, personal savings, pensions, private insurance, LTC insurance, life insurance, and real estate. Once the total available finances are determined, the type of affordable care can be addressed (Money Matters, 2010). The LTC costs include treatments for medical conditions, prescription drugs, personal care supplies, adult day care (ADC) supplies, in-home care services, and full-time residential care. Medicare is health care for all individuals 65 years and older, and the benefits include inpatient care, partial doctor fees, skilled care, and prescription drug coverage. One major drawback is that Medicare does not cover long-term custodial care. Custodial care is defined as assistance with ADLs often provided in assisted living facilities (California Advocates for Nursing Home Reform, 2011). As more and more families care for family members with AD, they consider the lack of custodial care one of the biggest gaps in Medicare coverage.

Legal Considerations There are myriad legal issues that a person with AD and his or her family may encounter. The legality of care includes decisions about health and financial preferences in conjunction with one’s cognitive abilities. If a person is diagnosed with AD and is still early enough in the progression of the disease, she or he can often dictate wishes though a living will or give a trusted individual durable power of attorney. Both processes help ensure that throughout the course of AD the individual’s health and financial preferences are followed. Alternatively, if an individual is no longer competent to make decisions due to brain degeneration, a court- or familyappointed guardian may be put in place (Legal Plans, 2010). Advance directives, explicit statements of preferred medical care, are increasingly common for individuals with AD. Specific preferences include circumstances in which resuscitation is to be performed, acceptable types of treatments to sustain life, and handling of body on death. The specific preferences can help the guardian or durable power of attorney to enact the wishes instead of making the choices difficult for them (National Hospice and Palliative Care Organization, 2011). Encouraging individuals with AD to organize their health and finances can yield a peaceful end of life.

PUBLIC POLICY, REGULATIONS, AND ALZHEIMER’S There has been slow advancement toward an AD public policy due, in part, to the prevailing social stigma inflicted on people with AD and their families. As a result, they are reluctant to approach their community or elected officials to discuss the hardships (Jackson, 2002). Thus, policy creation or changes, which often originate from constituent concerns, are hindered. Congressional members are made aware

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of issues by their constituents and are influenced to take notice and action on their constituents’ behalf. Members of Congress have begun taking notice in the past decade as more people living with AD are choosing to talk about the disease and bring public awareness to their personal struggle (Gingrich & Egge, 2007). Although policy is often a broadly discussed topic, it has specific relevance to the LTC continuum affecting people with AD and their families.

Federal Policies and Regulations National Alzheimer’s Project Plan (Public Law 111–375) National Alzheimer’s Project Act, commonly referred to as NAPA, is landmark legislation that passed in both Houses of Congress and was signed by President Obama into law in January 2011. The law calls for a national plan for AD and related dementias with input from public and private entities (U.S. Department of Health and Human Services, 2011). Ultimately, this input is being collected and provided to the Department of Health and Human Services to “expand, coordinate, and condense programs in order to improve the health outcomes of people with AD and related dementias, and reduce the financial burden of these conditions on those with the diseases, their families, and society” (U.S. Department of Health and Human Services, 2011, p. 2). Although it is argued that NAPA outcomes may not affect the current situation of Americans caring for or living with AD, it does put plans into place for future generations of people who may have to deal with this disease. The passage of this plan is one of the biggest victories for persons and families coping with AD in recent policy history.

Social Security Disability Insurance Waiting Period Social Security Disability Insurance (SSDI) is a benefit for individuals who are impaired to such an extent that they cannot be employed. The current projection for obtaining SSDI is 3 to 6 months, but the Compassionate Allowance (CAL) designation curtails the process to 4 and 6 weeks. CAL is a unique designation for individuals who “obviously” meet SSDI standards. Recently, younger onset AD individuals (meaning those diagnosed before age 55) were assigned the CAL designation as a consequence of community groups, individuals, and organizations highlighting the struggles and needs of CAL designation for the younger population afflicted with AD.

Adult Day Health Care Federal policies and regulations are applied nationally, but the large portion of AD policy comes from the state. Many programs, including the adult day health care (ADHC) program funded by the state, were being cut due to the budget crisis. ADHCs were annually funded $169 million dollars, but in 2011, California Governor Jerry Brown signed an order that would effectively eliminate ADHC funds. A lawsuit was filed against the state that helped to save a part of ADHC centers in California, however, reductions in the state has had adverse effects on many services provided to the community (Gorn, 2011).

Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act The Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UGAPPJA) or pronounced (you-gap-ja) is a policy that works to mainstream

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i­ ndividualized state policies related to adult guardianship. Adult guardianship is a process in which the court appoints a rational adult decision maker for an adult who is incapable of making decisions for himself or herself due to cognitive or other qualifying impairment. An estimated 500,000 adults nationwide fall into this category (Uniform Law Commission, 2011). Although this law is seemingly minor to some, this complex state system of guardianship can hinder health care decisions, as in the case of adult children who live in another state and serve as guardians or when trying to move a loved one to be closer to family in another state. This means the guardianship of an adult living in California may not be acknowledged in Maine. UGAPJAA is a movement to create similar state policies across the country to make guardianship easier. Ultimately, this policy increases with effectiveness as more states enact it. As of July 2011, UAGAPJAA had been adopted in 30 states (Uniform Law Commission, 2011).

AD AND COMMUNITY RESOURCES Living with AD or taking care of an individual with this disease can be a difficult and complex process. Because there is no known cure, understanding how to help those with AD maintain a positive QOL, as well as supporting caregivers, is critical. There are a variety of resources for individuals and families depending on cost, eligibility, medical, and emotional needs.

AA The AA has a variety of services nationwide to help those with AD or their caregivers. This includes a 24/7 helpline, 4,500 support groups, clinical trials listings, educational programs, and safety programs. In addition, the AA financially assists in funding research to find a cure for this disease. Often the first resource for families, the AA has extensive literature, staff, and general knowledge on the disease (AA, 2011b).

Family Caregiver Alliance Family caregiver alliance (FCA) prides itself as being a voice for all caregivers. It works on pioneering programs, including informational services, research, and advocacy-support. The FCA works to educate caregivers on the challenges and best practices of care, referrals, respite resources, and legal concerns. The FCA encompasses all types of caregivers but can serve as a useful resource for those caretaking for AD and other dementias (Family Caregiver Alliance, 2011).

ADC Services ADC and the services they offer differ from state to state; some are funded by Medicare dollars, others private pay, and some subsidized by county funding. ADCs are an option to allow a caregiver necessary short-term day respite while allowing the

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individual with dementia social, emotional, and medical support. In 2010 a survey cited that there are roughly 4,600 ADCs in the United States serving over 260,000 participants and that more than 50% of them have dementia. These services are helping many individuals who are diagnosed with cognitive impairment to age in place while providing care (National Adult Day Services Association, 2011).

Assisted Living Facilities Assisted living facilities are available for all seniors, and choosing the appropriate facility depends on factors such as location, finances, and health considerations. The placement ensures a sense of physical safety for the loved one, medication management, and supportive ADLs. A memory-specific facility provides other helpful services, including cognitive therapy, leisure activities, community outings, reading groups, and individualized attention. The additional services engage the individual with AD as well as enhance overall QOL (Signature Senior Living, 2005).

SUMMARY There has been extensive knowledge development about the process of aging and the progression of AD and related dementias. Assessing the many criteria established to measure the stages of AD or other dementias is crucial in targeting necessary attention and support an individual may need. The impairment of memory and cognitive functions can lead to language deficits, hinder motor skills, diminish recognition, and limit organizational thought. In the process of aging, maintaining a steady QOL is important; however, it may prove difficult during the care of a person with AD or related dementias. Assessing one’s cognitive abilities is crucial to eldercare; it is important to adhere to the provided sixth-step criterion to pinpoint various functional deficiencies that results from dementia. Although there is no cure for AD, there are treatments and interventions that identify the causes, and methods that may slow symptoms. The care of any aging individual will require financial planning. Establishing a will and legal planning is best done early on although it may not always be a viable option for families and individuals. With AD affecting many people, national attention has been drawn, and legislative measures taken, in support of the aging community stricken with dementia. Along with facilities to assist with daily-living functions, community-based resources, and day care for adults in-home, national legislation was passed in 2011 calling for a plan for the United States in AD care. Many of these events are innovative steps taken to address the growing concern of AD.

REFERENCES Alcantara, C. (2013). Dementia and the self within (Unpublished master’s thesis). San Francisco State University, San Francisco, CA. Alzheimer’s Association (AA). (2011a). Alternative treatments. Retrieved November 4, 2011 from http://www.alz.org/alzheimers_disease_alternative_treatments

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Alzheimer’s Association (AA). (2011b). Alzheimer’s association. Retrieved December 5, 2011 from http://alz.org Alzheimer’s Disease Education and Referral Center. (2010, July). Alzheimer’s disease medications fact sheet. Retrieved from http://www.nia.nih.gov/Alzheimers/Publications/medi cationsfs.htm Alzheimer’s Disease Education and Referral Center. (2011, June). Alzheimer’s disease genetics fact sheet. Retrieved from http://www.nia.nih.gov/Alzheimers/Publications/geneticsfs.htm American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing. Arizona Technology Access Program. (2005). Assistive technology and Alzheimer’s disease: A caregiver’s guide. Retrieved December 4, 2011 from https://www.azdes.gov/InternetFiles/ Pamphlets/pdf/AAA-1101AFORPD.pdf Arvanitakis, Z., Wilson, R. S., Bienias, J. L., Evans, D., & Bennett, D. (2004). Diabetes mellitus and risk of Alzheimer disease and decline in cognitive function. Archives of Neurology, 6(6), 661–666. Baldwin, C. (2008). Narrative, citizenship and dementia: The personal and the political. Journal of Aging Studies, 22, 222–228. Brannelly, T. (2011). Sustaining citizenship: People with dementia and the phenomenon of social death. Nursing Ethics, 18(5), 662–671. California Advocates for Nursing Home Reform. (2011). Medi-Cal vs. Medicare. Retrieved December 19, 2011 from http://www.canhr.org/factsheets/medi-cal_fs/html/fs_medcal _overview.htm Dewing, J. (2007). Personhood and dementia: Revisiting Tom Kitwood’s ideas. International Journal of Older People Nursing, 3, 3–13. Evans, R. M., Hui, S., Perkins, A., & Lahiri, D. K. (2004). Cholesterol and APOE genotype interact to influence Alzheimer disease progression. Neurology, 62, 1869–1871. Retrieved from http://www.neurology.org/ Family Caregiver Alliance. (2011). Family caregiver alliance. Retrieved December 5, 2011 from http://www.caregiver.org/caregiver/jsp/home.jsp Genetic Testing. (2008). Chicago, IL: Alzheimer’s Association. Gingrich, N., & Egge, R. (2007). Developing a national Alzheimer’s strategy equal to the epidemic. Alzheimer’s and Dementia. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 3(3) 239–242. doi:10.1016/j.jalz.2007.04.378 Gorn, D. (2011). Lawsuit settlement ends fight over ADHC. Retrieved December 15, 2011 from http://www.californiahealthline.org/capitol-desk/2011/11/deal-keeps-adult-dayhealth-care-alive.aspx Jackson, L. (2002). I have Alzheimer’s disease. Retrieved from http://www.alzheimer.ca/english/haveAD/speakingout-intro.html Legal Plans. (2010). Chicago, IL: Alzheimer’s Association. Mayo Clinic. (2013). Alzheimer’s stages: How the disease progresses. Retrieved from http://www .mayoclinic.com/health/alzheimers-stages/AZ00041 Money Matters. (2010). Chicago, IL: Alzheimer’s Association. National Adult Day Services Association. (2011). That national voice for the adult day services community. Retrieved December 5, 2011 from http://www.nadsa.org/ National Hospice and Palliative Care Organization. (2011). Advanced directives. Retrieved January 4, 2011 from http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289 Reisberg, B., Ferris ,S.H., de Leon, M.J., & Crook T. (1982). The Global Deterioration Scale for assessment of primary degenerative dementia. American Journal of Psychiatry, 139(9): 1136-9. Signature Senior Living. (2005). Memory care. Retrieved December 9, 2011 from http://www. signatureseniorliving.com/LearnAboutMC.htm Strehler, B.L. (1977). Time, cells and aging, 2nd edition. New York, NY: Academic Press. Subhani, F. U. H. (2008). Beta amyloid protein: A cause or consequence in mild to moderate Alzheimer’s disease. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 4(4), 245. doi:10.1016/j.jalz.2008.05.1012

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Uniform Law Commission. (2011). Why states should adopt UGAPPJA. Retrieved September 9, 2011 from http://www.nccusl.org/Narrative.aspx?title=Why%20States%20Should%20 Adopt%20UAGPPJA U.S. Department of Health and Human Services (2011). National Alzheimer’s project act. Washington, DC: Assistant Secretary for Planning and Evaluation. Retrieved from http://aspe. hhs.gov/daltcp/napa/#AlzDisease

15

PALLIATIVE CARE Nancy Dudley BJ Miller Nate Hinerman Cristina M. Flores

LEARNING OBJECTIVES On the completion of Chapter 15, the reader will be able to •  Understand the definition, domains, and importance of palliative care •  Identify the importance of palliative care, specifically as it applies to

long-term care (LTC) and clients receiving LTC services and supports •  Describe how to measure the effectiveness of care in LTC palliative care

programs •  Become familiar with serious chronic disease trajectories, life-threatening

illness, and optimizing quality of life with palliative care interventions •  Recognize the importance of psychosocial support, spirituality, and

cultural needs as part of the plan of care in a transdisciplinary model of palliative care •  Discuss some of the challenges and opportunities in implementing palliative programs across the continuum of LTC •  Read about a successful hospice and palliative care program within a licensed assisted living community

According to the U.S. Census Bureau, over the next 40 years the population of the United States is projected to grow from 310 million to 439 million. By 2030, 20% will be age 65 and older (Vincent & Velkoff, 2010). Although people are living longer, the prevalence of chronic disease in the older adult population remains high. As reported by the Centers for Disease Control and Prevention (CDC), chronic diseases are the leading cause of death, disability, and medical costs, accounting for over 75% of national health care expenditures. Approximately 80% of older adults have one chronic ­condition and

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half have two or more. Death rates attributed to heart disease and stroke have significantly decreased, whereas conditions such as Alzheimer’s disease (AD), diabetes, and chronic lower respiratory diseases have increased (CDC, 2011). Although advances in technology have allowed people with chronic disease and life-threatening conditions to live longer, corresponding improvements in quality of life (QOL) have not followed. Over the past decade, multiple studies have addressed inadequacies in our health care system to care for people who are living longer with advanced illness. Inadequacies include insufficient management of pain and symptoms causing physical distress; fragmented care systems; poor communication among the medical team, individuals, and their families; and undue strains on caregivers and support systems (Morrison & Meier, 2011). Palliative care focuses on relieving suffering by using an interprofessional team to improve the QOL for individuals and their families who are burdened by serious chronic disease or life-threatening illness.

defining pALLITIVE care The World Health Organization (WHO) defines palliative care as an approach that improves the QOL of individuals and their families through the prevention and relief of suffering by way of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. Palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. Moreover, palliative care expands the traditional disease model approach for medical care to include goals of enhancing the QOL of patients and their families, optimizing functionality, and assisting with decision making (WHO, 2011). Timely palliative care for all types of patients with serious chronic disease or life-threatening illness is crucial. The Institute for Healthcare Improvement (IHI) identified areas in need of improvement as access and timely referral to palliative care and smooth transitions among care settings. IHI acknowledged that in today’s complex and fragmented health care system, providers are more focused on the needs of the system itself and not on the needs of patients and families (Balik, Conway, Zipperer, & Watson, 2011). The Institute of Medicine’s (IOM) 2001 report, “Crossing the Quality Chasm: A New Health System for the 21st Century,” helps health care systems provide better quality care by outlining how health care systems should operate. This includes respecting individual values, preferences, and expressed needs; coordinating and integrating care across boundaries of the system; providing information, communication, and education that people need and want; and guaranteeing physical comfort, emotional support, and the involvement of family and friends (IOM, 2003). The National Consensus Project (NCP) represents consensus achieved among nationally recognized experts on evidence-based guidelines for palliative care programs to ensure quality and consistency. Leadership, collaboration, coordination, and communication were recommended as necessary for an effective palliative care interprofessional team approach to support the QOL for patients and their families. With the goal of preventing and relieving suffering, the NCP recognizes that the aim of palliative care is to enhance QOL through evaluation and treatment that is ­patient-centered

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and involving the family unit in decision making. QOL is maintained by enabling the patient and family to clarify goals for cure or life prolongation and end of life (EOL). An interprofessional team is necessary to assess and treat the complex needs of patients with serious chronic disease or a life-threatening illness. Lastly, disciplines, including medicine, nursing, social work, chaplaincy, rehabilitation, pharmacy, nutrition, and others are part of the palliative care team (NCP, 2009). The National Hospice and Palliative Care Organization (NHPCO) defines palliative care as a model for quality, compassionate care for people facing life-limiting illness or injury, using a team approach to provide expert medical care, pain management, and emotional and spiritual support tailored to the individual’s wishes and needs. An individual’s needs must be continually assessed and treatment options explored and evaluated in regards to the individual’s values and symptoms. Support is also provided to families (NHPCO, 2011). As stated by the Center to Advance Palliative Care (CAPC, 2011), the goal of palliative care is to relieve suffering and improve QOL for individuals with advanced illness and their families. An interprofessional team provides care and support in conjunction with all other appropriate forms of medical treatment. Resources and teams include medical and nursing specialists, social workers, clergy, and others. Vigorous pain and symptom control are integrated into all stages of treatment. The palliative care approach decreases length of hospital stays and eases transitions between care settings, resulting in increased patient and family satisfaction (CAPC, 2011). The growth of palliative care programs is in response to the needs of individuals living longer with more serious, chronic, and complex conditions. CAPC and the National Palliative Care Research Center (NPCRC) are working in partnership to develop research for quality clinical care to serve as a foundation to build palliative care programs and systems to be integrated within the continuum of health care. Collaborating with and guiding policy makers, regulatory agencies, and federal funding agencies to support continued growth and development of palliative care is a priority (Morrison & Meier, 2011).

RECOMMENDED PRACTICES OF PALLIATIVE CARE Palliative care and hospice services were identified as a national priority for health care quality improvement. The National Quality Forum (NQF) identified 38 preferred practices to improve palliative and hospice care encompassing the IOM’s six dimensions of quality including safe, effective, timely, patient-centered, efficient, and equitable care (IOM, 2001; NQF, 2006). Essential elements embrace a holistic interprofessional approach attending to the individual’s desired physical comfort and emotional support through evidence-based practice. A palliative care program should be individual and family centered with the promotion of shared decision making, attention to the needs of the family, provision of bereavement services before and after a patient’s death, and coordination of care across care settings and the individual’s disease trajectory (NQF, 2006). Guidelines were developed to meet the needs of health care professionals caring for patients with advanced, chronic, or life-threatening illnesses. The National Consensus Project for Quality Palliative Care (2009) is a consortium of five leading U.S.based palliative care organizations, recognized experts who achieved consensus and developed voluntary, evidence-based guidelines to ensure quality and consistency of care (NCP, 2009). The mission of the NCP is to promote quality and reduce variation

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in new and existing palliative care programs. Identification of the needs of patients and families are based on a comprehensive assessment of the eight domains of palliative care. According to the NCP (2013), the eight domains of palliative care are •  Structure and processes of care •  Physical aspects of care •  Psychological and psychiatric aspects of care •  Social aspects of care •  Spiritual, religious, and existential aspects of care •  Cultural aspects of care •  Care at the EOL •  Ethical and legal aspects of care The guidelines serve as a foundation of quality palliative care allowing for assessment and treatment of pain and other symptoms. Individual and familycentered care, communication, collaborative decision making, and coordination of care across care settings are paramount (NCP, 2009). The NCP framework facilitates coordination of care across health care settings to promote quality and reduce variation in new and existing palliative care programs in hospitals, skilled care facilities, assisted living facilities, and in community-based programs. A comprehensive assessment of patient and family needs determine which services are needed to meet the physical, psychological, social, practical, and spiritual needs of patients and their families (NCP, 2009). Over the past 5 years, widespread use of the NCP guidelines and the related preferred practices from the National Quality Forum have served as a basis of palliative care programs (NCP, 2009).

CERTIFICATION OF PALLIATIVE CARE PROGRAMS Hospital-based palliative care programs have experienced the greatest growth. Eighty-five percent of hospitals with 300 beds or more have palliative care teams (CAPC, 2011). Moreover, palliative care programs in U.S. hospitals with 50 or more beds have increased by 157.1% over the past 11 years (CAPC, 2013). Recognized in 2008 as a new medical subspecialty, certification for hospice and palliative medicine (HPM) is offered by the American Board of Medical Specialties. Certification of inpatient hospital and long-term care (LTC) acute hospitals’ palliative care programs will begin in 2012. The Joint Commission (TJC), an independent and not-for-profit organization, provides accreditation and certification for over 19,000 health care organizations and programs to ensure safe and effective health care for the public. TJCs’ standards for a new advanced Certification Program for Palliative Care Programs are built on the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care and the NQF’s National Framework and Preferred Practices for Palliative and Hospice Care Quality (TJC, 2011). Certification will recognize hospital inpatient palliative care programs and programs in long-term acute care hospitals that demonstrate exceptional patient- and family-centered care.

Effectiveness of Care in LTC Palliative Care Programs The goal of LTC palliative care programs is to provide safe, effective, timely, efficient, and equitable resident-/family-centered care focused on optimizing function and the relief of suffering. An organized process for coordination and

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communication of care across settings and an appropriate and timely transition to hospice care supports aging in place and QOL. Monitoring processes of care and outcomes help to evaluate the effectiveness of care provided and define areas for improvement. A comprehensive admission assessment provides the foundation to formulate a plan of care to meet the needs of residents and their families. Validated instruments to assess aspects of care aligned with the eight domains of palliative care (NCP, 2009) assist in detecting changes in health status and/or elicit referrals such as social work or chaplaincy. Assessments should not be burdensome for residents or families. Health status changes trigger further assessment to determine whether acute illness or exacerbation of chronic disease is present. Benefits and burden of treatment are regularly assessed, and collaborative decision making that is resident/family centered further defines the goals and direction of care. Furthermore, continuous functional decline can be documented to support a timely and appropriate referral for hospice. Documenting visits by the interprofessional team and family, friends, or volunteers aid in assessing quality care and support of resident/family centered care. The concept of palliative care has expanded beyond traditional hospice care to include services and care for individuals and their families burdened by serious chronic disease or life-threatening illness. Palliative care is becoming an integral part of LTC by providing a framework for consistent quality care across care settings. An innovative model for patient-centered care, the goal of palliative care is to achieve the best QOL for individuals and their families. Early and prompt symptom control and pain management are a priority. Through collaborative decision making, patient and family goals of care are defined and supported, which can include curative care. The need for quality palliative care programs across the continuum of care will grow as the population ages. The following sections will address the domains of palliative care and conclude with current trends and challenges associated with implementing palliative care programs across care settings. A case study will describe a palliative care approach in an assisted living setting.

CHRONIC ILLNESS TRAJECTORY ARCHETYPES This section intends to induce the value of palliative care across the spectrum of wellness and disease management in the LTC setting. Palliative care is an effective service for anyone suffering from chronic disease. By definition, chronic diseases, although often preventable, are generally incurable and nearly always lead to some amount of morbidity. Seventy percent of deaths in the United States are attributed to chronic disease, which accounts for four of the top five causes of death. Chronic diseases are ordinary. Forty-five percent of the U.S. population has at least one chronic disease and 26% have multiple diseases. Given the demographic shifts within our population, the proportion of people living with chronic illness will rise over the coming decades. The economic burden is already profound, costing the United States more than $1.7 trillion/year to treat— or 75 cents of every health care dollar (Partnership to Fight Chronic Disease, 2009). The great majority of this expense is realized in lost productivity (Millken Institute, 2008), an important concern even among those older than the traditional retirement age of 65. By the end of this decade, health care costs are projected to reach 20% of the gross domestic product (GDP; California HealthCare Foundation, 2011).

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The relief of suffering and the promotion of QOL are ends in and of themselves. It is also true that feeling better allows for an individual to function better and for a longer time; with better functioning comes improved social and economic engagement. Palliative care constitutes the gold standard for the pursuit of QOL, yet is generally underrepresented in the LTC setting. Broadly speaking, palliative care is well known to improve medical care and lower its cost; when applied specifically to the palliation of the effects of chronic disease, it is easy to imagine additional economic gains. So, from any angle—individual or societal—ameliorating the burden of chronic disease with improved access to palliative care constitutes a singular national priority. As we’ve seen, palliative care revolves around suffering, rather than a particular disease (e.g., oncology) or an organ (e.g., nephrology). Suffering is an inherently subjective affair; two people with the same disease, or the same set of circumstances, may respond very differently to his or her illness and require different modes of support. This intersubjectivity otherwise represents a great challenge for medical science, and the crowning opportunity for palliative care. To identify patterns of need among people and to forecast and gauge templates of response, qualitative research efforts have blossomed. As with relatively objective and discreet variables, it turns out one can measure qualitative issues such as suffering. A mainstay tool for such an endeavor is the health-related quality-of-life questionnaire (HRQOL; for further information, see http://www.cdc.gov/hrqol). There are general HRQOL tools (e.g., McGill QOL scale) and condition-specific tools (e.g., liver transplant database quality of life— LTD HRQOL). Such tools are validated for reliability and statistical significance. In this way, science is able to focus its efforts to satisfy the needs of a population served—needs which that population self-identifies. Qualitative research has blossomed since the 1980s, and represents the natural progression of health care since the end of World War II. In 1947, the WHO expanded the definition of “health” to include not only the absence of disease but also a complete state of physical, mental, and social well-being (Younossi & Guyatt, 1998). This was a siren moment to which the world is still responding. Palliative care, then, has a mandate to not only make suffering less horrible—a negative framework—but well beyond, to foster living optimally, whatever the circumstantial frame of reference—a positive framework. This distinction is important to anyone living with chronic disease wishing to envision his or her life as full and potent. This has paved the way for intermingling models of care—medical and social, a defining characteristic of the field of HPM. Moreover, it has opened the doors for the exploration of theoretical and expressive arts and sciences to influence how we care. Narrative medicine, for example, grants that how one sees his or her illness dramatically affects his or her needs. Another example is the illness trajectory model, an amalgam of nursing and sociological sciences; this model takes into account both the course of an illness as well as the actions taken by participants, both patient and provider, to effect the course. In preparation for a description of various trajectories of chronic illness, with the above context in mind, we can conclude the following: (a) Subjective notions of health and illness are indeed measurable—to a point—and comprehensible across populations; this allows for the establishment of standards of care and training to anticipate and advocate for the needs of a population served. (b) Models of care, like notions of health and illness, are useful when taken in context, requiring interpretation and deference to the experience of the individual being served; with this in mind, a provider can avoid dogma and draw from various sources to integrate modalities of care titrated to the effect desired by an individual. It is critical to note that

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palliative care has developed itself in response to the expressed needs and wishes of the population of individuals it serves. All a palliative-care provider needs to hear to spring into action is that his or her patient is suffering.

Chronic Obstructive Pulmonary Disease Chronic obstructive pulmonary disease (COPD) is the fourth leading cause of death in the United States. Prevalence in 2000 to 2001 was 12 million. In 2005, COPD was directly responsible for 126,000 U.S. deaths (CDC, 2002). Despite more robust advances in mortality rates for other common chronic diseases, the death rate for COPD among men has decreased minimally and was entirely unchanged for women between 1999 and 2006 (CDC, 2008). By 2020, COPD will likely become the third leading cause of death in the United States. COPD is largely a disease of exposure, 75% of which is due to cigarette smoke. This fact has many implications, not least of which is the personal sense of culpability people with COPD often carry, whether personally or socially engendered. Therapy for COPD often includes inhaled bronchodilators, corticosteroids (inhaled or less-often systemic), and oxygen by nasal cannula or noninvasive positive pressure ventilation (e.g., BiPAP—bilevel positive airway pressure, a machine that helps users breathe more easily). Opiates are generally underused in the management of shortness of breath, yet remain first-line therapy. Prognosticating for COPD is especially challenging even among other chronic diseases with similarly prolonged and episodic trajectories such as heart failure or renal failure. Like these other diseases, the arc of COPD is marked by long periods of stable disease punctuated with acute exacerbations. Clinicians are often surprised to see how well COPD patients can appear out of hospital in between exacerbations. So, great care must be taken when offering a patient prognostic advice. Sadly, the result is too often that providers do not try and patients do not ask. The SUPPORT trial of 1995 tells us that although most patients with COPD prefer a treatment course dictated by comfort rather than prolonging life, they are more likely than their counterparts with lung cancer to die short of breath on ventilators in the intensive care unit (ICU; Claessens et al., 2000). Although these data are old, there is little doubt that COPD remains underserved by palliative care. Two trials are frequently cited in the literature to guide the clinician assessing prognosis during acute exacerbations: SUPPORT (1995) and the British Thoracic Society clinical audit (2002); the latter is more relevant since there have been significant therapeutic advances since SUPPORT. Age, comorbidity, and severity of disease as measured by oxygenation are all useful indicators of 3-month mortality, though no single indicator of severity has proven powerful enough to reliably predict death. Among those living with stable disease, FEV1 (forced expiratory volume in one second—the amount of air that can be forcibly exhaled from the lungs in the first second of a forced exhalation) and age are the most important predictors of 3-year survival. In a 2009 prospective observational study, among people living in the community with severe COPD, the following symptoms were reported: shortness of breath (94%), fatigue (71%), dry mouth (60%), cough (56%), worry (51%), irritability (42%), and chest pain (37%), to name some of the more common and distressing (Blinderman, Homel, Billings, Tennstedt, & Portenoy, 2009). Interestingly, several studies point to a similar spectrum of symptoms across a variety of chronic diseases (­Blinderman et al., 2009; Chang, Hwang, Feuerman, & Kasimis, 2000; Portenoy

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et al., 1994). However, people with COPD tend to have a higher burden of symptoms (Walke, Gallo, Tinetti, & Fried, 2004). These symptoms tend to increase relentlessly over time, of which fatigue is the most pronounced (Walke et al., 2007). In general, these symptoms are associated with emotional distress and, in turn, with poorer QOL (Cully et al., 2006).

