Evidence-Based Practice in Dementia for Nurses and Nursing Students 9781849054867, 9780857008817, 9781785926235, 9781785926242, 9781785922763, 9781784505769, 9781785923975, 9781784507541

Table of contents :
Evidence-Based Practice in Dementia for Nurses and Nursing Students by Karen Harrison Dening
Foreword
1. What is Dementia? by Malarvizhi Babu Sandilyan and Tom Dening
2. Diagnosis of Dementia by Malarvizhi Babu Sandilyan and Tom Dening
3. Medical Treatment and Management of Patients with Dementia by Malarvizhi Babu Sandilyan and Tom Dening
4. Diagnosis and Support of Younger People with Dementia by Hilda Hayo
5. Learning Disability and Dementia by Chris Knifton
6. Three Decades On – Are We Truly Delivering Person-Centred Care? by Caroline Baker
7. Communication and the Enriched Model of Dementia Care by Jan Leeks
8. Psychosocial Approaches to Behaviours that Challenge Care by Esme Moniz-Cook
9. Ethical Issues in Caring for a Person with Dementia by Aileen Beatty and Julian C. Hughes
10. Using Risk Management to Promote Person-Centred Care by Sarah Rhynas and Charlotte Clarke
11. Safeguarding and Dementia by Jill Manthorpe and Stephen Martineau
12. Sexuality and Dementia by Jane Youell
13. Supporting Decision Making in Dementia by Jill Manthorpe
14. Advance Care Planning in Dementia by Karen Harrison Dening
15. Spirituality and Dementia Care by Helen Scott
16. Supporting Families and Carers of People with Dementia by Zena Aldridge
17. Supporting People Living with Dementia and Complex Health Needs by Frances Bunn, Claire Goodman and Cheryl Holman
18. Delirium and Dementia by Angela Moore
19. Pain in Dementia by Elizabeth Sampson
20. Palliative and End-of-Life Care in Dementia by Karen Harrison Dening
21. Care of People with Dementia in the Community by Jo Moriarty
22. Care of People with Dementia in a Primary Care Setting by Steve Iliffe
23. Care of People with Dementia in an Acute Hospital Setting by Katie Featherstone and Andy Northcott
24. Care of People with Dementia in a Care Home Setting by Caroline Baker
25. Care of Families Affected by Dementia in a Hospice Setting by Sharron Tolman
The Contributors
Subject Index
Author Index

Citation preview

Evidence-Based Practice in Dementia for Nurses and Nursing Students

by the same author Dementia, Culture and Ethnicity Issues for All

Edited by Julia Botsford and Karen Harrison Dening Foreword by Alistair Burns ISBN 978 1 84905 486 7 eISBN 978 0 85700 881 7

of related interest Communication Skills for Effective Dementia Care

A Practical Guide to Communication and Interaction Training (CAIT)

Edited by Ian Andrew James and Laura Gibbons ISBN 978 1 78592 623 5 eISBN 978 1 78592 624 2

CLEAR Dementia Care©

A Model to Assess and Address Unmet Needs

Dr Frances Duffy

ISBN 978 1 78592 276 3 eISBN 978 1 78450 576 9

Essentials of Dementia

Everything You Really Need to Know for Working in Dementia Care

Dr Shibley Rahman and Professor Rob Howard Foreword by Karen Harrison Dening Foreword by Kate Swaffer ISBN 978 1 78592 397 5 eISBN 978 1 78450 754 1

Excellent Dementia Care in Hospitals

A Guide to Supporting People with Dementia and their Carers

Jo James, Beth Cotton, Jules Knight, Rita Freyne, Josh Pettit and Lucy Gilby With contributions by Nicci Gerrard and Julia Jones ISBN 978 1 78592 108 7 eISBN 978 1 78450 372 7

Person-Centred Dementia Care, Second Edition Making Services Better with the VIPS Framework

Dawn Brooker and Isabelle Latham ISBN 978 1 84905 666 3 eISBN 978 1 78450 170 9

EVIDENCE-BASED PRACTICE IN DEMENTIA FOR NURSES AND NURSING STUDENTS Edited by Karen Harrison Dening Foreword by Alistair Burns

Figure 16.1 on page 216 is reproduced from Carers Trust and Royal College of Nursing 2016 with kind permission from Carers Trust. Box 25.2 on page 330 includes an image reproduced with kind permission from St Cuthbert’s Hospice. First published in 2019 by Jessica Kingsley Publishers 73 Collier Street London N1 9BE, UK and 400 Market Street, Suite 400 Philadelphia, PA 19106, USA www.jkp.com Copyright © Jessica Kingsley Publishers 2019 Foreword copyright © Alistair Burns 2019 All rights reserved. No part of this publication may be reproduced in any material form (including photocopying, storing in any medium by electronic means or transmitting) without the written permission of the copyright owner except in accordance with the provisions of the law or under terms of a licence issued in the UK by the Copyright Licensing Agency Ltd. www.cla.co.uk or in overseas territories by the relevant reproduction rights organisation, for details see www.ifrro.org. Applications for the copyright owner’s written permission to reproduce any part of this publication should be addressed to the publisher. Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution. Library of Congress Cataloging in Publication Data Names: Harrison Dening, Karen, 1957- editor. Title: Evidence-based practice in dementia for nurses and nursing students / edited by Karen Harrison Dening ; foreword by Alistair Burns. Description: London ; Philadelphia : Jessica Kingsley Publishers, 2019. | Includes bibliographical references. Identifiers: LCCN 2018043716 | ISBN 9781785924293 Subjects: | MESH: Dementia--nursing | Evidence-Based Nursing Classification: LCC RC521 | NLM WY 160 | DDC 616.8/310231-dc23 LC record available at https://lccn.loc.gov/2018043716 British Library Cataloguing in Publication Data A CIP catalogue record for this book is available from the British Library ISBN 978 1 78592 429 3 eISBN 978 1 78450 797 8

Contents

Foreword by Alistair Burns 7 Preface 9 1. What is Dementia?

12

2. Diagnosis of Dementia

27

3. Medical Treatment and Management of Patients with Dementia

41

4. Diagnosis and Support of Younger People with Dementia

57

5. Learning Disability and Dementia

70

6. Three Decades On – Are We Truly Delivering Person-Centred Care?

83

7. Communication and the Enriched Model of Dementia Care

93

8. Psychosocial Approaches to Behaviours that Challenge Care

105

Malarvizhi Babu Sandilyan and Tom Dening Malarvizhi Babu Sandilyan and Tom Dening

Malarvizhi Babu Sandilyan and Tom Dening Hilda Hayo

Chris Knifton

Caroline Baker

Jan Leeks

Esme Moniz-Cook

9. Ethical Issues in Caring for a Person with Dementia 121 Aileen Beatty and Julian C. Hughes

10. Using Risk Management to Promote Person-Centred Care Sarah Rhynas and Charlotte Clarke

133

11. Safeguarding and Dementia

144

12. Sexuality and Dementia

156

13. Supporting Decision Making in Dementia

169

14. Advance Care Planning in Dementia

181

15. Spirituality and Dementia Care

194

16. Supporting Families and Carers of People with Dementia

212

17. Supporting People Living with Dementia and Complex Health Needs

223

18. Delirium and Dementia

237

19. Pain in Dementia

249

20. Palliative and End-of-Life Care in Dementia

264

21. Care of People with Dementia in the Community

278

22. Care of People with Dementia in a Primary Care Setting

289

23. Care of People with Dementia in an Acute Hospital Setting

299

24. Care of People with Dementia in a Care Home Setting

312

25. Care of Families Affected by Dementia in a Hospice Setting

324

Jill Manthorpe and Stephen Martineau Jane Youell

Jill Manthorpe

Karen Harrison Dening Helen Scott

Zena Aldridge

Frances Bunn, Claire Goodman and Cheryl Holman Angela Moore

Elizabeth Sampson

Karen Harrison Dening Jo Moriarty Steve Iliffe

Katie Featherstone and Andy Northcott Caroline Baker

Sharron Tolman

The Contributors 337 Subject Index 343 Author Index 349

Foreword

Dementia is one of the major health and social care challenges across the world affecting 47 million people worldwide. By 2050, the number is expected to exceed 130 million. This increase is partly to do with the ageing population but also probably to do with improved recognition, treatment and care of people. The costs are highly significant – £26 billion in the UK with a global cost of approaching 820 billion US dollars. The majority of costs are related to family and social support rather than strictly medical care. Dementia is an umbrella term which has a number of competing causes, the commonest of which are Alzheimer’s disease and vascular dementia, a combination of these and dementia with Lewy bodies. Currently, there are no restorative treatments for the main cognitive symptoms but symptomatic treatments are available. Support in a person’s own community is key, bearing in mind that the majority of the experience of people with dementia and their families is in their own communities rather than in the health system. In the UK there have been a number of initiatives to improve the care of people with dementia including increasing the diagnosis rate and shining a light on the prescription of antipsychotic drugs for people with dementia which have been associated with an increased death rate and also the provision of high-quality post diagnostic support. Dementia is now the leading cause of death in England so end-of-life care is most important. This book reflects the relevance of dementia. Experts in the field have considered carefully the evidence base and the improvement in knowledge that is needed in particular fields and have committed that to paper. The layout is pleasing and appropriate in that there is a challenge to the reader to stop and reflect after delving into a particular subject. Case studies abound which increase and enhance the learning opportunity. So, rather than just being a way of portraying information, the interaction with the reader is emphasised.

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Evidence-Based Practice in Dementia for Nurses and Nursing Students

Karen Harrison Dening has done a superb job in structuring the chapters around diagnosis of dementia, person-centred care, the physical aspects of the condition and dementia in contexts and settings. There is much to learn about particular areas, for example, about younger people with dementia, people with a learning disability, and dementia in particular ethnic groups are described. There are a number of challenges around person-centred care and a very poignant description of the malignant social psychology around dementia and changing that into positive person centred work. The importance of behavioural aspects of dementia and their appropriate treatment is well placed, as well as an excellent review on some of the ethical issues of caring for people with dementia. The importance of correct diagnosis and an excellent summary of the differential diagnosis is given, which sets the scene. The rightful place of end-of-life care and advance care planning is summarised by the editor and all importantly the ways to support people with dementia and their families are emphasised. We are reminded of the comorbid issues of delirium and dementia and pain in dementia. The book finishes off with a great summary of the care of people with dementia in the community, in the hospital and in care homes. In recent years it is difficult to imagine how we would ever go back to the malignant psychology which for so long dominated issues around the care of people with the condition and their families. While a treatment is potentially a number of years away, the importance of what we can do now is summarised in this excellent contribution. The Editor and all the contributors are to be congratulated at a significant addition to the armamentarium of literature on this most important of subjects. Everyone involved in dementia care would benefit from dipping into and being challenged by it. Professor Alistair Burns Professor of Old Age Psychiatry University of Manchester

Preface

Welcome to this book! The book was an inspiration following the publication of a very successful series of articles on dementia that ran in a well-known nursing journal between 2015 and 2017, which included 30 individual papers in all. Gwen Clarke (a former section editor for the journal) approached me and invited me to plan, commission and co-edit on a range of issues and topics on dementia and care for people affected by dementia. The series was one of the longest-running and most successful of all the condition-related series the journal had run. It coincided and responded to the call for improved care of people with dementia and their families in several national policy and guidance documents. Dementia care has changed massively on many levels since my days as a student nurse, including such things as: the Kitwoodian approach to person-centred care, the setting and range of services, education, technology, validation and revalidation of professional registrations… need I go on? As one moves through one’s career, reflecting on practice and knowledge, we may sometimes find ourselves saying ‘If only I knew then what I know now’ – then where would we be today? What resources might we have benefited from during our years of training and then as an early career nurse? We may have highly valued a book such as this that introduces the knowledge we need, the evidence base for practice but which also gives the guidance to transfer this newly acquired knowledge into everyday practice.

Structure and content of the book Each of the 25 chapters is written by experts in the field of dementia care who have approached their chapter by combining all of these essential elements: introducing the knowledge and evidence base related to their subject, discussing this through the use of case studies and then asking the reader to stop and reflect and apply this new knowledge to their current practice setting. The authors cannot fit all they know into a brief chapter but they can use their respective expertise and knowledge to set 9

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Evidence-Based Practice in Dementia for Nurses and Nursing Students

the context to caring for people with dementia and their family carers. I have tried to loosely structure the chapters to a section about dementia, a section detailing person-centred dementia care, a section on the physical aspects of dementia such as co-morbid conditions and a final section about dementia care in different contexts and settings. Chapters 1, 2 and 3 introduce us to dementia as a diagnosis, a syndrome and a set of diseases, signs and symptoms. Some would say that these chapters give form to a medical model of dementia but it is essential to understand dementia in an holistic way given that this understanding will help the reader to consider its multi-dimensional elements as part of a whole. The early signs and symptoms of young onset dementia (Chapter 4) are often missed or misattributed to some other cause, which can lead to distress and a delay in receiving an accurate diagnosis. Being diagnosed with dementia at any age can be a shock and can cause distress for the person diagnosed and their family but such a diagnosis at a younger age can be particularly distressing due to the effects on employment, finances, relationships and lifestyle. Dementia and learning disabilities (Chapter 5) is an emerging field of specialist practice with its presentation perhaps seeming atypical by comparison to dementia in a non-learning disability population. However, people with learning disability access all broadstream health and social care, so an understanding of dementia in this population is essential. The central section of the book deals with various principles that underpin dementia care. In Chapter 6 on person-centred care we hear that it may be easier to examine care that is not considered to be personcentred care first! The author uses first-hand experiences in practice and introduces us to a range of what they refer to as person-centred gurus who have impacted on care over time in a way of showing how far we have come. Our understanding of what it is to deliver personcentred care is taken further in Chapter 7 by examining the principles of effective communication. When conversing with a person with dementia we are told it may be easy to focus on directly answering the question someone asks; however, whilst the answers we give are not intended to cause distress, we may be in danger of unintentionally ignoring the psychological needs of the person with dementia. This chapter gives many useful suggestions, scripting and examples of good communication in care. Chapter 8 develops and progresses our understanding of the individual in exploring, analysing and understanding of behaviours that we might find challenging. This chapter helps us to build upon the knowledge gained in Chapters 6 and 7 and apply it to some complex situations that often arise in dementia care, especially in communal living settings.