Congestive Heart Failure Congestive heart failure (CHF) is a common disease of older adults with multiple etiologies, including myocardial infarction, hypertension, valvular disease, and infection. CHF accounts for more than 30,000 U.S. deaths per year (Gillum, 1993) and represents the leading cause of hospital admission among people older than 65 years (Blinderman, Home, Billings, Portenoy, & Tennstedt, 2008). In contrast to COPD, mortality rates are decelerating for CHF, though, owing again to our aging population, incidence is high and rising. Mortality within 1 year of diagnosis is between 30% and 40%, and 5-year mortality is between 60% and 70%. Just as with other chronic diseases, the general trajectory of living with CHF is marked by periods of stability and independence punctuated with acute exacerbations often requiring hospitalization. Furthermore, with subsequent exacerbations and hospitalizations there comes a decrement in prognosis and baseline functional status. Symptoms are predictable fallouts from a maladaptive neurohormonal response to vascular water imbalance, setting up a cascade of worsening water retention that is the hallmark of CHF. If the person has left-sided heart failure, then this retention manifests in pulmonary edema and dyspnea. If the person has rightsided heart failure, then hypervolemia manifests as peripheral edema. Mainstays of therapy include diuretics, angiotensin-converting enzyme (ACE) inhibitors, and beta-blockers. In a recent prospective observational study of people living with advanced CHF (i.e., NY Heart Association Class III or IV, of IV) and without advanced comorbidities, the following symptoms were consistently prevalent: Fatigue (66%), dry mouth (62%), shortness of breath (56%), sleepiness (52%), numbness or tingling in hands and feet (48%), worry (44%), feeling sad (43%), cough (41%), general pain (38%), and feeling nervous (36%). All symptoms were associated with varying degrees of distress and decremental QOL (Blinderman et al., 2008).

Cancer Cancer is a heterogeneous group of neoplastic diseases, many of which are curable, and many more are amenable to a prolonged course. As such, caution is required when generalizing cancer’s trajectory. The National Cancer Institute estimates that roughly 1.6 million people were diagnosed with cancer and roughly 570,000 people died of the disease in 2011. The average age at diagnosis is 66 and the median age of death is 73. The lifetime risk of being diagnosed with cancer is 41% (NCI—see website). Fifty percent of those diagnosed with cancer will die of the disease. Cancer is the second leading cause of death in older adults, behind heart disease. Increasing numbers of people with terminal cancer are ending life in the LTC setting. In most communities, where there are no residential hospice facilities, skilled nursing facility (SNF) remains the singular alternative to death at home or in an acute care hospital.

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In general, most solid tumors become terminal once they metastasize, one notable exception being testicular cancer. Hematological (e.g., leukemia, myeloma) cancers follow a different course in general. The Minimum Data Set (i.e., Centers for Medicare & Medicaid Services [CMS]-mandated nursing facility data collection) of 1999 revealed that 51.3% of cancer patients in nursing homes reported persistent and severe pain. About 23.4% reported weight loss, 21.8% reported depression, and 19.1% shortness of breath. In a 2005 study of 190,769 nursing home residents, only 5% of the cancer population received hospice services (Teno, 2001), the gold standard for EOL cancer care. Death may arrive spontaneously, as with a pulmonary embolus or catastrophic hemorrhage, or more commonly after a trajectory of prolonged functional decline and accelerating symptom burden.

Dementia Dementia is a state of cognitive impairment caused by various diseases severe enough to interfere with daily life. AD is by far the leading cause of dementia. Other etiologies include vascular disease, Lewy body disease, mixed, Parkinson’s, frontotemporal, Creutzfeldt–Jakob, and normal pressure hydrocephalus. Incidence of dementia is high and rising. Currently, 5.2 million—or one in eight—older Americans have AD; another 200,000 people younger than 65 carry the diagnosis. Of the 5.2 million, 3.6 million are women, though it is important to note that this is explained largely by women’s longer life expectancy; in other words, women are not more likely to develop AD at any given age. Life in a nursing home is the final common pathway by the age of 80 for 75% of people with AD, contrasted with a mere 4% of the general population. Two thirds of those dying from any dementia die in nursing homes, contrasted with 20% of cancer patients and 28% dying from all other conditions (Mitchell, Teno, Miller, & Mor, 2005). Roughly half of all LTC residents have dementia (Mitchell, Kiely, & Hamel, 2004a). Diagnosing dementia poses a difficult problem. There have been many advances of late in the reliability of clinical diagnostics; still, the only way to diagnose AD definitively is on autopsy. It is said that half of all cases of AD go undiagnosed (Alzheimer’s Association, 2011). The time between diagnosis and death is typically between 2 and 8 years. This protracted course, with a drawn-out terminal phase marked by the transition from cognitive to physical decline, makes prognosticating in dementia especially difficult. In a study of 323 Boston-area nursing home residents with dementia, the proportions of residents who had distressing symptoms at some point during the 18-month follow-up period were as follows: dyspnea (greater than or equal to 5 days/month), 46.0%; pain (greater than or equal to 5 days/month), 39.1%; pressure ulcers (Stage II or higher), 38.7%; agitation, 53.6%; and aspiration, 40.6%. Among residents who died, the proportion that had such symptoms increased as death approached (Mitchell, Teno, & Kiely, 2009). This same study confirmed that feeding problems and pneumonia were harbingers of approaching death, irrespective of treatment. The authors are careful to note this corroborates that dementia itself is the cause of death, and to suggest that comfort is not only the preferred goal of those families that are finally apprised of prognosis but also the more prudent (Mitchell et al., 2009). There are several special considerations in caring for people with dementia. Note that burnout of dementia caregivers is especially pronounced. Depression

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rates approach 50% among caregivers, higher than rates among cancer patients, never mind their caregivers. From the caregiver’s perspective, observing the disintegration of a personality—especially that which belongs to a loved one—is difficult to keep in perspective and often triggers grief. This is intermingled with ongoing practical concerns surrounding assisting with toileting and hygiene and responding to behavioral changes. Advanced dementia (i.e., cognitive performance score of 5 or 6, of 6) carries a 6-month mortality rate of 25% and an average life expectancy of 1.3 years (Mitchell, Morris, Park, & Fries, 2004b). Note this average exceeds the typical hospice eligibility rule of less than 6 months prognosis, in part, pointing to the challenge for hospice in treating advanced dementia. Although hospice is underused for the disease, dementia constitutes a rapidly growing segment of hospice enrollment, and is currently the fourth leading hospice diagnosis (11.2%; NHPCO, 2010). Recall that dementia is a terminal disease. In fact, the mortality rate of AD is increasing faster than any other terminal condition (Hebert, Scherr, Bienias, Bennett, & Evans, 2003). Just noting this conclusion may well prompt improved access to hospice and palliative care services. Another common issue is in regard to communication with those who are cognitively impaired. As impairment progresses, the patient’s ability to faithfully verbalize his or her suffering and its source wanes. It is critical that clinical staff in LTC settings be trained in responding to nonverbal cues and seasoned as to what symptoms to expect. This is especially challenging when staff turnover is high, when staff are less likely to know their patients well over time. Finally, there is the difficult issue of feeding. Recent data confirm that, for those with advanced dementia, tube feeding does not improve survival, heal bedsores, prevent pneumonia, or improve QOL. Nonetheless, roughly one third of nursing home residents with advanced dementia receive feeding tubes (Teno et al., 2011). Food is nutrition and represents sustenance; counterintuitively, to many, the primal urge of families to feed their loved ones needs to be checked when the feeding is imposed on someone with advanced dementia, just as with the final stages of most chronic illnesses.

Palliative Care Management: Optimizing QOL Broadly speaking, the palliative approach to treating people living with various chronic diseases is similar. Assessments should be made frequently and over time, beginning when significant symptoms persist until death and beyond for the surviving family. Patients will require more frequent assessment when suffering from an acute exacerbation of illness of any kind; recall that people often recover from acute spells but at a permanent toll. Frequent hospitalizations generally predict a worsening prognosis and should therefore trigger reassessment by the palliative care team of patient and family goals and expectations and new symptom burden. Advance care planning (ACP) is a critical component of best-practice palliative care. Yet, as a tool, ACP remains grossly underused and, even when completed, is too often ignored or forgotten by the provider or family at the critical moment. This is a complicated subject. Cultural barriers to discussing death are common; providers are notoriously inept at gauging prognosis; the subject may be repellent to consider; and we know that ambivalence is common when death finally nears,

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when abstraction becomes real. Given the unanticipated failing of conventional ACP, but buoyed by the deep impulse for self-determination and the desire to unburden loved ones, there is growing interest in both promoting and overhauling the process. Recent scholarship suggests that the better aim of ACP is to prepare patients and their surrogates for real-time decision making (Sudore & Fried, 2010). This mode alerts the patients and families as to the expected course and contingencies of disease as well as the processes and defaults within the medical system. Values and expectations are illuminated over time. The relationship among clinician and patient and surrogate is thereby fostered, and in this way a dynamic vehicle becomes established for faithful real-time decision making. There is great hope that better ACP will lead to better care for—and as defined by—the patient and family, and subsequently lower cost by curtailing expensive futile or unwanted care. This brings us to the notion of communicating difficult news. A telling survey of family members of dementia patients conducted in Ireland found that 83% of relatives said that patients should not be told their diagnosis. In contrast, however, if they were instead the patients, 71% of them claimed they would want to be told (Maguire et al., 1996). This constitutes an important and classic existential misfire. Of the many things this study conjures, it confirms why, in part, palliative care is so effective—drawing from empathy and “putting the shoe on the other foot.” A common refrain among providers reluctant to discuss the course of illness and its prognosis is that they fear upending the patient’s vital hope. Data clearly remind us that hope is a complex intrapersonal phenomenon and not a provider’s to give or take away. Indeed, patients and families generally prefer to understand the truth of their disease and are relieved—rather than burdened—when able to speak openly with their provider about life and death, even when the news is unwanted. Guidelines for discussing difficult news with patients and families follow. •  Make time and space for an open-ended conversation. Find a comfortable setting and sit down. Be sure to include families in the discussion, at the discretion of the patient; it is critical in these moments that the patient has his or her support system close at hand. •  Begin by asking the patient how much information he or she would like to know about the disease. This is a safe and ethical way to reveal the personal or cultural preference to remain agnostic and defer decisions to family members. •  Hope for the best and prepare for the worst. Give equal time to both. •  Align your hopes with those of the patient. For example, “I understand your concern, but we are not talking about giving up on treatment. We are asking you to consider what would be most important if treatment does not work as we both hope.” •  Encourage, rather than force, the dual agenda of hoping and preparing. Communicating difficult news is largely a process of advocacy, rather than imposition. •  Foster the notion that feelings and wishes are likely to evolve over time. See the discussion as an ongoing process, not a singular cemented moment in time. •  Respect and respond to emotions. This is where strong bonds between patient and provider are forged, making shared decision making far easier with time and more effective. Note that there is little data regarding symptom management in the long-term setting. We do know, however, as surmised by Gonzales and Widera (2011), that the experiences of people who die in LTC facilities are generally characterized by brief contiguous lengths of stay (Kelly et al., 2010); poor symptom control (Mitchell

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et al., 2004a; Rodriguez, Hanlon, Perera, Jaffe, & Sevick, 2010); high rates of hospitalization, including burdensome interventions (Mitchell et  al., 2004b); and poor access to hospice and palliative care services (Johnson, Teno, Bourbonniere, & Mor, 2005; Mitchell et al., 2004b). But as we have heard, the basic panoply of symptoms among chronic diseases is relatively consistent. Indeed, there are important details to consider with every particular disease and individual case. For example, owing to their propensity to incur water retention, nonsteroidal anti-inflammatory drugs (NSAIDs) are generally contraindicated for people with CHF. There are many challenges to managing symptoms in the LTC setting. Managing symptoms in the home setting is one thing, in the acute care setting quite another. Managing well in the LTC setting is different still. Consider the following: •  Proven symptom-management modalities are underused in the LTC setting, especially near death (Gonzales & Widera, 2011; Hall, Schroeder, & Weaver, 2002; Rodriguez et al., 2010). •  Comorbidities are common, which significantly complicate medical management. For example, many older adults have impaired renal function, which, in turn, increases sensitivity to many medications and their side effects. •  LTC is a difficult business with a heavy regulatory burden and institutional vagaries, making them challenging environments for personalized care (Gonzales & Widera, 2011). Staff turnover is often high with inverse impact on quality of care (Castle, Engberg, & Men, 2007; Gonzales & Widera, 2011). •  The dearth of an on-site physician presence or diagnostic capacity presents a challenge to working-up acute changes in a patient’s condition. Too often, the result is it is easier—and even seems more compassionate in the moment—to simply refer the patient to an emergency department. In summary, look back to a fundamental tenet of palliative care—teamwork. Suffering is a complex multidimensional phenomenon of human nature. It draws from every aspect of a person. As such, it is taxing to imagine that any one person could comprehensively treat another’s suffering, especially so within our health care system where there is not enough time for one person to touch every component—physical, emotional, spiritual, and philosophical. There are many variations on this theme, but at a minimum, the interprofessional team must at least comprise a physician, nurse, social worker, and chaplain. A better approach is to include a wider array of allied professions, including psychology/psychiatry, physical therapy, nutrition counseling, complementary and alternative medicine, art and music therapy, and pharmacy. True to the roots of hospice in the United States, volunteers bring yet another integral layer, ensuring that the pursuit of caring is grounded first in humanity. There are two intertwined goals of a good team: To coordinate and optimize the care of patient and family, and to encourage and support one another to thrive in this difficult yet rewarding work. Of the many models of interprofessional teamwork, a newer, more favorable concept is now called the transdisciplinary team. This model holds that each member of the team understands the basic professional perspective of the other members. This achieves at least three important things: The ability of the team to function well when missing any member; improved empathy and bonding among team members; and, symbiosis where the sum of the team is greater than its parts. Any such team requires leadership from all levels to flourish and tend to the task at hand of caring fully for patients and families all the way through to the end.

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PSYCHOSOCIAL CONSIDERATIONS Spirituality and Assessment Spirituality involves the intersection of questions of meaning, value, and relationship. Spirituality can inhabit or be informed by a religious tradition, or it can be something more personal. Because palliative care involves the total active care of a patient who is unresponsive to curative treatment, attending to the spiritual needs of patients at life’s end remains essential. A growing body of research indicates that spiritual care is an important patient need, as it can significantly affect health care decisions and their outcomes, including QOL (McCord et al., 2004). Hospice, a specialized form of palliative care designed to treat the family and patient as a unit of care, is especially well suited for providing spiritual support because of its interprofessional team approach to serving those who have life-threatening illnesses. Spiritual care can be implemented across all stages of care and in all care settings and can be informed by the patient’s family, cultural values, religious tradition, and personal frames of spiritual reference. Professionals with skills in assessing spiritual and existential issues can document a patient’s needs using the techniques of life review, hopes and fears assessments, as well as conversations that explore the patient’s meaning-making, life goals, afterlife beliefs, and potential desires to heal damaged relationships. Standardized assessment instruments, like the FICA (faith/ importance/community/address) Spiritual History Tool, as seen in Table 15.1, are commonly used for this purpose (see website: http://www.gwumc.edu/gwish/ clinical/fica.cfm). Spiritual assessment should be ongoing and the results reexamined as care settings or care plans change. Patients should have access to clergy from their own religious traditions, and caregivers should facilitate spiritual rituals and practices, particularly at life’s end. Although basic spiritual assessments can be conducted by any trained health care professional, a board-certified chaplain should be used for more formal spiritual histories, the results of which can be communicated and TABLE 15.1  FICA Spiritual History Tool Assessment Areas

Questions

F—Faith and belief

“Do you consider yourself spiritual or religious?” or “Do you have spiritual beliefs that help you cope with stress?” If the patient responds “No,” the health care provider might ask, “What gives your life meaning?” Sometimes, patients respond with answers such as family, career, or nature.

I—Importance

“What importance does your faith or belief have in your life? Have your beliefs influenced how you take care of yourself in this illness? What role do your beliefs play in regaining your health?”

C—Community

“Are you part of a spiritual or religious community? Is this of support to you and how? Is there a group of people you really love or who are important to you?” Communities such as churches, temples, and mosques, or a group of like-minded friends can serve as strong support systems for some patients.

A—Address in care

“How would you like me, your health care provider, to address these issues in your health care?”

Source: Reprinted with permission from Christina Puchalski, MD, FACP, Executive Director, The George Washington Institute for Spirituality and Health.

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documented in patient records (e.g., charts, computerized databases, and shared during interprofessional team rounds).

Spirituality and Plans of Care Health care professionals must determine how to integrate information from the spiritual assessment into the patient’s care plan. Special consideration should be given in the following contexts (Puchalski et al., 2009): •  Spiritual distress that leads to a felt sense of meaninglessness, conflicts between foundational religious beliefs, protracted family disagreements, or problems forgiving or being forgiven •  Spiritual distress leading to formal diagnoses such as suicidal ideation, depression, or exacerbated anxiety •  Spiritual beliefs outlining the acceptability of certain medications, interventions, or procedures (e.g., beliefs prohibiting blood transfusions or organ transplantation) Related to one’s spirituality are existential needs, which include those perceived by the patient to be vital to his or her QOL, the realization of his or her fullest potential and self-esteem, and crucial to his or her felt sense of security in the world. Table 15.2 illustrates a myriad of ways to care for a client’s spiritual and existential needs. Recent surveys indicate that many patients want to pray with their caregivers (Monroe et al., 2003). Research shows that after opiod analgesia, prayer is the TABLE 15.2  Spiritual Care Interventions Spiritual Care Strategies

Examples

Therapeutic communication techniques

  1.  Compassionate presence   2. Reflective listening, query about important life events   3.  Support patient’s sources of spiritual strength   4.  Open-ended questions to illicit feelings   5.  Inquiry about spiritual beliefs, values, and practices   6.  Life review, listening to the patient’s story   7.  Continued presence and follow-up

Therapy

  8.  Guided visualization for “meaningless pain”   9.  Progressive relaxation 10.  Breathing practice or contemplation 11.  Meaning-oriented therapy 12.  Referral to spiritual care provider as indicated 13.  Use of story telling 14.  Dignity-conserving therapy

Self-care

15.  Massage 16.  Reconciliation with self or others 17.  Spiritual support groups 18.  Meditation 19.  Sacred/spiritual readings or rituals 20.  Yoga, tai chi 21.  Exercise 22.  Art therapy (music, art, dance) 23.  Journaling

Source: Reproduced courtesy of the Journal of Palliative of Medicine, c/o Mary Liebert, Inc.

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second most common means of pain and symptom control. Requests for prayer should be considered empathically and skillfully by the care practitioner, and when the need arises, referrals to board-certified chaplains, clergy, and other specialists should be made. In addition, spiritual care is often conducted collaboratively with bereavement care, where grief counselors can offer specialized support to the dying patient, those experiencing anticipatory loss, and those who have survived a loved one’s death. Caregivers also may send cards, attend funeral and memorial services, and participate in other rituals to provide ongoing support to friends and family of the deceased. Because no single care professional can singularly treat the combined physical, psychosocial, spiritual, and personal needs of dying patients, palliative care uses a team-centered approach. Although the physician may often take a lead role on the team, that model need not necessarily be the only format, especially if a patient feels more inclined to communicate with a nurse, social worker, chaplain, or other team member. Because spiritual care is a fundamental part of efficacious palliative care services, and can be implemented in hospice, hospital, long-term, and other clinical settings, team members may receive additional training in this area.

Culturally Sensitive Care Individuals inhabit various sociocultural identities simultaneously and movement among these identities is fluid, depending on need or circumstances. Thus, being part of an ethnic, racial, cultural, or socioeconomic group is not the only factor influencing a patient’s response to, and decisions for, care. Ethnocentrism, or making judgments and/or generalizations about others based solely on one’s own cultural assumptions and biases, must be avoided in health care delivery. One mechanism to safeguard against such attitudes involves demonstrating cultural humility. Cultural humility includes empowering patients and families to participate actively in the systems of care delivery and recognizes that both the patient and provider have something worthy to contribute. Cultural humility encourages caregivers to (Tervalon & Murray-Garcia, 1998) •  Demonstrate cultural self-awareness, including knowledge of one’s personal biases and beliefs •  Implement patient-centered care through active listening and empathy •  Consider each patient individually, letting the patient teach the caregiver about his or her cultural beliefs, and never assuming something based on the caregiver’s cultural stereotypes •  Transform traditional caregiving paradigms of “medical expert versus the patient,” and instead become a “student” of the patient, letting the patient direct the care plan •  Acknowledge the patient as an essential and valued member of the therapeutic alliance, who deserves respect and fair treatment Culture affects nearly every interaction in health care, and provides an organizing perspective for universal experiences such as illness, dying, and death. Because culture plays such a vital role in providing meaning, values, and guides to decision making, care providers must attend to the cultural factors influencing their patients. Cultural competence refers to conceptual frameworks designed to assist caregivers in serving patients from diverse cultures. Primary components include avoiding

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stereotyping, refraining from judging the worth of differing perspectives, understanding that culture is not defined simply by ethnicity, and knowing that there may be more differences within than between cultural groups. Cultural competence also includes efforts to curtail racial/ethnic disparities in health care access and to tailor care to meet patients’ social, religious, and linguistic needs. Caregivers should also become aware of their patients’ cultural values because ethical principles and medical procedures viewed as beneficial or morally obligatory by one cultural group might not be shared by another (or may even be perceived as harmful). Truth telling in medical arenas requires “truth hearing,” that skill by which a practitioner listens carefully to what the patient is really asking and collaborates with the patient’s goals for care, even when the provider’s choices would be different. Patients have a right to accurate diagnostic and prognostic information, and caregivers should be flexible and willing to take time for patients and families to discuss thoroughly the values of the patient to ensure they are supported. Culturally appropriate alternatives are also needed, including the translation of educational materials, legal forms, and institutional literature to different languages. Those for whom English is a foreign language should also be offered a translator. Materials such as ACP documents should have their origins within the patient’s community and reflect synchronous cultural values and perspectives. The practice of cultural humility and competence always occurs best in the context of a relationship, one filled with a felt sense of fidelity and trust, and one open to honest exchange. Trust especially is a complex process that develops in relationships and in response to events. Providers should strive to inculcate fiduciary trust (i.e., that the caregivers have patient’s best interest at heart), competence trust (i.e., that the caregivers is skilled and knowledgeable), and interpersonal trust (i.e., that the caregivers are empathic, credible, and reliable). The perceived lack of any of these attributes could lead to mistrust. For example, it is unethical for caregivers to deliberate over costs when making treatment decisions at the bedside. The following interventions may be useful in developing rapport that leads to trusting, respectful, and efficacious relationships: •  Practice cultural humility and cultural competence. •  Move from being an “expert” to a “student” of the patient. •  Learn about your patients (including their beliefs, expectations, and values). •  Know what “QOL” means to your patients. •  Ask questions and listen carefully. •  Generate a “therapeutic alliance” even when death is imminent. •  Demonstrate compassion and empathize with the patient’s and family’s suffering. •  Use translators anytime when facing language barriers. •  Ask open-ended questions (i.e., questions that elicit dialogue). •  Know one’s own personal biases and preferences. •  Present prognosis, treatment options, costs, adverse effects, and benefits, and any other relevant information in a language that patients and families can understand. •  Assess patients’ understanding by asking them to tell what they have understood and whether there is anything else they might need to know to make informed choices. •  Enable hope by showing respect for the patient’s beliefs and values and by creating an atmosphere in which the dying can search for their own meaning. •  Explore what “healing” means for the patient.

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•  Convene a family meeting if there is disagreement among the family about the care plan, invite a translator if indicated, and focus the meeting on what the family agrees on while defining any specialized language as it arises. Many such disagreements result from misinformation. Finally, should curative treatments fail, caregivers should never utter the words, “there is nothing more we can do.” There is always more one can do: Caregivers can sojourn with the patient (e.g., be present in a way that communicates that the patient is not alone), bear witness and provide companionship, treat pain needs, attend to experiences of suffering, facilitate culturally appropriate experiences for healing (as desired), and address the grief of friends and family when the patient dies.

When Dying Is Near Honoring a patient’s treatment wishes is legally and ethically obligatory. If a treatment is perceived to be disproportionately burdensome to the patient, or will not benefit the patient, it is ethically and legally permissible to withhold or withdraw that treatment, presuming such a decision corresponds with the patient’s wishes. In contexts in which a patient opts to withhold or withdraw life-sustaining treatment, such cases are not tantamount to “assisted suicide” or euthanasia. Instead, patients have a right to decide whether a life-sustaining treatment is “morally obligatory” or an “artificial block to the natural dying process.” In general, our health care model privileges patient autonomy (i.e., the patient’s right to self-determination). However, some cultures prefer to make decisions as a family, and, in such cases, special consideration ought to be given so that the ethics of the patient and his or her family are respected. When making any treatment decision, a patient must give informed consent, which means that the patient gives consent freely (i.e., is not coerced), has an adequate understanding of the consequences, and demonstrates mental competence when making a treatment choice. Practitioners, when the patient enters the phase of actively dying, should always communicate information in culturally appropriate ways. To help achieve this, caregivers should openly and honestly learn the patient’s EOL concerns, hopes, fears, and expectations. Caregivers must skillfully assess the most appropriate times for such conversations, recognizing that the patient may choose someone he or she trusts most from the interprofessional care team (e.g., a nurse, physician, social worker, chaplain, etc). Hospice in particular uses an interprofessional care team approach, and specializes in improving QOL and mitigating physical, psychosocial, and spiritual pain. A referral to hospice, or a discussion of the benefits of hospice, is appropriate anytime death is imminent, the patient talks about wanting to die, is recently hospitalized for severe progressive illness, or suffers and maintains a poor prognosis. Furthermore, it is important to recognize that recent studies show that many patients live longer and enjoy a better QOL in hospice, in lieu of continuing curative treatments (Puchalski et al., 2009). Although they can be difficult, there are many vital reasons to initiate EOL conversations. Patient and family choices will differ based on the information (i.e., more information may yield more choices), the patient could receive undesired treatments (e.g., cardiopulmonary resuscitation [CPR]), and such conversations may allow time for healing relationships, completing goals, completing wills, and provide overall time for family preparation. In general, EOL conversations should

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assess a patient’s relative desire for emphasis on life prolongation versus the patient’s relative desire for emphasis on QOL. Advance directives (i.e., a living will with a health care proxy assigned), “do not resuscitate” (DNR) orders, mechanical ventilation, feeding tube, antibiotics, hemodialysis, and an understanding of palliative care are all specific topics about which the patient’s preferences should be known and documented. Caregivers also should be aware of a patient’s surrogate decision maker, in the event the patient loses capacity. Knowledge of the patient’s wishes in these areas also will assist overall efforts to relieve pain and prescribe appropriate medication. Finally, bereavement resources should be offered to the family. In hospice, support of the loved ones as they grieve or react to the loss is ongoing even after the death of the patient. Bereavement support includes attending to the thoughts and feelings as well as the somatic, behavioral, and spiritual responses of the bereaved. Caregivers should remember that the course of grief is a highly variable, individualistic, and complex evolving process with multiple dimensions. Signs of grief may appear immediately after the death, or may be delayed, or even absent. There is no predetermined timetable for “completion” of the grieving process. Those grieving may be offered counseling support from a qualified individual or group. Most hospices provide free grief counseling to family and friends of the deceased and some offer the same services free of charge to any member of the community who needs support in grieving a loss.

IMPLEMENTING PALLIATIVE CARE PROGRAMS IN LTC SETTINGS Challenges and Opportunities In this chapter, the importance of palliative care has been illustrated and argued. Some of the “challenges” involved in managing palliative symptoms in LTC settings have been highlighted (e.g., comorbidities, regulatory issues, staff training, and turnover). Nevertheless, the population of clients living in the continuum of LTC settings (i.e., those at home being provided care from informal or formal caregivers all the way to those being cared for in skilled nursing facilities, as described throughout Part I of this book) are the most likely people to benefit from palliative care programs. Although many people die in hospitals, client surveys reveal that they would prefer to be at home with the support of caregivers. The development of palliative care programs within LTC settings is one approach to caring for chronically ill persons that stresses the relief of pain and suffering. Today, this remains a severely unmet need. At a time when hospital costs are skyrocketing and people are seeking to spend their final months and days in a home setting, a number of palliative care programs at leading medical centers are seeking alternative placements for their patients in the community, with limited success. LTC models that choose to support residents chronically and terminally in their current setting will benefit from developing systems of care that promote resident–staff relationships and optimize communication and collaboration among care providers and palliative and hospice professionals. Institutional and regulatory “barriers” are not an excuse to avoid the development of these important programs. Next, you will read about a successful model of palliative care with an LTC setting for older adults.

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CASE STUDY: A HOSPICE AND PALLIATIVE CARE PROGRAM WITHIN AN ASSISTED LIVING COMMUNITY The following case study describes a successful hospice and palliative program created within a nonprofit state-licensed assisted living community in San Francisco, California. The program was established in October 2010. Since opening (17 months ago at the time of this writing), the University Mound Ladies Home (UMLH) Hospice and Palliative Care Program has successfully served over 20 men and 40 women in the hospice and palliative care program, 65% of whom were served at below market rates.

The Assisted Living Community The UMLH has evolved over the past 125 years to meet the changing needs of older persons in San Francisco. The original “Lick Old Ladies Home,” established in 1884 with a $100,000 bequest from James Lick, was a large, three-story wooden building on 25 acres of land at the present location. In 1932, the Home’s present Colonial Revival building was constructed at 350 University Street. The Ladies Home’s matron lived on the premises, and the chief nurse and her husband, two kitchen helpers, and the chef lived in rooms on the second floor. Today’s UMLH represents collaboration between eldercare professionals and lay people, assisted by area universities and city government, all seeking to fully realize the vision of this treasured institution: to provide affordable, compassionate care to both men and women in a beautiful residential setting.