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Preface

Ethical and legal issues (Chapter 9) underpin all care but have significant meaning in dementia care where a person loses the ability to speak and advocate for themselves. Ethics is about doing the right thing; the authors tell us that it’s not just about doing the right thing technically, for example making sure you’ve given the correct dose of medication; it’s about making sure that you’ve done things in accordance with the underlying moral principles. It is difficult, sequentially, to see at what stage in the text such a chapter might appear. However, wherever this were to be placed, its contents would resonate and underpin all other work in the book. Similarly Chapter 10 promotes risk as being something which those working in health and social care practice consider every day and so it is an element, as ethical practice, that underpins everyday person-centred care. Practice is guided by the ways in which healthcare policy and services construct risk and prepare for the management of that risk, yet every individual, family and practitioner has his/her own understanding of risk and their own limits, preferences and ideals. Chapter 12 explores the intricacies and complexities of relationships affected by dementia particularly in respect of sexuality and intimacy. Intimacy is often an overlooked aspect of aged care, especially in dementia, but remains important throughout the lifespan. The reader may find that several chapters overlap in their relevance and meaning and this may be one such chapter. It is difficult to consider such issues in isolation as they are relational in reality so include family carers (Chapter 16) but also may require a foray into ethical practice (Chapter 9) and possibly event safeguarding (Chapter 11). I encourage you to consider using several chapter perspectives wherever possible in your stop and reflect exercises. Dementia often does not ‘travel alone’ with many people also diagnosed with other conditions and physical illnesses. Old age is the main risk factor for, but not cause of, dementia and as such many people with dementia will have other health problems. Whether they be arthritis, diabetes, delirium, frailty, pain-related conditions, each will require consideration in the context and experience of dementia. There are a range of chapters that enable a greater understanding of some of these physical co-morbidities and guide the student/nurse through best practice case studies. Chapters 21 to 25 explore dementia care across a range of care settings: primary care, care homes, domiciliary care, acute hospital and hospice services. There is much they have in common with each other yet they are also distinctly different in many other respects. There are few parts of health and social care where a nurse does not encounter people with dementia. So an understanding of some of the setting-specific issues will be invaluable in supporting families affected by dementia. Karen Harrison Dening

Chapter 1

What is Dementia? Malarvizhi Babu Sandilyan and Tom Dening

Learning objectives By the end of this chapter you will: • Be aware of the common causes of dementia. • Have an understanding of some of the brain changes in dementia. • Have an awareness of the risk factors for dementia. • Know the cognitive symptoms of dementia. • Know the non-cognitive symptoms of dementia.

Introduction Dementia is an increasingly common condition among the older population. It is characterised by multiple cognitive deficits leading to decline from premorbid level of functioning. The ICD-10 Classification of Mental and Behavioural Disorders (World Health Organization 1992) describes dementia as a syndrome occurring as a result of brain disease, which is usually chronic or progressive in nature. Several higher cortical functions including memory, thinking, comprehension, calculation, learning, language and judgement are impaired. These impairments often accompany changes in emotional control, social behaviour or motivation. Alzheimer’s disease (AD), vascular dementia (VaD) and dementia with Lewy bodies (DLB) remain the main underlying causes.

Dementia – a global health burden The number of people with dementia worldwide is estimated at 44 million and it is projected that it will almost double every 20 years until at least 2050 (Alzheimer’s Disease International 2014). The number of new 12

What is Dementia?

cases of dementia each year worldwide is almost 7.7 million. Dementia predominantly affects older people, with global prevalence rates over the age of 60 years ranging between 5 per cent and 7 per cent (Prince et al. 2013), increasing exponentially with age; around 20 per cent of people over 85 years have dementia. It is projected there will be more than 2 million people with dementia by 2051 (Alzheimer’s Society 2014). Most people with dementia live in low- and middle-income countries, where numbers of people living into old age has grown dramatically (Alzheimer’s Disease International 2017). Dementia is not just a disorder of older people. Earlier data suggested that there were at least 18,000 people younger than 65 years with dementia in the UK (see Chapter 4 and Harvey, Skelton-Robinson and Rossor 2003), but this figure could be as high as 40,000 (Alzheimer’s Society 2014). Studies estimate median survival rates from onset of signs and symptoms as 4.1 years for men and 4.6 years for women, influenced by age and disability (Xie, Brayne and Matthews 2008). In the UK, the costs of dementia are estimated at around £26 billion per annum (Alzheimer’s Society 2014). There are around 6.5 million people in the UK who identify themselves as carers for someone with dementia (Carers UK 2017). It is estimated that carers’ contribution to dementia care is around £11.6 billion (Alzheimer’s Society 2014). Worldwide, it is estimated that dementia costs about US$604 billion (Alzheimer’s Disease International 2014).

Causes of dementia Alzheimer’s disease Alzheimer’s disease is the most common form of dementia and is responsible for about 75 per cent of cases, either on its own or with other forms of pathology (referred to as ‘mixed dementia’). It features abnormal deposition of insoluble ‘plaques’ of a fibrous protein called amyloid and twisted fibres called ‘neurofibrillary tangles’ in the brain (Attems and Jellinger 2013). These abnormal plaques and tangles interfere with normal functioning of brain cells. There is also deficiency of the neurotransmitter acetylcholine, which is important for learning and memory (Piggott 2013). In the early stages, memory loss in relation to recent events and wordfinding difficulties are the most common features (Taylor and Thomas 2013). As the disease progresses, greater memory loss and language difficulties alongside anxiety and lack of motivation become apparent. These symptoms tend to worsen over time (Steinberg et al. 2008).

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Evidence-Based Practice in Dementia for Nurses and Nursing Students

Vascular dementia Vascular dementia is the second most common type of dementia after Alzheimer’s disease. Here the brain’s blood supply is compromised by arterial disease, which results in reduced neuronal function and eventually the death of brain cells. Numerous vascular risk factors contribute, including hypertension, hyperlipidaemia, diabetes, smoking, diet and obesity. Diabetes causes an increased risk of dementia not only through vascular disease but also through the cerebral deposition of compounds derived from the hormone amylin (Jackson et al. 2013). Vascular dementia may develop following a stroke, although progression is more often gradual than stepwise (Tatemichi et al. 1994). In addition to memory and language difficulties, as in Alzheimer’s disease, slowing of thinking processes, depression, anxiety and apathy are common (O’Brien et al. 2003).

Dementia with Lewy bodies Dementia with Lewy bodies is the third most common type of dementia, accounting for around 10 per cent of cases (Matsui et al. 2009). It shares several characteristics with Alzheimer’s disease and Parkinson’s disease. Parkinson’s disease itself can also cause cognitive impairment and eventually dementia (Aarsland et al. 2009). Lewy bodies, which are characteristic of this group of diseases, are small aggregations of a protein called alpha-synuclein that occur in neurons in various areas of the brain, including the cerebral cortex in dementia with Lewy bodies (Attems and Jellinger 2013). Clinical features may include memory loss, as seen in Alzheimer’s disease, but problems with locating the positions of objects (visuo-spatial deficits) are more prominent. There is difficulty in maintaining alertness, disorientation to space and difficulty in planning. Characteristic features of dementia with Lewy bodies are visual hallucinations, recurrent falls and marked fluctuations in levels of conscious awareness and disturbed sleep and/or nightmares (McKeith et al. 2005). Features similar to Parkinson’s disease include trembling in limbs, shuffling when walking and reduced facial expression.

Frontotemporal dementia Frontotemporal dementia is a relatively uncommon type of dementia, and covers a range of conditions that affect frontal regions of the brain responsible for planning, emotion, motivation and language. Half of those affected present with behavioural changes (behavioural variant frontotemporal dementia) and about half with problems in speech and

What is Dementia?

language. Behavioural changes may affect the personality, for example lack of inhibitions, lack of empathy, the adoption of rigid routines because of lack of mental flexibility and difficulty in planning. Eating habits may change, with overeating and preference for sweet foods. Language problems may include difficulty in producing speech (primary progressive aphasia) or losing the meaning of words and concepts (semantic dementia).

Mixed dementias More than one type of dementia can co-exist causing mixed dementia. The most common type is mixed Alzheimer’s and vascular dementias, where there are clinical characteristics and brain changes common to both conditions. This becomes much more common with advanced age, beyond 80 years or so, and a mixture of Alzheimer’s and vascular pathology is often seen at post-mortem examination (Brayne et al. 2009).

Some less common forms of dementia There are several other less common conditions that can cause dementia (Graham 2013), including the following: • Huntington’s disease is an inherited disease causing abnormal movements and co-ordination difficulties, and also cognitive problems. Dementia is a common feature in about 50 per cent of people with advanced Huntington’s disease (Zarowitz, O’Shea and Nance 2014). • Corticobasal degeneration is where there is damage and shrinking of the brain, possibly as a result of abnormal protein deposits in the brain. There are movement difficulties and loss of balance, along with dementia (Grijalvo-Perez and Litvan 2014). • Creutzfeldt–Jakob disease is caused by infectious protein particles in the brain called prions. It affects one person in one million and it may take several years for an infected person to develop symptoms. It begins with lethargy, mood disturbances and memory lapses, progressing to loss of balance, and death may occur within six months of early symptoms. It may have various psychiatric presentations including dementia (Abudy, Juven-Wetzler and Zohar 2014). • Multiple sclerosis affects certain parts of the brain causing cognitive difficulties that vary between individuals over a period of time.

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Evidence-Based Practice in Dementia for Nurses and Nursing Students

Particularly the degree of frontal lobe atrophy seems to predict the degree of cognitive impairment (Benedict et al. 2002). • Normal pressure hydrocephalus is where excess fluid accumulates in the brain cavities. Patients present with loss of balance, urinary incontinence and cognitive problems. Though it can be ameliorated by neurosurgery, it appears dementia is the least likely feature to improve (Klassen and Ahlskog 2011). • Dementia can result from direct infection of the brain by the human immunodeficiency virus or through lack of immunity leading to other infections and cancers of the brain. Neurocognitive disorders remain prevalent in people with HIV despite progress with antiretroviral therapies (Sacktor and Robertson 2014).

CASE STUDY: GEORGE George is a 72-year-old man who presented with behavioural changes, aggression towards his family and episodes of visual hallucinations; he was seeing intruders in his garden whom he believed were stealing his belongings. These episodes varied throughout the day and he had periods of severe confusion. He was treated by his GP with neuroleptics which worsened his confusion and caused severe rigidity of his limbs. He became dependent on his wife, having severe difficulties in managing his finances and inability to find his way around the town. He had neuropsychological tests at the memory clinic which showed marked problems with planning, problem solving and performing actions in a sequence (a pattern referred to as executive dysfunction), and visuo-spatial deficits. He was referred for a DAT brain scan (which is a special scan used in the diagnosis of Parkinson’s and related diseases) which identified reduced uptake in the part of the brain known as the striatum. He was diagnosed as having dementia with Lewy bodies. His symptoms improved with prescription of rivastigmine, an acetylcholinesterase inhibitor.

Risk factors for dementia Age is the most consistent and significant risk factor for dementia (Launer et al. 1999). The incidence and prevalence rates for dementia both double every five years from the age of 65 to 85. More women are affected by Alzheimer’s disease than men (Launer et al. 1999). Vascular dementia,

What is Dementia?

however, is more common in men than women. Increased longevity of women could be one of several reasons. At least 20 genes are known to be associated with Alzheimer’s disease (Medway and Morgan 2014). The gene APOE type E4 is said to be associated with increased risk of developing late-onset Alzheimer’s disease (Verghese, Castellano and Holtzmann 2011). Three genes, coding for different proteins (amyloid precursor protein, presenilin-1 and presenilin-2), are associated with early-onset disease but they are rare and account for less than 1 in 1000 cases. Down’s syndrome carries genes (chromosome 21) that are associated with amyloid production, so this may be responsible for the fact that many but not all people with Down’s syndrome develop Alzheimer’s disease in middle age (Coppus et al. 2006). People who are depressed have more trouble remembering things, and people with a history of depression (Wilson et al. 2002) or midlife stress (Johansson et al. 2010) seem to have an elevated risk of dementia. However, whether depression actually causes dementia is less clear (Kessing 2012). High blood pressure is the single most important risk factor for stroke, which can lead to vascular dementia (Posner et al. 2002). Hypertension can also be a risk factor for Alzheimer’s disease (Qiu, Winblad and Fratiglioni 2005). People with diabetes are at an increased risk of developing dementia (Ohara et al. 2011), because of the harmful effect of high blood glucose on the brain and the effects of diabetes on small blood vessels. Stroke is the single most important risk factor for developing vascular dementia and there is some evidence that it can also increase the risk of Alzheimer’s disease (Savva and Stephan 2010). Heart conditions such as atrial fibrillation (irregular heart rhythm) and heart failure have been shown to be associated with an increased risk of developing dementia (Newman et al. 2005). Among various lifestyle factors, smoking is a potential risk factor for developing Alzheimer’s disease (Ott et al. 1998). It also affects the blood vessels in the brain, increasing the risk of vascular dementia. Heavy alcohol consumption can cause alcohol-related dementia and can also lead to vascular changes in the brain that in turn increase the risk of developing vascular dementia. Moderate drinking may be protective to the brain (Ruitenberg et al. 2002) and there is some evidence that red wine is particularly beneficial (Nooyens et al. 2014). There is evidence that physical exercise and mental stimulation can protect against cognitive decline in people who do not have dementia (Sofi et al. 2011; Valenzuela et al. 2012). Research often shows a relationship between low educational level and increased prevalence of dementia (Sharp and Gatz 2011). Recently, it has been suggested that hearing loss can contribute to

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dementia (Lin et al. 2011), though whether it genuinely causes dementia or simply makes the effects of any cognitive impairment more marked is unclear. Evidence is inconclusive for other risk factors such as hormone replacement therapy, head injury and aluminium toxicity.

Cognitive symptoms of dementia Amnesia or difficulty in learning new information is the core deficit in Alzheimer’s disease (AD). Symptoms such as forgetfulness lead to losing things around the house, repetitive questioning and forgetting appointments. The inability to remember new information is called ‘anterograde amnesia’. ‘Retrograde amnesia’ is the inability to retrieve previously formed memories and is usually accompanied by loss of (a) episodic memory (memory for personal life events) (b) semantic memory (the memory for facts and information about the world) (c) visuo-spatial memory (remembering known places and faces) and (d) working memory (remembering a list of words or string of numbers long enough to repeat it immediately after hearing it). Episodic memory loss is one of the earliest signs of AD whereas working memory is usually preserved during the initial stages. Language deficits are apparent even during the early stages of AD and usually include word-finding difficulties. This can also be particularly an early feature in frontotemporal dementia. Expressive (or nominal) aphasia is where people cannot find the name of objects or people – rare objects to begin with and later extending to common ones. Apraxia means inability to perform complex actions (e.g. buttoning a shirt) despite intact neuro-musculoskeletal system and normal coordination. This is due to failure of the higher brain functions that direct such complex tasks. Common types of apraxia in dementia are dressing apraxia (forgetting the sequence of actions required for dressing and not being able to orientate parts of their body to the garment), ideational apraxia (loss of perception of an object’s purpose, like using the flat side of the comb to comb hair), ideomotor apraxia (breakdown between the idea of an action and its execution, for example, when asked to wave ‘good-bye’, the person may know the movements that will bring about the action, but is unable to perform the action), and constructional apraxia (inability to place things in relation to one another, like drawing a three-dimensional figure). Agnosia is the inability to interpret information from intact sensory system (touch, taste, sight, smell, sound). Visual agnosia is where the person fails to recognise objects despite seeing them. They may fail to recognise common household objects; for example they may misidentify

What is Dementia?

the dustbin as the toilet or mistake the kettle for the teapot. Inability to recognise faces including one’s own is called prosopagnosia. Such people may fail to identify their family members or misidentify their own image in the mirror (known as the mirror sign). Problems in maintaining attention whilst performing tasks, especially those that require sustained attention, can occur early on. Dysexecutive syndrome reflects problems in frontal brain connections causing difficulty with planning, problem solving and performing actions in a sequence. They have poor concentration and cannot shift from one task to another easily which results in perseveration. They have difficulty in inhibiting their actions, being tactless or sexually inappropriate, or lack motivation (apathy). Thinking may be affected by a general slowing of cognitive processes which affects judgement and decision-making skills.

CASE STUDY: ALICE Alice’s son was concerned that his mother seemed to be repeating the same questions over and over again. He noticed she forgot her medication on some days and also missed several appointments. He suggested that she should be seen at the memory clinic, but Alice considered herself to have an excellent memory and took pride in that she could recall everything from her childhood days. She was eventually persuaded to have an assessment, and when her memory was tested in the clinic she clearly struggled to learn new information. Alice had anterograde memory loss, the hallmark of Alzheimer’s disease, which is inability to form new memories. As her dementia is still in the early stages, her remote memory is relatively intact. Retrograde memory loss presents later on in the disease, causing inability to retrieve old memories.

Non-cognitive symptoms of dementia Non-cognitive symptoms of dementia include the psychological, behavioural and biological changes that occur in many patients. Changes in personality and in mood, including depression, occur in 80 per cent of people with dementia. Behavioural changes, including agitation and apathy, also occur in about the same proportion but occur later in the course of the illness and often persist. They are sometimes referred to as behavioural and psychological symptoms of dementia (BPSD), though this term is sometimes criticised as it reduces behaviour that may be a form of communication to the level of mere symptoms.

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Studies report that major and minor depressive symptoms are seen in approximately one-third to one-half of patients with dementia (Lee and Lyketsos 2003; Olin et al. 2002). Those with a family history of depression are at increased risk for developing major depressive episodes during the course of the disease process. In addition to this, an episode of depression in earlier life is a risk factor for the development of Alzheimer’s disease later on. Those with a family history of depression are at increased risk for developing major depressive episodes during the course of the disease process. Anxiety is another common symptom in people with dementia (Mega et al. 1996), with prevalence rates of 5–21 per cent for anxiety disorders and 8–71 per cent for anxiety symptoms (Seignourel et al. 2008). Though men and women with dementia are equally affected by anxiety symptoms, they are more common in people with VaD than AD. Anxiety is also more common in mild to moderate stages than severe stages of dementia. Anxiety usually occurs alongside depression and seems to limit activities of daily living, resulting in poor quality of life. Starkstein et al. (2007) proposed certain criteria to identify anxiety disorder in dementia. These included the presence of excessive worry that is difficult to control, along with three out of the following five: restlessness, irritability, muscle tension, fears and respiratory symptoms (rapid breathing, chest tightness). This suggests a high likelihood of the person suffering from anxiety disorder. Psychotic symptoms are experienced at some stage by about 40 per cent of people with dementia (Ropacki and Jeste 2005) and include delusions and hallucinations. Delusions of persecution and delusions of misidentification are common. Psychotic symptoms occur more commonly in DLB (dementia with Lewy bodies) than in AD or VaD (Ballard et al. 1995). Visual hallucinations are a core feature in defining the characteristics of DLB. Confabulations are false memories, which may be either entirely or partially incorrect, and which sometimes consist of real memories jumbled up and retrieved out of temporal context (Kopelman 2010). Common behavioural changes that may occur in dementia are apathy, agitation, aggression (verbal and physical), walking about, wandering, sexual disinhibition and abnormal vocalisations. Apathy refers to a lack of pleasure, emotion, motivation or interest. Apathy is a very common change seen in dementia and occurs in 48 per cent to 92 per cent of patients (Mega et al. 1996). It tends to begin in the early stages of dementia. Apathy has a close relationship to depression but the two are not the same thing. The Cache County study (Lyketsos et al. 2000) reported that the prevalence of apathy among AD patients was 27 per cent, while more than 40 per cent of apathetic AD patients had depression. Similarly, 56 per cent of AD patients with depression had apathy. Apathy has three domains:

What is Dementia?

reduced goal-directed behaviour, slowness and lack of focus in thinking, and emotional indifference with flat affect. They relate to dopamine, acetylcholine and serotonin neurotransmission respectively. Agitation is seen in 20–45 per cent of people with mild dementia rising up to 90 per cent in people with advanced stages of dementia (Desai, Schwartz and Grossberg 2012). Agitation can manifest as shouting, swearing, verbal threats, pacing, fidgeting, hitting, biting, kicking and scratching. Wandering or walking about is a tendency to move about in a seemingly aimless fashion or in pursuit of unobtainable goals. Wandering is common in people with dementia, and occurs in about 20 per cent of people with dementia in the community, more so as the disease progresses (Klein et al. 1999). Abnormal vocalisation is common in late stages of dementia. This includes screaming, wailing, loud disruptive talking and mumbling. It may be associated with several factors, including severe cognitive impairment, severe impairment of activities of living, pain, sleep disturbance, depression, deafness, communication difficulties, and agitation. Burns, Jacoby and Levy (1990) found that 6.9 per cent of people with Alzheimer’s disease exhibited sexually inappropriate behaviour such as indecent exposure, obscene sexual language, masturbation and propositioning others. Biological symptoms of dementia are related to sleep and appetite changes. Sleep disturbances in dementia are varied and often several changes occur, including interrupted sleep through the night, prolonged time to fall asleep, and day-time napping. Neurological changes in the brain and reduced day-time activity cause disturbance in the biological control mechanism of the sleep–wake cycle. A particular type of sleep disorder called REM (rapid eye movement) sleep behaviour disorder is seen in dementia with Lewy bodies and in Parkinson’s disease. Changes in eating habits include reduction or increase in appetite, altered frequency of eating, improper use of cutlery to feed oneself, preference (or even craving) for sweet foods or tendency to eat inedible substances. People with dementia may also display ‘oral behaviour’, which is a tendency to explore objects with the lips and eating inappropriate food items.

CASE STUDY: DIANE Diane lives in a care home with advanced dementia. Carers noticed that she was not eating her food and as a result she was losing weight. She also no longer seemed to enjoy the sing-along sessions anymore. She was waking up early and walking about trying to get out through the doors.

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Diane may be experiencing depressive symptoms, as she is not able to verbalise her feelings due to advanced dementia. However, the changes in her sleep pattern, loss of appetite, weight loss and lack of enjoyment suggest a depressive illness. A bio-psycho-social approach including increasing pleasurable activities for her and treatment with antidepressants may help. An assessment of her swallowing and any other physical health issues will also be needed.

Conclusion Dementia is a common condition worldwide. With rapidly increasing numbers, it is a global health and social care issue. Dementia has various causes, of which Alzheimer’s disease is the most common. Dementia is associated with increasing age, but age is a risk factor, not a cause, of dementia. There are various other known risk factors for dementia, and many of these relate to vascular disease and lifestyle, which makes them promising areas for prevention and health promotion. The clinical features of dementia are usually considered in two groups – cognitive and noncognitive symptoms. Among cognitive symptoms, memory loss is the most typical of most forms of dementia, but problems with language and executive functioning are also very prominent. ‘Non-cognitive symptoms’ is a general term for a group of problems that include mood disorders, psychotic symptoms and various other changes in behaviour.

STOP AND REFLECT Below are some examples of how patients with dementia present. Think about the case of Alice in this chapter. Perhaps you have met someone like this in your own practice or even among your own relatives or acquaintances. Think about how you would try to explain to someone that they have Alzheimer’s disease. How might she react? What impact could this diagnosis have on her son? What questions might they want to ask you, and how would you answer them? Are there any practical steps that they should take at this stage? Imagine you are seeing Thomas who experienced a stroke last year. He is seen in memory clinic and has been diagnosed with vascular dementia. What risk factors might have contributed to Thomas’s stroke? What lifestyle changes would you want to advise him about? What impact will his condition have on his daily living

What is Dementia?

activities such as driving, managing finances etc.? What further support will he need? Consider you are visiting Harriet who has advanced stages of dementia and lives in a care home. Staff are concerned that she is always trying to walk out of the main door and gets angry when she is not let out. What could be the underlying reasons for Harriet’s presentation? What questions would you want to ask the care home staff about her? Do you anticipate any challenges in managing Harriet’s care and how will you overcome those? Let’s consider Alice again, who is presenting to the clinic three years after her initial diagnosis. Her son is now concerned that she does not recognise him at times. She even gets scared of him, thinking he is a stranger in her home. What concerns do you think he will have about her presentation? What could be the underlying causes for Alice’s confusion? How will you address her son’s concerns?

References Aarsland, D., Brønnick, K., Larsen, J.P. et al. (2009) Cognitive impairment in incident, untreated Parkinson’s disease: the Norwegian ParkWest study. Neurology. 72(13): 1121–1126. Abudy, A., Juven-Wetzler, A. and Zohar, J. (2014) The different faces of Creutzfeldt–Jacob disease CJD in psychiatry. General Hospital Psychiatry. 36(3): 245–248. Alzheimer’s Disease International (2014) World Alzheimer Report 2014: Dementia and Risk Reduction. www.alz.co.uk/research/world-report-2014 (Accessed 11 Oct 2017). Alzheimer’s Disease International (2017) Dementia Statistics. www.alz.co.uk/research/ statistics (Accessed 11 Oct 2017). Alzheimer’s Society (2014) Dementia UK: Update. Second edition. London: Alzheimer’s Society. Attems, J. and Jellinger, A.K. (2013) Neuropathology. In T. Dening and A. Thomas (eds) Oxford Textbook of Old Age Psychiatry. Second edition. Oxford: Oxford University Press. Ballard, C.G., Saad, K., Patel, A. et al. (1995) The prevalence and phenomenology of psychotic symptoms in dementia sufferers. International Journal of Geriatric Psychiatry. 10: 477–485. Benedict, R.H., Bakshi, R., Simon, J.H., Priore, R., Miller, C. and Munschauer, F. (2002) Frontal cortex atrophy predicts cognitive impairment in multiple sclerosis. Journal of Neuropsychiatry and Clinical Neuroscience. 14(1): 44–51. Brayne, C., Richardson, K., Matthews, F.E. et al. (2009) Neuropathological correlates of dementia in over-80-year-old brain donors from the population-based Cambridge city over-75s cohort (CC75C) study. Journal of Alzheimer’s Disease. 18(3): 645–658. Burns, A., Jacoby, R. and Levy, R. (1990) Psychiatric phenomena in Alzheimer disease. IV: disorders of behavior. British Journal of Psychiatry. 157: 86–94. Carers UK (2017) Why We’re Here. www.carersuk.org/about-us/why-we-re-here (Accessed: 11 Oct 2017).

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Coppus, A., Evenhuis, H., Verberne, G.J. et al. (2006) Dementia and mortality in persons with Down’s syndrome. Journal of Intellectual Disability Research. 50(10): 768–777. Desai, A.K., Schwartz, L. and Grossberg, G.T. (2012) Behavioral disturbance in dementia. Current Psychiatry Reports. 14: 298–309. Graham, A. (2013) Neurological dementias. In T. Dening and A. Thomas (eds) Oxford Textbook of Old Age Psychiatry. Second edition. Oxford: Oxford University Press. Grijalvo-Perez, A.M. and Litvan, I. (2014) Corticobasal degeneration. Seminars in Neurology. 34(2): 160–173. Harvey, R.J., Skelton-Robinson, M. and Rossor, M.N. (2003) The prevalence and causes of dementia in people under the age of 65 years. Journal of Neurology, Neurosurgery and Psychiatry. 74(9): 1206–1209. Jackson, K., Barisone, G.A., Diaz, E., Jin, L.W., DeCarli, C. and Despa, F. (2013) Amylin deposition in the brain: a second amyloid in Alzheimer disease? Annals of Neurology. 74(4): 517–526. Johansson, L., Guo, X., Waern, M., et al. (2010) Midlife psychological stress and risk of dementia: a 35-year longitudinal population study. Brain. 133. Part 8, 2217–2224. Kessing, L.V. (2012) Depression and the risk for dementia. Current Opinion in Psychiatry. 25(6): 457–461. Klassen, B.T. and Ahlskog, J.E. (2011) Normal pressure hydrocephalus: how often does the diagnosis hold water? Neurology. 77(12): 1119–1125. Klein, D., Steinberg, M., Galik, E., Steele, C., Sheppard, J. et al. (1999) Wandering behaviour in community-residing persons with dementia. International Journal of Geriatric Psychiatry. 14: 272–279. Kopelman, M.D. (2010) Varieties of confabulation and delusion. Cognitive Neuropsychiatry. 15: 14–37. Launer, L.J., Andersen, K., Dewey, M.E. et al. (1999) Rates and risk factors for dementia and Alzheimer’s disease: results from EURODEM pooled analyses. Neurology. 52(1): 78–84. Lee, H.B. and Lyketsos, C.G. (2003) Depression in Alzheimer’s disease: heterogeneity and related issues. Biological Psychiatry. 54(3): 353–362. Lin, F.R., Metter, E.J., O’Brien, R.J., Resnick, S.M., Zonderman, A.B. and Ferrucci, L. (2011) Hearing loss and incident dementia. Archives of Neurology. 68(2): 214–220. Lyketsos, C.G., Steinberg, M., Tschanz, J.T., et al. (2000) Mental and behavioral disturbances in dementia: findings from Cache County Study on Memory and Aging. American Journal of Psychiatry. 157: 708–714. Matsui, Y., Tanizaki, Y., Arima, H., et al. (2009) Incidence and survival of dementia in a general population of Japanese elderly: the Hisayama study. Journal of Neurology, Neurosurgery and Psychiatry. 80(4): 366–370. McKeith, I.G., Dickson, D.W., Lowe, J. et al. (2005) Diagnosis and management of dementia with Lewy bodies: third report of the Dementia with Lewy bodies consortium. Neurology. 65(12): 1863–1872. Medway, C. and Morgan, K. (2014) Review: The genetics of Alzheimer’s disease; putting flesh on the bones. Neuropathology and Applied Neurobiology. 40(2): 97–105. Mega, M.S., Cummings, J.L., Fiorello, T. et al. (1996) The spectrum of behavioral changes in Alzheimer’s disease. Neurology. 46(1): 130–135. Newman, A.B., Fitzpatrick, A.L., Lopez, O., et al. (2005) Dementia and Alzheimer’s disease incidence in relation to cardiovascular disease in the Cardiovascular Health Study cohort. Journal of the American Geriatrics Society. 53(7): 1101–1107. Nooyens, A.C., Bueno-de-Mesquita, H.B., van Gelder, B.M., van Boxtel, M.P. and Verschuren, W.M. (2014) Consumption of alcoholic beverages and cognitive decline at middle age: the Doetinchem Cohort Study. British Journal of Nutrition. 111(4): 715–723.