The Market Currently, in California there are more than 8,000 licensed assisted living communities (also called residential care facilities for the elderly or RCFEs). These have the capacity to serve over 158,000 persons—a population exceeding the number of people in nursing homes. Residential care can be an alternative to nursing homes and homeand community-based care for those with functional and/or cognitive limitations, including persons receiving hospice care and palliative care. Policy changes, coupled with consumer preferences, have helped make residential care the fastest growing area in LTC. In California, there has been a 34.3% increase in the number of facilities over the past 10 years. Yet typical monthly rates of $5,000 and up exclude people of modest means. Assisted living residents nearing EOL have high rates of physical symptoms and need more effective palliation of symptoms near the EOL. Deficiencies and widespread suffering experienced by older adults or ill Americans and their families around EOL issues are well documented. Terminally ill patients frequently express concerns about what dying will be like: how their bodies may change as disease progresses, how medication may alter the effects of these changes, and whether and how their preferences will be respected as they become more ill.

The Vision and Program The vision of the UMLH Hospice and Palliative Care Program is to provide a beautiful, serene residence in San Francisco for adults suffering from a terminal or

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life-threatening illness. Individuals suffering from prolonged illness often cannot remain at home due to increased care needs, need for more sophisticated equipment and medicines, and inability to afford 24-hour care at home and a lack of full social support. UMLH worked specifically with state regulatory agencies and local authorities (e.g., fire authorities, the state licensing agency, advocacy, organizations) to insure complete compliance with all local, state, and federal regulations in the development of the hospice and palliative care program. This insured the success of the implementation phase of the program. The program continues to evolve and progress. Development and fund­raising efforts have allowed for a “scholarship fund” to be created for residents unable to afford needed services. The leadership team, staff, residents, families, and community continue to grow and adapt to the culture of this special program that brings a special serenity to the entire home. A continuous quality improvement component allows for the ongoing enhancement of services.

The Services Hospice services: Working in collaboration with Medicare-certified hospice agencies, UMLH provides eight hospice beds for women and men with EOL needs. UMLH also has respite beds available. Residents receive individualized services and compassionate care in an intimate setting. Under the coordination of licensed nurses with comprehensive hospice experience, a team of professional staff and qualified caregivers provide personalized, 24-hour care. Additionally, UMLH has trained and dedicated volunteers who are also available to provide additional empathy and support to residents and their loved ones. Palliative care services: The palliative care services provided by UMLH focus on helping residents and families achieve the best possible QOL when dealing with life-threatening illness. Health care professionals are available to assist residents and family members with coordinating palliative care services. Mindful caregivers provide around-the-clock assistance to residents. Daily care and activities are individualized to promote the resident’s comfort and allow enjoyment of life.

SUMMARY Palliative care is becoming an integral part of LTC by providing a framework for consistent quality care. LTC palliative programs are continuing to grow to support aging in place and QOL. Resident-/family-centered care that enhances communication, collaborative decision making, and coordination of care across care settings is needed to care for our aging population, which is living longer with complex chronic conditions or life-threatening illness. Using a transdisciplinary team approach, palliative care provides resident-/ family-centered care that is safe, effective, timely, efficient, and equitable. Focusing on optimal functioning with the relief of suffering for residents and their families, palliative care allows for early identification and impeccable assessment for treatment of pain and other symptoms—physical, psychosocial, and spiritual. The eight domains of palliative care (National Consensus Project for Quality Palliative Care, 2013) serve as a framework for quality palliative care programs.

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Continual assessment of resident/family needs, exploring treatment options, and evaluation in respect to resident/family values and preferences supports best QOL for both residents and their families. Through continual monitoring of functionality and resident/family decision, palliative care allows for an appropriate and timely referral to hospice.

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Rodriguez, K. L., Hanlon, J. T., Perera, S., Jaffe, E. J., & Sevick, M. A. (2010). A cross-sectional analysis of the prevalence of undertreatment of nonpain symptoms and factors associated with undertreatment in older nursing home hospice/palliative care patients. American Journal of Geriatric Pharmacotherapy, 8(3), 225–232. Sudore, R. L., & Fried, T. R. (2010). Redefining the “planning” in advance care planning: Preparing for end-of-life decision making. Annals of Internal Medicine, 153, 256–261. Teno, J. M. (2001). Quality of care and quality indicators for end-of-life cancer care: Hope for the best, yet prepare for the worst. In National Research Council, Improving Palliative Care for ­Cancer (pp. 96–131). Washington, DC: National Academies Press. Teno, J. M., Mitchell, S. L., Kuo, S. K., Gozalo, P. L., Rhodes, R. L., Lima, J. C., & Mor, V. (2011). Decision-making and outcomes of feeding tube insertion: A five-state study. Journal of the American Geriatrics Society, 59, 881–886. Tervalon, M., & Murray-Garcia, J. (1998). Cultural humility vs. cultural competence: A critical distinction in defining physician training outcomes in multicultural education. Journal of Health Care for the Poor and Underserved, 9(2). Vincent, G., & Velkoff, V. (2010). The next four decades, the older population in the United States: 2010 to 2050 (Current Population Reports, P25–1138). Washington, DC: U.S. Census Bureau. Walke, L. M., Byers, A. L., Tinetti, M. E., Dubin, J. A., McCorkle, R., & Fried, T. R. (2007). Range and severity of symptoms over time among older adults with chronic obstructive pulmonary disease and heart failure. Archives of Internal Medicine, 167(22), 2503e–2508e. Walke, L. M., Gallo, W. T., Tinetti, M. E., & Fried, T. R. (2004). The burden of symptoms among community-dwelling older persons with advanced chronic disease. Archives of Internal Medicine, 164(21), 2321e–2324e. World Health Organization (WHO). (2011). WHO definition of palliative care. Retrieved from http://www.who.int/cancer/palliative/definition/en Younossi, Z. M., & Guyatt, G. (1998). Quality-of-life assessments and chronic liver disease. American Journal of Gastroenterology, 93(7), 1037–1041.

16

TECHNOLOGICAL TOOLS IN LONG-TERM CARE: THE STATE OF THE ART AND PRACTICAL CONSIDERATIONS FOR ADOPTERS David M. Kutzik David C. Burdick

LEARNING OBJECTIVES On the completion of Chapter 16, the reader will be able to various technological tools, such as call systems, alarms, and •  Recognize  behavioral-monitoring systems •  Understand the services provided to care facilities to maintain organiza-

tions and connection with their patients and community •  Analyze organizations using these advanced tools for the benefit of their

patients •  Discuss the important topic of technological tools helping adopters

with care, and providing a dialogue for high-tech advancements in the expanding realm of long-term care (LTC)

Whenever the word “technology” appears in a chapter title, there is likely an expectation that the focus will be on cutting-edge futuristic gadgets. Indeed, we cannot count the number of keynote speeches at professional and academic conferences relating to LTC in which technovisionaries have painted a veritable George Jetson future “just around the corner,” where fantastic gadgets and gizmos will robotically provide quality low-cost care while human caregivers sit back and let the “technology” do the work. Visions of such “robocare” and stories about the latest new techno thing coming out of the lab are no doubt entertaining, but they are not what this chapter is about. Rather, we focus on real technologies currently deployed across the continuum of care in settings ranging from the private residence to skilled nursing facilities where they are integrated into the care delivery and business models

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by providers. In addition, we limit our focus to devices and systems that in various ways combine computing, information processing, and telecommunication—in other words relatively “high tech” tools. These are sometimes referred to as intelligent assistive technologies (IATs). This is not to say that “low tech” tools such as grab bars, walkers, and other patient transfer devices are not essential to providing effective care and maximizing the safety and independence of frail and chronically ill populations. These technologies are just not the subject of this chapter. (For a comprehensive review of this domain, see Furphy, Lindstrom-Hazel, & Burdick, in Barney & Perkinson, 2014.) Before proceeding, a few short points are in order. The first is terminological, or more properly terminological-conceptual. It concerns our use of the somewhat cumbersome phrase “technological tool.” We choose this combination of words to remind the reader that technologies are not simply gadgets that operate on their own, more or less independent of human input. Rather, they are always enmeshed in organized networks linking persons and devices in which the devices function as tools to help the humans to do their job. This is not a new idea, but it is an important idea since so many people have a simplistic and mistaken view of technology in LTC settings simply as “gadgets.” Our second point relates to commercial products. The technological tools used in LTC do not magically appear on the doorstep of care provider organizations in a plain brown wrapper. They are developed, branded, marketed, and serviced by for-profit technology companies and delivered through networks of vendors, integrators, resellers, and installers. Hence, there is simply no way to discuss these without referring to name-brand products. Most of the products discussed are widely available and easily purchasable, whereas a few others are precommercial and not yet available for purchase. We only include examples of “emergent products” that we realistically expect to become available in the next year or 2. We do not include one-of-a-kind demonstrations by either small companies or university-based research projects as past experience demonstrates that most will not make it to market. We certainly do not want to minimize the importance of good basic science in the development of effective evidence-based technological tools, but space constraint limits our discussion here. (For additional discussions, see Burdick, 2012; Burdick & Kwon, 2005.) Finally, the selection of products for this chapter is intended solely to provide representative examples of the state-of-the-art technological tools for LTC. Inclusion of specific name-brand products should not be construed as endorsement. Although the lead author has been and continues to be involved in research using some of the products discussed, neither author currently has any special financial interest connected with the success or failure of any of these products and companies.

A REVIEW OF TECHNOLOGICAL TOOLS We turn now to our analysis of specific “technological tools”: what they are, how they work, where and how they are used, and how they help improve the efficiency and quality of care. The types of tools we will examine include (a) emergency response systems, (b) wandering tracking and prevention systems, (c) remote person monitoring (RPM) systems, (d) rehabilitation systems, (e) teleconferencing systems, (f) social networking technologies, and (g) electronic care record (ECR) systems. Wherever possible, we use concrete real-world case examples of how these technologies have been actually implemented and used by care ­providers,

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s­ ometimes drawn from the lead author’s direct personal experience working with them in a researcher or researcher-developer role.

Call Systems There are basically two types of call systems, those designed for use in residential facilities (i.e., congregate independent living, assisted living, or skilled nursing facilities) and those installed in private dwellings. Home-based products, although generally marketed to individual consumers, are also used as tools for formal care provision in home care.

Call Systems in Residential Facilities Facilities-based call systems typically have hardwired buttons and pull cords placed in the resident’s living quarters, usually in the bathroom and one other place such as the bedroom. When intentionally triggered by the resident, a signal is sent to either a dispatcher or routed to the appropriate staff person. Two-way talk capability has recently become a common feature of these systems, allowing the resident and staff to speak without using the phone. Additionally, recent advances in wireless networking technologies have made reliable wireless versions of call systems widely available. Although more costly per unit, they do not require the infrastructural investment of routing dedicated cables throughout the facility. They typically provide a variety of useful functions such as wireless paging of staff via mobile devices. Paging functions are also available as add-ons that upgrade the capacity of older wired systems to allow them to work with mobile devices. Such products often use a paging telephone system capable of routing calls or sending messages to the appropriate staff via a pager or mobile phone. The current state of the art for these systems reflects an integration of traditional call, two-way communication, telephone-routing functions together with alarm functions (e.g., fire, smoke, wandering resident) into a single computerized “dashboard” providing a centralized single safety and security system. The trend is toward “bundling” call, alarm, and telecommunication systems into one product, referred to as a “convergence of technology” in academic/research circles.

Call Systems in Private Residences Personal emergency response systems (PERS) are the single most widely adopted telecommunications technology in LTC, with nearly 1 million customers in the United States and Canada (Frost & Sullivan Research Service, 2011). Costing between 1 and 2 dollars a day, these services field emergency calls 24/7 and dispatch help based on individualized protocols similar to European social alarm systems, discussed later. The typical installation consists of a wireless, portable actuator, often worn as a pendant or wrist watch, and a specialized telephone that serves as a base station and is programmed to autodial the service’s switchboard when it receives a signal from the pendant. Marketed primarily to individuals, PERS provide a measurable degree of peace of mind for the users and their families as well as greatly increased safety for those individuals who suffered a health crisis or fall and who pushed the button (Roush & Teasdale, 1996). The American PERS provider LifeAlert claims that they respond to a crisis requiring emergency medical team intervention every 11 minutes (LifeAlert, n.d.).

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However, PERS products are not foolproof, precisely because they are designed to respond to a client who must push the button, an act that requires both the intention as well as the physical capacity to do so. A significant proportion of older adults with PERS devices fail to use them in cases of need, such as not pushing the button after a fall. Certainly, being too incapacitated to push the button accounts for part of this problem, yet researchers have also uncovered additional reasons. For example, Inderwies (2012) found that a high proportion of visiting nurse clients, for whom the PERS was prescribed, simply do not wear their pendants. Indeed, our own research experience with this same study population has connected us with one older adult who repeatedly refused to push to button after falling or fainting because she did not want to “bother” the people at the other end. When probed by the interviewer, it became clear that this individual did not want to appear “too frail” lest she be forced by others to move from her home to a residential facility (see the organizational case example for KeystoneCare that follows).

Passively Actuated Call Systems and “Smart” Alarms Whereas the call systems discussed above require someone to press the button to send an alert, passively actuated alarms and call systems are designed to automatically detect a potential problem and immediately communicate this information to the appropriate person(s). These systems typically combine automated sensor-based data capture and software-based analytics to determine if and when a problematic behavioral event alert has occurred. Problematic behaviors include such events as wandering and elopement as well as falls, leaving a bed unassisted, urinating in bed, and night time frenzied activity all too familiar to those who work with dementia patients. Also called “smart alarms,” these products have different degrees of “smartness” with respect to software-driven interpretation of sensor data. From our perspective, these are stripped-down behavioral-monitoring systems that function as passively actuated alarms and call systems as opposed to the more robust and sophisticated behavioral systems discussed below. The most common types of passively activated call and alarm systems used in LTC settings include wandering alarms, fall alarms, bed alarms (i.e., out of bed/ urination), and nighttime activity alarms. Each is designed to alert caregivers to problematic behaviors of the monitored individual in as close to real time as possible. Each is also both an “alarm” and a “call” system because they can sound an alarm at the site of the behavioral event (e.g., a patient getting out of bed) and send this information to dispatchers or distant caregivers.

Wandering Alarms Wandering Alarms in Institutional Settings Several kinds of wandering alarms are commonly used in various care settings where the problems of wandering and elopement are all too familiar. Basic systems (e.g., Stanley-Blick, n.d.) use radio frequency identification (RFID) tags and strategically placed RFID decoders to detect the proximal presence of each resident and “know” who they are. The RFID tag is typically worn as a bracelet or broach by the person being monitored. The controller contains an RFID decoder and is positioned at doorways that open onto restricted areas, such as exit doors. When the wearer of

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an RFID tag approaches the restricted door, the controller receives a wireless signal with the identity code of the tag and checks it against a computerized list of persons who are allowed to pass and who are not. If the individual is “cleared” to pass, he or she does so without generating an alarm condition. Conversely, if the individual does not have permission, this generates an alarm condition that typically results in an auditory alarm being triggered and/or the door being locked shut, whereas it would automatically be unlocked for an individual wearing an RFID tag that gives permission to enter the restricted area. Current state of the art links the individual alarms into a facility-wide network monitored by a centralized computer although individual nonnetworked units are still common. Networked systems (such as SecureCare®, n.d.) are designed to be integrated with bundled fire, call, and telephone systems discussed above. Networked systems make it possible to divide buildings into permitted and restricted zones and create levels of permissions that allow different individuals different degrees of access to the zones. Here, all residents, employees, and guests wear the RFID tags and the system tracks everyone through controlled doorways and passageways allowing access based on predetermined protocols. Two important ethical concerns have been raised about residential-based wandering alarms (O’Neill, 2003). The first relates to restriction of movement of individuals deemed to be at risk for wandering. The second relates to the potential stigmatization of residents required to wear the RFID tags, such as patients in a memory unit who are seen as high risk for wandering. With respect to the first point, there has been a lively debate reflecting an emerging consensus that these technologies actually result in a reduction of restrictions for the most cognitively impaired individuals and have in fact resulted in a decrease in the proportion of persons confined to dementia units (Hughes & Louw, 2002). Regarding the potential stigma of residents required to wear an RFID bracelet, it is likely that requiring everyone, including staff and visitors, to wear RFID tags will substantially mitigate this concern. The key issue is how to use these tools to maximize the resident’s autonomy and dignity while greatly reducing the risk of the person wandering off and experiencing harm.

Wandering Alarms in the Private Residence Recently, there have been several systems applicable to the problem of wandering, useable for persons living independently in the community. There are basically two kinds of systems, elopement detection and mobile tracking devices. Elopement detection systems are essentially alarm systems triggered by the monitored individual leaving the residence. Using conventional burglar alarm hardware (e.g., door and window contact switches, alarm controller, telephone autodialer) they can sound a local auditory alarm and call a centralized switchboard when the person leaves the house. Typically such systems are set to operate at night, when an older person is most likely to experience the urge to leave the residence. Provided as a communitybased service managed and funded by the local council (or municipal government), wandering alarms have been piloted extensively in the United Kingdom as part of a national program to promote the use of care technologies (i.e., Full System Demonstrator Grants). The case of Council Perth-Kinross in Scotland is likely typical. The wander alarm service was developed as an extension of the community alarm infrastructure. Like the community alarm, an assessment worker determines that a person qualifies for the service and a subcontractor installs the hardware making sure that all doors that would permit the monitored individual to leave are wired into the

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configuration such that if the person leaves the residence while the system is “armed,” the alarm is triggered and a call generated to the council dispatch switchboard that then takes the actions designated in the client’s individualized care protocol, such as informing relatives, neighbors, and/or the local police. After several years of testing, the wandering alarm system has been integrated into the regular pallet of services funded by the local municipality (Kurlus, 2012).

Geolocation Tools Although not technically a wandering alarm per se, a growing number of relatively inexpensive mobile devices make use of geolocation, thereby making possible lowcost tools to help individuals who wander off and lose their way. Indeed most current generation smart phones include global positioning system (GPS) functionality and can tell both the user and the network the exact location of a device with a resolution measured in a few yards or meters. The last decade has seen dozens of dedicated products built to track individual persons, that is, person locators, as well as countless mapping and navigation applications. Some are designed and marketed to help persons prone to wander and get lost to find their way and to allow others to locate them in real time. For example, WATCHIE®, a mobile person locator consists of a wristwatch containing a dedicated cellular channel transponder with GPS capabilities that a monitored individual simply wears when out and about. It is programmed to continuously upload its location via a cellular phone channel to a personal identification number (PIN)-secured website, so that caregivers can locate the individual in real or near real time. Also, the system’s phone can send and receive standard calls, and speed-dial a help line that can assist in various ways, including providing live help finding one’s way home either by connecting with a special service operator or an informal caregiver. The above discussed Perth-Kinross Council is currently testing several such products for inclusion in their community-based telecare program and reports an enthusiastic response from users and their followers (Kurlus, 2012). Meanwhile, in the United States, perhaps a dozen companies offer similar cell phone–based services to seniors and their families such as Guardianangel (Guardian Angel Technologies, n.d.).

Fall Alarms The seriousness of falls for frail older persons is universally recognized as is the importance of a quick response for maximizing the likelihood of recovery for the individual. Hence the development and marketing of a variety of tools can detect falls and quickly alert appropriate responders. There are two basic approaches to fall detection, those using wearable devices and those using various kinds of sensors in the residential environment. Wearable devices are about the size of a small cell phone and are typically worn in a special holster above hip level. These devices contain instruments that sense the pattern of velocity changes consistent with a fall as well as to determine whether a person is lying in a prone position and not moving following this pattern. When this happens, it sends a wireless signal to a receiver that actuates an alarm. Commercially available versions typically integrate it with a PERS call button (Tunstall Group, Ltd., n.d.) and have been widely used throughout the United Kingdom in both individual and congregate residential settings.

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Several companies offer similar products for sale to individual users in North America, where use of this kind of tool is still relatively rare. In addition, product announcements suggest integration of fall detection functions into smart phones, such as the Android or iPhone, by means of downloading apps that use the internal positioning mechanism to determine whether a person may have fallen. If the phone detects a pattern of velocities indicative of a fall, an alert is generated, the phone then rings requesting an “I am okay” response from the user; if no such response is given, help is called. Several companies currently offer smart phone products that integrate the functionality described above with GPS location, adding an extra layer of dependability. For example, the LifeGuardian Senior combination GPS phone and fall detector records the location of the individual at the time a fall is detected and proceeds to detect whether he or she remains stationary or rises and moves around within the limits of standard GPS precision (LifeGuardian, n.d.). In contrast to GPS-based approaches, home-based systems combine motion, pressure, and vibration sensors to indicate whether, for example, a person has entered a bathroom and has remained there longer than normal. In our own research, we have seen one commercially available product, QuietCare® use this method to successfully detect falls in the bathroom and dispatch responders who provided quick and helpful intervention (Glascock & Kutzik, 2010). Because the literature on falls and injury indicates that a disproportionate number of falls resulting in death or serious injury occur in the bathroom, it may be useful to monitor the length of bathroom stay as a proxy for possible falls. One downside of this approach is that many of the alerts generated will be false alarms and should be interpreted as a possible rather than a definite fall (Kutzik, 2012). The big issue facing fall detection is dependability, i.e., does the system dependably indicate when a fall occurs. No fall-detection approach is 100% accurate. Therefore a critical consideration in the design and deployment of these tools is the management of error, both false negatives (when a fall occurs but is not detected) and false positives (when the system incorrectly reports a fall when in fact none has occurred). How dependable are fall detectors? This is impossible to know because current limited literature is based on the reliability and validity of these devices in the lab as opposed to real-world conditions. Although early studies have claimed reliability of both wearable and nonwearable devices under laboratory conditions (e.g., Degen, Jaeckel, Rufer, & Wyss, 2003; Sixsmith & Johnson, 2004), there appear to be no independent tests of commercial products in the field. Of particular concern are false negatives, particularly when the individual does not “flat out” fall down but rather swoons slowly, perhaps leans against the wall, and gently slides to a sitting and then a lying position. Such slow-motion falls, quite common in frail older adults, can be exceedingly difficult to detect.

Bed Alarms Out-of-bed alarms are rather simple devices typically consisting of weight/pressure sensitive pads that can detect a sudden decrease in the weight on the bed and/ or sudden increase in weight on the side of the bed that invariably occurs when a person gets out of the bed and steps on the pad. There are various configurations but all detect when a person gets out of bed. Used widely in hospital settings, such alarms are often built into the bed and are standard equipment on intensive care unit (ICU) beds. Used in skilled nursing facilities and memory units for patients at risk for falls, confusion, or wandering, these devices are almost always add-on

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accessories to standard beds. Beds can also be equipped with moisture and ammonia sensors embedded in pads to detect urination and sound an alarm and/or send a call. This can be quite useful providing quick staff response and reducing the need for frequent bed checks.

Nighttime Activity Alarms As noted above, persons suffering from cognitive disabilities often experience periods of hyperactive wakefulness at night. A combination of sleep-cycle disturbance and confusion can often lead to a recurrent pattern of waking and engaging in frenzied nondirected behavior. Historically, such behavior would be observed by night staff in open ward settings, but given the current shift toward providing more privacy and independence to cognitively impaired residents, this technology can be particularly useful. The device consists of an array of sensors to detect motion and analyze its pattern to determine whether the person is in a highly active state and, if so, quickly send this information to the staff for appropriate intervention. The commercial behavioral-monitoring product QuietCare® has been successfully used in memory unit settings in the United States, automatically messaging the nurse station and cell phones of line staff (Gage, 2012; Glascock & Kutzik, 2008). Additionally, a system that combines nighttime activity alerts along with alerts triggered by getting out of bed and/or urination in bed, is produced by Vigil Healthcare Solutions and deployed in dementia units both in North America and Australia. The Vigil system operates as a kind of automatically actuated nurse call system and allows care facilities to decrease night staff while increasing efficiency of response (Myers Research Institute, n.d.). By closely monitoring problematic nighttime behaviors of persons “at risk” for these behaviors, it allows the provider to simultaneously maximize both security and independence. Vigil also produces an electronic record of calls and responses, logging the interaction of staff and residents in real time.

RPM Systems RPM systems include various technological tools designed to monitor the changing status of individuals in behavioral, physiological, and/or environmental domains. The behavioral domain includes select routine activities, including getting out of bed, visiting the bathroom, meal preparation activity, and other routine activities. The physiological domain includes weight, blood pressure, blood glucose, and other vital signs. The environmental domain includes temperature extremes, smoke, carbon monoxide, and other hazards. RPM systems typically perform the following five functions: (a) collect data about a person’s status using an array of sensors, (b) analyze these data to assess whether the individual’s status is “normal” by comparing it with a predetermined baseline, (c) generate an alert if the status is abnormal, (d) send an alert to the appropriate persons via a communication channel, and (e) produce an electronic record and variety of reports of both the data received and the analysis of the individual’s status over time. RPM systems share many features and functions with the more sophisticated smart alarm and call systems discussed previously. However, although RPM systems can be set up to sound alarms or remote calls in real or near real time, their main function is to produce more detailed information about the changing condition of the care recipient useful for informing care delivery. Thus, in addition to issuing alert

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messages to formal and/or informal caregivers in the manner similar to a smart alarm, RPM is capable of producing periodic reports that track subtle changes over time, such as eating less or experiencing a slow but significant rise in blood sugar. Thus the main purpose of RPM tools is to provide a source for objectively derived continuous baseline information to supplement information obtained by other sources, such as direct observation and interaction, as well as through discussions among caregivers. Providers include BeClose, GrandCare, QuietCare, WellAWARE, and others (Boger & Mihailidas, 2011; Orlov, 2010, 2012).

Behavioral RPM Behavioral monitoring automatically gathers data about someone’s routine activities and translates them into information presented to caregivers in a way that helps them give better care. Data are collected by an array of sensors either worn by the individual or embedded in the environment, and typically include passive infrared “motion” detectors, RFID tags and transponders, vibration sensors, and/or video cameras configured to collect data indicative of specific activities. These data are then processed by software-based analytics to translate them into clear statements about what the monitored individuals are doing and not doing both within their residence and in public areas of a congregate facility. Are they sleeping through the night? Is there a change in bathroom usage? Are they socializing with others and participating in programmed activities or wandering aimlessly throughout the facility? Beginning in the late 1990s, a variety of behavioral activity monitoring systems have been tested in LTC settings tracking such activities as eating, sleeping, socializing with others, and bathroom use (Miskelly, 2001). The subject of much international research, cutting-edge developments in behavioral monitoring are confined to the laboratory and appear to be a long way off from becoming either practical or commercially available. However, by 2005, developers had created two types of practical behavioral-monitoring systems that are used in LTC settings (Kutzik, Glascock, Lundberg, & York, 2008). These are the person tracking-based system for use in residential facility and the rule-based system used in private homes or in the private living quarters of a residential facility. Both are discussed below.

Person Tracking Behavioral Monitoring An example of a location-tracking system is CARE, developed by Elite Care of Milwaukie, Oregon. Originally deployed in their Oatfield Estates facility, the core of this system uses hardware and software similar to asset management and process tracking systems used in industrial and shipping applications. All community members wear smart RFID tags—staff, residents, and visitors. The resident tags are additionally equipped with a personal call button that they can use to call staff from throughout the facility. Sensors embedded in walls and ceilings identify the inventory number of each personal ID tag and place its location on a map of the facility in real time. Thus, the location of every resident or staff person can be determined by knowing the position of every ID tag in the facility. It is also possible to infer a resident’s participation in programmed activities and socialization with other residents by examining the timing, duration, and sequence of the individual’s position relative to other residents and staff persons. For example, if time is spent in a common room between 11 a.m. and noon, it is highly likely that the resident participated in an exercise class. The CARE system automatically and continuously uploads these data to the system, which processes it in various ways for different users: personnel can both locate an individual in the facility and analyze his or her activity to better

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understand the individual’s cognitive and physical status. For example, finding that a resident has been repeatedly wandering from room to room without destination can be a flag that something is wrong with that person. In addition to the location-tracking function of the CARE system, other kinds of information are uploaded into the database for reporting and analysis. For ­example, residents’ weight and sleep patterns are monitored by weight-sensitive sensors placed under the legs of their beds. Changes in sleep behavior can be examined in connection with other changes. Additionally, whenever a resident uses the call button, this information is recorded along with which staff person responded, the time elapsed between the call and response, and the nature of the help requested. Finally, the system’s database is constantly updated with observations on the residents provided by the staff using wireless mobile devices as well as by the residents themselves using touch-screen terminals. The result is an ongoing record offering a rich picture of the daily experience of each facility resident. The system’s administrative portal provides a comprehensive record of the quality and quantity of resident–staff interactions. Because it is possible to view the identities of residents and staff and discern who is spending time with whom at what location, it is possible to generate a variety of staff–resident interaction reports. In addition, staff work task logs are automatically generated by the system in the form of an electronic time card allowing for validation of the staff’s own work logs. Thus the system provides management with an enhanced understanding of not only each resident’s status but also of the performance of staff, especially in relation to their interactions with each individual client. Finally, family members are provided with a PIN-secured website allowing access to select parts of their loved one’s records. For example, they can “see” what their loved one is doing in real time throughout the day and read short updates written by staff. The result is greater knowledge and peace of mind among family members.