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O’Brien, J.T., Erkinjuntti, T., Reisberg, B., et al. (2003) Vascular cognitive impairment. Lancet Neurology. 2(2): 89–98. Ohara, T., Doi, Y., Ninomiya, T. et al. (2011) Glucose tolerance status and risk of dementia in the community: the Hisayama study. Neurology. 77(12): 1126–1134. Olin, J.T., Katz, I.R., Meyers, B.S., Schneider, L.S. and Lebowitz, B.D. (2002) Provisional diagnostic criteria for depression of Alzheimer disease: rationale and background. American Journal of Geriatric Psychiatry. 10(2): 129–141. Ott, A., Slooter, A.J., Hofman, A., van Harskamp, F., Witteman, J.C., Van Broeckhoven, C., et al. (1998) Smoking and risk of dementia and Alzheimer’s disease in a populationbased cohort study: the Rotterdam Study. The Lancet. June 20; 351(9119): 1840–1843. Piggott, M.A. (2013) Neurochemical pathology of dementia. In T. Dening and A. Thomas (eds) Oxford Textbook of Old Age Psychiatry. Second edition. Oxford: Oxford University Press. Posner, H.B., Tang, M.X., Luchsinger, J., et al. (2002) The relationship of hypertension in the elderly to Alzheimer’s disease, vascular dementia, and cognitive function. Neurology. 58(8): 1175–1181. Prince, M., Bryce, R., Albanese, E., Wimo, A., Ribeiro, W. and Ferri, C.P. (2013) The global prevalence of dementia: a systematic review and meta-analysis. Alzheimer’s & Dementia. 9: 63–75. Qiu, C., Winblad, B. and Fratiglioni, L. (2005) The age-dependent relation of blood pressure to cognitive function and dementia. Lancet Neurology. 4(8): 487–499. Ropacki, S.A. and Jeste, D.V. (2005) Epidemiology of and risk factors for psychosis of Alzheimer’s disease: a review of 55 studies published from 1990 to 2003. American Journal of Psychiatry. 162: 2022–2030. Ruitenberg, A., van Swieten, J.C., Witteman, J.C. et al. (2002) Alcohol consumption and risk of dementia: the Rotterdam study. The Lancet. 359(9309): 281–286. Sacktor, N. and Robertson, K. (2014) Evolving clinical phenotypes in HIV-associated neurocognitive disorders. Current Opinion in HIV and AIDS. 9(6): 517–520. Savva, G.M. and Stephan, B.C.M. (2010) Epidemiological studies of the effect of stroke on incident dementia: a systematic review. Stroke. 41(1): E41–E46. Seignourel, P.J., Kunik, M.E., Snow, L., Wilson, N. and Stanley, M. (2008) Anxiety in dementia: a critical review. Clinical Psychology Reviews. 28(7): 1071–1082. Sharp, E.S. and Gatz, M. (2011) The relationship between education and dementia: an updated systematic review. Alzheimer Disease and Associated Disorders. 25(4): 289–304. Sofi, F., Valecchi, D., Bacci, D. et al. (2011) Physical activity and risk of cognitive decline: a meta-analysis of prospective studies. Journal of Internal Medicine. 269(1): 107–117. Steinberg, M., Shao, H., Zandi, P. et al. (2008) Point and 5-year period prevalence of neuropsychiatric symptoms in dementia: the Cache County Study. International Journal of Geriatric Psychiatry. 23(2): 170–177. Starkstein, S.E., Jorge, R., Petracca, G. and Robinson, R.G. (2007) The construct of generalized anxiety disorder in Alzheimer disease. American Journal of Geriatric Psychiatry. 15(1): 42–49. Tatemichi, T.K., Paik, M., Bagiella, E., et al. (1994) Risk of dementia after stroke in a hospitalized cohort: results of a longitudinal study. Neurology. 44(10): 1885–1891. Taylor, J.-P. and Thomas, A. (2013) Alzheimer’s disease. In T. Dening and A. Thomas (eds) Oxford Textbook of Old Age Psychiatry. Second edition. Oxford: Oxford University Press. Valenzuela, M.J., Matthews, F.E., Brayne, C. et al. (2012) Multiple biological pathways link cognitive lifestyle to protection against dementia. Biological Psychiatry. 71(9): 783–791. Verghese, P.B., Castellano, J.M. and Holtzmann, D.M. (2011) Apolipoprotein E in Alzheimer’s disease and other neurological disorders. Lancet Neurology. 10(3): 241–252.

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Wilson, R.S., Barnes, L.L., Mendes de Leon, C.F. et al. (2002) Depressive symptoms, cognitive decline, and risk of Alzheimer’s disease in older persons. Neurology. 59(3): 364–370. World Health Organization (1992) The ICD-10 Classification of Mental and Behavioural Disorders: Clinical Descriptions and Diagnostic Guidelines. Geneva: WHO. Xie, J., Brayne, C. and Matthews, F.E. (2008) Survival times in people with dementia: analysis from population-based cohort study with 14 year follow-up. British Medical Journal. 336: 258–262. Zarowitz, B.J., O’Shea, T. and Nance, M. (2014) Clinical, demographic, and pharmacologic features of nursing home residents with Huntington’s disease. Journal of the American Medical Directors Association. 15(6): 423–428.

Chapter 2

Diagnosis of Dementia Malarvizhi Babu Sandilyan and Tom Dening

Learning objectives By the end of this chapter you will: • Understand the two components involved in a diagnosis of dementia: is this dementia and, if so, what is the cause? • Know about the cognitive tests in common use. • Understand how the diagnosis is made and communicated to the person and their family. • Be aware of international diagnostic criteria for different causes of dementia.

Introduction When a person experiences memory loss or other features of dementia, they are usually referred for a specialist assessment. This is usually done by clinicians who have expertise and knowledge in memory assessments. The diagnosis of dementia is a two-stage process: first, to establish if the person has a dementia syndrome and, second, to determine the likely cause of dementia. The two stages involve obtaining a detailed history from the person and their family, performing mental state and physical examination and undertaking relevant investigations. There are a number of other conditions which can mimic the presentation of dementia (such as vitamin deficiencies, infections and metabolic disorders) which should be ruled out by relevant investigations.

Assessment of dementia – the patient’s journey The importance of diagnosing dementia has been emphasised by the National Dementia Strategy (Department of Health 2009), which requires 27

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that dedicated memory services should be available across the country. The key components of a memory assessment service are: • Early identification and referral of people with a possible diagnosis of dementia • Providing a high-quality service for dementia assessment, diagnosis and management. The clinicians in a memory clinic usually comprise doctors (geriatricians or neurologists or old age psychiatrists), specialist nurses, psychologists, occupational therapists and social workers. The setup is quite variable across the country. Assessments may take place at the person’s home, in a hospital clinic or in a GP surgery. During the initial assessment information is collected about the background of the person, their general functioning, other health problems, list of medications and details about their memory complaints alongside any other mood or anxiety complaints. Questionnaires to assess mood and anxiety symptoms or the person’s level of functioning may be used. Vital information is gathered from an informant, usually a family member, regarding all the above, with the permission of the person. This follows on to certain cognitive tests to assess memory function. Investigations including blood tests and brain scans are performed, if indicated, and to rule out any reversible causes of cognitive impairment.

Cognitive testing Simple tests The most commonly used test is the Mini Mental State Examination (MMSE) which comprises questions and tasks that assess memory, language, attention etc. The total score is out of 30 and a score of 26 or below is considered to be suggestive of dementia. Scores of 17–25 approximate to mild dementia, and below 10 is considered to be severe dementia. There are copyright issues with the MMSE, which have led to the increased use of alternatives, such as the Montreal Cognitive Assessment (MoCA; Nasreddine et al. 2005). There are also some very brief tests that may be used, for example Test Your Memory (TYM; Brown et al. 2009) which is done by the patient, or clock drawing (Sunderland et al. 1989) which, although simple, in fact tests several areas of cognition.

Diagnosis of Dementia

ACE-R The Addenbrooke’s Cognitive Examination – Revised (ACE-R), which is widely used, is a short test battery with more detailed tests on cognitive domains such as memory, attention, language and spatial orientation. It encompasses the MMSE. The total score is out of 100 and anything less than 82 is considered to indicate a diagnosis of dementia. A recent alternative, which does not contain the MMSE, is the ACE-III (Hsieh et al. 2013).

Limitations These tests have certain limitations. For example, factors such as educational status, culture, language and hearing/eyesight problems can affect scores. Simple tests also do not assess the special functions of the frontal regions of the brain characteristic of frontotemporal dementia (FTD). The diagnosis of dementia is a clinical judgement and scores on cognitive tests only supplement this.

Other neuropsychological tests Neuropsychological testing may be used for other purposes, for example to establish premorbid IQ in people whose scores are excessively high or low on the MMSE in relation to their level of everyday functioning; to determine whether the pattern of cognitive deficits is consistent with Alzheimer’s disease (AD) or another type of dementia; and to distinguish them from changes due to normal ageing. These include various tasks such as recalling paragraphs, copying pictures and tests of reasoning. They are usually administered by a psychologist and may take at least two hours.

Other clinical assessments It is important to assess the person’s level of everyday functioning, that is, in terms of activities of daily living (ADL). Probably the best ADL scale for dementia is the Bristol ADL Scale (BADLS; Bucks et al. 1995). By far the most popular scale for recording non-cognitive (or behavioural and psychological) symptoms of dementia is the Neuropsychiatric Inventory (Cummings et al. 1994).

Blood test and physical investigations As mentioned in Chapter 1, there may be some potentially reversible causes such as abnormalities in vitamin and calcium levels or hormonal

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imbalance that can cause memory impairment. To exclude such causes for cognitive impairment the following investigations should be considered for the person. Blood tests usually performed in general practice prior to a memory clinic referral: • Full blood count – to identify anaemia and signs of infection • Erythrocyte sedimentation rate (ESR), C Reactive Protein (CRP) – to determine infection, inflammatory responses • Thyroid hormone (T4) and thyroid stimulating hormone (TSH) – hypothyroidism can present with memory difficulties • Biochemical screen – including urea and creatinine (renal function), electrolytes, liver function tests, and albumin. For example, disturbances in sodium can lead to memory impairment • Glucose – to identify diabetes • B12 vitamin and folate levels – deficiencies in these vitamins can produce memory disturbances. Other possible blood tests (though not routinely requested) include syphilis serology and HIV testing, which can present with marked cognitive impairment. Investigations such as chest x-ray, electrocardiograph (ECG) and urine tests are also requested if needed.

Structural neuroimaging Computed tomography (CT) and magnetic resonance imaging (MRI) scans are mainly used to detect causes of dementia such as stroke, brain tumour, multiple sclerosis or brain haemorrhage. They may appear normal in early stages of Alzheimer’s disease. Certain special views of the brain can identify early tissue loss which begins in the hippocampus, which is a structure of the medial temporal lobe. The scans may show characteristic patterns of brain tissue loss in the later stages of AD or FTD.

Functional neuroimaging Functional MRI, positron emission tomography (PET) and single photon emission computed tomography (SPECT) scans give a visual picture of the metabolic activity and blood flow in different regions of the brain. This can help to distinguish between different types of dementias, though

Diagnosis of Dementia

these techniques are not universally available. Other scans can help with a specific diagnosis, for example amyloid scans and DAT (dopamine active transporter) scans for Alzheimer’s disease and Parkinson’s disease/ dementia with Lewy bodies respectively.

Is this really dementia? There are many conditions that can mimic the presentation of dementia. Normal ageing-related forgetfulness, poor educational attainment, learning difficulties, drugs, deafness and poor vision are some conditions that have to be considered. Two other important differential diagnoses to be considered during the initial assessment are depression and delirium. Depression may present as cognitive impairment, which if severe is sometimes referred to as pseudo-dementia. This is at least partly due to impaired attention which is common in depression and can appear as poor memory. Depression itself has been suggested as an independent risk factor for dementia and some studies report that people who suffer from pseudo-dementia are at risk of developing dementia later in their life (Steffens et al. 2014). Delirium or acute confusional state can present as cognitive impairment and may co-exist with dementia. Delirium is usually associated with an underlying physical cause so obviously its management needs to start with looking for the cause and dealing with it appropriately. A person presenting with delirium often has reversal of their usual sleep–wake pattern and poor attention. They present as agitated, distractible and also with psychotic symptoms such as delusions and hallucinations. People with delirium need to be identified promptly to ensure they receive adequate nursing care and for any treatable cause, such as an infection or pain, to be corrected.

Sharing the diagnosis of dementia Once a reasonably confident diagnosis of dementia has been made, together with an assessment of the likely underlying cause, the diagnosis should be communicated to the patient and their carers and supporters as sympathetically as possible. Although the NHS has put much emphasis on diagnosis rates for dementia, it is important to consider that diagnosis is not really an end in itself, and it is what happens subsequently that matters more. There should be an opportunity for the patient and their family to ask questions as part of this post-diagnostic counselling, as these may only come to mind after the clinic appointment. People should be signposted

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to good sources of information, such as the Alzheimer’s Society website (www.alzheimers.org.uk) or IDEA (Improving Dementia Education and Awareness; www.idea.nottingham.ac.uk). There are numerous issues that may require discussion, for example: possibilities for drug treatments, opportunities to participate in research, driving, financial and legal arrangements (wills and Lasting Powers of Attorney), and future living and care arrangements (see Chapters 13 and 14).

Support at home Being diagnosed with dementia can be a life-changing event and it is important that adequate support is given at home. This can be in the form of visits by psychiatrists, psychiatric nurses, Admiral Nurses, social workers and carers to provide practical support. The psychiatrists and Admiral Nurses will be able to help the person maintain a sense of well-being, and the social worker can look into any financial assessments such as attendance allowances. Maintaining the person’s independence in their own home should be the pivotal point of providing care and support at home.

Prognosis of dementia As dementia is a neurodegenerative condition it is progressive in nature and can be classified into mild, moderate and severe stages. Table 2.1 details the common symptoms seen in various stages of dementia. Table 2.1: The course of dementia and the features seen at each stage Cognitive symptoms

Mild dementia

Moderate dementia

Severe dementia

Difficulty in learning new information

Progressive memory loss worsening

Severe memory loss

Difficulty in finding the right words

Difficulty in using word and phrases in a meaningful way

Poor attention

Inability to recognise objects and faces

Profound loss of ability to perform purposeful actions Inability to identify day-to-day objects and familiar faces Severe language problems

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Diagnosis of Dementia

Functional impairment

Misplacing items Forgetting appointments and recent conversations Taking longer to do complex mental activities Being repetitive

Difficulty in doing normal routine work, e.g. cooking, laundry, using telephone Losing the way in familiar places Unable to have a coherent and fluent conversation Difficulty in handling money

Noncognitive symptoms

Apathy or lack of motivation

Unable to recognise even close family members Unable to perform basic activities such as feeding, toileting, dressing etc. Urinary and faecal incontinence Swallowing difficulties

Delusions

Wandering

Anxiety

Increasing social withdrawal

Agitation

Low mood

Irritability

Verbal and physical aggression

Depression

Disinhibited behaviour

Sleep disturbances

Depression

Loss of appetite

Hallucinations (perceptions without stimuli) Delusions (false beliefs)

Eventually dementia leads to illnesses associated with frailty, dependency and poor swallowing, so the commonest cause of death is pneumonia. Life expectancy after a diagnosis is variable as it depends on the age of the person and the presence of other comorbid health problems. Xie et al. (2008) estimated that the median survival rate for incident (newly occurring) dementia was 4.5 years, ranging from 10.7 years for ages 65–69 to 3.8 years for people aged over 90 (see Chapter 20).

Diagnostic criteria Both the main systems in current use, ICD-10 and the American DSMIV, use the following criteria to determine whether there is a dementia syndrome: 1. Multiple cognitive deficits – this means there are problems in more than one cognitive domain, such as memory, language, spatial orientation, organisational skills etc. Amnesia or memory

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impairment for learning new information or recalling previously learned information must be one of the core features. 2. Functional impairment – this means there is difficulty in maintaining the ability to perform routine activities at work or at home, or socially due to the cognitive deficits. 3. Change from a previous level – there must be a clear decline in this functional impairment when compared to previous abilities with progressive decline. 4. Clear consciousness – the person must be alert and without any disturbance in consciousness. Altered levels of consciousness can occur in acute confusional states or delirium. For diagnosing different types of dementia, there are several international classification systems derived both for research and clinical use. As Alzheimer’s disease (AD) is the commonest and most important cause of dementia, let us consider it in more detail. In the WHO’s International Classification of Diseases (ICD-10), the following criteria need to be met in order to arrive at a diagnosis of AD: • Gradual onset and prolonged duration – the symptoms should have occurred gradually with progressive decline with duration of at least six months. • There is no evidence of any other neurological or systemic disease that can explain the symptoms of dementia. Until recently, the most influential criteria for diagnosing AD have been the National Institute of Neurological and Communicative Disorders and Stroke and the Alzheimer’s Disease and Related Disorders Association criteria (known as the NINCDS-ADRDA criteria or the McKhann criteria after the first author when they were published in 1984). These criteria require that the presence of cognitive impairment and a suspected dementia syndrome be confirmed by neuropsychological testing for a clinical diagnosis of possible or probable AD, while they need histopathological confirmation (microscopic examination of brain tissue) for a definite diagnosis. Criteria for diagnosing AD have recently been updated by an international working group (Dubois et al. 2010) and by the National Institute of Aging (NIA) and the Alzheimer Association in the USA.1 There are two main reasons for doing this. One is the availability of biomarkers, 1 See www.alz.org/research/diagnostic_criteria/#overview.

Diagnosis of Dementia

such as brain imaging (magnetic resonance imaging or positron emission tomography) and cerebrospinal fluid proteins, and the other reason is to do with increasing interest in earlier diagnosis of AD, either at the stage of mild cognitive impairment or indeed before any cognitive impairment has developed at all. Nowadays, because of the availability of biomarkers (e.g. having one of the genes that is known to cause AD), it is not always necessary to wait until a dementia syndrome has developed to make a fairly confident diagnosis of AD. Four sets of criteria have now been published by the NIA/Alzheimer Association group: • Diagnosis of dementia due to AD (McKhann et al. 2011) • Diagnosis of mild cognitive impairment (MCI) due to AD (Albert et al. 2011) • Towards defining the preclinical stages of AD (Sperling et al. 2011) • Neuropathologic assessment of AD (Hyman et al. 2012). The first two sets of criteria are intended for clinical and research purposes, and can be applied even if access to specialised facilities (neuropsychology, imaging, biomarkers) is limited. The preclinical guidelines are intended for research use only, and the pathological criteria are also for specialised use.

Criteria for other types of dementia A group of Lewy body disease specialists convened in 1995 at an international workshop on dementia with Lewy bodies (DLB), and issued consensus guidelines for clinical and pathological diagnosis (McKeith et al. 1996). The same DLB Consortium reviewed the criteria in 2005 (McKeith et al. 2005). In addition to progressive dementia syndrome, additional criteria included were persistent visual hallucinations, fluctuation in the cognitive functioning and spontaneous Parkinsonian motor symptoms. Other secondary features that add weight to the diagnosis are rapid eye movement (REM) sleep disorder, frequent falls and sensitivity to neuroleptics. In 2017, an update on the diagnostic criteria for DLB was published (McKeith et al. 2017) where greater weight is given to REM (rapid eye movement) sleep disorder, and hypersomnia and hyposomnia are newly added supportive features. Similarly the diagnostic criteria for other important forms of dementia are listed, with references, in Table 2.2.

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Table 2.2: International diagnostic criteria for the important causes of dementia Disorder

Title

Author

Year

Comments

Alzheimer’s disease

International Working Group for New Research Criteria for the diagnosis of AD (sometimes just referred to as the Dubois criteria)

Dubois et al.

2010

Update of criteria published in 2007

NIA-AA (National Institute of Aging & Alzheimer’s Association)

Jack et al.

2011

This paper is an introduction to other papers with detailed criteria (referred to in our main text)

Vascular dementia

NINDS-AIREN (National Institute of Neurological Disorders and Stroke & Association Internationale pour la Recherche at l’Enseignement en Neurosciences)

Roman et al.

1993

Dementia with Lewy bodies

DLB Consortium

McKeith et al.

2017

Dementia in Parkinson’s disease

Movement Disorders Society Task Force

Emre et al.

2007

Fronto temporal dementia

Lund-Manchester criteria

Neary et al.

1998

Update of previous criteria, 1992, 1996, 2000, 2005

Update of previous criteria, 1994

Mild cognitive impairment (MCI) For many years it has been recognised that some people have relatively mild memory loss or other forms of cognitive impairment that do not cause sufficient day-to-day impairment to warrant a diagnosis of dementia. Several terms have been used to describe this clinical picture but the one in current usage is mild cognitive impairment or MCI. One reason for increased attention to this group is the realisation that people who have early signs of disorders like AD will go through a stage of MCI,

Diagnosis of Dementia

so perhaps it will be possible to detect AD early and perhaps treatment at this stage may be more effective than later on, by which time the person has significant brain damage. MCI is not therefore a disease or even really a mental disorder as people with it are functioning more or less normally. It is also likely to be due to a mixture of causes, among which the early signs of Alzheimer’s disease is just one. Research has shown that people with MCI have an increased risk of developing dementia but it is by no means certain. About 10 per cent of people with MCI have a diagnosis of dementia 12 months later. However, for some people, the impairment of MCI remains fairly static over time and indeed some people seem to improve and move out of MCI back into the normal range at follow-up. Therefore, the best way of looking at MCI is as a state of being at risk of dementia. It might be supposed that offering treatment to people with MCI would be a good idea as it is in general best interests to treat diseases at the earliest possible stage. However, presumably due to the fact that MCI is such a heterogeneous group, the results of trials with cholinesterase inhibitors have been disappointing, with no evidence that they offer any protection to prevent patients from going on to develop dementia (e.g. Petersen et al. 2005). Nonetheless, MCI remains an area of great interest and there is promising research in using brain training to improve cognition (Savulich et al. 2017). Any treatment that could delay people’s transition from MCI to overt dementia would have an immense public health impact.

Neurocognitive disorder – alternative term to dementia? In 2013, the American Psychiatric Association published the fifth edition of its Diagnostic and Statistical Manual (DSM5). Among several other radical changes, DSM5 proposed a new entity of Neurocognitive Disorder (NCD) as an alternative to dementia. The reasoning behind this was that the new term would be less stigmatising than dementia but also that it would encompass disorders that do not necessarily have a progressive course, for example the effects of head injuries. It is also intended that whether someone has NCD should be derived psychometrically, that is, how far from the normal range of performance they fall. The key criteria for NCD are: • significant cognitive disorder • interference with independence

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• not due to delirium • not due to other mental disorder. NCD is divided into major and minor forms, of which major NCD equates to dementia and minor NCD resembles MCI. Alongside NCD, the clinician would need to specify the underlying disease, for example AD, for which there are separate criteria. However, clinicians are still permitted to use the term ‘dementia’ if that seems more appropriate. There have been various criticisms of DSM5, the strongest of which is that it seems to medicalise aspects of ordinary life, and this is probably true of NCD, which clearly covers more people than previous criteria for dementia. It is of course unproven whether the term will be any more satisfactory in everyday use than the word ‘dementia’, which at least people understand reasonably well.

CASE STUDY: EDITH Edith, aged 75, has been noticed to be more forgetful than usual. She is unable to pay attention at her voluntary work and has been misplacing things for the last two months. Her husband died eight months ago and since then she cannot sleep well at night. She feels tired during the day. She is seen in the memory clinic and is unable to finish the long tests as ‘it is too much’ for her.

STOP AND REFLECT What could be the possible reasons for Edith’s memory loss? How do you think the loss of her husband would impact on Edith’s well-being and functioning? What information would you like to know about Edith as part of her assessment? Are there any tests you will consider as part of her investigations?

CASE STUDY: JAMES James is a retired engineer, aged 83. His wife has urged him to attend the memory clinic as he sometimes forgets his appointments. Apart from this, he seems to be functioning very well and driving around as he used to do. He is cheerful in his mood and maintains good health.

Diagnosis of Dementia

STOP AND REFLECT What do you consider as James’ condition of mild memory loss? What further process will you consider as part of his assessment? How will you support James and his wife?

CASE STUDY: KATHLEEN Kathleen is a 69-year-old woman returning to the memory clinic after four weeks following her initial assessment for memory loss that has been gradually progressing for one year. Her son is now concerned that his mother has locked herself out twice and once had to be brought back to her home by a neighbour as she got lost in the town. They want to know what provisions they need to consider planning for her future.

STOP AND REFLECT How will you communicate the diagnosis of dementia to Kathleen and her family? What factors will you consider while supporting them through this? How do you think the diagnosis of dementia will impact on her and her family? What practical/legal steps will you advocate to them in order to promote her well-being and safety?

References Albert, M.S., DeKosky, S.T., Dickson, D. et al. (2011) The diagnosis of mild cognitive impairment due to Alzheimer’s disease: recommendations from the National Institute on Aging–Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s and Dementia. 7(3): 270–279. Brown, J., Pengas, G., Dawson, K. et al. (2009) Self-administered cognitive screening test (TYM) for detection of Alzheimer’s disease: cross-sectional study. British Medical Journal. 338: b2030. Bucks, R.S., Ashworth, D.L., Wilcock, G.K. and Siegfried, K. (1995) Assessment of activities of daily living in dementia: development of the Bristol Activities of Daily Living Scale. Age and Ageing. 25: 113–120. Cummings, J.L., Mega, M., Gray, K. et al. (1994) The neuropsychiatric inventory: comprehensive assessment of psychopathology in dementia. Neurology. 44: 2308–2314. Department of Health (2009) Living Well with Dementia: A National Dementia Strategy. London: Department of Health.