Rule-Based Behavioral Monitoring Rule-based behavioral monitoring neither tracks a person’s position nor requires the person to wear an ID tag. Rather, it employs an array of strategically positioned motion sensors in the individual’s residence along with analytical software that uses “rules” to interpret the raw sensor data and convert them into information about selected activities such as getting out of bed, visiting the bathroom, and preparing and/or eating meals. In the past decade, perhaps a dozen behavioral-monitoring systems moved out of the lab into the real world as commercial products (Kutzik, 2012). Of these, QuietCare® is both the most widely deployed in LTC and the one with which we are most familiar since, as stated in the introduction, the first author coinvented the technology behind this product and was engaged in its development as well as research on its integration into care delivery models in the United States and Europe. Now owned by Care Innovations, an Intel-GE collaboration, it is currently marketed in North America to assisted living facilities and continuing care retirement community (CCRC) environments. QuietCare® is sold as a monthly subscription service similar to phone or cable services for price points similar to PERS products. A typical installation of QuietCare® uses five or six motion sensors placed throughout the residence in locations such as the bedroom, bathroom, above exit door(s), and inside and outside of the refrigerator. These motion detectors wirelessly transmit data to a base station that collects and periodically uploads the data to a webserver where they are translated into information about select activities of the monitored

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individual. Present-day information is automatically compared to previously collected activity data to determine whether there have been changes in the person’s activity level and patterns. A PIN-secured webpage provides caregivers access to an individual’s daily summary page and other reports. On the summary page, green, yellow, and red indicators, a variety of icons, and simple textual statements are used to summarize the activity information in an easily useable form. Green indicators are displayed when the data show no significant deviation in the frequency or timing of a given activity, yellow indicators are displayed when the frequency and/or timing of a given activity is greater or lesser than expected, and red status indicators are displayed when a higher threshold of deviation is recorded. Yellow and red indicators represent alerts and are sent to staff and designated family members via e-mails and text messages that direct the caregivers to take action and check the website for additional details. Caregivers can “drill down” for detailed information about the recent and past behavioral patterns of the individual as well as examine long-term trends, such as a decline in eating and meal preparation behaviors, which may be very important for adjusting the care plan of the individual to maximize effectiveness of the care delivered (Glascock & Kutzik, 2006). In residential facilities, QuietCare® provides staff with information about activities such as eating, sleeping, and bathroom usage, most of which occurs behind the closed doors of the individual’s living quarters and that would remain invisible but for this technology. At Lakewood Commons, an Ecumen-owned and operated assisted living residence in Maplewood Minnesota, the system has been used to uncover a range of problems with individual residents. These included sleep disturbance, “sun downer syndrome,” acute urinary tract infection, prostate problems, stomach flu, insufficient hydration, persons stuck in bed or chair due to acute onset of increased mobility problems, behavioral changes related to medication issues, social isolation, insufficient hydration, excessive heat or cold in the living quarters, and other measures. The supervisory staff concluded that each of these problems would have remained unknown for hours, days, or even weeks without the QuietCare® system (Kutzik et al., 2008). In addition, the behavioral-monitoring technology can collect information for staff supervisory purposes, ensuring that staff did in fact carry out bed checks and other actions they recorded in their job logs (Gage, 2012). In home care, QuietCare® has been tested in a wide variety of care delivery models, including visiting nurse, a naturally occurring retirement community, an intensive community care management for demented elders, and a rural regionwide home care provider and other settings. Collectively, these organizations serving different older adult and frail populations were able to integrate the information generated by the remote behavioral monitoring system into their care delivery practices. This resulted in greatly enhanced communication between caregivers and clients as well as increased work for the caregiver as he or she changed the care or service plans to reflect the information coming from this tool. The information provided by QuietCare® resulted in numerous, continuous adjustments to the flow of care to the client, insuring that appropriate care was delivered at an appropriate time with greater consistency and efficiency (Glascock, 2012; Kutzik, 2012). By providing continuous activity monitoring, care delivery organizations were able to provide enhanced care. The impact of this system on home-based client has been reported in detail elsewhere (see Willems et. al., 2011; Glascock & Kutzik, 2006); in brief, it has been used as both a passive emergency call system alerting caregivers to respond to urgent alerts (e.g., not getting out of bed, falling, wandering) and as a source of more detailed insight into the changing behavior of the clients with regard to acute episodes of illness or subtle decline in functional abilities over time.

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The kinds of problems uncovered by the system and addressed by home care delivery professionals routinely included the following: sleep disturbance, infection, confusional states, loss of consciousness, falls in bathroom and elsewhere, medication nonadherence, wandering, hyperactivity, changes in bathroom usage, as well as decrease in eating and meal preparation activity. Moreover, the system provided a means for validating the delivery of care by home health aides and other workers whose presence and actions were clearly reflected in the activity reports generated by QuietCare®. The system was most effectively used in conjunction with an ECR system that provided a detailed account of alerts generated by the system, responses of the caregivers to the alerts, as well as outcomes of these responses on the care of the client. Such an ECR, when used in connection with QuietCare®, helped organizations more fully use the extensive new information provided by the system.

Vital Sign Monitoring The automated monitoring of physiological status by collecting information on vital signs such as heart rhythm, blood pressure, oxygenation, glucose, and weight is a common feature of hospitals. These technological tools have, in recent years, moved out of the acute care settings and into the homes, often allowing distant clinicians to review medical data collected at home by a patient or caregiver. Providers of such monitoring systems include Bosch Health Buddy (healthbuddy.com), Philips ­TeleStation (Philips.com/healthcare), Honeywell HomMed (HomMed.com), LifeLink (lifelinkresponse.com.au), and Corventis NUVANT (corventis.com/us/ nuvant.asp), among others (Orlov, 2012). Perhaps the most widely adopted tool for vital sign monitoring is glucose testing. Technical advances in the past two decades have made it relatively easy to use glucose monitoring kits that are inexpensive and highly reliable. The same is true for blood pressure monitoring kits and home-based or portable systems for monitoring heart rhythm and/or the function of pacemakers and pulse oximeter kits. What had been only available in a clinical setting a generation ago is now commonplace in the home, reflecting both a growing ubiquity of these technical tools as well as a shift of chronic disease management into the home as well as the increased reliance on patients to manage their own care on a day-to-day basis. Cutting-edge technologies in vital sign monitoring, including wearable sensors, body networks, and “smart” fabrics provide a fascinating glimpse into the future. Capable of providing accurate real-time vital sign data, these tools were developed for military applications and are probably years away from commercial spinoffs. In any case, real-time vital sign monitoring is perhaps overkill for LTC applications because if a person requires real-time vital sign monitoring he or she probably belongs in an ICU, not at home or in a skilled nursing facility. Conversely, the management of such common chronic conditions as diabetes, congestive heart failure, and high blood pressure require monitoring that can be affordably and practically provided by a variety of currently available tools. We now turn to the three most common approaches: (a) the vital sign kiosk, (b) in-home console vital signs kit, and (c) individual device link for in-home use. A vital sign kiosk (e.g., the Viterion 500) is a touch-screen console installed in a public area of a senior center or residential facility. Individuals enter a booth to interact directly with the machine, with or without staff assistance. Once inside, the individual types in an identification after which the machine initiates a series of procedures constituting a “visit.” These procedures are specified by a health professional, which has set up the individual user’s “visit” based on specific health needs. The visit consists

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of a series of questions about symptoms followed by physiological measurements for such things as weight, blood pressure, and oxygenation. The user is led through the procedure by verbal and written prompts. When finished, the information collected is added to a web-based electronic record containing past kiosk visits and available for review by designated health professionals using a PIN-secured website. An all-in-one console such as the Viterion 100 and the Docobo doc@home combine many of the devices and functions of the kiosk into a small package for home use (Viterion, n.d.). About the size of a clock radio, the console is connected to a landline phone jack. When activated, it establishes a link with a remote service website and proceeds with a “visit” similar to the kiosk described above. The third type of vital sign remote-monitoring tool is what we term an individual device link. These are a series of products designed to link standard, off-the-shelf blood pressure cuffs, glucometers, weight scales, and other devices to a remote website for remote monitoring and reporting. An example is the Carematix, which allows the monitored individual to use his or her own devices. Ginderweis (2012) reports several advantages to this approach. For example, the user does not need to change behaviors to conform to a new way of doing things but rather can use his or her own, familiar devices. He or she can also continue to store them in their customary place (e.g., blood pressure cuff on the night stand, glucometer on the kitchen counter). Also, if a device needs replacement, a new one is inexpensively available from the local chain pharmacy instead of needing a proprietary one compatible with a console.

Environmental Extremes The third type of remote monitoring measures and tracks temperature, smoke, fire, and other problems in the residential environment. Although these systems do not monitor the individual in the same sense as the behavioral or physiological monitoring, the monitoring of temperature in particular has been used in direct conjunction with these other forms of monitoring to provide information requiring interventions from caregivers. Whereas the specific monitoring of temperature in the living quarters of the clients, for example, is not necessary in the residential facility, excessive heat and cold may be of life and death importance for persons living independently in private residences. Thus, tracking ambient temperature has been widely included in home-monitoring and smart alarm systems in the United Kingdom (Tunstall Group, Ltd., n.d.) as well as in the QuietCare® product described above. QuietCare® deployments in the United States, United Kingdom, and Netherlands have all made routine use of system-generated temperature alerts to initiate unscheduled visits to clients during heat waves to assure that the monitored individual opens windows, uses fans or air conditioners, and maintains proper fluid intake (Glascock & Kutzik, 2009). Although most of these interventions were for private residences, at least one residential assisted living facility discovered and reacted to several apartments that were excessively hot (Ecumen, 2005).

Rehabilitation Systems Rehabilitation includes various practices that engage older adults in activities that build and maintain physical, social, and psychological functions and capabilities. Recently, computer-based tools have been developed that assist in the provision

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of various kinds of rehabilitative therapy in LTC settings. These include various systems developed specifically for frail older adults as well as products developed for all age groups. An example of the latter are the Nintendo Wii–based games, such as golf or bowling, which have been shown to be quite popular as part of programmed group activities in assisted care settings (Burdick, 2012). These are active video games in the sense that they require the player to move his or her arms, legs, and/or shift his or her balance to operate the controller. Coupled with the balance board, they provide feedback and “coach” incremental improvement in function. In the past few years, Wii-based games have been used with considerable success in hospital rehabilitation settings, and there is a growing literature on the use of the balance board (such as that used in the game Wii-Fit) in balance improvement therapy. Researchers report that when these games are used in a residential setting as part of a programmed activity they not only provide the players with a combination of physical and cognitive exercise but also stimulate social interaction among those waiting to play and other spectators, which is very useful in and of itself (Blackburn et  al., 2006). These games are not suitable for older adults and often pose significant physical and cognitive challenges to the user. Efforts are underway to produce more senior friendly versions that will allow for slower reaction times of the users as well as easier-to-navigate control interfaces. An example of recently developed active video games for LTC is “Silverbalance,” which builds on features found in Wii-Fit that are tailored to frail and older adult players (Gerling, Schild, & Masuch, 2010). Cognitive decline, memory problems, and dementia have long been addressed by a variety of rehabilitation programs and strategies with varied success. Although there is no magic bullet to stop or reverse cognitive decline in older adults with dementia, it is generally agreed that keeping people actively engaged in stimulating cognitive tasks is essential to their functional health and quality of life (QOL). To this end, several software-based tools have been implemented in LTC settings that provide the user with cognitive training exercises to maximize cognitive functioning as well as provide repeated assessment of the individual’s functioning. One such product is the Dakim Brain Fitness system, which has made considerable inroads into the LTC market since it was spotlighted at the 2006 White House Conference on Aging. Consisting of a software package, it provides a series of progressively challenging exercises across multiple domains of cognitive functioning ranging from short-term memory to critical thinking. The software both continuously adjusts the difficulty level of the game to the performance of the player and creates a record of the individual’s performance over time and uses analytics to determine the best series of games and levels of difficulty each time the individual logs on based on his or her own history of play. Although the effectiveness of software-based cognitive rehabilitation systems is still not clearly sorted out in a largely anecdotal literature, preliminary results of this product appear quite promising in terms of significantly boosting short-term memory recall tasks in individuals who used the system regularly over a 6-month period (Miller et al., 2010). PositScience Corporation has claimed similar positive outcomes for mostly community-based and higher functioning users of their software products such as Brain Fitness®, InSight®, and DriveSharp®. They also list over 100 senior living and assisted living residences in the United States that are “certified” BrainFitness ­Communities, using and supporting PositSciences’ software. In mid-2012, PositScience began transitioning to an online monthly subscription service called BrainHQ, which adds the capacity of a “friends network” to provide online competition, support, and coaching.

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Teleconferencing Systems Two-way audio/video communication has come a long way since the prototype “picture phone” was revealed at the 1964 New York World’s Fair. It has in recent years become practical, cost-effective, and ubiquitous. Innovations in video capture and signal compression allow anyone with a laptop, tablet, or smartphone to videoconference over the web using a variety of free or paid services. Skype, the largest web provider of video telephony, reports daily traffic in excess of 40 million person-to-person users for their free service alone (Statistic Brain, 2012). Industry analysts studying trends in videoconferencing in medical and corporate settings note a convergence of four trends likely to cause significant growth of both intraand interorganizational teleconferencing: (a) increasing cost of transportation, especially air travel; (b) rapid decline in cost of teleconferencing hardware and infrastructure; (c) availability of reliable and cost-effective web-based hosting services; and (d) a shift in organizational culture from face-to-face to “virtual” work meetings. Interestingly, investment in “smart” meeting rooms equipped with teleconferencing technology at the time of this writing is stalling as businesses realize that emerging generations of smart phones and tablets provide the necessary functions for group teleconferencing making smart meeting rooms redundant and obsolete. Teleconferencing as a tool in LTC dates from the mid-1990s with the advent of various modes of “telemedicine” that allowed health professionals to conference with each other and with patients, especially the remote nurse visit. Within a decade, a variety of devices appeared that could provide two-way audio–video “nurse–patient visit” sessions in which both parties can hear and see each other and the nurse can interview, observe, and supervise the collection of vital signs such as blood pressure, pulse oxygenation, and weight using a special console installed in the patient’s home that transferred data through standard phone lines. Despite clear advantages to remote nurse visits, especially in rural areas, the hardware proved to be expensive, difficult for older adult patients to use, and plagued by poor video signal processing given the limited bandwidth of telephone lines. However, in recent years the widespread availability of web-based teleconferencing systems has resulted in simple-to-use cost-effective tools. For example, the screen-to-screen system used by the Proteion homecare service organization (discussed above), allows geographically dispersed older adult patients to call a nurse at any time of the day or night (see organizational case study of Proteion below). All the client must do is sit in front of his or her regular television set and push a button on the remote control and within a minute the client’s personal care nurse appears on screen. The television is fitted with a small cable-box-like device with a video camera and microphone so that it is capable of hosting a two-way videoconference without a special console. If the nurse wants vital sign information, she simply asks the patient to bring the blood pressure cuff or other device up close to the television and watches as the client takes and reports the pressure. The system, called “Care TV,” is manufactured by Mextel and uses a Skype-like technology easily integrated into standard home entertainment equipment and proves to be both practical and highly cost-effective given that the government insurance reimburses “virtual visits” at the same rate as face-to-face visits (Rietman, 2012). Another use for video teleconferencing in LTC is “televisitation” with friends and family. A roadblock to widespread adoption is the fact that relatively few impaired older adults have either computers, Internet access, or the skill sets necessary to easily call friends and relatives using Skype. As younger cohorts age, this will be less problematic. Although teleconferencing was reported to

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have been successfully used in congregate settings such as senior center computer labs, it is likely that an uptick in usage among the current cohort of older adults will require the use of simple videophones such as those outfitted for use with Skype. An interesting application of these technical tools is reflected in a pilot program underway at the time of this writing at Selfhelp Community Services, Inc. in New York City called “The Virtual Senior Center.” This program, using Microsoft software and computer hardware outfitted with standard accessibility enhancements (e.g., large print/high contrast display, touch screen interface), allows homebound persons to remotely participate in a wide variety of group activities, including field trips to museums and concerts (Kaplan & Asen, 2012). Building on practices developed for virtual classrooms and mobile video-telephone technologies, the Virtual Senior Center is a replicable program model that opens a door to a wide variety of educational and socialization experiences for homebound older adults. All that is needed at the participant’s end is to be able to control a web-enabled computer or tablet and access the necessary hardware, software, and Internet connection service (see organizational case study of Selfhelp below).

Social Networking Systems LTC businesses, professionals, and caregivers are increasingly moving toward using general purpose social networking (Facebook, Twitter, LinkedIn, etc.) to develop an online presence, seek and provide information and support, and so forth. Although these venues can be an effective means of providing one’s services, of dialoguing with other providers, and “getting a pulse” on what’s new in LTC technologies or care models, the professional, provider, and caregiver must use caution in becoming overly dependent on these systems. Even LinkedIn, which is presumably more focused on jobs, business, and industry, has its shortcomings. “Buyer beware” may be an apropos caution here, because many who post messages or manage groups have a product to sell, a bone to pick, a personal bias, and so forth. In short, these avenues can augment, but do not sufficiently replace information obtained in peerreviewed journals and at professional conferences, where checks and balances, including the scholarly review process and required conflict-of-interest disclosures are required. That being said, there are numerous potentially informative groups on LTC and technology and aging on LinkedIn, for example (e.g., ElderCare Professionals, Assisted Living Professionals, Gerontechnology, GSA-TAG, Informatics for Consumer Health, ChangingAging, etc.). In addition to the general purpose social media sites discussed above, there is an emerging array of sites designed specifically to directly assist caregivers through the provision of emotional support, useful information, and caregiving assistance. Some, such as www.CaringBridge.org, appear to be designed specifically for those suffering from acute health crises (e.g., cancer care); others such as PatientsLikeMe .com and DiabetesMine.com provide support for chronic disease self-management; still others like LotsaHelpingHands.org and TakeThemAMeal.org offer support services for caregivers and older and disabled adults in need of coordinated assistance from friends, families, and neighbors. Especially, those providers involved in the community-based, aging-in-place sector, such as geriatric care managers, should become familiar with these systems and consider using them when they appear to be efficient and effective. Sites such as WebMD, MayoClinic, and NIHSeniorHealth. gov can be recommended to clients and family caregivers for up-to-date information on various conditions, chronic disease self-management, and so forth.

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Electronic Health Records Systems Often touted as a magic bullet cost-saving and quality-control fix, electronic health records systems (EHRs) have become a mainstay of clinical practice in the United States and elsewhere, especially when high-level government policies have created “top-down” pressures to force adoption, along with significant funding. The state of the art of these computer-based tools reflects fast growth, cost-effective, and ubiquitous data processing technologies common to many business data base applications. After nearly two decades of percolation into the LTC industry, EHRs are widely adopted in those sectors in which billing and reimbursement require the storage and exchange of information in electronic form, that is, skilled nursing and behavioral health services. For this reason, EHRs are most frequently implemented in skilled nursing facilities and visiting nurse organizations. EHRs are a type of ECR that focuses exclusively on information relating to clinical or medical care, typically types of care procedures that are reimbursable by some form of medical insurance; whereas ECR system includes not only medically reimbursable care but also the gamut of supportive, nonmedical, social, or “ancillary” care services provided by LTC organizations. The core of these software-based ECR systems is an “archetype” of databases linking together information about individual client characteristics, treatment or service plan, and concerns about the changing condition of the individual, ­patient, or client. In practice, these are typically integrated systems ­tying together a series of “modules” for patient care, billing, staff supervision, and ­administrative decision support. Each module is typically comprised of separate applications assembled into a “suite” providing multiple functions and interfaces. For example, a patient care module would include a suite comprised of a scheduler, a client demographic and health history form, a historical log of each care or service delivered, as well as a care plan with specified goals tailored to the individual’s immediate needs. Typical of the state of the art of such systems is that they bring several module elements together in a “dashboard” displaying records from the various modules in a single screen setting. Also typical is the migration of the data and analytics from networked computers physically located within the facility to web-based applications where the data are transferred, stored, and analyzed on an Internet server. This latter development provides more cost-effective and “thinner” infrastructure investment—all that is needed are web-enabled computers. Security, Health Insurance Portability and AccountabilityAct (HIPAA) compliance, and encryption issues are increasingly handled by the electronic record providers, whose present business is becoming more like that of service providers and less like that of “systems integrators” and software resellers. Different versions of EHR systems are employed in different care delivery models. Skilled nursing facilities appear to be generally served by systems developed for hospital use but modified for subacute settings. Generally, these use a real-time checklist approach to logging care actions required by a care plan, something formerly done by pencil and paper. In the early 2000s, several products appeared that used touch-screen data entry pads placed in the room of the client that the staff could use to log information about the client’s status and care actions. By 2010, the shift toward smart pads clearly set the trend toward mobile devices carried by the personnel being used for entering electronic record data. Several companies offer tablet-based point-of-care data capture when the caregiver is face to face with the client. Current state of the art includes systems that digitalize custom forms and allow tablets to accept handwritten text such as those produced by Mi-Co for both residential and

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home-care delivered skilled nursing services. Using this approach, any paper form used in the workflow can be made into a template for electronic data entry, thereby reducing disruption of the conversion from paper to electronic records. A variety of vendors offer off-the-shelf suites of modules for residential facilities that provide “soup to nuts” packages tying together intake, census, service planning, clinical, billing, collection, electronic remittance, with a “physician’s portal” for access to a comprehensive medical record. Typical of these is the LTC package produced by CareVoyant, which includes various administrative features that provide various trends and charts that allow managers to examine workflow and costs in detail. As is typical, this company also offers a different version for visiting nurse and home care that emphasizes scheduling, functional need assessment (OASIS), the use of networked tablets for data entry, as well as the ability to integrate data from remote vital sign monitoring devices such as blood pressure cuffs. The decision can be complex as to which suite of services and which provider to choose. At the time of this writing, the LeadingAge Center for Aging Services Technology (CAST) has launched new EHR selection tools designed to assist in this process for the LTC sector.

ECR Systems As indicated in the preceding discussion, nonmedical ECRs are not yet widely adopted. However, research demonstrates that they may prove particularly useful in that they bring together information from different caregivers and even different organizations in a single dynamic record that allows for the creation of a continually updated, historical picture of each individual client’s shifting needs, changing caregiver concerns, as well as a log of both scheduled and delivered care actions. For example, in the Limburg region of the Netherlands, an ECR system developed by the lead author is used as part of a replicable program model in which both medical and nonmedical in-home care is delivered by teams of nurses and home health workers (see case study of Proteion below). Three different types of technological tools are integrated into this care delivery practice: remote behavioral monitoring (QuietCare), teleconferencing nurse visits (CareTV), and emergency response call technologies. The ECR, called the home care information system (HCIS), serves as an informatics backbone for the care teams, tying together alerts from the monitoring systems, information from meetings with care professionals, clients, and families. Operating on smartphones and using a PIN-secured website, it supports a variety of textual and graphic functions as well as a blog-like narrative tracking the wellness status and needs of each client over time. In addition, it has several decision support analytics capable of flagging potential problems as they emerge (Glascock & Kutzik, 2009). This “pay attention to” function of the HCIS appears to be most useful as a way of sharing information among team members about potential problems before they become crises. Given the rural, geographically dispersed population of clients requiring nurses to drive long distances to visit, the ability to share continuously updated ECR among a network of care workers affords both improved efficiencies and quality control. Interesting as well is that the HCIS system automatically captures alerts generated by the QuietCare® system as well as the actions taken by the various responders reacting to this information and thereby provides a means to track and analyze the impact of remote behavioral person monitoring on care delivered.

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THREE ORGANIZATIONAL CASE STUDIES In this section, we briefly present more detail about three of the care provision organizations discussed above to provide a more concrete picture of how the technologies were integrated into their care delivery. The three organizations discussed are KeystoneCare, of Wyncote, Pennsylvania; Selfhelp Community Services, Inc. of New York, New York; and Proteion, Limburg Region, Netherlands.

KeystoneCare, Wyncote, PA KeystoneCare’s mission is to serve those most in need and disenfranchised from the health care system. Providing a mix of visiting nurse-based services, their core client base is the inner-city poor with multiple comorbidities, many with behavioral problems and substance abuse histories. Targeting their most at-risk clients, new technological tools were integrated into care delivery to achieve what CEO Gail Inderwies terms a “continuity of connection” between the individual client and his or her nurse between visits. Using a combination of behavioral monitoring (QuietCare), vital signs monitoring (Carematix), and monitored medication dispensing (e-Pill’s MD2), nurses receive a continual 24/7 flow of information about each client’s health behaviors, medication adherence, and physiological status. This information greatly enhances nurse–client communication and interactions with the client during calls or visits, leading to better outcomes. For example, if a client is lethargic and not taking the medicine, the nurse case manager can immediately address this issue through phone calls or visits, thereby reducing ER use and unscheduled hospitalizations (Inderwies, 2012). The example of Client A below illustrates the effects of the continuity of connection afforded by these technological tools. Client A, a 63-year-old African American female was struggling to control her diabetes, chronic obstructive pulmonary disease (COPD), heart failure, multiple strokes, and asthma; she had experienced 15 unscheduled hospital visits in the previous year. After being trained to use e-Pill MD2 and Carematix vital signs, she was successfully tracking her blood pressure, weight, and glucose within weeks and the clinical staff monitored her progress on the web, enabling them to provide feedback, coaching, and support to the client. Within weeks the client became compliant with her medication therapy and significantly improved her health behaviors and disease condition. Moreover, the nurse–client relationship shifted from poor communication and suspicion to mutual respect and trust. Three years later client A has not had a single unscheduled hospital admission (Inderwies, 2012).

Selfhelp Community Services, Inc., New York, NY Selfhelp Community Services, Inc., serves nearly 20,000 older adults and chronically ill clients in their homes and at over 20 program sites. Active in CAST (Center for Aging Services Technologies), Selfhelp is a nationally renowned flagship for testing leading-edge technologies and integrating them into service delivery. Since 2005, five different tools have been integrated into technologically enhanced care delivery models. These are (a) Behavioral RPM (QuietCare), (b) Home-based Remote Vital Signs RPM (Jewish HomeLife package), (c) Congregate Vital Signs RPM (Viterion),

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(d) Memory-Cognitive Rehabilitation (Dakim Brain Fitness) and (e) Teleconferencing (Microsoft Virtual Senior Center). Behavioral RPM was useful in helping to anticipate changes in client health and needs by identifying changes in behavior before these result in a crisis. The interventions taken in response to information generated by the QuietCare® has resulted in improved care for clients and greater peace of mind for both family members and caregivers. Vital Signs RPM is used in a program designed to improve disease management among high-risk patients. Patients are trained to take their disease-focused biometric measurements, which were automatically posted to a PIN-secured website. When a patient’s readings fall outside desirable parameters, the nurse calls the patient to check in and address the abnormal reading. The Congregate Vital Signs RPM program replicates elements of a model successfully developed by Jewish Home Lifecare in the New York metropolitan area and places a telehealth “kiosk” in the public area of senior residences. Seniors are trained to use the kiosk to track their vital signs three times a week, a process that enhances health literacy among the senior users and triggers follow-ups with nurses and social workers for individuals whose readings are problematic. The Memory and Cognitive Rehabilitation program uses Dakim’s Brain Fitness System. Currently deployed in five senior centers and residential buildings, it has been found to be popular, easy to use, and requires minimal staff support. Finally, the teleconferencing tool operates on any web-enabled computer as the platform for the Virtual Senior Center Program (VSP). A beginning was made in 2010 by providing six homebound seniors (aged 67–103) with computers and web access to enable them to “tele-attend” activities and classes conducted at Selfhelp’s main senior center. They would also be able to use their in-home setup to access the Internet, Skype, and make use of e-mail. The VSP uses a special touch-screen system that simplifies connecting with loved ones, family, classes, and entertainment. Assistive technology provides large pictures and text as well as augmented audio and a large keyboard with the letters arranged in ABC sequence for those who choose the option. The testimonial of one of the participants speaks volumes. Milton, aged 87, explains, “I was almost down for the count. I sat in my apartment with absolutely nothing to do . . . just waiting for the end.” But because of the VSP, “my life is worth living again. I am a new person. I never thought I would have a second chance . . . but this virtual senior center has given me new energy, a reason for waking up each morning” (Kaplan & Asen, 2012, p. 77).

Proteion, Limburg Region, Netherlands Proteion Thuiszorg (Proteion Homecare) based in Limburg Region in the southern part of the Netherlands, provides social care and medical support in the homes of 8,000 clients while operating several residential facilities along the continuum of care. In the forefront of creative use of technological tools to enhance their service delivery model, they have integrated four different technologies into their care delivery model: (a) a social alarm call system, (b) “screen-to-screen” teleconferencing, (c) behavioral remote person monitoring (GE-QuietCare), and an ECR (HCIS). The social alarm system uses hardware from the British manufacturer Tunstall to call the regional ambulance and emergency dispatch service using a typical social alarm model: the client pushes a button and talks to the dispatcher. Over 1,200 of our clients are enrolled in the social alarm program. The teleconferencing

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or “screen-to-screen” program uses the Care TV system (Mextal Inc.). Using the ­client’s own TV set plus a special cable box, the system allows workers to speak directly with their clients in real time and to deliver care without having to travel, often great distances, to the client’s home. At the time of this writing, there were over 220 clients with the screen-to-screen installations and significant short- and longterm growth is anticipated. Since Proteion is reimbursed by the government and from insurance companies for the screen-to-screen care delivery at the same rate as if the care worker actually visited the client, this technological tool has proved itself not only cost-efficient but profitable. For Behavioral RPM, Proteion uses the QuietCare® behavioral system with currently over 240 clients as part of four provider regional demonstrations supported by government funding and the Algemene Wet Bijzondere Ziektekosten (AWBZ), a national insurance fund for LTC. If successful, the objective then would be to roll out QuietCare® to a much larger number of clients and structure a reimbursement model that would be similar to the one that is currently in place for the screen-to-screen technology. Presently, there is no cost to the client for QuietCare®, but in the future there will, in all likelihood, be a sliding scale charge based on ability of the client to pay. As part of the QuietCare® program described above, a special form of mobile ECR system has been integrated into the practice of the care workers. This is the HCIS and tracks each and every alert produced by the QuietCare® system and links it to a record of actions taken in response to these alerts by the central emergency dispatcher as well as the individual care workers for the participating organizations. Operating on smart phones and tablets, it allows mobile point-of-care capture of information relating to the health status and social needs of each client as well as a means for documenting and sharing a wealth of information among care members. The electronic record produced is valuable for both care workers as well as researchers assessing the effectiveness of the remote monitoring technology and the care delivery practice that it supports (Rietman, 2012).