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Dubois, B., Feldman, H.H., Jacova, C. et al. (2010) Revising the definition of Alzheimer’s disease: a new lexicon. Lancet Neurology. 9: 1118–1127. Emre, M., Aarsland, D., Brown, R. et al. (2007) Clinical diagnostic criteria for dementia associated with Parkinson’s disease. Movement Disorders. 22(12): 1689–1707. Hsieh, S., Schubert, S., Hoon, C. et al. (2013) Validation of the Addenbrooke’s Cognitive Examination III in frontotemporal dementia and Alzheimer’s disease. Dementia and Geriatric Cognitive Disorders. 36(3): 242–250. Hyman, B.T., Phelps, C.H., Beach, T.G. et al. (2012) National Institute on Aging– Alzheimer’s Association guidelines on neuropathologic assessment of Alzheimer’s disease. Alzheimer’s and Dementia. 8(1): 1–13. Jack, C.R., Albert, M.S., Knopman, D.S. et al. (2011) Introduction to the recommendations from the National Institute on Aging: Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s and Dementia. 7(3): 257–262. McKeith, I.G., Galasko, D., Kosaka, K. et al. (1996) Consensus guidelines for the clinical and pathologic diagnosis of dementia with Lewy bodies (DLB): report of the consortium on DLB international workshop. Neurology. 47: 1113–1124. McKeith, I., Dickson, D.W., Lowe, J. et al. (2005) Diagnosis and management of dementia with Lewy bodies: third report of the DLB Consortium. Neurology. 65(5): 1863–1872. McKeith, I.G., Boeve, B.F., Dickson, D.W. et al. (2017) Diagnosis and management of dementia with Lewy bodies: fourth consensus report of the DLB Consortium. Neurology. 89(1): 88–100. McKhann, G.M., Knopman, D.S., Chertkow, H. et al. (2011) The diagnosis of dementia due to Alzheimer’s disease: recommendations from the National Institute on Aging– Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s and Dementia. 7(3): 263–269. Nasreddine, Z.S., Phillips, N.A., Bédirian, V. et al. (2005) The Montreal Cognitive Assessment, MoCA: a brief screening tool for mild cognitive impairment. Journal of the American Geriatrics Society. 53(4): 695–699. Neary, D., Snowden, J.S., Gustafson, L. et al. (1998) Frontotemporal lobar degeneration: a consensus on clinical diagnostic criteria. Neurology. 51(6): 1546–1554. Petersen, R.C., Thomas, R.G., Grundman, M. et al. (2005) Vitamin E and donepezil for the treatment of mild cognitive impairment. New England Journal of Medicine. 352: 2379–2388. Roman, G.C., Tatemichi, T.K., Erkinjuntti, T. et al. (1993) Vascular dementia: diagnostic criteria for research studies: report of the NINDS-AIREN International Workshop. Neurology. 43: 1609–1611. Savulich, G., Piercy, T., Fox, C. et al. (2017) Cognitive training using a novel memory game on an iPad in patients with amnestic mild cognitive impairment (aMCI). International Journal of Neuropsychopharmacology. 20(8): 624–633. Sperling, R.A., Aisen, P.S., Beckett, L.A. et al. (2011) Toward defining the preclinical stages of Alzheimer’s disease: recommendations from the National Institute on Aging– Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s and Dementia. 7(3): 280–292. Steffens, D.C., McQuoid, D. and Potter, G.G. (2014) Amnestic mild cognitive impairment and incident dementia and Alzheimer’s disease in geriatric depression. International Psychogeriatrics. July 17: 1–8. Sunderland, T., Hill, J.L., Mellow, A.M., Lawlor, B.A., Gundersheimer, J., Newhouse, P.A. et al. (1989) Clock drawing in Alzheimer’s disease: a novel measure of dementia severity. Journal of the American Geriatrics Society. 37: 725–729. Xie, J., Brayne, C. and Matthews, F.E. (2008) Survival times in people with dementia: analysis from population-based cohort study with 14 year follow-up. British Medical Journal. 336: 258–262.

Chapter 3

Medical Treatment and Management of Patients with Dementia Malarvizhi Babu Sandilyan and Tom Dening

Learning objectives By the end of this chapter you will: • Understand the importance of sharing medical and health-related information around the time of diagnosing dementia. • Know the drug treatments for cognitive symptoms in dementia, in particular the cholinesterase inhibitors (donepezil, galantamine and rivastigmine), their uses and limitations. • Understand the behavioural and psychological symptoms in dementia and the medical treatment for these, alongside nonpharmacological approaches. • Recognise the importance of other medical conditions and their management in maintaining quality of life for people with dementia.

Principles of treatment and management in dementia In the past, the medical model of dementia regarded decline as inevitable and changes in the person’s behaviour as unconscious, neurological events. However, modern approaches to care draw on the person-centred model introduced by Kitwood (Brooker and Latham 2016). This focuses much more on findings from social psychology that other people (families, care staff etc.) and the culture of institutions (care homes and hospitals) have a profound influence upon the person with dementia. Within this culture, such issues as behaviour are regarded as attempts at communicating 41

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personal needs, and therefore in need of understanding, rather than medical events that require a medical response. The current UK guidance (NICE Guideline 42; NICE 2006) covers all aspects of health and social care in dementia and has been updated with the most recent Technology Appraisal on anti-dementia drugs (NICE 2011). This guidance was reviewed and updated during 2018 (NICE 2018). This chapter considers medical aspects of management of dementia, and is in three parts: treatment for cognitive symptoms; management of non-cognitive symptoms (behavioural and psychological symptoms of dementia); and treatment of other medical conditions (medical comorbidity) in people with dementia. The issues requiring most attention vary with the stage of dementia, as shown in Box 3.1. Box 3.1: Key issues for management at different stages of dementia • Early stages –– living with dementia in the community –– coming to terms with the diagnosis –– impact upon families –– planning for the future –– treatment of cognitive symptoms • Later stages –– behaviour problems or comorbid illness more prominent –– personal care –– may include care homes –– end-of-life care

Early dementia As mentioned in Chapter 2, the time of diagnosis is an important opportunity for imparting information and setting up plans for the future. This includes giving information about dementia and its course, finances, and the availability of care and support for patients and their families.

Medical Treatment of Patients with Dementia

There is good evidence to support general health measures such as diet, physical exercise, purposeful activities and optimising management of medical conditions (hypertension, diabetes etc.) in order to promote mental and physical well-being. Cognitive stimulation therapy has been shown to be useful in the early stages of dementia (Spector et al. 2003). Reminder systems and use of technology to assist activities of daily living also seem to be helpful. It is salutary, however, that despite the emphasis placed on early diagnosis, there is little evidence that it provides benefits in terms of health outcomes (e.g. reducing mortality or delaying institutionalisation) (Dubois et al. 2016; Pimouget et al. 2016).

Medical treatment of cognitive disorder Current practice in treating Alzheimer’s disease (AD) is guided by NICE Technical Appraisal 217 (2011). The drugs used most often are the three acetylcholinesterase inhibitors (AChEIs), donepezil, rivastigmine and galantamine, which are licensed for use in mild to moderate AD. They increase the amount of acetylcholine at sites of neural transmission. Rivastigmine is also licensed for mild to moderate stages of dementia with Lewy bodies (DLB) and Parkinson’s disease dementia. It is unclear if this is a specific effect of this drug or simply reflects that the only clinical trials performed in these disorders have used rivastigmine (McKeith et al. 2000; Emre et al. 2004). Donepezil (Aricept) is also available in an orodispersible form, which is potentially useful for people with swallowing problems. The initial dose is 5mg daily, which is increased to 10mg after a few weeks. Rivastigmine (Exelon) comes in four different tablet sizes (1.5–6mg). The dose is titrated upwards starting with 1.5mg twice daily. Transdermal patches are available, which can help with compliance. Galantamine (Reminyl) has a starting dose of 8mg, increasing up to 24 mg daily. There is an extended release preparation available, which enables a single daily dose regime. Galantamine is also available as an oral solution. A fourth drug, memantine, has a different mode of action. Memantine is an NMDA (N-methyl-D-aspartate) receptor antagonist which helps protect against excess action of the excitatory transmitter glutamate. The usual starting dose is 10mg daily increasing to 20mg. It is licensed in moderate to severe AD. Memantine is indicated in moderate to severe AD for those who are intolerant of or have contraindications to AChEIs.

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Treatment in practice All three AChEIs have similar side effects, the commonest being due to their cholinergic effects on the gastrointestinal system, most often nausea or dyspepsia or diarrhoea. These are related to the dose of the drug, so sometimes a patient will tolerate a lowered dose. More serious, though rare, side effects are various forms of heart block: heart rate and ECG is often monitored during treatment. AChEIs have alerting effects and can cause sleep disturbance, nightmares or even hallucinations. Usually, an AChEI is tried for 8–12 weeks and treatment is only continued if there is improvement in cognitive, functional or behavioural symptoms. However, patients may decline on stopping an AChEI even at later stages of dementia (Howard et al. 2012), so current practice is to continue AChEIs indefinitely or at least until the end of life is nearing. There is little good evidence that adding memantine to AChEI treatment yields any benefit (Rodda and Carter 2012) but doing so seems to be quite common practice. AChEIs are probably also effective in mixed AD/vascular dementia (VaD) but not in pure VaD.

Are AChEIs useful? AChEIs have an alerting, attentional effect causing the person to be more focused and spontaneous rather than enhancing their memory. There is no evidence to suggest AChEIs are able to delay the rate of decline or institutionalisation or increase survival rates in AD or other forms of dementia. The treatment effects are slight – the mean difference between treatment and placebo groups is about 1–1.5 points on the MMSE, which is barely discernible at an everyday level (Howard et al. 2011) – and the dementia progresses notwithstanding the treatment.

Other treatments A range of other substances have been investigated for the treatment of dementia, but there is no good evidence of effectiveness. These include immunotherapies, for example monoclonal antibodies; drugs licensed for other conditions, for example non-steroidal anti-inflammatory drugs, hormones, COX-2 inhibitors and calcium channel blockers; and nutritional and herbal treatments, for example ginkgo biloba, vitamin E and nutraceuticals (medical foods) such as Souvenaid, which are available over the counter.

Medical Treatment of Patients with Dementia

Treatment of non-cognitive symptoms Behavioural and psychological symptoms of dementia (BPSD) are common and play an important part in determining the outcome of dementia, especially during the later stages of the condition (see Chapter 1). BPSD can be grouped into psychotic features, mood disturbances, biological symptoms (changes to sleep and eating pattern) and behavioural changes (agitation, aggression, apathy, wandering etc.).

Psychosis Delusions, hallucinations and misidentifications are quite common in dementia, especially visual hallucinations in DLB. They seem often to arise from impaired processing and recall of sensory and other information. For example, misinterpreting reflections in a window or on the TV screen can lead to the belief that there are other people in the room. Delusions of theft often seem to be an attempt at explaining why something is missing when they have forgotten that they moved it (or indeed, they may have hidden it because of fear of it being stolen, and now can’t find it at all). Not all psychotic symptoms require medical treatment, especially the isolated hallucinations (Charles Bonnet syndrome) that can occur with sensory impairment and relatively little cognitive disturbance. In such cases, antipsychotic drugs are ineffective and potentially harmful. Hallucinations and delusions can usually be managed by remaining calm and engaging with the person to reassure them of reality or distract them to other topics or activities, or sometimes simply being with them while they are having the experience. However, if persistent delusional ideas, for example that there are intruders in the house, lead to excessive arousal and potentially dangerous or aggressive behaviour, then it is necessary to consider medication.

Antipsychotic drugs There is particular concern about the prescribing of antipsychotic drugs for people with dementia, especially when the problem is not psychosis but is instead agitated or aggressive behaviour. This group of drugs may be associated with severe side effects, including stroke and death. Banerjee (2009) estimated that about 180,000 people with dementia were receiving antipsychotic drugs in the UK, and this was probably responsible for about 1800 additional deaths and a similar number of strokes. As a result, there have been strenuous efforts nationally to reduce prescribing of antipsychotics, especially in care homes, and to limit the duration of treatment if they are prescribed.

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NICE guidance on dementia advises against the use of antipsychotics for non-cognitive symptoms or challenging behaviour of dementia unless the person is severely distressed or there is an immediate risk of harm to them or others. The MHRA (Medicines and Healthcare products Regulatory Agency) advised that no antipsychotic (with the exception of risperidone in some circumstances) is licensed in the UK for treating BPSD. However, antipsychotics are often prescribed off-label for this purpose. The smallest possible doses of antipsychotics should be used given that people with dementia are often older, frail and sensitive to side effects. People with DLB are particularly sensitive to side effects and caution is required in treating this condition. Generally the atypical antipsychotic drugs are used, the commonest side effects being sedation, postural hypotension leading to falls, or motor side effects (stiffness, slowness or tremor). Antipsychotic drugs should be given for the shortest period possible, not more than 12 weeks.

Mood-stabilising drugs A recent systematic review (Yeh and Ouyang 2012) that looked into the role of mood-stabilising drugs concluded that there is lack of evidence for the use of valproate, lithium, lamotrigine, topiramate and oxcarbamazepine. There is very limited evidence that gabapentin can reduce agitation in dementia but the side effect of sedation should be considered. There is evidence that carbamazepine can alleviate symptoms of BPSD but it may have some serious side effects (e.g. blood dyscrasias or the Stevens–Johnson syndrome, which is a painful condition causing a rash and blistering to skin and mucous membranes) and interactions with other drugs, and these make it less suitable for use with older people.

Depression Depression often coexists with dementia and is sometimes an understandable consequence of the losses that accompany developing dementia. Those with a family history or previous episodes of depression are at increased risk for developing major depressive episodes during the course of the disease process. Diagnosing depression can be challenging, as many depressive symptoms such as sleep disturbances, loss of appetite and weight loss are common occurrences in dementia itself. In addition, apathy, which is a common feature in dementia, can often be mistaken for depression. While mild degree of mood change can be managed by psychosocial measures, clinical depression should be treated with antidepressants.

Medical Treatment of Patients with Dementia

However, it is possible that antidepressants are less effective in depression with dementia than in ‘ordinary’ depression (Dudas, Malouf and Dening 2018), and people with dementia are more sensitive to side effects. Symptoms often seem to resolve spontaneously irrespective of treatment (Banerjee et al. 2011); they are also liable to recur. The commonly used drugs are serotonin reuptake blockers, such as citalopram and sertraline, or mirtazapine, which increase serotonergic and noradrenergic transmission. Another form of mood disturbance, common in VaD, is emotionalism, where the person’s affect is extremely labile. Characteristically, they are suddenly moved to tears by minor events or indeed perhaps with no obvious precipitant. The rest of the time, however, they are not persistently depressed. If this state is troublesome, then antidepressants may be of some benefit.

Sleep disorders The architecture of sleep changes with normal ageing, with increased nocturnal waking and a tendency to take day-time naps. This is exaggerated in dementia, and alterations in circadian rhythm often lead to increased day-time somnolence and reduced night-time sleep. The so-called ‘sundowning effect’ (increased agitation during late afternoon and evening) can cause distress for carers and may even lead to institutionalisation. Before giving night sedation, one should consider the person’s pattern of day-time and evening activity, and also their expectations. Nonprescription alternatives, such as herbal remedies, and sleep hygiene measures should be considered before prescribing sleeping tablets, such as zopiclone, albeit for short periods or intermittently. Tolerance can develop and side effects (over-sedation and falls) are quite common. Small doses of clonazepam (0.25 or 0.5mg) may be effective for REM (rapid eye movement) sleep disorder in DLB. Restless legs syndrome may be treated with dopamine antagonists or benzodiazepines. Apart from these specific indications, benzodiazepines are generally not advised in dementia as they are associated with accelerated cognitive decline (Defrancesco et al. 2015).

Changes in eating and appetite These include reduction or increase in appetite, altered frequency of eating, improper use of cutlery to feed oneself, preference (or even craving) for sweet foods or tendency to eat inedible substances. People with dementia may also display ‘oral behaviour’, which is a tendency to explore objects with the lips and/or eating inappropriate food items. Cognitive impairment also may result in difficulties in recognising food and cutlery. Depression

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or apathy may cause a loss of appetite, as can other medical conditions or constipation. In more advanced dementia, people will require more help with obtaining and eating food, and difficulties with chewing and swallowing become common in end-stage dementia (see Chapter 20). If lack of appetite persists, it leads to loss of weight and malnutrition. It is important to identify any underlying physical health issues and treat them if possible. Leaving snacks within the reach of the person may encourage them to eat more. Dietitians can advise on a meal plan suited to the person’s needs, for example thickened or pureed and enriched foods. Swallowing assessments by speech and language therapists are also valuable in managing people with severe dementia. Feeding tubes are not commonly used in the UK as they do not prolong life and can have their own complications.

Behavioural disturbances These are sometimes referred to as ‘behaviour that challenges’. Agitation is the combination of painful inner tension with excessive motor activity, and it may or may not be associated with aggression. It may include wandering, rummaging around, repetitive behaviours (e.g. cleaning), or moving furniture. Overt, directed aggression is far less common than anger or irritability when a person is disturbed during personal care and meal times. A friendly, respectful approach towards diverting the patient’s attention can help. It is important to look for possible underlying causes, such as pain (see Chapter 19), depression or psychotic symptoms that may cause agitation. An analysis of the behaviour focusing on the antecedent, behaviour and the consequences (ABC) will help in understanding and managing such behaviours. Modern approaches to managing difficult behaviour look at it as a form of attempted communication by someone with severe cognitive impairment. Some specific types of behaviour that family carers might find challenging are considered in the following subsections. However, the same general approach can be applied to most behaviour problems, consisting of three components: • Preventative strategies: these include a range of approaches (see Box 3.2), for which the Cochrane Library1 holds reviews of the supporting evidence. • Intervention strategies: also see Box 3.2. 1 See http://dementia.cochrane.org.

Medical Treatment of Patients with Dementia

• Pharmacological management: summarised in Box 3.3. General principles of prescribing for people with dementia apply – avoid initiating drug treatment if possible, use small doses initially, monitor for side effects and stop if possible. Box 3.2: Preventative and intervention strategies for behaviour problems Preventative • Reality orientation • Reminiscence therapy • Validation therapy • Psychomotor (physical exercise) therapy • Multisensory stimulation (e.g. Snoezelen) • Cognitive stimulation therapy • Aromatherapy • Music therapy • Environmental manipulation. Interventions • Behavioural management techniques, based on functional analysis of behaviour (ABC) • Needs-led therapies, based on the notion that challenging behaviour is a manifestation of unmet need(s) that require addressing • Psychotherapies: these may be more appropriate if cognitive impairment not too severe, e.g. cognitive behaviour therapy, interpersonal therapy • Importance of working with staff.

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Box 3.3: Pharmacological treatment of agitation and aggression in dementia • Cholinesterase inhibitors are available for cognitive symptoms of dementia but the effect size is small; they are less useful for treating agitation and aggression though analgesics, e.g. paracetamol, are useful in relieving agitation due to underlying undetected pain. • Antidepressants are often used but their efficacy is less than in people without dementia. • Antipsychotics should be avoided in dementia when possible due to increased risks of stroke and mortality. If they are used, caution is advised. • The use of benzodiazepines in dementia is discouraged as it is associated with accelerated cognitive decline. • There is currently lack of evidence for other psychotropic medication such as sodium valproate and carbamazepine to alleviate behavioural and psychological symptoms in dementia.

Wandering in dementia The term ‘wandering’ has attracted criticism as it implies that the person’s walking lacks purpose and intent, whereas this may not be the case. However, people walking relentlessly around care homes are a common sight. Factors that contribute to wandering in dementia include social isolation, disorientation in time, feeling of being lost, lack of cues such as personal belongings, and lack of space to go for a walk. Some common strategies that may help are: • Making sure the environment is safe enough for the person to walk about • If the person is walking out of boredom, arranging activities and outings • Giving certain tasks that divert their attention from the attempt to go out • Visual clues such as brightly coloured doors that may help the person to identify their house on their way back.

Medical Treatment of Patients with Dementia

If someone is vulnerable and at risk of harm from wandering, consider using alarm systems to alert a neighbour or carer when the person walks out of the door, or an electronic tracking system that can trace the location of the person if they get lost.

Abnormal (or disruptive) vocalisation This includes screaming, wailing, loud disruptive talking and mumbling. It may be associated with several factors, including severe cognitive impairment, severe impairment of activities of living, pain, sleep disturbance, depression, deafness, communication difficulties and agitation. It may be very difficult for carers to tolerate or, in a care home, it may serve to irritate other residents. When assessing disruptive vocalisation, some useful questions are: • Is there a purpose behind the sound? For example, is it a request for attention, or a signal of pain, distress or self-stimulation? Or is it because of inability to communicate verbally? • Is the environment adequate and comfortable? For example, temperature, lighting, noise and social interaction must be optimised and personalised to their needs. • Does the person suffer from any other underlying psychiatric symptoms, such as depression or psychotic symptoms? If so, these should be treated as detailed in previous sections.

Inappropriate sexual behaviour Hope et al. (1997) reported a prevalence of 5 per cent for inappropriate sexual comments in a community-dwelling cohort of people with dementia. Sexually disinhibited behaviour is reported in 7 per cent of people with Alzheimer’s disease (Burns, Jacoby and Levy 1990). Such behaviours include inappropriate sexual acts in public, sexual abuse, inappropriate sexual talk, sexual abuse and false sexual allegations (Haddad and Benbow 1993). When assessing sexual behaviour in dementia, certain areas need to be explored in detail. These include the behaviour itself (description, context and frequency), the environment within which it occurs and the people who are involved or affected by the behaviour. Issues of risk and the capacity to consent to sexual activity are often important. Management of such symptoms involves identifying any contributing factors, such as environmental stress or psychiatric symptoms or side effects of medications. Education and support for the

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caregivers alongside behavioural interventions designed by psychologists can help.

Managing medical illnesses in people with dementia Many people with dementia are aged over 75 and they are liable to have other illnesses or long-term conditions. In some cases, for example VaD and dementia with Parkinson’s disease, the effects of the disease process may have profound effects on physical health as well as on cognition. For some disorders, the relationship is probably coincidental, for example arthritis, which is just extremely common at advanced age (see Chapter 17). Physical comorbidity and multimorbidity may have several significant effects: • It can compound the effects of the dementia, for example by adding pain or immobility to increasing cognitive impairment, so together they produce greater functional impairment. • Physical ill health can itself adversely affect someone’s mental state, for example contributing to depression and making it harder to recover successfully. • If people with dementia are admitted to hospital, they may develop delirium and they tend to experience worse outcomes for their physical disorder, such as longer length of stay, lower chance of returning home and reduced survival, compared with people without dementia. • Medication compliance can be complicated as people with dementia may omit necessary medication or may take too much of it if they forget they have already had it. Supporting people to take their medication well is a major challenge in dementia care. It is also quite easy to over-prescribe for people with dementia, as drugs may be added for individual conditions without consideration of the problems that may arise with polypharmacy. Much medication given to older people is for prevention, especially of vascular disease, but the evidence that this is beneficial to people with dementia simply does not exist, as clinical trials are very difficult to carry out. There are opportunities to simplify medication regimes, for example when someone moves to a care home, but even so the accurate control of blood pressure or blood glucose does not have a good evidence base. General medical conditions, such as hypothyroidism, electrolyte disturbances,

Medical Treatment of Patients with Dementia

infections and cancer can present with low mood. Prescribed drugs such as steroids, beta blockers and NSAIDs can also cause mood changes.

Conclusion and future prospects Cholinesterase inhibitors and memantine are available for the treatment of cognitive dysfunction in Alzheimer’s disease, and this is covered by current NICE guidance. Many other treatments have been suggested but evidence to support their use is lacking. Behavioural and psychological symptoms of dementia are common. Treatment is available for depression and psychotic symptoms but medication needs to be used cautiously because of side effects. For behavioural problems such as agitation and aggression, it is important to try to understand what factors may underlie the behaviour. Non-pharmacological approaches are often effective, so prescribing should be kept to a minimum. Finally, the management of physical health problems in people with dementia is discussed. Although the AChEIs have been successful as the first drugs to have beneficial effects in various forms of dementia, we are still far from a cure for dementia. The development of monoclonal antibodies for targets such as amyloid led to considerable optimism, but it does not now appear that removing amyloid is sufficient to reverse AD. Research is in progress to find any drug that affects the course of AD or slows down the rate of progression from MCI to dementia. The discovery of genes with modest effects that are associated with inflammatory and immune processes suggest new possibilities for therapy. It may be that there are subtypes of AD, each with different susceptibilities to treatment (akin to the situation with certain cancers), and perhaps more accurate subtyping will take us closer to having useful therapies.

CASE STUDY: VALERIE Valerie has recently been diagnosed with dementia; she lives alone and her family visit her occasionally. She has carers to support her with meals and to take her out shopping. Tracey, who is one of the carers, has noticed that recently Valerie is not eating much and is looking very sad. She always seems to find some excuse for not going out.

STOP AND REFLECT Think about what questions you would want to ask Valerie and Tracey to understand more about Valerie’s presentation. Use the prompts

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given below and consider how you would go about assessing her situation. Mood: is Valerie unhappy or depressed? Is her mood worse in the mornings? Is there no longer enjoyment in things she used to do? Activities: does Valerie lack energy? Is her level of activity reduced? Is there physical over-activity? Appetite: how is her appetite? Has she lost weight? Sleep: how is Valerie sleeping at night? Is her sleep disturbed? Is there early morning waking? Taking naps during the day? You may want to consider assessment scales available for depression in dementia. One of the most used is the Geriatric Depression Scale, a 30- or 15-item ‘yes’ or ‘no’ self-reported questionnaire. The limitation is that only people with relatively mild dementia would be able to complete it. There is also the Cornell Depression Scale. This includes two versions, one for the person with dementia and another for an informant to complete, so the informant version can be used to assess more severe dementia.

CASE STUDY: GLORIA Gloria has Alzheimer’s disease. She recently moved to a new room within the residential home where she lives. Since her move she has been worrying a lot. She cannot sleep at night and keeps waking. She finds it difficult to be on her own and always tries to seek reassurance from her carers. When she is left alone, she breathes fast and complains of chest tightness.

STOP AND REFLECT What do you think Gloria is going through? Why is she experiencing these symptoms now? Gloria could be having anxiety symptoms, which is not uncommon in dementia. In her case the recent move to a different room may have brought this about and needs exploring further. What can you do to help her? Think about using a bio-psychosocial approach to help her.

Medical Treatment of Patients with Dementia

CASE STUDY: MIRIAM Miriam has severe Alzheimer’s disease. She lives in a care home, where her daughter, Penny, visits her every week. Miriam enjoys Penny’s visits but when she leaves, Miriam starts shouting and demands to leave the home to go and see her daughter. She is difficult to reassure and throws articles at carers in anger.

STOP AND REFLECT What could be the cause of her agitation? How will you investigate her symptoms and who will you speak to? What information would you like to know about Miriam in order to help her? For example, the carer identifies that Miriam misses Penny and so she makes sure that her room has lots of photographs of her family members. They engage in friendly conversation about her daughter and family while looking at photo albums which Miriam enjoys while reminiscing about her family.

References Banerjee, S. (2009) The Use of Antipsychotic Medication for People with Dementia: Time for Action. London: Department of Health. Banerjee, S., Hellier, J., Dewey, M. et al. (2011) Sertraline or mirtazapine for depression in dementia (HTA-SADD): a randomised, multicentre, double-blind, placebo-controlled trial. The Lancet. 378: 403–411. Brooker, D. and Latham, I. (2016) Person-Centred Dementia Care: Making Services Better with the VIPS Framework. Second edition. London: Jessica Kingsley Publishers. Burns, A., Jacoby, R. and Levy, R. (1990) Psychiatric phenomena in Alzheimer’s disease IV: disorders of behaviour. British Journal of Psychiatry. 157(1): 86–94. Defrancesco, M., Marksteiner, J., Fleischhacker, W.W. and Blasko, I. (2015) Use of benzodiazepines in Alzheimer’s disease: a systematic review of literature. International Journal of Neuropsychopharmacology. 18(10): pyv055. doi: 10.1093/ijnp/pyv055. Dubois, B., Padovani, A., Scheltens, P., Rossi, A. and Dell’Agnello, G. (2016) Timely diagnosis for Alzheimer’s disease: a literature review on benefits and challenges. Journal of Alzheimer’s Disease. 49(3): 617–631. Dudas, R., Malouf, R. and Dening, T. (2018) Antidepressants for treating depression in dementia. Cochrane Database of Systematic Reviews, submitted for review. Emre, M., Aarsland, D., Albanese, A. et al. (2004) Rivastigmine for dementia associated with Parkinson’s disease. New England Journal of Medicine. 351: 2509–2518. Haddad, P.M. and Benbow, S.M. (1993) Sexual problems associated with dementia: Part 1. Problems and their consequences. International Journal of Geriatric Psychiatry. 8: 547–551.