DISCUSSION Having presented a survey of the seven main types of technological tools used in LTC settings across the continuum of care and providing some examples, we now turn to a short discussion of five important issues for LTC administrators and planners to contemplate when integrating a new technological tool into their care practice.

CONSIDERATION 1: RETURN ON INVESTMENT The concept of return on investment (ROI) is widely used in business to refer to narrow economic returns in the form of profit. However, investment in a technological tool implies an expected payoff in both monetary and nonmonetary values. LTC planners and administrators should tightly focus on precisely what they hope to get from investment in implementing a technological tool. Part of the bottom line is economic: all care providers must take in money to stay in business, whether or not they are not-for-profit or for-profit entities. But there must also be a clearly expected payoff in terms of improvement of the quality and/or quantity of service delivered as well as carefully managed expectations as to when these returns on investment will be forthcoming. Our experience and those of other researchers has repeatedly

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shown that a variety of “labor saving” tools actually resulted in increased costs, especially in the short run, as organizations struggled to get the implementation right. For some organizations, cost savings and upselling of additional services are very important, whereas for others the flash and panache of working with leadingedge technologies is most valued. What is essential is that everyone involved in the process of studying what technological tools to implement should work to attain collective clarity on what precisely they and their organization expect in outcomes and impact. The W. K. Kellogg Foundation Logic Model Development Guide (2004) provides one effective means of planning, gaining consensus on priorities, and measuring and demonstrating outcomes. The Center for Technology and Aging (www. techandaging.org) recently unveiled an ROI tool designed to assist with the accurate calculation of ROI (CTA, n.d.). Laurie Orlov (2012, p. 7) provides an instructive discussion on calibrated care (“determining and delivering the right level of care at the right time and in the right place”) and how a variety of technological tools can be prudently used. The article also documents several situations wherein technology has led to improved care, elevated customer satisfaction, and lower costs (i.e., studies at the Veterans Administration, through Kaiser-Permanente, and others).

CONSIDERATION 2: DISRUPTIVENESS The fact is that installation is not the same thing as implementation. A technological tool may be easily installed but very difficult to integrate effectively into the “business rules” of an organization. In this connection, it is often stated that certain technologies are “transformative,” that is, transforming the way people do their jobs. But the reality is that some technologies are not merely transforming but also disruptive. This is to say that the introduction of new technological tools may prevent employees from doing their job the old way, according to long-standing practices, thereby requiring them to adopt new ways of doing the job. For instance, behavioral RPM is relatively simple to install and to get up and running; however, the information provided by the system often proved challenging for organizations to integrate into their care practice in ways that required significant changes in how they deliver care. For example, the behavioral RPM system would generate alerts about problems with clients 24/7 even though the care provision organization may normally operate a 9 a.m. to 5 p.m. Monday through Friday schedule. How does the organization respond to this kind of information, which they never had before? Should overnight and weekend alerts be addressed before the next business day? If so, how and by whom? Should arrangements be made with a third party to respond immediately? This example highlights the need to adjust their care delivery protocols (i.e., business rules) to effectively integrate this new technological tool into normal care delivery. Certainly, not all technical tools are equally disruptive: new call systems and facility-based wander alarms are generally simpler to accommodate into existing business rules but even these are not simply “plug and play.”

CONSIDERATION 3: WHO PAYS? How a given technological tool is paid for is literally the bottom-line question for the planning process. Unless the organization is interested primarily in the publicity

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spotlight of hosting a test for new technological tools for a limited time, the issues connected with developing and maintaining a sustainable funding stream should be a clear and constant focus of the implementation planning process. The past 15 years of cutting-edge technologies developed for LTC applications have resulted in far more short-lived demonstrations than permanent programs. Too often, shortterm funding runs out and the program is terminated. Unless mechanisms for ongoing funding can be implemented, as in the case of the Dutch screen-to-screen program discussed above in which remote nurse televisits are reimbursed at a realistic rate by insurance, the long-term viability of even the best program using new technological tools is often doomed. Therefore, it is critical to figure out the financial model to support the program right from the beginning rather than hope that somehow this will be figured out in the future.

CONSIDERATION 4: SHOPPING AROUND Sometimes, shopping for technological tools is easy because call systems, smart door alarms, some forms of electronic records, and the like are widely deployed in the industry and it is easy to find reputable vendors. However, when it comes to newer types of technology where past experience is less of a guide, it becomes difficult to even know what is out there, much less which product and which vendor has a good reputation and track record. Here it is useful to turn to web-based resources that serve as clearinghouses, highlighting which technological tools are commercially available and which are promising but still undergoing “beta” tests. More important, these sites often list which LTC service organizations are using which technologies and provide contact information for the person in charge. In North America, such a site is the CAST Clearinghouse (CAST Clearinghouse Website, n.d.), whereas in the Netherlands the Vilans website serves the same function (Vilans, n.d.). Both offer a reliable source of information and contacts for LTC planners and administrators to connect with the latest technological tools and to find out about the experiences other agencies had with them.

CONSIDERATION 5: CHAMPIONS In virtually all of the sites with which we are familiar, where technological tools were integrated into the care practices and business plans of the organization, the successful implementation was a result of champions continuously pressing for the adoption of the tool by the organization. Typically, these champions were not merely the members of a standing committee associated with the information technology (IT) department, but groups combining permanent and ad hoc members that drew from different constituencies within the organization. Ideally this means drawing from the board, upper and middle management, as well as line staff who work directly with clients (Kaplan & Asen, 2012). Keeping in mind that organizational change in culture and especially work rules may be the lynchpin to a successful implantation, champions representing as many stakeholders as possible may be essential in gaining widespread support for adoption. One does not have to be a Machiavellian to understand that in matters of organizational change everything is ultimately both political and personal.

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SUMMARY In conclusion, we frame these five considerations by repeating our premise, stated in our introduction: technologies are not merely gadgets and gizmos but tools used in the practice of delivering care and/or managing a care provision organization. Hence it is not the device or system “in and of itself” that is important, but rather the service delivery models into which they are integrated. No matter what investigatory and decision processes are used when acquiring and implementing new technological tools, it is imperative to understand that devices and systems are tools to be used by people carrying out the business of providing care to older adults and frail persons. There is not now, nor is there likely ever to be “robocare,” but only people caring for people, assisted by technology. No matter how “high tech” the toolbox for LTC providers may become in the future, it will always remain at its core “high touch” care. This means above all that administrators and planners must realize that adoption requires integrating the tool into a care provision practice by reshaping how care is provided and, in certain cases, how it is paid for.

REFERENCES Blackburn S., Brownsell S.& Hawley M. (2006). Assistive technology for independence (AT4I). Final Report of the Assistive Technology for Independence Study, Barnsley Hospital NHS Foundation Trust (BH). Obtained by email from Simon Brownsell [email protected]. Boger, J., & Mihailidis, A. (2011). The future of intelligent assistive technologies for cognition: Devices under development to support independent living and aging with choice. NeuroRehabilitation, 28, 271–280. doi:10.3233/NRE20110655 Burdick, D. C. (2012). Gerotechnology. In V. S. Ramachandran (Ed.), Encyclopedia of human behavior (2nd ed., pp. 228–237). London, UK: Elsevier. Burdick, D. C., & Kwon, S. (Eds.). (2005). Gerotechnology: Research and practice in technology and aging. New York, NY: Springer Publishing Company. CAST Clearinghouse Website. (n.d.). Retrieved from http://www.leadingage.org/CAST. aspx Center for Technology and Aging. (n.d.). Determining the ROI from remote patient monitoring: A primer. Retrieved from http://www.techandaging.org/ROI_Brief.pdf Degen, T., Jaeckel, H., Rufer, M., & Wyss, S. (2003). SPEEDY: A fall detector in a wrist watch. Proceedings of the seventh IEEE international symposium on wearable computers (ISWC’03; pp. 184–187). Ecumen. (n.d.) Pilot project progress report with preliminary results obtained by email from Alison Gage in personal correspondence. Elite Care. (n.d.). Information on elite care installation at Oatfield estates. Retrieved from http:// www.elitecare.com/about/the_care_system_overview Frost & Sullivan Research Service. (2011, May 18). North American personal emergency response systems market report summary. Retrieved from http://www.frost.com/prod/servlet/ report-brochure.pag?id=N89F-01–00-00–00#report-overview Furphy, K., Lindstrom-Hazel, D., & Burdick, D. C. (2014). Assistive technology and older adults. In K. F. Barney & M. A. Perkinson (Eds.). Occupational therapy with aging adults: Enhancing quality of life through collaborative practice. London, UK: Elsevier. Gage, A. (2012). Personal need to business opportunity: The pitfalls of being first to market. In A. P. Glascock & D. M. Kutzik (Eds.), Lessons for the success of telehomecare (Vol 30, Assistive Technology Research Series, pp. 99–108). Amsterdam, Netherlands: IOS Press. Gerling, K. M., Schild, J., & Masuch, M. (2010). Exergame design for elderly users: The case study of SilverBalance. Proceedings from ACE '10, the 7th International Conference on Advances in Computer Entertainment Technology, Taipei, Taiwan. doi:10.1145/1971630.1971650

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Glascock, A. P. (2012). Moving beyond the technology: The dispatcher, responders and informatics. In A. P. Glascock & D. M. Kutzik (Eds.), Essential lessons for the success of telehomecare—Why it’s not plug and play (Vol 30, Assistive Technology Research Series, pp. 45-62). Amsterdam, the Netherlands: IOS Press. doi:10.3233/978–1-60750–994-3–45 Glascock, A., & Kutzik, D. (2006). The impact of behavioral monitoring technology on the provision of health care in the home [Special Issue: Pervasive health management: New challenges for health informatics]. Journal of Universal Computer Sciences, 12(1), 59–80. Glascock, A. P. & Kutzik, D. (2009) From the home to a BlackBerry: Informatics-based telehomecare. In Mikulecky et al. (Eds.), Proceedings of the Ambient Intelligence Forum (pp. 112– 120). Amsterdam, The Netherlands: IOS Press. Guardian Angels Technology. (n.d.). Retrieved from www.guardianangelselectronics.com Hughes, J. C., & Louw, S. J. (2002). Electronic tagging of people with dementia who wander. British Medical Journal, 325, 847–848. Inderwies, G. (2012). Implementing telehomecare at a diversified home health provider: The experience of KeystoneCare. In A. P. Glascock & D. M. Kutzik (Eds.), Essential lessons for the success of telehomecare—Why it’s not plug and play (Vol 30, Assistive Technology Research Series, pp. 81–90). Amsterdam, the Netherlands: IOS Press. Kaplan, S., & Asen, L. (2012). Seniors go high tech to age independently at home: Self-help community services embraces its role as innovator. In A. P. Glascock & D. M. Kutzik (Eds.), Essential lessons for the success of telehomecare—Why it’s not plug and play (Vol 30, Assistive Technology Research Series, pp. 63–80). Amsterdam, the Netherlands: IOS Press. Kurlus, F. (2012). Developing and implementing telecare enhanced services in Scotland. In A. P. Glascock & D. M. Kutzik (Eds.), Essential lessons for the success of telehomecare—Why it’s not plug and play (Vol 30, Assistive Technology Research Series, pp. 187–194). Amsterdam, the Netherlands: IOS Press. Kutzik, D. M. (2012). The business of telehomecare: Sensors, servers and protocols in Zones 1 and 2. In A. P. Glascock & D. M. Kutzik (Eds.), Essential lessons for the success of telehomecare—Why it’s not plug and play (Vol 30, Assistive Technology Research Series, pp. 25–44). Amsterdam, the Netherlands: IOS Press. Kutzik, D., Glascock, A. P., Lundberg, L., & York, J. (2008). The role of technology in the provision of care in assisted living facilities. In M. Golant & J. Hyde (Eds.), A future vision of the assisted living facility option: Accommodating tomorrow’s frail older Americans (pp. 223–248). Baltimore, MD: John Hopkins University Press. Lifeguardian. (n.d.). Retrieved from http://lifeguardianmedicalalarms.com Miller, E. A. (2007). Solving the disjuncture between research and practice: Telehealth trends in the 21st century Health Policy, 82, 133–141. DOI: 10.1016/j.healthpol.2006.09.011 Miskelly, F. G. (2001). Assistive technology in elderly care. Age and Ageing, 30(4), 55–458. Myers Research Institute. (n.d.). Executive summary. Menorah Park Center for Senior Living. Retrieved from www.vigil.com/products/case-studies/myers-research-executivesummary.pdf O’Neill, D. J. (2003). Tagging should be reserved for babies, convicted criminals and animals. British Medical Journal, 326, 281. Retrieved from www.bjm.com Orlov, L. M. (2010). Health-based technology in the home: Why it matters, why now. Journal of Geriatric Care Management, 20, 4–8. Orlov, L. M. (2012, Aug). Calibrated care is closer to home: 2012 aging and health technology. Aging in Place Technology Watch. Retrieved from www.aginginplacetech.com Rietman, J. (2012). The use of telecare in the Netherlands: Three care delivery models. In A. P. Glascock & D. M. Kutzik (Eds.), Essential lessons for the success of telehomecare—Why it’s not plug and play (Vol 30, Assistive Technology Research Series, pp. 179-186). Amsterdam, the Netherlands: IOS Press. Roush, R. E., & Teasdale, T. A. (1996). Persons found helpless in their homes. New England Journal of Medicine, 335(21), 1612–1613. SecureCare®. (n.d.). Retrieved from http://www.securecaretechnologies.com.au/ Sixsmith, A., & Johnson, N. (2004). A smart sensor to detect falls of the elderly. IEEE Pervasive Computing, 3, 42–47. Stanley-Blick. (n.d.). WanderGuard product information. Retrieved from www.blickcommunications .com

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Statistic Brain. (2012). Skype statistics. Retrieved from http://www.statisticbrain.com/ skypestatistics/ Tunstall Group, Ltd. (n.d.). Retrieved from www.tunstall.co.uk Vilans. (n.d.), Databank Zorg op afstand, Vilans, Utrecht, 2011. Retrieved July 15 2011 from http://zorgopafstand.vilans.nl/ [in Dutch]. Viterion. (n.d.). The 500 Life center Telehealth Kiosk description. Retrieved from www.viterion .com W. K. Kellogg Foundation. (2004). Logic model development guide. Retrieved from www.wkkf.org

Willems, C., Spreeuwenberg, M., van der Heide, L., Glascock, A. P., Kutzik, D., de Witte, L., & Rietman, J. (2011). Activity monitoring to support independent living in Dutch homecare support. In G.J. Gelderblom et al. (Eds.), Everyday Technology for Independence and Care (pp. 145-151). Amsterdam, The Netherlands: IOS Press.

17

CARE TRANSITIONS Nancy Dudley Edwin P. Cabigao

LEARNING OBJECTIVES On the completion of Chapter 17, the reader will be able to quality of care and financial issues associated with poor care •  Describe  transitions •  Comprehend the American Geriatrics Society recommendation to

improve transitional care •  Discuss common conditions linked with potentially avoidable hospitaliza-

tion of older adults •  Describe the three conditions identified as having quality gaps in caring

•  •  •  •  •  •  •  • 

for older adults when transitioning in both directions between nursing facilities and the ED Understand the relationship between delirium and dementia and the importance of early screening in health care settings and during care transitions Describe key components of safe, effective, and efficient care transitions Discuss conflicts related to emotional reality of moving an older adult from a familiar environment to any long-term care (LTC) setting Describe the economic, health, demographic, and social support factors that determine the need for care transitions and adjustments Define and describe relocation stress syndrome (RSS) or transfer trauma and its effects Discuss the role of an effective interprofessional team and involvement of client/resident, family, and responsible party Discuss structured interventions to ease the transition process along with the pitfalls and roadblocks that threaten smooth transitions Describe strategies to identify and minimize the risks associated with older adult relocation; address problems from a clinical standpoint; create interventions and care plans that facilitate positive outcomes; and increase staff awareness, sensitivity, tolerance, and creativity on the topic of care transitions

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Continuous coordinated quality care across settings is essential to promote healthy aging for older adults living longer with serious and complex chronic conditions. Safe, effective, and efficient care transitions, whether across care settings or within an existing setting, promote health status and quality of life (QOL). This chapter begins with an overview of issues associated with poor care transitions and recommendations for improvement. A case study highlights challenges in the delivery of LTC and how to provide quality care during care transitions. Development of an accurate needs assessment, creation of an interprofessional transitional team, and implementation of a comprehensive transition plan are all critically important to ensure a smooth transition in any setting.

TRANSITIONS FROM LTC TO HOSPITALS Older adults living longer with multiple chronic conditions require complex care management. Transitions from LTC settings for hospitalization are common with acute exacerbations of chronic disease. Poor care transitions, from one health care setting to another, are associated with high hospital readmission rates and preventable adverse events. Nearly one in five Medicare beneficiaries discharged from the hospital was readmitted within 30 days—about 2.6 million older adults costing over $26 billion/year (U.S. Department Health and Human Services [HHS], 2011). Fragmentation of health care services, inadequate communication, coordination between providers from hospital to community settings, and medication errors are a result of poor care transitions. Risk factors that increase hospital readmissions from LTC include early discharge due to fiscal constraints to decrease hospital length of stay and LTC reimbursement for short-stay admissions, lack of health care provider continuity, communication, cultural competence, and medication errors (Oakes et  al., 2011). Older adults subjected to recurring illness are more likely to receive safe, efficient quality care through improved coordination and continuity in the delivery of care (Arbaje, Boonyasai, & Dilworth-Anderson, 2011). Innovation in transitional care to improve quality care is a national priority. Section 3026 of the Affordable Care Act—The Community-Based Care Transitions Program mission is to reduce hospital readmissions, test funding streams for care transition services, maintain or improve care, and document measurable savings to Medicare (Centers for Medicare & Medicaid Services, 2011).

Recommendation to Improve Transitional Care The American Geriatrics Society recommendations to improve transitional care include (a) transitioning to the next setting—prepare patients and caregivers by actively involving them in decisions related to planning and receiving care in the next setting; (b) good bidirectional communication between the sending and receiving health care providers; (c) policies promoting high-quality transitional care with performance indicators to measure the effectiveness of care across settings, including reimbursement incentives; (d) education in transitional care for all health care professionals across care settings; and (e) research to improve transitional care processes, better patient/family management of care, and improving involvement and training of health care professionals (Coleman & Boult, 2003).

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Potentially Avoidable Hospitalizations A study examining the frequency and reasons for potentially avoidable hospitalizations of nursing home residents (Ouslander et al., 2010) identified five medical conditions accounting for 95% of diagnoses for hospitalizations considered potentially avoidable—cardiovascular (congestive heart failure), respiratory (pneumonia, bronchitis), acute mental status changes (sepsis, fever, dehydration), skin (cellulitis), and gastrointestinal disorders (diarrhea). Out of 200 hospitalizations that were evaluated, 67% were deemed potentially avoidable (Ouslander et  al., 2010). Rehospitalization from LTC increases the risk for complications, including delirium, iatrogenic illness, deconditioning, polypharmacy, and pressure ulcers (Oakes et  al., 2011). Older adults with a higher level of preexisting conditions are more likely to die in the hospital or die 6 weeks from admission compared with those with less comorbidity (Ahearn, Jackson, McIlmoyle, & Weatherburn, 2010). Areas of improvement to reduce unnecessary hospitalizations from LTC include better care transitions, support of nursing home infrastructure and clinical practice, better communication tools for health professionals across care settings, and increased attention to reducing the frequency of medically futile care by improving advance care planning (Ouslander et al., 2010). ED admissions for older adults with severe and chronic illnesses are increasing more rapidly than any other group. More than 25% of older adult ED patients are cognitively impaired, with 10% suffering from delirium (Han, Wilson, & Ely, 2010).

QUALITY-OF-CARE ISSUES Three conditions identified as having important quality gaps in caring for the older adults when transitioning in both directions between nursing facilities and EDs identified by the Society for Academic Emergency Medicine (SAEM) Geriatric Task Force are cognitive assessment, pain management, and transitional care (Terrell et al., 2009). Quality indicators developed addressing these three areas will aid researchers and clinicians in improving quality care for older adults transitioning from ED to LTC.

Cognitive Assessment: Delirium and Dementia Two common coexisting conditions in hospitalized older adults are dementia and delirium, which require complex care management when discharged (Naylor et al., 2007). Older adults with dementia are among the highest risk group during transitions due to high comorbidity, inability to comprehend or participate in care decisions or the transition process, and reliance on caregivers to navigate the transition across care settings (Fulton, Rhodes-Kropf, Corcoran, Chau, & Castillo, 2011). Cognitive assessment and documenting baseline mental status is critical in detecting delirium in older adults across care settings. The older adults admitted to the ED with confusion should undergo cognitive testing and screening for delirium. Determining the acuity in change in mental status is the essential first step to diagnosis delirium (Inouye, 2006). Older adults with dementia are at greater risk for delirium. Delirium occurs in up to 40% of nursing home residents (Culp et al.,

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1997) and they are more likely to be admitted to the ED with delirium (Han et al., 2009). Delirium, an acute onset of fluctuating disorder of attention and cognition, is a common and life-threatening condition in older adults that is often overlooked or misdiagnosed. ED physicians misdiagnose delirium in 57% to 83% of cases due to inadequate screening (Han et  al., 2010). Delirium may persist for weeks and months in postacute facility patients admitted with delirium (Kiely et  al., 2004). Unrecognized and untreated delirium is associated with increased morbidity and mortality contributing to long-term direct health care costs ranging from $38 billion to $152 billion each year (Leslie, Marcantonio, Zhang, Leo-Summers, & Inouye, 2008). Screening for delirium in health care settings and during transitions in LTC is paramount, particularly in older adults with dementia. It is possible that 30% to 40% of delirium may be preventable with early recognition, and interventions may reduce delirium duration (Inouye et  al., 2007). With early diagnosis of delirium, interventions can be implemented to avoid longer hospital stays, higher mortality rates, cognitive and functional decline, institutionalization, and increased health care costs. Determining the acuity in change in mental status is essential. Risk factors for delirium and underlying causes should be addressed. The Confusion Assessment Method (CAM), to screen for delirium, is widely used in hospital settings (Inouye et  al., 1990) and also in nursing homes. Routine and appropriate screening is needed in the ED (Han et  al., 2010). The Brief Interview for Mental Status (BIMS), to evaluate cognition, and CAM are used in nursing homes as part of the Minimum Data Set 3.0 (Centers for Medicare & Medicaid Services, 2010). Older adults (Fulton et al., 2011) with dementia who are admitted to the hospital are more likely to develop delirium, functional decline, incontinence, pressure sores, infections, and to suffer from inadequate pain control. Furthermore, interventions to assist in transitions to LTC are needed, especially for patients with dementia (Fulton et al., 2011).

Pain Management Inadequate pain management for vulnerable older adults particularly those in nursing homes has been recognized by the Institute of Medicine (IOM) as a public health problem. “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research” (IOM, 2011) calls attention to vulnerable older adults within the U.S. population who are more likely to encounter inadequate pain management. Frail older adults with cognitive impairment, delirium, or dementia are more likely to experience undertreated pain due to barriers to pain assessment and management (Ferrell, Ferrell, & Rivera, 1995). Commonly, older adults are admitted to the ED with the chief complaint of pain (Terrell et al., 2009). An estimated 3.65 million US ED visits annually by patients 75 or older were pain-related (National Hospital Ambulatory Medical Care Survey years 2003-2009; Platts-Mills et al., 2012). Although effective pain management is a component of quality of care across settings, pain management remains inconsistent and inadequate in health care (IOM, 2011). Integrating palliative care and emergency medicine to manage pain and serious chronic disease in older adults is promising. A better matching of patient and family-centered goals of care, utilization of resources, improved patient safety, reduced hospital length of stay, smoother transitions across care settings and fewer readmissions are a priority (Grudzen, Stone, & Morrison, 2011).

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Transitional Care Older adults with complex serious chronic conditions are vulnerable and more likely to suffer harm from poor care transitions. The goal of the Department of Health and Human Services (HHS) “Roadmap to Better Care Transitions and Fewer Readmissions” is to advance efforts to ensure safe, effective, and efficient transitions across health care settings and to decrease preventable hospital readmissions (HHS, 2011). According to HHS, elements for safe, effective, and efficient care transitions are patient/caregiver training to promote self-care; collaborative patient/ family-centered care plans to share across care settings; timely, accurate, and standardized communication and information sharing exchange between transferring and receiving providers with sending provider maintaining responsibility for care until receiving provider confirms the transfer or assumes responsibility; safe medication practices and reconciliation; ensured transportation for appointments and health services; and timely delivery of durable medical equipment. Information that should be communicated when transitioning across care settings include identification of and contact information for transferring provider; primary diagnosis and major health issues; patient’s cognitive and functional status; care plan, including patient goals and preferences and treatment plan; advance care planning—patient goals of care—advance directive and power of attorney; emergency contact information; reconciled medication list; tests results and planned interventions; formal and informal caregiver status; designated community-based provider, LTC services, and social supports; and follow-up appointments with contact information and follow-up with patient and family within 48 hours after discharge from a setting (HHS, 2011). Continuous coordinated quality care across settings is essential to promote healthy aging for older adults living longer with serious and complex chronic conditions. University of Colorado Health Sciences Center Care Transitions Program (Coleman, Parry, Chalmers, & Min, 2006) and University of Pennsylvania’s New Courtland Center for Transitions and Health (Naylor et  al., 1999, 2004) have provided a framework with evidence-based models and interventions for transitional care (LaMantia et  al., 2010). Moreover, primary care-based transitional care models are promising (Boult et al. 2011). Research building on the methodological framework of evidence-based models and interventions of transitional care is needed to continue to improve health care delivery and reduce avoidable hospitalizations.

CASE STUDY At 81, Gertrude Malik had gone through so many transitions in her life. These transitions included two knee surgeries, hysterectomy, and nephrectomy, and a right hip replacement. In addition, she lost one daughter who was in her 30s; her husband of 55 years died about 3 years ago. She has a history of hypertension, diabetes, asthma, chronic low back pain, and osteoporosis. In spite of the many changes that happened in her life and her multiple comorbidities, she remained active, independent, positive, and grateful. However, a couple of months after a heart attack, she began to show a significant decline in her overall physical functioning and cognitive/emotional well-being. A number of activities of daily living (ADLs) that she used to do independently

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such as dressing, grooming, and toileting, she now needed assistance to complete. Additionally, she had experienced significant weight loss and was at high risk for developing dehydration and further weight loss secondary to her inability to eat and drink. Her daughter came from out of state and decided to seek consultation from Gertrude’s physician. Gertrude was immediately admitted to the hospital. Because it was very evident that she could no longer take care of herself, her physician suggested nursing home placement. Four days after hospital admission, Gertrude was transferred to a nursing home for LTC placement. Her house, car, and furniture were all sold. Her daughter decided to give away the rest of Gertrude’s many years worth of treasured possessions, including her long-time companion, a cat named “Louise.” She arrived in the nursing home with only some clothes and a few framed photographs of her grandchildren and Louise. From living in a three-bedroom house for over 30 years with a backyard garden, two-car garage, and an outside den overlooking a creek, Gertrude was transferred to a middle bed next to two other residents in a room located in the north wing of a nursing home.

RSS/TRANSFER TRAUMA Relocating at any age, under any circumstances (such as attending an out-of-state university, getting married, a new job, a new house) and whether it is permanent, semipermanent, or temporary, is stressful. The physical tasks involved in planning the move, making “to-do” lists, buying supplies, selling or giving away unnecessary items, and packing and unpacking should already give any person a lot of anxiety and frustration. However, the emotional effect from planning the relocation, implementation of tasks, actual relocation, and the aftermath can lead to a serious condition called RSS, which is also known as transfer trauma. RSS or transfer trauma is the combination of physiological and/or psychological disturbances as a result of transfer from one environment to another (Carpenito, 2000; Jackson, Swanson, Hicks, Prokop, & Laughlin, 2000). It is important to note that the effects of RSS and transfer trauma do not discriminate among those who have chosen to move voluntarily, those who have been involuntarily relocated, or those who have been placed in a care facility for mental or medical needs. Symptoms of RSS are the same in all age groups. They can include exhaustion, sleep disturbance, anxiety, financial strain, grief and loss, depression, and disorientation. In older people, these symptoms can quickly become exacerbated by dementia, mild cognitive impairment, poor physical health, frailty, lack of a support system, and sensory impairment. The severity of transfer trauma is dependent on the type of transfer, cognitive and emotional status of the older adult who is moving and his or her readiness for relocation. The most severe outcome is death. Elevated mortality rates among patients following relocation have been observed and studied (Aldrich & Mendkoff, 1963; Bourestom & Tars, 1974; Lander et al., 1997; Lutgendorf, Reimer, Schlechte, & Rubenstein, 2001; Robertson, Warrington, & Eagles, 1993). Further findings from these studies showed that death was frequent within hours or days of transfer and that the risk of death was higher following interfacility rather than intrafacility transfer (Bernard, Hayward, Rosevear, Chun, & McMahon, 1996; Clough, Kay, Gombeski, Nickelson, & Loop, 1993; Etxebarría et  al., 1998; Gordon & Rosenthal, 1996; Reeve, Runcie, Reidy, & Wallace, 1990; Schiff et al., 1986).

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Nonfatal outcomes include significant decline in health status, increased health risks (e.g., falls, fractures, infection, development of pressure ulcers, etc.), lowered cognitive and physical functioning, and symptoms of emotional distress. Most studies of nonfatal transfer trauma limited the period of observation to a few weeks after transfer. As a result, such studies may not evaluate the adverse effects of the transfer that may develop over long periods of time. An increased frequency of falls following transfer shows this point. Falls are the leading cause of injury and death through accidents in older adults. In 2008, 82% of fall deaths were among people 65 and older (Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, 2010). Falls are the second leading cause of accidental or unintentional injury deaths worldwide (Office of the Provincial Health Officer, 2004; WHO, 2012). Multiple studies about the negative effects of transfer trauma—fatal and nonfatal—and the quality of the evidence produced were adequate to convince the North American Nursing Diagnostic Association (NANDA) to approve a diagnosis called RSS in 1992. Additionally, the Administration on Aging’s Disaster Preparedness Manual for the Aging Network produced in March 1995 included a section dedicated to older adults and their response to disaster. In this section, transfer trauma as experienced by older adults is described. The manual explains, “Sudden and unexpected relocation can result in inadequate information about individual medical needs. In addition, the psychological tasks associated with adjusting to new surroundings and routines can lead to depression, increased irritability, serious illness, and even death in the frail elderly” (AOA, 1995).

LTC TRANSITIONS The reason for moving an older adult is not always due to an illness or declining health. At times, older adults make their own decisions to move to enjoy a new life. They see the move as an opportunity to meet new people, have more adventure in life, and achieve further goals they want to meet (e.g., move closer to their children to improve relationship). Moving someone whether it is into a nursing home, assisted living, or other health care setting is still considered relocation even though in the professional technical terms we call it a placement, or a transfer. A lot of the older adults think of a nursing home as their final destination, where they will die. However, it is not necessarily true. In 1997, according to HHS, 73% of nursing home residents were discharged to other settings such as home, another facility, or acute care hospital to be treated for an injury or illness (Gabrel, 2000). This means that any frail older adult is at risk for relocation or transfer trauma throughout his or her older adult life and it is critical for any facility and agency to be able to manage associated stress and implement interventions to minimize its effects. Moving from one’s familiar setting to another location such as any residential care facility environment (RCFE) or a nursing home involves a complete lifestyle and culture change. The symptoms related to RSS plus the adjustment an older adult has to go through due to change in one’s lifestyle and culture are worsened by any of the conditions apparent in any older person—such as age-associated changes and disabilities that are part of one’s aging process and multiple acute and/ or chronic illness that any older adult already is suffering from. As a result, the effects of the relocation, such as confusion, depression, and agitation, would lead to increased frequency of fall incidents and accidents, undesirable weight loss, and

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self-care deficits. Gertrude, moving to a new environment, would have to change her lifestyle and adapt to her new home. This is a major undertaking not just for Gertrude as the individual who needs to accept this critical change in her life, but this is also a challenge for any family member, LTC administrator/operator, and staff to be able to assist her as she transitions. For every move—whether the move is occurring from the older adult’s home to a board and care, independent/assisted living, or a nursing home, it is essential for the older adult, family, and people assisting her to consider three aspects of care transition to ensure successful relocation with minimized to zero effects of RSS: Needs assessment, transition plan/team, and follow-up and monitoring.

Needs Assessment Moving is a personal adjustment that some people make easier than others. Because every move is different and every person reacts differently to a relocation, it is key to have a customized and individualized transition plan. This plan should be initiated with a needs assessment. A needs assessment should be holistic and include every aspect that is important to the older adult. Just like with Gertrude, it is important to assess her lifestyle preferences, daily activities, physical functioning, and access to important places, people, and even her long-time pet companion, “Louise.” The goal is for Gertrude to be able to maintain her normal daily life and to promote her optimum functioning in her new environment.

Transition Plan/Team Studies have shown that certain factors are successful in minimizing signs and symptoms of RSS. Having a transition plan is the hallmark of transition management. Relocating an older adult involves not just one person but also an entire team of people who will implement the transition plan, which includes providing not just physical assistance but also emotional support throughout the entire transition process. A successful and effective transition plan should be created and implemented for any type of move with the ultimate goal of minimizing ­symptoms.

Transition Plan Requirements A transition plan at a minimum shall include the following: 1. A designated person whether a family member, advocate/friend, or social worker (SW; from an agency or facility) should be assigned to function as the transition coordinator. In addition, a transition team should be created who will be responsible for the implementation of the plan. The transition team should include the older adult, a family member, advocate/friend, facility SW, manager, physician, and nursing staff (from an agency if the older adult resides in a facility). 2. A proposed timetable for planning and implementation of the transition plan should be developed. This should include a schedule of meetings/conferences with the older adult who is about to move, and appropriate members of the transition team to discuss key steps, progress, and follow-up.

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3. An action plan should be developed, which must include interventions to handle stress not just for the older adult who is moving but also for other people who are connected/involved with the move, for example, family members, staff of facility where the older adult is moving from, friends, and so forth. 4. A communication system should be created to provide timely notifications to family, friends, physicians, and appropriate agencies as to when and to which place the older adult is moving. 5. An opportunity for the older adult to schedule or hold individual transition planning meetings with family/friend/advocate and appropriate members of the transition team to reinforce information received at previous meetings, to discuss placement alternatives, and to provide preferences for placement. Seeking and providing a choice is very important. At each planning conference (if requested by the older adult/family or initiated by members of transition team), an individual transition plan should be developed with the input of the older adult, legal representative/family (if any), and other appropriate professionals involved in the care and treatment of the older adult who is moving. The planning conference should be older adult–centered. The transition process is focused on the older adult’s and/or legal decision maker’s preferences/choice of alternative living environment. The older adult and/or representative must be actively involved. 6. A procedural checklist that the transition team will use must be created to implement the older adult’s transition plan. This checklist should •  Mitigate RSS/transfer trauma •  Address special needs of RSS with issues in cognitive/behavior, acute/chronic illness, and disability •  Identify approaches the transition team will initiate to assist the older adult with the transition process •  Address the older adult’s preference/choice for relocation settings •  Provide opportunity for the older adult to visit potential settings, facilities, and institutions and provide assistance •  Assess the older adult’s continuing care needs and needs for relocation support •  Assess and plan care for older adult RSS/transfer trauma; arrange spiritual care or psychiatric consult, if appropriate, and individualized visitation by volunteers and familiar persons for example, family/friends, former caregiver, next-door neighbor, and so forth •  Identify services that are needed to affect a positive transition/relocation and how the services will be accessed •  Tailor activities to address the changing environment and focus on moverelated events, that is, arranging tours, holding going away parties, or shopping for things needed in a new setting to help become oriented to new and unfamiliar locations •  Assign the same caregiver or staff to monitor condition, including any signs and symptoms of RSS and to assist with relocation orientation •  Involve ombudsman/advocate to regularly participate in older adult and family meetings and other informational sessions •  Invite relocated or transitioned older adults who have successfully transitioned in their respective new environments, to provide reassurance that their relocation is going well and hopefully their relocation also will be successful •  Show evidence of continuity of care from transition team members and/or staff through accurate endorsement of care issues; know the older adult’s lifestyle preferences; proper orientation of the new facility and introduction of

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new community members—neighbors, unit staff, and other residents (if moving to a new facility) 7. A plan on how the team will work with the older adults and their families/ guardians to resolve complaints or concerns should be developed. Transition team members should attempt to resolve any grievances voiced by the older adult and family members that relate to the transition process. 8. A plan must be developed for the transition team to evaluate the success of the transition plan and provide follow-up after relocation and availability for followup questions and consultation. Posttransition plan-of-care meeting should address the following points: •  Assessment of the older adult’s status with regard to RSS •  Identification of specific older adult needs after transfer •  Adjustment progress of older adult •  Accommodations being done by staff •  Follow-up issues need to be resolved 9. An evaluation tool should be created by transition team to measure effectiveness of transition plan and assess whether efforts to prevent, identify, and address RSS have been successful. Supporting an older adult’s transition is a continuous process. It is customized and individualized based on the needs of the person transitioning. Just like any other plan of care, the transition plan should be evaluated constantly and modified as necessary. The transitioning older adult’s needs should be the central point of the plan. The ultimate goal of the team, which includes the older adult, should be preventing or minimizing effects of transfer trauma. If the transition requirements are followed and the interprofessional team supports each other in achieving its goals, transition of the older adult should be safe, effective, and efficient, which then promotes health status and QOL.

REFERENCES Administration on Aging (AOA). (1995). Emergency preparedness manual for the aging network. Retrieved from http://www.aoa.gov/disaster/manual/atitltoc.html Ahearn, D. J., Jackson, T. B., McIlmoyle, J., & Weatherburn, A. J. (2010). Improving end of life care for nursing home residents: An analysis of hospital mortality and readmission rates. Postgraduate Medical Journal, 86(1013), 131–135. Aldrich, C. K., & Mendkoff, E. (1963). Relocation of the aged and disabled: A mortality study. Journal of the American Geriatrics Society, 11, 185–194. Arbaje, A. I., Boonyasai, R. T., & Dilworth-Anderson, P. (2011). The older person in transition: Implications for pathways of transitions of care. In P. Dilworth-Anderson, & M. H. Palmer (Eds.), Annual review of gerontology and geriatrics: Pathways through the transitions of care for older adults (Vol. 31, pp. 15–30). New York, NY: Springer Publishing Company. Bernard, A. M., Hayward, R. A., Rosevear, J., Chun, H., & McMahon, L. F. (1996). Comparing the hospitalizations of transfer and non-transfer patients in an academic medical center. Academic Medicine, 71, 262–266. Boult, C., Reider, L., Leff, B., Frick, K. D., Boyd, C. M., Wolff, J. L., . . . Scharfstein, D. O. (2011). The effect of guided care teams on the use of health services: Results from a cluster-randomized controlled trial. Archives of Internal Medicine, 171(5), 460–466. Bourestom, N., & Tars, S. (1974). Alterations in life patterns following nursing home relocation. The Gerontologist, 14(6), 506–510.

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Braden, B. J. (1998). The relationship between stress and pressure sore formation. Ostomy/ Wound Management, 44(3A Suppl.), 26S–36S; discussion 37S. Carpenito, L. J. (2000). Nursing diagnosis. Application to clinical practice (8th ed.). Philadelphia, PA: J B Lippincott. Centers for Disease Control and Prevention, National Center for Injury Prevention and Control. (2010). Web–based Injury Statistics Query and Reporting System (WISQARS) [online]. Retrieved from http://www.cdc.gov/injury/wisqars/ Centers for Medicare & Medicaid Services. (2011). Community-based care transition program. Retrieved from: http://www.cms.gov Centers for Medicare & Medicaid Services. (2010). MDS 3.0. Retrieved from http://www .cms.gov Clough, J. D., Kay, R., Gombeski, W. R., Nickelson, D. E., & Loop, F. D. (1993). Mortality of patients transferred to a tertiary care hospital. Cleveland Clinic Journal of Medicine, 60(6), 449–454. Coleman, E. A., Boult, C., & American Geriatrics Society Health Care Systems Committee. (2003). Improving the quality of transitional care for persons with complex care needs. Journal of the American Geriatrics Society, 51(4), 556–557. Coleman, E. A., Parry, C., Chalmers, S., & Min, S. J. (2006). The care transitions intervention: Results of a randomized controlled trial. Archives of Internal Medicine, 166(17), 1822–1828. Culp, K., Tripp-Reimer, T., Wadle, K., Wakefield, B., Akins, J., Mobily, P., & Kundradt, M. (1997). Screening for acute confusion in elderly long-term care residents. Journal of Neuroscience Nursing, 29(2), 86–88, 95–100. Etxebarría, M. J., Serrano, S., Ruiz Ribó, D., Cía, M. T., Olaz, F., & López, J. (1998). Prospective application of risk scores in the interhospital transport of patients. European Journal of Emergency Medicine, 5(1), 13–17. Ferrell, B. A., Ferrell, B. R., & Rivera, L. (1995). Pain in cognitively impaired nursing home patients. Journal of Pain and Symptom Management, 10(8), 591–598. Fulton, A. T., Rhodes-Kropf, J., Corcoran, A. M., Chau, D., & Castillo, E. H. (2011). Palliative care for patients with dementia in long-term care. Clinics in Geriatric Medicine, 27(2), 153–170. Gabrel, S. (2000). Characteristics of elderly nursing home current residents and discharges: Data from the 1997 National Nursing Home Survey. U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics. Gordon, H. S., & Rosenthal, G. E. (1996). Impact of interhospital transfers on outcomes in an academic medical center. Implications for profiling hospital quality. Medical Care, 34(4), 295–309. Grudzen, C. R., Stone, S. C., & Morrison, R. S. (2011). The palliative care model for emergency department patients with advanced illness. Journal of Palliative Medicine, 14(8), 945–950. Han, J. H., Morandi, A., Ely, E. W., Callison, C., Zhou, C., Storrow, A. B., . . . Schnelle, J. (2009). Delirium in the nursing home patients seen in the emergency department. Journal of the American Geriatrics Society, 57(5), 889–894. Han, J. H., Wilson, A., & Ely, E. W. (2010). Delirium in the older emergency department patient: A quiet epidemic. Emergency Medicine Clinics of North America, 28(3), 611–631. Inouye, S. K. (2006). Delirium in older persons. New England Journal of Medicine, 354(11), 1157–1165. Inouye, S. K., Studenski, S., Tinetti, M. E., & Kuchel, G. A. (2007). Geriatric syndromes: Clinical, research, and policy implications of a core geriatric concept. Journal of the American Geriatrics Society, 55(5), 780–791. Inouye, S. K., van Dyck, C. H., Alessi, C. A., Balkin, S., Siegal, A. P., & Horwitz, R. I. (1990). Clarifying confusion: The confusion assessment method. A new method for detection of delirium. Annals of Internal Medicine, 113(12), 941–948. Institute of Medicine (IOM). (2011). Relieving pain in America: A blueprint for transforming prevention, care, education and research. Washington, DC: The National Academies Press.

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Jackson, B., Swanson, C., Hicks, L. E., Prokop, L., & Laughlin, J. (2000). Bridge of continuity from hospital to nursing home–Part II: Reducing relocation stress syndrome–an interdisciplinary guide. Continuum, 20(1), 9–14. Kiely, D. K., Bergmann, M. A., Jones, R. N., Murphy, K. M., Orav, E. J., & Marcantonio, E. R. (2004). Characteristics associated with delirium persistence among newly admitted postacute facility patients. Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 59(4), 344–349. LaMantia, M. A., Scheunemann, L. P., Viera, A. J., Busby-Whitehead, J., & Hanson, L. C. (2010). Interventions to improve transitional care between nursing homes and hospitals: A systematic review. Journal of the American Geriatrics Society, 58(4), 777–782. Lander, S. M., Brazill, A. L., & Ladrigan, P. M. (1997). Intrainstitutional relocation. Effects on residents’ behavior and psychosocial functioning. Journal of Gerontological Nursing, 23(4), 35–41. Leslie, D. L., Marcantonio, E. R., Zhang, Y., Leo-Summers, L., & Inouye, S. K. (2008). One-year health care costs associated with delirium in the elderly population. Archives of Internal Medicine, 168(1), 27–32. Lutgendorf, S. K., Reimer, T. T., Schlechte, J., & Rubenstein, L. M. (2001). Illness episodes and cortisol in healthy older adults during a life transition. Annals of Behavioral Medicine, 23, 166–176. Naylor, M. D., Brooten, D., Campbell, R., Jacobsen, B. S., Mezey, M. D., Pauly, M. V., & Schwartz, J. S. (1999). Comprehensive discharge planning and home follow-up of hospitalized elders: A randomized clinical trial. Journal of the American Medical Association, 281(7), 613–620. Naylor, M. D., Brooten, D. A., Campbell, R. L., Maislin, G., McCauley, K. M., & Schwartz, J. S. (2004). Transitional care of older adults hospitalized with heart failure: A randomized, controlled trial. Journal of the American Geriatrics Society, 52(5), 675–684. Naylor, M. D., Hirschman, K. B., Bowles, K. H., Bixby, M. B., Konick-McMahan, J., & ­Stephens, C. (2007). Care coordination for cognitively impaired older adults and their caregivers. Home Health Care Services Quarterly, 26(4), 57–78. Oakes, S. L., Gillespie, S. M., Ye, Y., Finley, M., Russell, M., Patel, N. K., & Espino, D. (2011). Transitional care of the long-term care patient. Clinics in Geriatric Medicine, 27(2), 259–271. Office of the Provincial Health Officer. (2004). Prevention of falls and injuries among the elderly: A special report from the Office of the Provincial Health Officer. Victoria, B.C.: Ministry of Health Planning. Retrieved from http://www.health.gov.bc.ca/library/publications/year/2004/ falls.pdf Ouslander, J. G., Lamb, G., Perloe, M., Givens, J. H., Kluge, L., Rutland, T., Atherly, A., & Saliba, D. (2010). Potentially avoidable hospitalizations of nursing home residents: Frequency, causes, and costs: [see editorial comments by Drs. Jean F. Wyman and William R. Hazzard, pp 760–761]. Journal of the American Geriatrics Society, 58(4), 627–635. Platts-Mills, T. F., Esserman, D. A., Levin Brown, D., Bortsov, A. V., Sloane, P. D. & McLean, S. A. (2012). Older US emergency department patients are less likely to receive pain medication than younger patients: Results from a national survey. Annals of Emergency Medicine, 60(2), 199-206. Reeve, W. G., Runcie, C. J., Reidy, J., & Wallace, P. G. (1990). Current practice in transferring critically ill patients among hospitals in the west of Scotland. British Medical Journal, 300(6717), 85–87. Robertson, C., Warrington, J., & Eagles, J. M. (1993). Relocation mortality in dementia: The effects of a new hospital. International Journal of Geriatric Psychiatry, 8, 521–525. Schiff, R. L., Ansell, D. A., Schlosser, J. E., Idris, A. H., Morrison, A., & Whitman, S. (1986). Transfers to a public hospital. A prospective study of 467 patients. New England Journal of Medicine, 314(9), 552–557.

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Terrell, K. M., Hustey, F. M., Hwang, U., Gerson, L. W., Wenger, N. S., Miller, D. K., & Society for Academic Emergency Medicine (SAEM) Geriatric Task Force. (2009). Quality indicators for geriatric emergency care. Academic Emergency Medicine, 16(5), 441–449. U.S. Department of Health and Human Services. (2011). Roadmap to better care transitions and fewer readmissions. Retrieved from http://www.healthcare.gov

World Health Organization. (2012). Falls. Retrieved from http://www.who.int/ mediacentre/factsheets/fs344/en/

18

NURSING HOME CULTURE CHANGE Kyle Cotter Fredrickson

LEARNING OBJECTIVES On the completion of Chapter 18, the reader will be able to •  Understand the history of nursing home development as a component of

the long-term care (LTC) continuum •  Become familiar with the basic legislative bodies responsible for the

development of nursing homes •  Become familiar with the emerging movement to change the culture of

nursing home operations and design •  Understand the difference between person-centered care and medically

centered care •  Define nursing home culture change •  Understand emerging models of care and identify its leaders •  Discuss barriers to the culture change movement, including regulations,

lack of empirically tested measures, and varying demographics •  Discuss implications of future policy decision making in the nursing home

industry

For many seniors, the thought of a nursing home connotes despair, isolation, and ultimately the final stop prior to death. Very few individuals hope that their personal life circumstances will include placement in a nursing home, and even fewer believe should placement occur it would be a positive experience. Yet, despite the stereotypes, nearly 1.5 million individuals currently reside in nursing homes across the country and over 2.5 million people currently experience a short-term stay, generally following a hospitalization wherein daily skilled nursing care and rehabilitation are required before returning home or to a lower level of care (My InnerView, 2008). Regardless of the type of stay, many consider nursing home placement an unwelcome part of their care needs.

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Few individuals take preemptive measures in previewing and evaluating nursing homes for quality of care and environment until acute circumstances require investigation. In many cases, a dramatic change in medical, physical, or mental condition forces not only the individual but also his or her family to find quick placement. Oftentimes, family members or friends reluctantly accept placement based on the professional and medical recommendations of a physician or hospital staff member—many of whom have never been to nor have in-depth knowledge of the operation of the facility to which they are referring the patient. In other cases, family members may have been struggling for a considerable amount of time with caring for a loved one at home, and the consequences of caregiver burnout are paramount. However, there are those unfortunate others who do not have family or friends available to care for them, and they are faced with nursing home placement as the only option available, given their circumstances. As such, placement decisions often have to be made quickly and are subject to bed availability in a local area, cost, type of insurance coverage, and whether or not the particular clinical services provided in the facility accept the individual’s clinical diagnosis and physical needs. In short, the decision-making process of placing an individual in a nursing home is often heavily managed and guided through a medical-model approach, conducted out of acute necessity and with limited understanding as to the long-term quality-of-life (QOL) issues. Some individuals adjust well to life in a nursing home. Others do not. ­Although there is no singular theory or research identifying those who do adjust well and why, there are statistics indicating that current nursing home life does not meet the psychosocial needs of the population it serves. As an example, rates of depression among nursing home residents are staggering. ­Approximately 14.4% of nursing home residents were identified as having probable and/or major depressive disorders. Minor depression in residents accounted for approximately 16.8%, and 44.2% were found to have depressive symptomatology (Teresi, Abrams, Holmes, Ramirez, & Eimicke, 2001). Although there is no doubt that multiple complex factors combine to increase an aged individual’s risk of depression, those residing in nursing homes tend to be at higher risk than the general population. Nursing homes, occasionally referred to as “skilled nursing facilities” or “convalescent hospitals,” have fulfilled an important and necessary need in the continuum of lifelong medical care. Over the last decade; however, a growing consensus has emerged regarding the QOL that those residing in facilities are experiencing. Complex in nature, nursing homes are subject to regulatory requirements and oversight through federal and state governments. Many of the concerns expressed over the last few decades with nursing home care have come from the public/governmental agencies and have centered on issues of measurable outcomes such as weight loss, restraints, psychotropic medication use, and skin issues. Less tangible, but no less important, are issues surrounding QOL. For those who have experienced nursing homes either as families, residents, or staff, an underlying discomfort is common. Many struggle with identifying what feels to be wrong with the environment, as the experience is familiar in one sense, and completely foreign in the other. The familiarity of medically based clinical systems, such as doctors, nurses, and attendants caring for individuals with medical concerns, is a highly respected, valued, and accepted component of modern society. Indeed, many people look to such individuals in times of need and appreciate a regimented system of care to ensure their recovery and general

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improvement. However, for those whose condition cannot be cured through medicine or clinical interventions—such as aging—the overarching presence of such systems become confusing, constraining, and unnatural. When extended over a prolonged period of time, these traditionally valued systems may inadvertently cause damage toward the overall QOL of the people they originally intended to help. The emerging consensus surrounding nursing homes is that in both design and operation, the medical model of care currently being offered to millions of seniors is fundamentally flawed when implemented in the context of long-term services. This visceral belief has led many in the field to seek new ways and ideas to provide the elders they serve with a meaningful level of QOL in their remaining years. Their passion in meeting this need has led to a radical, albeit grassroots campaign to transform the nursing home industry into a system of care that reflects the lifelong patterns and a natural environment of home.

Nursing Homes Pre–Culture Change Nursing homes, as an industry, can trace their roots as far back as the 1700s, but more relatively to the early 1900s, wherein religious and charitable organizations maintained poorhouses for older and disabled adults (Manule & Price, 2009). Care was often provided in dedicated homes operated by live-in caregivers and community volunteers. During the 1930s, economic changes as a result of the Great Depression prompted the creation of the Social Security Act. With its legislation, disadvantaged seniors began receiving cash to cover the cost of their care needs; this led to the conceptual birth of the senior LTC industry as a for-profit model of care (Manule & Price, 2009). Two further changes in health care, the Hill-Burton Act in 1946, which led to the expansion of the hospital industry and the 1965 Medicare/Medicaid program, which created both medical and LTC coverage for those older than 65 years (in some cases younger, depending on specific criteria) helped solidify the nursing home industry both financially and as a critical component of the continuum of care (Manule & Price, 2009). Perhaps as a result of being funded both federally and at the state level, nursing homes and the expansion of the industry imitated their acute-level cousins both in design and operations (Manule & Price, 2009). Consequently, the nursing home infrastructure was built to resemble an acute setting with centralized nursing stations, laminate flooring, multiple patients in a room, and medical equipment and devices placed strategically for staff needs. In short, the ideology behind the design of many nursing homes was one of medical predominance, staff efficiency, and maximum census capability for reimbursement. In addition to the brick and mortar, the industry resembled the day-to-day operations of an acute setting. The administrator, the medical director (a physician), the director of nursing (DON), and the frontline nursing staff, including licensed nurses and attendants, comprised a medical and administrative hierarchy in which operations and decision making was expected to follow. At the top were the administrator, medical director, and DON. Their responsibility included the fiscal and medical management of the facility with the frontline staff, nurses, and attendants expected to carry out orders as assigned. Ultimately, the residents found themselves

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at the bottom of an institutional hierarchy and subject to the dictated policies and procedures of the facility’s staff. Routine daily activities, such as when to go to bed or get up, what clothing to wear, when to take a shower, when to eat, or what recreational activity to pursue was defined and dictated by the staff. The residents’ autonomy in making daily decisions was limited and often approved or denied according to staff convenience (Ragsdale & McDougall, 2008). During the 1980s, public concern regarding quality of care and resident QOL began to attract attention at the state and federal level. At the time, the Health Care Financing Administration (HCFA) regulated nursing homes. Owners and operators of nursing homes attempted to reduce regulation by approaching the administration; however, their request was met with strong public disapproval. Instead, lawmakers pressed for investigation into complaints and concerns. The National Academy of Sciences’ Institute of Medicine was contracted to complete an in-depth study of the industry. Their findings, published in a report appropriately named “Improving Quality of Care in Nursing Homes” were released in 1986. Over 40 recommendations, including a standardized assessment (later to become the Minimum Data Set [MDS]), local state government oversight, and financing reform were some of the initiatives encouraged to help improve care (Manule & Price, 2009). The result of the report findings and recommendations ultimately prompted Congress’ 1987 “Nursing Home Reform Act.” The Act sought to improve standards of care, improve QOL, and ensure resident’s rights (Doty, Koren, & Sturla, 2008). The Nursing Home Reform Act was a much-needed first step in improving quality of care for residents in nursing homes. However, concerns remained with the overarching institutional- and medical-focused environment. In fact, many of the regulations set forth in the Act may have inadvertently strengthened the preoccupation with clinical systems. The Act mandated that nursing homes follow increasingly strict regulations. Failures to follow any current interpretation of the law produced severe repercussions in the form of survey deficiencies and fines. As a result, the mind-set and operations of the nursing home began to revolve around the survey process itself, again placing the resident and his or her personal autonomy last (Ragsdale & McDougall, 2008).

The Culture Change Movement In 1997, a small group of 33 providers, advocates, and professionals working in long-term nursing home care met in Rochester, New York, to address the multiple systemic issues that plagued the industry (Misiorski, 2003). Issues such as depressions, isolation, and loneliness as well as use of psychotropic medication and restraints had been increasing despite the Nursing Home Reform Act and its directive to improve QOL for residents (Allen, 2008). What ultimately was determined by the group (which would later become the founders of the Pioneer Network) was that the predominatant ideology of the medical model nursing homes was not a natural or humanistic approach to provide longterm, custodial care. The founders further concluded that the hierarchy in decision making regarding activities of daily life for residents should be determined by the residents themselves—with the clinical and medical staff acting in a supportive, not

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a dictatorial role (Doty et al., 2008; Misiorski, 2003; Rahman & Schnelle, 2008). As a result, the concept of “person-centered care” became the foundation of what is now considered one of the most important milestones in the nursing home industry: the culture change movement. Currently headquartered in Chicago, Illinois, the Pioneer Network is the keystone of the culture change movement. A not-for-profit company, the network is dedicated to making fundamental changes in values and practices to create a culture of aging that is life-affirming, satisfying, humane, and meaningful . . . and advocates for culture change in eldercare models from long-term nursing home care to short-term transitional care to community-based care to create homes that are consumer-driven and resident-directed. The network is funded through a combination of donations, corporate sponsors, and by producing/leading conferences and lectures throughout the country and offering publications. Though nationally focused, the Network also sponsors state-based collations, which work with individual providers and local regulatory bodies by sharing information and resources in advancing culture change practices (The Pioneer Network, 2011). Essentially, the culture change movement seeks to address two overarching genera in nursing home operations: the organization’s social and physical factors (Bond & Fiedler, 1999). The social aspects of culture change include addressing issues of resident personal autonomy, resident choice/control over his or her daily lives, independence, and personal interactions with caregivers (Bond & Fiedler, 1999; Lemle & Moss, 1986). The physical factors address the environment and infrastructure. Socially focused culture change practices are concerned with addressing how and who provides care for residents. In the traditional nursing home setting, the medical hierarchy dictates how care is given and by whom. Common traditional practice includes rotating staffing assignments based on the scheduling needs of the facility. Frontline staff members are oftentimes assigned to a particular set of rooms, generally referred to as a run. Flexibility in changing individual resident assignments, such as when resident-to-caregiver personalities did not match, often led to having to switch an entire run. In a culture change facility, staffing is consistent—a resident has the same caregiver(s) on a regular shift basis. This allows the caregiver and the resident to get to know each other personally and to develop a natural and meaningful bond that is often absent when assignments are shifted (Lum, Kane, Cutler, & Yu, 2008–2009). Culture change allows residents to make decisions about their care. In traditional nursing homes, daily care activities such as when a resident is to go to bed and/or when to wake up, when showers are given, what activities are being held, and when meals are to be consumed are all centrally scheduled in a standardized routine meant to increase staff efficiency. It is not uncommon to see residents awakened as early as 5 a.m., dressed and awaiting the 7 a.m. distribution of breakfast in a centralized dining area. Residents are also often assigned certain days of the week in which they are to be given a shower (generally twice a week) with little flexibility as to the actual time in which the shower is given. Activities are often predetermined as much as a month or more in advance and scheduled at precise times of the day.

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In a culture change facility, resident preferences in care and routines are solicited and executed according to personal choice. Residents are allowed the autonomy of determining what times they go to sleep and when they wake up. Showers are given as frequently as desired and during times that are preferential to the individual. Meals may be held or substitutions offered according to personal preferences and served when residents are ready to eat. Some facilities also offer accessible refrigerators to residents that are stocked with sandwiches, fruit, snacks, and other items that may be offered at any time. Activities, either individual or group, can be implemented or adjusted according to the interests and desirability of the residents. Residents may also be encouraged to design or lead group activities for themselves and others. At the heart of culture change is the belief that nursing homes should seek to provide a social structure that is homelike in nature and directed by the resident according to his or her lifelong individual patterns and preferences. Critical to this belief is that the assumed social hierarchy found in traditional nursing homes must be turned on its head. Administration, considered the locus of control in traditional nursing homes, is transformed into a supportive role, wherein their responsibility is to provide resources and flexibility in the facility’s operations to meet individual resident needs. Clinical supervision, although mandatory and necessary to ensure quality care, is negotiated between resident and nurse/physician. A resident plan of care, including approaches and goals, are designed in a manner that is mutually agreed upon as opposed to determined solely by the clinical staff. Some advanced culture change facilities have even taken to writing care plans as if the residents themselves authored them. In traditional facilities, care plans are written from the perspective of the clinician in that the language used refers to the resident in the third person. Other facilities use direct quotations and proper pronouns, such as I or Me. For example, a resident with diabetes who requires a care plan to manage the disease would traditionally have a care plan with interventions written as, “The resident will be offered diabetic snacks three times daily in-between meals in order to maintain blood sugar levels.” A culture change diabetic care plan created with a resident might read “I want to have veggie slices, almonds, or cottage cheese offered to me in-between meals to help my blood sugar remain stable throughout the day.” The effect of such residentdirected care planning helps bring to light not only the personal preferences of the residents but also allows for the residents’ own voice to be documented and ultimately heard. Perhaps the most important shift in the hierarchy is that the frontline caregivers are given much more latitude in addressing and implementing interventions and approaches toward resident care. In traditional facilities, the caregivers or certified nursing assistants (CNAs) are often regarded as low-level employees with little autonomy or influence. The CNA’s input into resident care plans or approaches are rarely solicited or used, despite being the individual often closest to the resident. In culture change facilities, the frontline caregivers are considered the experts in addressing the needs and preferences of the residents. Concerns are brought to the nursing staff as identified and a team approach is implemented in addressing any problems, often with the frontline staff’s intimate and personal knowledge of the residents’ needs having a major role in the plan of care (Misiorski, 2003). Physical changes in nursing homes are directly related to the facility’s infrastructure, including items such as flooring coverings, decorations, removal of

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i­ nstitutional items, and objects such as nursing stations and overhead paging systems. Proponents of culture change recognized that the medical and institutional model in which nursing homes were designed is not conducive to an individual’s QOL and well-being. Although hospital patients may be able to tolerate a clinical setting for a limited duration, the same infrastructure does not support the psychosocial needs of a long-term custodial population. Very few individuals would choose to live the remainder of their lives in a hospital-like setting. Across the country, much attention is being directed toward the look and feel of nursing home facilities. The goal behind culture change initiatives with regard to the infrastructure is to create a homelike environment with decorations and appointings one would expect to see if he or she were still living in his or her own home. In some facilities, drastic changes have taken place, including the removal of the centralized nursing station, paging systems, adding carpet to the floors, and encouraging residents to bring their own furniture from home to decorate their rooms. Medical equipment, once mainstays in hallways and residents rooms, is relocated out of sight until needed—or removed altogether if other means are available and appropriate. Resident room accommodations are being improved by reducing the number of beds to a room or by offering private rooms altogether. Dining services are also being addressed by eliminating ­hospital-tray service and implementing table settings and meal courses, some or all of which may be prepared in an in-unit kitchen/kitchenette, or served directly from a steam cart. Staff may also be encouraged to eat their meals alongside residents, just as people eat at home. Physical alterations of existing nursing homes, however, can be an expensive proposition. Although some changes can be made very easily, such as decorations or changing how meals are served, the cost of other renovations, including removing nursing stations, adding carpet, and reducing the number of beds in rooms (thereby reducing potential income) can be exceptionally prohibitive. Additionally, relatively few formal studies have been conducted into how the outcomes of nursing home renovations impact overall resident satisfaction and QOL (Bond & Fiedler, 1999), though informal documentation and accounts have been encouraging. One study conducted in the late 1990s by Gale Bond and Fred Fiedler investigated the impact nursing homes had when implementing culture change practices by comparing facilities that addressed the social components (changes in hierarchy structure, moving toward a resident-centered approach) and those facilities that changed their physical environment through renovation. Three facilities were chosen: one implemented only social changes, one received a physical remodel with no social or organizational changes, and one control facility did not receive any changes. A pretest–posttest design was used wherein outcomes were measured at baseline and again 6 months later through a specifically designed Lickert-type survey. The survey was issued to residents, families, and staff to measure their satisfaction with the particular changes as well as the extent to which the organizational culture embraced and sustained the new ideology. The results indicated several key findings. In the facility that had instituted only social changes, evidence of substantial and sustained organizational changes were lacking when compared to the remodeled and control facility. The researchers concluded that due to a poor relationship with the facilities supervisor, the frontline staff failed to embrace and implement the proposed changes—indicating perhaps that effective leadership is an essential component in implementing culture change practices.

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In the facility that received only renovations, positive changes in resident and staff satisfaction were significant; however, when compared to the control facility, no statistical difference was found. It was noted that the physical changes did appear to create a closer, more resident-centered approach to care and resident and staff satisfaction with the environment improved; however, the physical renovations did not, in and by themselves, create the sustained changes essential to culture change ideology (Bond & Fiedler, 1999). Currently, the culture change movement is still in its infancy. Many providers, although they may know of culture change, have yet to fully understand what culture change truly is, how it operates, and what it looks like in practice (Jurkowski, 2013). In 2007, the Pioneer Network received a grant from the Commonwealth Fund to conduct and implement studies in culture change practices among some of the country’s 16,000 nursing homes. In one study, a representative sample of 1,435 nursing homes was surveyed via questionnaires to determine their facilities’ level of adoption of culture change practices. Essential practices were determined by evaluating what was considered the fundamental three domains of culture change: resident care, staff culture/working environment, and physical environment. The objective was to determine how many facilities have started to change to a person-centered environment by implementing culture change practices, including decentralizing decision making, promoting staff and resident autonomy, and alterations of the physical environment toward a homelike atmosphere. Facilities were classified into one of three categories: traditional nursing homes, culture change strivers, and culture change adopters. Of the facilities surveyed, only 5% reported that they fit the criteria of being a full culture change adopter. Twenty-five percent indicated that “for the most part” their facilities fit the criteria, and approximately 31% were classified as being in the adopter range. Twenty-five percent of surveyed facilities indicated that the criteria of implementing culture change described their facility “in a few respects or not at all” though their current leadership is either pursuing additional changes and are “extremely or very” committed to making future changes. Forty-three percent of facilities indicated that the criteria did not describe their facility, or only in a limited fashion. Additionally, this group reported that leadership interest in this category ranged between “somewhat, not very, or not at all” interested in adopting culture change practices (Doty et al., 2008). Although many facilities are currently in the early stages of adopting culture change practices, the progress is ultimately slow (Doty et al., 2008). Many facilities are reporting success in changing practices that allow for greater resident decision making in their daily activities, changes in dining programs and bathing routines; however, few facilities are currently making changes in the physical environment and supporting changes in the traditional staff hierarchy. Why many facilities are still lagging behind is still not fully known. Facilities that have implemented advanced changes are experiencing a myriad of positive results, including greater staff retention and reduced turnover, greater resident and family satisfaction, and increased community occupancy/marketability—all of which translates into improved operating costs and margins (Bond & Fiedler, 1999; Yeatts & Cready, 2007). As the benefits, both internally and financially, become more prominent, it is expected that more nursing homes will begin to embrace the culture change ideology—if only to remain competitive in a swiftly changing consumer landscape.

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Emerging Models and Leaders Prior to the Pioneer Network’s first meeting in 1997, a Harvard-trained physician and geriatrician by the name of Dr. William Thomas developed a philosophy and set of principles1 that strove to address what he felt were the three plagues nursing home residents experienced: loneliness, helplessness, and boredom. Called the Eden alternative, Dr. Thomas’ philosophy would later transform into a formal national and international network of trained providers. The Eden Alternative sought to address these concerns through the creative introduction of animals, plants, gardens, and children into the everyday lives of residents in nursing homes. Additionally, fundamental changes in staff–resident interactions were also addressed, including shifting decision making toward the resident, family, and frontline staff. Present in the philosophy are linguistic changes in the organizational structure, including residents being referred to as elders and CNAs being renamed care partners. The purpose in changing the language was understood by Thomas as being critical in changing how residents and staff think and behave in a nursing home in “that it provides a new way of thinking and new values that become the foundation for dramatic and sustainable transformation of the organization and the people who come in contact with the organization” (The Eden Alternative, 2009). Very much a precursor to the culture change movement, Thomas’s ideas soon began to spread across the industry, with facilities actively Edenizing their communities (Kane, Lum, Cutler, Degenholtz, & Yu, 2007; Thomas, 1999; “William H. Thomas,” n.d.) Although the Eden Alternative continues to be a popular method in the culture change movement, criticisms about the philosophy and its implementation ­exist. Initial results from the few studies of the model showed limited results in addressing the systemic issues found in traditional nursing homes (Kane et al., 2007). Adding plants and animals, bringing in children, and changing titles did not appear to fully implement sustained changes in the organizational culture itself. Rather, more substantial changes need to occur to alter the long-established medical model of care both in philosophy and in physical design. In response to the critiques, Thomas embarked on what is perhaps the most radical redesign of the nursing home in the last century. Known as Green Houses®, the traditional, medical, and intuitional model of nursing homes are replaced with households that accommodate a small number of residents, generally 9 to 12 people.

1  Dr.

Thomas’ philosophy and set of principles are as follows: 1. The three plagues of loneliness, helplessness, and boredom account for the bulk of suffering among our elders. 2. An older adult–centered community commits to creating a human habitat where life revolves around close and continuing contact with plants, animals, and children. It is these relationships that provide the young and old alike with a pathway to a life worth living. 3. Loving companionship is the antidote to loneliness. Elders deserve easy access to human and animal companionship. 4. An older adult–centered community creates opportunity to give as well as receive care. This is the antidote to helplessness. 5. An older adult–centered community imbues daily life with variety and spontaneity by creating an environment in which unexpected and unpredictable interactions and happenings can take place. This is the antidote to boredom. 6. Meaningless activity corrodes the human spirit. The opportunity to do things that we find meaningful is essential to human health. 7. Medical treatment should be the servant of genuine human caring, never its master. 8. An elder-centered community honors its elders by de-emphasizing top-down bureaucratic authority, seeking instead to place the maximum possible decision-making authority into the hands of the elders or into the hands of those closest to them. 9. Creating an older adult–centered community is a never-ending process. Human growth must never be separated from human life. 10. Wise leadership is the lifeblood of any struggle against the three plagues. For it, there can be no substitute.

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The first Green Houses were built in Tupelo, Mississippi, in 2003 on a multilevel campus, which included independent, assisted, low-income, and a 140-bed nursing home (Lum et al., 2008–2009). Residents are afforded their own private rooms with a private bathroom that circle a main residence area where a standard kitchen and living room are located. The institutional presence of nursing stations and medical equipment, such as resident lifts, is eliminated. The house resembles an actual house. A front porch and standard house door marks the entrance. To enter, visitors and staff must ring the doorbell and await access from those residing or working inside. Additionally, a backyard is accessible at any time by residents and staff, with substantial visual range to monitor anyone outside from the main living area. Residents who do require mechanical devices to transfer or move from room to room are able to be moved through a track and Hoyer system installed into the ceiling—thereby eliminating bulky and institutional floor model Hoyer lifts. Most notable in the Green House model is the alteration in how required clinical staff’s roles are designed. In building on the Eden Alternative’s philosophy and linguistic importance, frontline caregivers or CNAs are referred to as Shahbaz. Unlike traditional nursing home CNAs, the Shahbaz are universally trained workers who not only provide physical assistance for residents, but also take on the other household duties of cooking, cleaning, and daily activities. Multiple Shahbazim work in a single household and are self-directed in their duties, often sharing joint responsibility of the daily tasks at hand. Their expanded roles allow for a more natural interaction and relationships as they mimic the daily care one might receive by family or paid assistance in one’s own home. Also present are guides whose role is similar to that of a unit manager or administrator in a traditional nursing home. Guides are responsible for providing support, education, and resources to the Shahbaz, and to oversee the operations of the household, focusing on quality of services. Guides may be responsible for one or multiple households. Each household also has an assigned sage who is an older adult, as well as a local community volunteer. The sage’s role is to provide mentorship, advice, and support to the Shahbaz and residents. The required clinical staff (nurses, social workers, dietitians, etc.) operate in the form of support teams, which visit households as needed, but do not control or mandate daily operations as found in traditional nursing homes. Members of the support team are accessible via pager and phone in cases of emergency (The Green House Project, 2011). Research into the long-term effects on QOL for residents and families, as well as the effects felt by staff working in Green Houses is starting to be published and evaluated, though more is still needed. One such longitudinal study was published in the Journal of the American Geriatrics Society in 2007. The researchers sought to evaluate the outcomes of residents living in the first Green Houses after having been transferred from a traditional nursing home setting. They hypothesized that QOL and satisfaction of the transferred residents would be greater than that of residents who resided in traditional facilities. Using a quasiexperimental design, the researchers compared three groups of residents: 39 who had been relocated or moved into the first Green House, 64 residents from Cedars Nursing Home (the same 140-bed facility that was located on the campus of the Green House) and 66 residents from a third facility, Trinity, that was located approximately 90 miles away. During a process of resident and/or proxy interviews, the researchers evaluated 11 domains of QOL.2 Although some limitations were noted in the researchers’ design (including 2  The

Eleven “Domains” of QOL: comfort, functional competence, privacy, dignity, meaningful activity, relationship, autonomy, food enjoyment, spiritual well-being, security, and individuality.

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the Cedars campus sharing the same leadership, being located on the same campus as the Green Houses, having residents with varying degrees of dementia being surveyed, and the influence of the Hawthorn effect on caregivers) residents in the Green Houses reported significantly higher levels of QOL than residents residing in either of the traditional nursing homes (Kane et al., 2007). A similar study was also conducted by the same research team using the same facilities in measuring family satisfaction. Similar results emerged with families experiencing higher satisfaction with their loved one’s care in the Green Houses as opposed to the traditional facilities (Lum et al., 2008–2009). Research into the impacts of changing the traditional hierarchy as experienced by staff that works in culture change facilities is also limited. In one of the few studies published, researchers found facilities that have embraced changes, including having frontline CNAs take a more “empowered” and autonomous role in the daily operations and caregiver/resident-directed decision-making process, ultimately experienced better performance, improved resident autonomy, improved operations, better working relationship with nurses, and reduced turnover in staff (Yeatts & Cready, 2007). The Green House model appears to be a very promising model of care. Since the inception and building of the first Green Houses in 2004, more providers are replicating and building similar homes across the country. Currently, 26 states report having Green Houses with 79 households operating in 14 states. Another 132 Green Houses are currently being built or are in the planning stages (LaPorte, 2010). Many of the interested providers tend to be nonprofit businesses, though the forprofit side of the industry is beginning to take notice and move toward developing smaller households as well. A recent article published in the Provider, an LTC industry–focused magazine, reported that providers are starting to recognize that the traditional nursing home infrastructure is antiquated and will not meet consumer demands in the future. However, the financing of building smaller homes tends to be more expensive than the traditional design—two or more million dollars per household. Costs can also be significantly more depending on the location such as an urban versus rural setting, the state, and so forth. (Collis, 2010; LaPorte, 2010). In urban areas, the ability to have households located on sprawling campuses is limited. Instead, designers are creating new models wherein households are being built in multilevel facilities (Collis, 2010). Another established model of culture change is called the Wellspring model. Unlike the Eden Alternative and the Green House model, Wellspring seeks to change social and organizational behavior while improving quality of care of residents, and to alter the traditional methods of how staff interact (Stone, Reinhard, & Bowers, 2002). Founded in 1994, the Wellspring model was the result of 11 freestanding nursing homes in Wisconsin that were not affiliated financially or organizationally. Realizing that similar concerns regarding quality of clinical outcomes were being experienced at each facility, the group of providers developed an educational and resource sharing Alliance. The Alliance agreed to share staff training programs, outcomes measures, as well as mutually hired a geriatric nurse practitioner to assist with developing in-house best practice programs and peer training modules that could be replicated in each facility. Each individual facility has a dedicated wellness coordinator whose job is to attend all training models with varying frontline staff, then return to his or her facility and train the in-house staff, primarily the frontline CNA and nursing staff. Unique to this model is the direct incorporation of clinical best practices coupled with culture change ideology in that frontline staff are

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encouraged to take more active roles in developing policy and procedures while sharing knowledge with their coworkers. Additionally, this model is far more community orientated in that it seeks to breakdown the traditional practice of freestanding nursing homes’ competition through the agreement of sharing resources and data (Stone et al., 2002). A study commissioned by the Commonwealth Fund completed an extensive investigation into the shared outcomes that participating nursing homes in the ­Alliance experienced. Compared to facilities not in the Alliance, Wellspring nursing homes reported improved state survey results, reduced staff turnover, and reduced operating costs, better interactions among staff, and higher QOL for residents. Interestingly, improved clinical outcomes could not be empirically proved though the only measurement tool used was the required MDS (Stone et al., 2002).

BARRIERS, CHALLENGES, AND LIMITATIONS Although there is no doubt that culture change is having positive impacts in the nursing home industry, challenges and questions remain as to how this paradigm shift will be reconciled in a highly regulated, swiftly changing environment across the country’s tens of thousands of nursing homes. Currently, providers are still struggling with questions surrounding regulatory interpretations, a lack of solidified and universal culture change “best practices” (Rahman & Schnelle, 2008), how to empirically evaluate those practices, and how culture change will work among varying resident populations. From a regulatory standpoint, the Nursing Home Reform Act, officially part of the Omnibus Reconciliation Act (OBRA) provided nursing homes with one of the largest set of regulation requirements written. In fact, nursing homes, as a result of the 1987 Act, became the second most regulated industry in the country—preceded only by nuclear power plants (Allen, 2008). Issued in response to many of the concerns consumers experienced in nursing homes, the regulations are highly specific in some areas and highly interpretative in others. States are given the responsibility of evaluating nursing home compliance and to interpret regulations, though guidelines for interpretation are recommended by Center for Medicare & Medicaid Services (CMS). As culture change ideology and practices started to become more prominent, questions regarding how certain practices could be implemented under the current regulations began to surface. OBRA Regulation 483.25, Quality of Care states “Each Resident must receive and the facility must provide the necessary care and services to attain or maintain the highest practicable physical, mental and psychosocial well-being in accordance with the comprehensive assessment and care plan.” This regulation is often cited as the preeminent statute that supports culture change ideology. However, although the statute reflects an overarching goal or mandate, providers in the process of initiating culture change practices have struggled with its interpretation, especially when compared to other more specific regulations. As an example, early providers who embarked on the removal of nursing stations found themselves constrained by regulatory requirements. In California, Regulation s72325 requires that, “(b) A nursing station shall be maintained in each nursing unit or building and (c) Each nursing station shall have a cabinet, a desk, space for records, a bulletin board, a telephone and a specifically designated

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and well illuminated medication storage compartment with a lockable door.” For those seeking to provide a more homelike atmosphere, early pioneers struggled with both state and federal language, which on the one hand encouraged innovations to provide residents with the most natural environment possible but limited their ability to do so because of the ambiguity of the language in which the laws were written. As the culture change movement and its ideas began to reach state and federal lawmakers, the CMS agreed to participate with interested providers in addressing concerns with the regulatory language. In 2008, CMS partnered with the Pioneer Network “to promote discussion, dispel barriers and coordinate action that supports culture change in nursing home environments” (The Pioneer Network, 2011). The symposium held was meant to stimulate discussion and address the confusion surrounding the nursing home provider’s ability to enact culture change practices. What later came of this groundbreaking symposium was a new alliance between federal/state regulatory agencies and providers. CMS began issuing interpretative guidelines surrounding federal and state regulations for surveyors and providers to help clarify their position and answer specific questions regarding facility culture change practices. Additionally, CMS released “The Artifacts of Culture Change Tool” to assist those interested with establishing culture change practices in their communities. Conceived in 2001 by Karen Schoeneman and Mary Pratt (both CMS employees) and published in 2006, the artifact tool sought to measure QOL issues that had no quantifiable base at the time. Taking an anthropological/sociological approach, the tool was based on the premises that “any culture is comprised of beliefs and values, basic underlying assumptions, and behaviors and artifacts. In any culture, artifacts are the physical evidences that can be readily seen by an observer” (Schoeneman, 2006). The tool evaluated major social and physical changes, including dining services, physical environments, family involvement and leadership practices. Although the tool itself is currently still one of the most prominent resources available, the authors acknowledged that its measurements remain nonvalidated and not empirically tested (Schoeneman, 2006). Highlighting the Artifacts of Culture Change Tool’s lack of empirically tested measurements leads to another challenge in culture change ideology. Because it is such a young movement, the empirical basis for many of the proposed changes has yet to be fully studied or researched (Rahman & Schnelle, 2008). For some, the need for scientific support in proving the benefits of embracing culture change is a moot point in that the movement is humanistic and natural in nature and the traditional nursing home model is a perversion of what normal aging truly is. Culture change, therefore, is seen as returning residents to a state that is as close possible to normal, everyday life. Furthermore, the movement, in many respects, has received unprecedented attention in the last few years, with stories of successes and improvements in resident’s QOL permeating the industry. These stories serve as proof to many that culture change practices are valid and, therefore, the need for empirical evaluation is unwarranted (Rahman & Schnelle, 2008). Rahman and Schnelle (2008, p. 146) commented that Perhaps because [culture change] has escaped critical peer review . . . interventions are often advocated with little mention of the mostly untested premises. Nursing Homes that unwittingly implement innovations whose outcomes are largely unproven may wind up wasting time and money on strategies that fail to produce positive results.

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Further complicating the lack of empirical evidence, culture change practices are largely facility individualized and unique. Although some practices are able to be replicated easily in multiple settings, lack of how those changes will impact a facility-specific population is currently not able to be critically evaluated as there are very limited tools to measure true outcomes. Indeed, there are even very limited resources available in assisting nursing homes with implementing culture change practices—though more tools are starting to be published, such as the Pioneer Networks’ “Getting Started Guide.” Without unbiased and validated assessment tools, facilities may run the risk of making changes that do little to advance personcentered care. Without concise benchmarks and detailed definitions as to how best practice should operate, facilities may attempt to enact changes that appeal to the consumer superficially (such as updating the physical environment) solely for the benefits of marketability. In short, facilities may attempt to capitalize on a “Culture Change Product” without truly adopting the underlining principals of systemic operational change. Another complication is that culture change has also yet to fully understand how its ideology will work among varying demographics. A fundamental assumption in the culture change ideology is that residents are to be given autonomy over their daily lives and that the staff’s roll is to support and supplement those residents in their decision making. However, for residents who may suffer from mental health issues or advancing dementia, the lines of person-directed care and medically necessary care become grayer. Much of the literature currently does not address populations who cannot make daily decisions due to mental impairments or degradation due to advanced disease states—or only does so sparingly. As a result, a simple question arises: How do those with mental issues, such as advanced dementia, actively participate in person-directed care when their impairments prohibit them from making decisions (or sound ones)? One of the only articles written to address this issue was authored by Ladislav Volicer, MD, and published in 2008. In it, Volicer comments that residents with cognitive deficits “may not benefit from some improvements and may be actually excluded from culture change activities” (p. 459). Although some changes, such as a less institutional dining experience or a homelike decorated environment would be hard pressed to be viewed as unappreciated practices benefiting those with cognitive issues, more complicated issues such as participating in mutually developing care plans, or even when bathing should occur, become far more complex. Indeed, there may be some residents of nursing homes whose disease paths have advanced so severely that even the most established culture change facilities would, by professional and ethical necessity, have to address the needs of certain residents predominantly through clinical- and medical-based practices. Although it is not to imply that any or all residents with a cognitive deficit could not or should not be offered choices in their daily care, this particular population serves to highlight areas in the emerging culture change movement that remains to be fully addressed within the complex demographics that nursing homes serve. Another vastly unexplored demographic not addressed are individuals who admit to nursing facilities for a short-term stay. Such individuals usually enter a nursing home following an acute hospitalization and require temporary nursing and rehabilitation—generally for 30 days or less. Over 2.5 million individuals use nursing homes in this manner, and that number is expected to grow substantially. This particular demographic tends to be much younger than their long-term counterparts. Approximately 68% of LTC residents are older than 80 years, compared to only 45% in the short-term group. Individuals may be as much as 20 to 30 years

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younger, and in many cases have higher physical and mental functioning abilities. These individuals are often referred to by nursing homes as patients as opposed to residents, indicating a vastly different classification and set of goals regarding care expectations (My InnerView, 2008). Nursing homes have been aggressively developing their short-term services over the last several years mainly due to financial incentives. Short-term patient’s care, on average, generate two to three times the reimbursement rate that custodial residents produce (Connole, 2010). Over the last decade, competition from the assisted living and home health care segments of the industry have rapidly encroached into the territory of LTC services thereby reducing the number of residents who traditionally would have sought care in a nursing home setting. On the other side of the continuum, hospitals largely influenced by the insurance industry and Medicare reimbursement, have significant incentives to move patients into the lower levels of care to curb spending and maximize profits. As a result, a sort of symbiotic and financial relationship has developed between hospitals and nursing homes that are transforming nursing home facilities into postacute centers that cater to a very different population than had been traditionally cared for before. Patients goal of care also vary significantly from their resident counterparts in that their main focus is predominately medical and physical rehabilitation. In a national survey, short-term patients indicated that their main concerns with services provided in nursing homes included the competency of the staff, the facility’s ability to meet their needs and preferences, the quality of skilled therapies (physical, occupational and speech therapies) and respectfulness and quality of the clinical nursing services (My Interview, 2008). A patient’s focus varies from that of resident’s in that their mind set and goals are not necessarily long-term QOL issues, but recovery and quality medical care. In comparison to the ideology of culture change, short-term patients are actively seeking a medically responsible environment—in fact, as a consumer group, they are demanding quality medical, clinical, and rehabilitative services. For a movement that seeks to de-emphasize the traditional medical model of care, it is currently unknown how this rapidly growing segment of the nursing home industry will merge with culture change ideology and practices. Although some culture change practices, such as having autonomy over daily care, participating in care plan development and improved accommodations (such as private rooms), will most likely benefit short-term patients as well as long-term custodial residents, other changes are not known. In fact, currently there is no research and only scant mention anecdotally with regard to how this demographic will respond to culture change practices, which emphasize the notion of homelike care as opposed to medical care.

Implications for Social Policy and Reform In the last few years, public interest regarding health care reform has taken a larger and more prominent place in the country’s consciousness. Perhaps fueled by the current economic recession, much debate has taken place surrounding how this country will address the LTC needs of its rapidly growing aging population. It is expected that by 2050, 21 million seniors will be 85 years or older and approximately 20% will require some form of LTC (Glickman, 2009). Not surprisingly, the current focus has centered on the financial costs associated in providing care.

356  III.  TRENDS IN LONG-TERM CARE

Currently, the average private pay rate of a single room in a nursing home is approximately $75,000/year (Glickman, 2009). Medicaid, the country’s largest payer source of nursing home care, spends close to $230 billion annually, or roughly 2.9% of the country’s gross domestic product (GDP). This figure is expected to reach 6.5% in 2045 (Glickman, 2009). When combined with Medicare, the cost of funding these two programs will consume nearly two thirds of projected federal revenues by 2050 (Glickman, 2009). State and federal lawmakers have only recently begun to explore varying options in providing LTC services, including the expansion of community-based services, Medicaid wavers for lower levels of care (such as assisted living care), and the possible creation of a nationally funded, voluntary LTC policy, such as the CLASS Act. Although trends indicate that individuals would prefer to remain at home or in a community-based setting, the need for quality nursing home care is expected to grow exponentially over the next several decades. Although funding may appear to be a separate issue, lawmakers have the opportunity to include a vision for the future of nursing home care as a part of the overall debate surrounding health care reform. Indeed, as the debate continues regarding nursing home reimbursement, the option to financially motivate facilities to improve the QOL of those expected to use long-term services could prove to be the missing catalyst the industry requires to advance culture change practices. As the country’s largest financial payer source of nursing home care, CMS stands in a unique position to mandate culture change practices as a part of nursing home reimbursement structure. In fact, doing so may also prove to be a cost-saving measure. As indicated prior, nursing home adopters have reported financially advantageous benefits in implementing practices, including reduced staff turnover, reduction of negative patient outcomes, and a more stable census. When combined, the financial savings gained by implementing culture change practices may prove to reduce a facility’s overall operating cost, thereby reducing overall necessary state and federal reimbursement rates. To implement such changes, the need for lawmakers and providers to identify best practices should be addressed. Funding for additional research and the development of validated measures should be made available and possibly contributed to in part at the state and federal level. As validated consensus emerges, CMS as well as state surveyors through the Department of Health should be educated and held accountable in evaluating proper practices.

SUMMARY Perhaps the reason culture change is such a difficult process to undertake is simply because it is a concept that varies at the facility level. Each nursing home has its own culture, its own unique staff, its own individual resident population, its own policies and procedures—all of which ultimately create a unique, facility-specific identity. Enacting culture change practices is not a black or white determination. Currently, there is no guaranteed formula or blueprint that will ensure positive changes in any specific community. Although suggestions and stories of other facilities’ practices may be celebrated, it is not as simple as adopting or copying another’s processes. Each community must go through a continuous trial-and-error approach to determine how varying culture change practices can thrive within their own community. As the resident population and the staff change, this process must be reevaluated

18. NURSING HOME CULTURE CHANGE  357

and reinvented to meet the needs of the current population being served. For an industry that has historically clung to a systemic approach in providing care, this type of paradigm shift is often confusing, vague, and frustrating. Support from state and federal levels also will need to play a key role in the future of advancing culture change practices. Historically, health care in this country has been viewed as a commodity rather than a human right. As a result, the industry has assumed a consumer/capitalistic approach in addressing quality of services, despite the government’s best attempts to address care and outcomes through medically based regulation. Although some facilities are pioneering new ideas and approaches to quality-of-care issues, the fact remains that LTC is predominantly a social welfare issue—both in the majority of its financing and in the population it serves. Frail elders, unlike other consumer groups, often do not have the social influence or financial ability to truly effect meaningful change nor make demands in the improvement in the products they use. This is not to imply an ageist bias toward this demographic, rather it serves to highlight the vulnerability of those who require nursing home care. As such, improvements in the industry cannot be left solely to the providers or through a traditional consumer approach. Residents, patients, and families are often severely limited in their ability to make an informed choice regarding nursing home care and services due to the stressful circumstances surrounding placement, including, but not limited to, finances, insurance coverage, and proximity. Improvements in QOL also cannot be fully addressed through simply managing the physical/medical needs of individuals and using those measures as the sole determinant of genuine, quality care. As such, lawmakers and the public will need to continue the discussion together to develop a unified vision for the future of culture change practices in the nursing home industry—and all the elders that it serves.

REFERENCES Allen, J. (2008). Nursing home administration. In J. Allen (Ed.), Nursing home administration (5th ed., pp. 612–620). New York, NY: Springer Publishing Company. Bond, G., & Fiedler, F. (1999). A comparison of leadership vs. renovation in changing staff values. Nursing Economics, 17(1), 37–43. Collis, R. L. (2010, May 3). Green house homes grow up. Provider, 1–3. Connole, P. (2010, July). Going home, A new reality. Provider, 36(7), 22–31. Doty, M., Koren, M. J., & Sturla, E. (2008). Culture change in nursing homes: How far have we come? Findings from the commonwealth funds 2007 National Survey of Nursing Homes. New York, NY: The Commonwealth Fund. The Eden Alternative. (2009). Eden alternative. Retrieved from http://www.edenalt.org Glickman, H. (2009, June 15). The future of long-term care: What is its place In the health reform debate? Retrieved from http://www.urban.org/publications/411908.html The Green House Project. (2011). The green house project. Retrieved from The Green House Project: http://www.thegreenhouseproject.org/home Jurkowski, E. T. (2013). Implementing culture change in long-term care: Benchmarks and strategies for management and practice. New York, NY: Springer Publishing Company. Kane, R. A., Lum, T. Y., Cutler, L. J., Degenholtz, H. B., & Yu, T. C. (2007). Resident outcomes in small-house nursing homes: A longitudinal evaluation of the initial Green House Program. Journal of the American Geriatrics Society, 55(6), 832–839. LaPorte, M. (2010). Culture change goes mainstreem. Provider, 36(5), 23–33.

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Lemle, S., & Moss, R. (1986). Quality of residential settings for elderly adults. Journal of Gerontology, 41, 268–276. Lum, T., Kane, R., Cutler, L., & Yu, T.-C. (2008–2009). Effects of green house nursing homes on residents families. Health Care Financing Review, 30(2), 35–51. Manule, E., & Price, T. (2009). Nursing home care in the USA. Japan Geriatrics Society, 9(1), 1–6. Misiorski, S. (2003, October). Pioneering culture change. Nursing Home Magazine, 29, 25–31. My InnerView. (2008, May). The changing landscape from long term care to short-term stay. Provider, 1–3. The Pioneer Network. (2011). Pioneer Network: About us. Retrieved from www.pioneernetwork .net/policy/federal/ Ragsdale, V., & McDougall, G. (2008). The changing face of long-term care: Looking at the past decade. Issues in Mental Health Nursing, 29, 992–1001. Rahman, A. N., & Schnelle, J. F. (2008, April). The nursing home culture—Change movement: Recent past, present, and future directions for research. The Gerontologist, 48(2), 142–148. Schoeneman, K. (2006, April 21). Artifacts of culture change. Retrieved from http://www.artifactsofculturechange.org/Data/Documents/artifacts.pdf Stone, R., Reinhard, S., & Bowers, B. (2002). Evaluation of the wellspring model for improving nursing home quality. New York, NY: The Commonwealth Fund. Teresi, J., Abrams, R., Holmes, D., Ramirez, M., & Eimicke, J. (2001). Prevalence of depression and depression recognition in nursing homes. Social Psychiatry and Psychiatric Epidemiology, 36(12), 613–620. Thomas, W. H. (1999). The Eden alternative handbook. The art of building human habitats. Sherburne, NY: Summer Hill Company. Volicer, L. (2008). Culture change for residents with dementia. JAMDA. 9(7), 459. William H. Thomas (Physician). (n.d.). In Wikipedia. Retrieved from http://en.wikipedia.org/ wiki/William_H._Thomas_(physician) Yeatts, D., & Cready, C. (2007). Consequences of empowerd CNA teams in nursing home settings: A longitudinal assessment. The Gerontologist, 47, 323–339.

Index

abdominal obesity, 134 accountability to standards of care, systems of, 231 ACP. See advance care planning activities of daily living (ADL), 3, 61, 149 acute hospital vs. nursing home, 168–169 AD. See Alzheimer’s disease ADAD. See Autosomal Dominant AD ADHC. See adult day health care administration and management facility size and ownership considerations, 81–82 human resources, 82–83 market forces, 82 resident service management, 83–84 admission and retention, 77 ADR. See alternative dispute resolution adult day care programs, 243 adult day centers (ADCs), 30–33 adult day health care (ADHC) program, 272 services, 273–274 Adult Protective Services (APS), 17, 151 elder abuse, 18, 21 advance care planning (ACP), 286–287 advance directives, 136 advertising, 198 age-related changes of physiological systems cardiovascular system, 128 endocrine system, 132 gastrointestinal system, 129 genitourinary system reproductive changes, 130 urinary changes, 129

immune system, 132 integumentary system hair, 130 skin, 130 musculoskeletal system, 130 nervous system cognition, 131 delirium, 131–132 dementia, 131 depression, 132 respiratory system, 128 sensory system, 133 aging, 145–146, 263, 343 in America, 54 population delivering health care to, 139–140 economics, health care, and aging, 127–128 geography and aging, 127 race and aging, 127 sex and aging, 126 society, 126 aging-in-place, 62–65 aging-related health services research, 140–141 alternative dispute resolution (ADR), 225 Alzheimer’s Association (AA) services, 273 Alzheimer’s disease (AD), 149, 261, 263 alternative treatments, 270 and community resources, 273–274 financial and legal considerations, 271 geriatric assessment of, 265–266 interventions for, 269–270 medical and mental screening tests, 266–267 public policy, regulations, and, 271–273 research for, 267–269

359

360  Index

Alzheimer’s disease (AD) (cont.)

senescence, 262 biological clock and longevity, 262–263 dementia, 263 stages of, 263–265 American Association of Retired Persons (AARP), 23 American Geriatrics Society, 328 American Marketing Association, 186 amyotrophic lateral sclerosis (ALS), 10 APOE-e4 genes, 267–268 arbitration process, 225–226 Archives of Neurology, 268 Arizona’s LTC system (ALTCS), 217 assisted living challenges for, 174 community, 295 facilities, 243, 274 philosophy of care, 72–73 workgroup, 71–72 assisted living model administration and management, 81 facility size and ownership considerations, 81–82 human resources, 82–83 market forces, 82 resident service management, 83–84 case study, 84–87 characteristics of, 75 clients served, 73–75 description, 69–70 financing private pay, 79–80 public financing, 80 policy, licensing, and regulations, 75–79 of services, privacy, and operational philosophy assisted living philosophy of care, 72–73 provider’s perspective, 73 workgroup and the center for excellence in, 71–72 services provided in licensed housing, 73 assistive technologies, 270 atherosclerosis, 135 Autosomal Dominant AD (ADAD), 268 baby boomers, 199–200 Beacon Hill Village, 57 bed alarms, 307–308 behavioral monitoring, RPM, 309 person tracking, 309–310 rule-based, 310–312 vital sign monitoring, 312–313 beta-amyloids, 268 bilevel positive airway pressure (BiPAP), 283

biological clock, 262–263 BiPAP. See bilevel positive airway pressure board-certified chaplain, 289–290 Bond, Gale, 347 Brief Interview for Mental Status (BIMS), 330 budgeting, resident participation in, 101 CAL designation. See Compassionate Allowance designation call systems, 303–304 campus effect, 101–102 cancer, 135, 284–285 caregivers, 5, 291–294, 311 physical strains, 5–6 primary and secondary caregivers, 4 Carematix, 313 CARE system, 309–310 care transitions case study, 331–332 LTC to hospitals, 328, 329 transitions, 333–336 quality-of-care issues delirium and dementia, 329–330 pain management, 330 transitional care, 331 RSS/transfer trauma, 332–333 CaringBridge.org, 316 caring community build (CCB), 15 CAST Clearinghouse, 323 CCRCs. See continuing care retirement communities Center for Excellence in Assisted Living, 71–72 Center for Technology and Aging, 322 certification of palliative care programs, 280–281 certified nursing assistants (CNAs), 8, 110, 346 CHF. See congestive heart failure chronic care, 142 chronic disease management case study, 138 of common challenges, 137 of common illness, 136–137 chronic illness trajectory archetypes, 281–283 cancer, 284–285 chronic obstructive pulmonary disease (COPD), 283–284 congestive heart failure (CHF), 284 dementia, 285–286 palliative care management, 286–288 chronic obstructive pulmonary disease (COPD), 283–284 chronic psychosis, history of, 266 cognitive impairment, 137, 149 Commission for Case Management Certification (CCMC), 34

Index  361

Commonwealth Fund, 348 Community-Based Care Transitions Program, The, 328 community-based programs and services accreditation, 42–44 ADCs and ADHCs clients served, 32–33 historical development, 30 ownership, 31 primary role of, 31 administrators, 49–50 care management clients served, 35–36 historical development, 33 ownership, 33–35 services provided, 35 certification, 42–44 financing of, 44 housing with services clients served, 41 historical development, 39, 40 ownership, 39, 40 services provided, 41 licensing, 42–44 PACE clients served, 37 historical development, 36 ownership, 36–37 services provided, 37–39 regulations, 42–44 senior centers clients served, 29–30 direct personal care and health care, 29 historical development, 28 ownership, 28 Community First Choice State Plan Option, 217–218 community-living assistance services and supports (CLASS) program, 218 community perspective/subpopulation selection, 246–248 comorbidities, 142, 288 Compassionate Allowance (CAL) designation, 272 comprehensive admission assessment, 281 concomitant depressive symptoms, 266 Confusion Assessment Method (CAM), 330 congestive heart failure (CHF), 284 continuing care retirement communities (CCRCs) accreditation, 94 contract type, 96–97 description, 92 financial model pricing, 95

primary sources of revenue, 94 and profit, 95–96 third-party revenue for care services, 94–95 historical development, 92 model, 189 operations, 97 building an operating team, 98 management practices, 98 management “stress points,” 100–101 management variations, 98 managing expectations, 99 resident satisfaction, 99 oversight and regulation, 93 ownership, 92–93 residents, state protections for, 93–94 continuum of care, 243 COPD. See chronic obstructive pulmonary disease cultural competence, 291, 292 cultural diversity, 242 cultural humility, 291 culturally sensitive care, 291–293 culture change, SNF barriers, challenges, and limitations, 352–355 culture change movement Commonwealth Fund, grant from, 348 decision making authority, 345 headquarters of, 345 social structure of, 345–348 personal choice care, 346 person-centered care, concept of, 344–345 physical changes, 346–347 physical factors, 345 Pioneer Network, The, 345–346, 348–349 writing care plan, 346 discomforts in, 342 emerging models and leaders, 349–352 quality of care and environment, 342 social policy and reform, implications for, 355–356 culture diversity of participants in long-term eldercare, 252 custodial care, 271 customer psychographics, 188–189 customer-satisfaction surveys, 192 customer service programs, 194 Dakim Brain Fitness system, 314 defense strategies in legal claim, 230 delirium, 131–132, 329–330 dementia, 78, 131, 149, 263, 285–286, 329–330 depression abused elders, 149–150 nursing home residents, 342

362  Index

diabetes, 135 diagnostic capacity, 288 DIAN. See Dominantly Inherited Alzheimer’s Network diet, 134, 252–253 director of nursing (DON), 165, 343 direct staff requirements, 77–78 disease prevention, 135 diversity business plan and management model, 254–256 categorized by different contexts, 244–245 definition of, 241–242 operational, 248 participant and parametric. See participant and parametric diversity in long-term eldercare population-based community perspective/subpopulation selection, 246–248 numbers problem, 245–246 summative view of, 240 domestic elder abuse, 146 Dominantly Inherited Alzheimer’s Network (DIAN), 268 DON. See director of nursing Durable Power of Attorney for Property (DPA), 158–159 ECRs. See electronic care record systems education diversity of participants in long-term eldercare, 253 EHRs. See electronic health records systems elder abuse Adult Protective Services (APS), 18–22 case studies DPA, case misuse of, 158–159 senior government benefits scam, 157–158 theft by undue influence, 159–160 undue influence and elder financial abuse, 156 definition, 16–17, 146 effect of, 150 federal systems, 22–23 identification and reporting APS, role of, 151 LTC Ombudsman, role of, 151–152 incidence of, 17 local systems, 23–24 LTC, prevention in advocate for residents, 155 care plan meetings, 154 Congressional Special Investigations Division, 155–156 monitor care, 154–155

quality-of-care issues, 156 residential care facility, 152 staff, know and build good relationships, 153 visiting strategies, 153 major risk factors age, 148 cognitive impairment/dementia, 149 gender, 149 health and functional impairment, 149 mental health conditions, 149–150 social support, resources, and living conditions, 150 recognizing signs of behavioral indicators, 148 physical abuse indicators, 146–147 relationship abuse indicators, 148 state systems, 17–18 types of, 146, 147 elder adaptation, 250–251 eldercare framework, 242–244 eldercare program, 246, 249, 250 elder home care, legal issues elder abuse. See elder abuse POA, 15 trusts, 16 Elder Justice Act (EJA), 23 electronic care record (ECR) systems, 312, 317, 318 electronic health records systems (EHRs), 317 elopement detection systems, 305 embedded senior based eldercare program, 248 empowerment model, 175–177 end-of-life (EOL) conversations, 293–294 enforcement-based diversity, 244 environmental diversity, 250 environmental extremes, 313 equity agreements, 97 ethnicity-based eldercare program, 247 ethnocentrism, 291 experiential diversity, 250 extensive (type A) contracts, 96 facilities-based call systems, 303 facility-based communities, 190 faith-based eldercare program, 248 fall alarms, 306–307 family caregiver alliance (FCA), 273 family or home based eldercare program, 248 FCA. See family caregiver alliance federal antikickback statutes, 196 Federal Arbitration Act, 226 Federal Nursing Home Reform Act, 106, 108 federal statutes, 78–79 fee-for-service (type C) contracts, 96–97 FEV1. See forced expiratory volume in one second

Index  363

financial considerations of AD, 271 forced expiratory volume in one second (FEV1), 283 formal home care benefits of, 6 disadvantages, 6–7 home health and nonmedical home care agencies, 9 providers, 7 workers, categories of, 7–9 formal relationships, 194 functional impairment, 149 “functional view” of human diversity, 240–241 GDS. See Global Deterioration Scale gender diversity of participants in long-term eldercare, 253 general service based eldercare program, 248 geography and aging, 127 geolocation tools, 306 geriatric care manager (GCM), 34 Global Deterioration Scale (GDS), 263–264 gray hair, 130 Great Depression, 189 Green House model, 349–351 grieving process, 294 HCBSs State Plan Option, 211–212 health and medical issues diversity of participants in long-term eldercare, 254 health based eldercare program, 248 Health Care Financing Administration (HCFA), 344 Health Insurance Portability and Accountability Act (HIPAA), 191 health promotion, 134 health-related quality-of-life (HRQOL), 282 heterogeneity, 242 Highland Valley elder services, 14–15 Hill-Burton Act, 343 home- and community-based services (HCBS), 11 home care cost of economic opportunity, 12, 14 home health care, 12, 13–14 nonmedical home care, 12 programs, 243 regulation, 11 home care agencies, 10–11 Home for the Aged, 106 home health aide (HHA), 8 home health care, 6 home health care services, 210 hospice, 289, 293

care, 7, 9 and palliative care program assisted living community, 295 market, 295 vision and program, 295–296 services, 296 hospital-based palliative care programs, 280 hospitals, 191–192 housing and services model, 76 HRQOL. See health-related quality-of-life human resources, 82–83 Hunters Point Multipurpose Senior Services, 247 IATs. See intelligent assistive technologies immigrant groups, generational differences, 252 inadequate training, effects of, 172–173 informal home care challenges of, 5–6 characteristics of, 5 role of, 4–5 Institute for Healthcare Improvement (IHI), 278 Institute of Medicine (IOM), 278, 330 Institute on Aging (IOA) Aging Services, 46–48 Senior Campus of, 45 institutional abuse, 146 institutional model, 76 institutional settings, wandering alarms in, 304–305 instrumental activities of daily living (IADLs), 3 insurance benefits, 79 intelligent assistive technologies (IATs), 302 Intermediate Care Facilities for People with Mental Retardation (ICFs/MR), 211 internal marketing, 196–197 Internet marketing and LTC, 199 Jewish Senior Living Group (JSLG), 247 job dissatisfaction, 169–172 KeystoneCare, Wyncote, PA, 319 language diversity of participants in long-term eldercare, 252 legal claims against LTC providers for adverse outcomes, 223 arbitration, 225–226 defense strategies, 230 elements of, 229 for falls with injury, 223–224 frequency of, 222–223 impact of, 226–227 plaintiff strategies, 229 terms and concepts, 227–228 wrongful death, 224

364  Index

licensed housing, services provided in, 73 licensed nurses (LNs), 164 licensed practical nurses (LPNs), 8, 164 licensed vocational nurses (LVNs), 8 LinkedIn, 316 litigation and/or arbitration, mitigating risks in anticipation acknowledging errors, 231–232 client-selection protocols, 233 communication with clients and their families, 231 within the provider care/service team, 232–233 consistent, experienced, and engaged managers, 230–231 LNs. See licensed nurses longevity, 262–263 long-term care (LTC) palliative care programs, 280–281 planning, 271 providers, legal claims against. See legal claims against LTC providers setting, 288, 294 technological tools in, 301–303 bed alarms, 307–308 call systems, 303–304 disruptiveness, 322 ECR systems, 318 EHR systems, 317–318 environmental extremes, 313 fall alarms, 306–307 geolocation tools, 306 nighttime activity alarms, 308 organizational case studies, 319–321 rehabilitation systems, 313–314 ROI, 321–322 RPM systems, 308–313 shopping for, 323 “smart” alarms, 304 social networking systems, 316 teleconferencing systems, 315–316 wandering alarms, 304–306 long-term services and supports (LTSS) cost and payments of, 205–206 demand for, 203 expenditures, 203 paid and unpaid, 204–205 policy developments health care reforms, PPACA, 217–218 Medicaid-managed LTSS, 217 state rebalancing efforts, 216–217 private financing, 206 private LTC insurance, 207–208 self-payment, 207 public financing, 208

Medicaid, 208–212 Medicare, 212 Older Americans Act, 213 other programs, 214–215 Social Services Block Grants, 213 magnetic resonance imaging (MRI), 266 marketing and census development, 185 advertising, 198 baby boomers, 199–200 community networks, 197 competitive analysis, 186–187 customer psychographics, 188–189 discharge planners, 191–192 employees and internal marketing, 196–197 families, 193–194 federal antikickback statutes, 196 Internet and social marketing platforms, 199 market segmentation, 187–188 physicians, 192–193 product position, 187–188 professional organizations, 197 radio/television, 198–199 sales and the salesperson, 189–190 social workers, 191–192 Stark laws, 194–195 vendors, 194–195 market segmentation, 187–188 Mayo Clinic stages of AD, 264–265 Medicaid, 76, 80, 186, 208–209 HCBS expansion and variability, 211–212 LTSS eligibility, 209–210 mandatory services, 210 optional services, 210–211 Medicaid Home and Community-Based Services State Plan Option, 218 Medicaid Home and Community-Based 1915(c) Waivers, 211 Medicaid managed long-term care (MMLTC), 217 medical malpractice “tort reform,” 226 medical model, 174 Medicare, 94, 186, 212 reimbursement system, 111–112 secondary insurance, 94 medication administration, 78 memory-specific facility, 274 mental health based eldercare program, 247–248 mental status examination (MSE), 266 mild cognitive impairment, 266 mindful caregivers, 296 Mini-Mental State Examination (MMSE), 266 Minimum Data Set (MDS), 108, 285 MMSE. See Mini-Mental State Examination modified (type B) contracts, 96

Index  365

Money Follows the Person (MFP), 218 monitoring processes of care, 281 MRI. See magnetic resonance imaging MSE. See mental status examination multidisciplinary teams (MDTs), 18 NAPA. See National Alzheimer’s Project Act narrative citizenship, 272 National Adult Protective Services Association (NAPSA), 151 National Alzheimer’s Project Act (NAPA), 272 National Alzheimer’s Project Plan (Public Law 111–375), 272 National Association for Home Care & Hospice (NAHC), 11 National Cancer Institute, 284 National Center on Elder Abuse (NCEA), 22 National Citizens Coalition for Nursing Home Reform (NCCNHR), 113 National Committee for the Prevention of Elder Abuse (NCPEA), 22 National Consensus Project (NCP), 278–279 National Consensus Project for Quality Palliative Care, 279 National Hospice and Palliative Care Association (2009), 221 National Hospice and Palliative Care Organization (NHPCO), 279 National Incidence Study on Elder Abuse, 148 National Institute of Senior Centers (NISC), 28 National Long-Term Care Ombudsman Resource Center (NORC), 151 National Palliative Care Research Center (NPCRC), 279 National Quality Forum (NQF), 116, 279, 280 National Sheriff’s Association (NSA), 23 naturally occurring retirement communities (NORC) concept, 54 definition, 53, 54 geographic distribution, 55, 59–61 healthy, 61 NORC-SSPs and villages, comparative analysis of, 58 Penn South Program for Seniors, 61–62 with SSPs, 55–57 village model, 57, 62 NCP. See National Consensus Project NHPCO. See National Hospice and Palliative Care Organization nighttime activity alarms, 308 Nintendo Wii–based games, 314 North American Nursing Diagnostic Association (NANDA), 333 NPCRC. See National Palliative Care Research Center

NQF. See National Quality Forum nurse staffing and quality, turnover rate effects, 164–165 nursing facility care, 210 nursing home vs. acute hospital, 168–169 Nursing Home Reform Act, 334 nursing home staff, resources and recognition for, 173–174 nursing retention issues acute hospital vs. nursing home, 168–169 challenges for assisted living, 174 effects of inadequate training, 172–173 job dissatisfaction and burnout, 169–172 morale, productivity, and retention, 175–177 nurse retention/recruitment focus, 167 nursing shortage and associated costs, 166–167 staffing and quality of care, 167–168 staffing requirements, 165–166 substandard care, 172 nursing shortage and associated costs, 166–167 obesity, 119 occupational therapist (OT), 8 older adults poor care transitions. See care transitions providing and financing health care services for, 140 quality of health care of, 138–139 Older Americans Act (OAA), 28, 54 public financing, 213 senate hearings on, 56 operating room (OR) staff, job satisfaction of, 171 operational diversity, 244, 248, 250 out-of-bed alarms, 307 over-the-counter medications, 270 PACE. See Program of All-Inclusive Care for the Elderly palliative care, 277–278 assisted living community, 295 certification of, 280–281 chronic illness trajectory archetypes. See chronic illness trajectory archetypes defining, 278–279 hospice services, 296 implementing programs in LTC settings, 294 management, 286–288 market, 295 psychosocial considerations, 289–294 recommended practices of, 279–280 services, 296 vision and program, 295–296

366  Index

participant and parametric diversity in longterm eldercare culture and language, 252 food and diet, 253 gender and sexuality, 253 health and medical issues, 254 race and ethnicity, 251–252 recreation/exercise, 253–254 self and life space, 249–250 social class and education, 253 spirituality and religiosity, 249 passively actuated alarms and call systems, 304 patient decision making, 142 Patient Protection and Affordable Care Act (PPACA), 110, 217 patients and families, guidelines for, 287 Penn South Program for Seniors, 61–62 PERS. See personal emergency response systems personal care assistant/attendant, 8 personal care services, 210–211 personal emergency response systems (PERS), 303 person-centered care, 269, 345 person tracking behavioral monitoring, 309–310 Perth-Kinross Council, 306 PET. See positron emission tomography physical dependence, 137 physical therapist (PT), 8 physicians, 192–193 Pioneer Network, The, 345–346, 348–349 plaintiff strategies in legal claim, 229 plan of correction (POC), 117 population-based diversity, 244 community perspective/subpopulation selection, 246–248 numbers problem, 245–246 positron emission tomography (PET), 266–267 PositScience Corporation, 314 postacute care centers, 118 power of attorney (POA), 15 PRECEDE model, 174 private residences call systems in, 303–304 wandering alarms in, 305–306 problematic behaviors, 304 product positioning, 187–188 professional organizations, 197 Program of All-Inclusive Care for the Elderly (PACE), 211, 247 clients served, 37 historical development, 36 ownership, 36–37 services provided, 37–39 prospective payment system (PPS), 111–112

Proteion homecare service organization, 315, 320–321 QOL. See quality of life Quality Indicator Survey (QIS), 117 quality of health care of older adults, 138–139 quality of life (QOL), 278–279, 286–288, 328 quality training, 176 QuietCare® system, 307, 308, 310, 311, 318 race and aging, 127 participant and parametric diversity in longterm eldercare, 251–252 racial community based eldercare program, 247 radio frequency identification (RFID), 304–305 RCFE. See residential care facility for the elderly registered nurse (RN), 8 regulatory models, 76 rehabilitation systems, 313–314 religious- and faith-based programs, 249 remote person monitoring (RPM) systems, 308–309 behavioral monitoring, 309 person tracking, 309–310 rule-based, 310–312 vital sign monitoring, 312–313 resident agreements/contracts, 77 resident-based diversity, 244. See also participant and parametric diversity in long-term eldercare residential care facility environment (RCFE), 333 residential care facility for the elderly (RCFE), 80, 295 residential eldercare programs, 249 residential facilities, call systems in, 303 resident participation in budgeting, 101 resident rights, 77 resident service management, 83–84 retention, admission and, 77 retrograde/anterograde memory impairment, 266 retrospective payment system, 111 return on investment (ROI), 321–322 reward systems for staff retention, 177 RFID. See radio frequency identification risk reduction in LTC, 134–135 Rock Cove assisted living community, 84 additional accomplishments, 87 community and partnerships, 87 overview of project, 85–86 project history, 85 services included, 86 staffing and partnerships, 86–87

Index  367

ROI. See return on investment rule-based behavioral monitoring, 310–312 sales marketing vs., 186 salesperson, 189–190 Sapir–Whorf hypotheses, 252 Sapir–Whorf–Korzrybski hypotheses, 252 sarcopenia, deconditioning and, 134 self-care, 290 Selfhelp Community Services, Inc., 316, 319–320 senescence biological clock and longevity, 262–263 dementia, 263 service model, 76 sex and aging, 126 sexuality diversity of participants in long-term eldercare, 253 Silent Generation, 189 single photon emission computed tomography (SPECT), 266–267 skilled nursing facilities (SNFs), 165, 241, 243, 284 culture change. See culture change, SNF Medicare reimbursement system, 111–112 quality measurement Federal Nursing Home Compare, 116 Five-Star rating system, 116 NQF, 116, 117 post-OBRA, 115 standard recertification survey, 116–118 staffing levels and regulations, 112–113 nursing staffing mix, 114 and quality of care, 114–115 21st century SNF, emerging needs adults younger than 65 years, 119 medically complex, 118 obese and morbidly obese, 119 severely demented, 118–119 in United States federal regulations, 108 history, 106–107 ownership structure, 109–110 resident and facility characteristics, 107–108 revenues, 110–111 state regulations, 108–109 Skype technology, 315–316 smart alarms, 304 smoking avoidance, 134–135 SNFs. See skilled nursing facilities social class diversity of participants in longterm eldercare, 253 social marketing platforms, 199

social model, 174 social networking systems, 316 Social Security Act, 106 Social Security Disability Insurance (SSDI), 272 Social Services Block Grants, 213 Society for Academic Emergency Medicine (SAEM), 329 SPECT. See single photon emission computed tomography spiritual beliefs, 290 spiritual distress, 290 spirituality, 249 and assessment, 289–290 and plans of care, 290–291 SSDI. See Social Security Disability Insurance SSI. See Supplemental Security Income staffing and quality of care, 167–168 requirements, 165–166 Stark laws, 194–195 State Balancing Incentive Payments Program, 218 state regulatory models, 76 stroke, 263 substandard care, 172 Supplemental Security Income (SSI), 80 supportive service programs (SSPs), 55–57 SUPPORT trial of 1995, 283 SWOT analysis, 186, 187 system of care, 174 teleconferencing systems, 315–316 terminal disease, 286 The Joint Commission (TJC), 280 therapeutic communication techniques, 290 therapeutic landscape, 64, 66 TJC. See The Joint Commission tort-reform amendment, 109 transdisciplinary model, 288 transfer trauma, 332–333 tube feeding, 136 type 2 diabetes, 268 umbrella model, 76 UMHS. See University of Michigan Health System Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UGAPPJA), 272–273 United Jewish Communities, 56 universal workers, 82 University Mound Ladies Home (UMLH), 188, 295–296

368  Index

University of Michigan Health System (UMHS), 232 U.S. Food and Drug Administration (FDA), 269 U.S. health care system, 222 vascular dementia, 263 vendors, 194–195 Vigil Healthcare Solutions, 308 Virtual Senior Center, The, 316

vital sign monitoring, 312–313 wandering alarms in institutional settings, 304–305 in private residence, 305–306 WATCHIE®, 306 W. K. Kellogg Foundation Logic Model Development Guide, 322 wrongful death legal actions, 224