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Hope, T., Keene, J., Gedling, K. et al. (1997) Behaviour changes in dementia. 1: Point of entry data of a prospective study. International Journal of Geriatric Psychiatry. 12(11): 1062–1073. Howard, R., Phillips, P., Johnson, T. et al. (2011) Determining the minimum clinically important differences for outcomes in the DOMINO trial. International Journal of Geriatric Psychiatry. 26: 812–817. Howard, R., McShane, R., Lindesay, J. et al. (2012) Donepezil and memantine for moderateto-severe Alzheimer’s disease. New England Journal of Medicine. 366: 893–903. McKeith, I., Del Ser, T., Spano, P. et al. (2000) Efficacy of rivastigmine in dementia with Lewy bodies: a randomised, double-blind, placebo-controlled international study. The Lancet. 356: 2031–2036. NICE (2006) Dementia: Supporting people with dementia and their carers in health and social care. NICE Clinical Guideline 42. www.guidance.nice.org.uk/guidance/cg42 (Accessed 18 Jan 2018). NICE (2011) Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer’s disease. NICE Technical Appraisals (TA217). www.nice.org.uk/guidance/ TA217 (Accessed 18 Jan 2018). NICE (2018) Dementia: Assessment, management and support for people living with dementia and their carers. NICE Clinical Guideline 97. www.nice.org.uk/guidance/ ng97 (Accessed 12 Jan 2018). Pimouget, C., Le-Goff, M., Rizzuto, D., Berr, C., Leffondré, K., Pérès, K. et al. (2016) Effect of early referral to specialist in dementia on institutionalization and functional decline: findings from a population-based study. Journal of Alzheimer’s Disease. 49(3): 819–828. Rodda, J. and Carter, J. (2012) Cholinesterase inhibitors and memantine for symptomatic treatment of dementia. British Medical Journal. 344: e2986. Spector, A., Thorgrimsen, L., Woods, B. et al. (2003) Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia: randomised controlled trial. British Journal of Psychiatry. 183: 248–253. Yeh, Y.-C. and Ouyang, W.-C. (2012) Mood stabilizers for the treatment of behavioral and psychological symptoms of dementia: an update review. Kaohsiung Journal of Medical Sciences. 25: 185–193.

Chapter 4

Diagnosis and Support of Younger People with Dementia Hilda Hayo

Learning objectives By the end of this chapter you will: • Understand the importance of early recognition and accurate diagnosis of young onset dementia. • Explore the impact of a diagnosis of young onset dementia on the person and their family. • Identify why it is important for people diagnosed with young onset dementia, and their families, to receive specialist post-diagnostic support. • Examine how post-diagnostic support and interventions can be improved for people living with a diagnosis of young onset dementia and their families.

Introduction Dementia is generally thought of as a condition of old age; however, it can affect people under the age of 65 years (Ducharme et al. 2014). ‘Young onset dementia’ is a term used when referring to a progressive neurological syndrome that affects the cognition and behaviour of people under the age of 65 years. It is estimated that approximately 42,000 people under the age of 65 years in the UK have young onset dementia (Alzheimer’s Society 2014), though it should be noted that the prevalence and incidence are less well known than for late onset dementia (Green and Kleissen 2013). Recognition of the early signs and symptoms of young onset dementia are often missed or misattributed to some other cause, which can lead 57

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to distress and a delay in receiving an accurate diagnosis (Armari, Jarmolowicz and Panegyres 2013; Johannessen and Moller 2011; Ducharme et al. 2014; Carter, Oyebode and Koopmans 2017). Studies have indicated that if an early, accurate diagnosis is made after the onset of the symptoms of dementia, and appropriate specialist post-diagnostic support given, it can reduce the distress experienced by the whole family and reduce relationship breakdown (Nicolaou et al. 2010; van Vliet et al. 2010; Johannessen and Moller 2011; Carter et al. 2017). Despite the growing number of families affected by young onset dementia and the awareness-raising work by charities including Young Dementia UK, Alzheimer’s Society and Dementia UK, the feedback from families indicates that there is a lack of recognition that dementia can occur under the age of 65 years. Consequently the early signs of dementia can be missed, leading to a significant delay in accurate diagnosis and referral for specialist post-diagnostic support (van Vliet et al. 2013). Table 4.1 lists a percentage figure for the most common types of dementia in the over-65-years (late onset dementia) and under-65-years (young onset dementia) age groups. Table 4.1: Most common types of dementia in the over-65-years group (Alzheimer’s Society 2014) and the under-65-years group (Rossor et al. 2010) Type of dementia

Over-65-years age group (late onset dementia)

Under-65-years age group (young onset dementia)

Alzheimer’s disease

62%

34%

Vascular dementia

17%

18%

Mixed dementia

10%

Figures not included in the study

Dementia with Lewy bodies

4%

7%

Frontotemporal dementia

2%

12%

Alcohol-related brain impairment

Figures not included in the study

10%

Other

5%

19%

The comparison of the types of dementia experienced by age indicates that there are differences between the younger onset and late onset age groups,

Younger People with Dementia

with fewer cases of Alzheimer’s disease diagnosed in the under-65-years age group, and significantly greater numbers of people diagnosed with frontotemporal conditions and rarer dementias. Common symptoms of young onset dementia could include behavioural and mental health issues, and changes in personality, social functioning and everyday living skills (van Vliet et al. 2013; Kelley, Boeve and Josephs 2009; Ducharme et al. 2014). The cognitive decline usually associated with dementia may not be apparent until the later stages of dementia (Kuruppu and Matthews 2013). The delay in recognition that these changes could be a result of dementia, and the consequent delay in diagnosis, can lead to misunderstandings within the family, employers and the social network about why the person is acting as they are, with the interpretation that these observed behaviours and changes are intentional (Hayo 2016). This chapter will explore the importance of early recognition and diagnosis of young onset dementia and the impact the diagnosis can have on the family. It will highlight the need for the person with the diagnosis and their family to receive specialist post-diagnostic advice and support.

Why is there a delay in recognising and accurately diagnosing young onset dementia? STOP AND REFLECT If you noticed progressive changes in behaviour, mental health, personality, social behaviour or everyday living skills in a family member under the age of 65 years, what would you think and do? What would you do if the family member did not recognise these changes themselves and refused to go for a medical appointment?

The early signs of young onset dementia are often insidious and can be misattributed to many other common causes and conditions such as stress, relationship difficulties, ‘midlife crisis’, physical or mental ill health (Johannessen and Moller 2011; Lockeridge and Simpson 2012; Griffin, Oyebode and Allen 2015). This can lead to a delay in seeking professional advice regarding the cause for the observed changes. The following case study illustrates the experience of Eric and Emma and how they viewed Eric’s behaviour and personality changes before they sought a professional assessment.

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CASE STUDY: ERIC AND EMMA – PRE DIAGNOSIS Eric held a senior position in the charitable sector which involved a high degree of communication, co-ordination and interpersonal skills. Eric and Emma had a very happy marriage, and two children. They engaged in many activities together as a family and enjoyed socialising with a close group of friends. The first time Emma noticed changes in her husband was in 2007 when he became more withdrawn from family life and social activities. When his father died in 2009 Eric showed no signs of being upset even though they had had a very close relationship. Around the same time Eric was made redundant from his job but again he showed no real emotion about this. The family thought this could be indicative of a grief reaction or depression. Eric’s behaviour changed progressively, and he started to make derogatory remarks to family and friends, became obsessive about collecting the music of his youth, had difficulties with financial decision making, and was lacking in empathy towards others. His mother died and he did not show any emotion regarding this. Emma and the family thought he was probably depressed due to the events in 2009 and 2010. Eric’s relationship with his family and friends further deteriorated in 2011 and he moved out of the family home into a flat. Emma thought he was having a midlife crisis and that their relationship had broken down. They visited the general practitioner (GP) who advised they attend Relate for relationship counselling, which they did with no success. In 2012 the family realised Eric was not coping with living independently and was neglecting himself and his flat. He refused to move back to the family home but did agree to move closer to his family and to go to the GP for tests; however, he did not accept there was anything wrong or that his behaviour had changed. Emma insisted that the GP refer her husband to a psychiatrist as she was very concerned about Eric’s progressive change in behaviour, his self-neglect and occasional double incontinence; she also insisted Eric should have a brain scan. At this time she was convinced the changes were due to a mental health problem. Emma still thought Eric would have treatment and he would become well again. It took several months before Eric was assessed by a specialist neurologist who, after tests and scans, diagnosed Eric with behavioural variant frontotemporal dementia. Eric was in his fifties.

Younger People with Dementia

As dementia progresses, the family and social network begin to recognise that these changes cannot be ‘explained away’ or ‘normalised’ (Daly et al. 2013), and they seek help outside of the family, expecting that the issues can be successfully identified and treated. When professional advice is sought from a medical practitioner, there is often a delay in identifying that the symptoms may indicate young onset dementia, and a subsequent delay in referral for specialist assessment. Van Vliet et al. (2013) found that it can take on average four years for people under the age of 65 years to receive an accurate diagnosis of dementia, twice as long as for an older person. Werner, Stein-Shvachman and Korczyn (2009) estimated that between 30 and 50 per cent of younger people with dementia were wrongly diagnosed initially or given an uncertain diagnosis. Delays in receiving the correct diagnosis can occur if the medical practitioner is not aware of the signs and symptoms of young onset dementia and how it differs from late onset dementia (Cabote, Bramble and McCann 2015; Johannessen and Moller 2011). Due to the different types and causes of dementia encountered under the age of 65 years a range of tests and diagnostic procedures should be performed by practitioners who have a specialism of young onset dementia. These investigations and tests should include: clinical history, family history of neurological conditions, dementia risk factors (e.g. head injury, contact sports injuries, alcohol or drug taking), cognitive and behavioural assessment, physical and mental health history, blood tests, brain imaging, neurological and physical examination and neuropsychological tests (Kuruppu and Matthews 2013). In addition to this, a collateral history should also be taken from a reliable informant which could include the person’s partner, family member or friend, as the symptomatic person may not have an accurate recall of events and symptoms or may lack awareness of these changes (Kuruppu and Matthews 2013). As indicated previously, families often reflect and notice the changes in their family member for many months or years before they seek medical advice. When they do attend an appointment it is often at a time of desperation or crisis (Chow, Pio and Rockwood 2011; Lockeridge and Simpson 2012). Families report that they want medical practitioners to listen to the family’s concerns (Manoochehri and Huey 2012; Pressman and Miller 2014). One way of ensuring this happens would be for the partner, or family, to provide a bullet point list of what the change is, when it occurs, how frequently, the context and how it affects the person’s and family’s life. This could be submitted before the appointment to provide important information that could aid the diagnostic process. Families also indicate that they would like to be actively involved in appointments and decision making regarding their family member.

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What is the impact of a young onset dementia diagnosis? STOP AND REFLECT Consider how a diagnosis of young onset dementia could affect your life. Would you share the diagnosis with family, friends and work colleagues? What would encourage, or discourage, you from doing so?

Often people with young onset dementia and their families are in shock and disbelief when given the diagnosis (Pipon-Young et al. 2012; Ducharme et al. 2013; Clemerson, Walsh and Isaac 2014). However, some families express a sense of relief that at last they have a reason for why their family member has changed (Hayo 2016; Ducharme et al. 2013). As the media tends to focus on the negative aspects of dementia, suggesting ‘No hope, no cure and no help’, and writing about the person as a sufferer and the family as burdened, it is not surprising that this can lead to discrimination and stigma (Litherland and Capstick 2014). As a result some younger people who are diagnosed, and their families, decide not to share the diagnosis with anyone outside of the immediate family as they worry what people will think and how they will behave towards them (Hutchinson et al. 2014; Oyebode, Bradley and Allen 2013). This can lead to social isolation for both the person who is diagnosed and their family, and limit the amount of support received from the extended family and local community, and can lead to increased stress, feelings of abandonment and sense of loss (Riedijk et al. 2006; Lockeridge and Simpson 2012). In addition, the person living with dementia may fear what impact the diagnosis could have on their employment, family, relationships, driving and independence so may wish to keep the diagnosis from their wider network of colleagues, friends and social group (Beattie et al. 2004; Harris and Keady 2009).

STOP AND REFLECT What are the particular issues a younger person diagnosed with dementia, and their family, could experience? Compare your list with the one in Box 4.1.

Younger People with Dementia

Box 4.1: Particular issues faced by younger people living with the effects of dementia (adapted from Alzheimer’s Society 2014) 1. Having a rare form of dementia (Rossor et al. 2010) 2. More likely to have a difficulty receiving an accurate early diagnosis (van Vliet et al. 2010) 3. More likely to be misdiagnosed (Werner et al. 2009) 4. Being in work at the time of diagnosis or having recently lost their job (Rose and Yu 2010) 5. Having heavy financial commitments including mortgage and/ or children at university (Jefferies and Agrawal 2009) 6. Having dependent children (Beattie et al. 2004) 7. Having additional caring responsibility for parents (Arai et al. 2007) 8. Having a partner who still works (Rose and Yu 2010; Allen, Oyebode and Allen 2009) 9. More likely to be physically fit and active (Armstrong 2003) 10. More likely to have a dementia affecting behaviour and social functioning in the early stages (Rossor et al. 2010) 11. Family members more likely to report significantly higher psychological and physical morbidity (Rosness, Mjørud and Engedal 2011) 12. More likely to be sexually active (Armstrong 2003).

As younger people diagnosed with dementia are of working age at the time of diagnosis, and often have dependent children and large household expenditure, having dementia diagnosed at this time can be devastating for the family. This is especially so if the type of dementia alters the person’s personality, behaviour and social functioning or has some genetic component.

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What do people with young onset dementia and their families want? STOP AND REFLECT If you were a younger person with dementia, or a family member, what advice or support would you want?

After diagnosis families expect that they will be given appropriate postdiagnostic advice, interventions and support but as identified in the next part of Eric and Emma’s case study this is not always the case.

CASE STUDY: ERIC AND EMMA – POST DIAGNOSIS After the diagnosis Eric and Emma expected to receive specialist post-diagnostic interventions and support. They received two outpatient appointments with the specialist neurologist in the first year after diagnosis and a final outpatient appointment a year after that. It was left to the family to try and find out information about the condition and what help they could receive. Eric’s daughters searched the internet for information but found much of it unhelpful or ill informed. They also came across information that indicated that their father’s type of dementia could be genetic, which caused significant distress for the family. The neurologist was not able to refer Eric and Emma to any services or support in their local area as he was not aware of any. Instead he said he would leave this to their GP. As the GP was also not aware of any services in the area Emma had to seek this out for herself which caused unnecessary distress at a time when she was trying to keep her family together and work to provide financially for them all. Over the next year Eric’s behaviour continued to cause concern in the local community including: disinhibition, increased double incontinence, self-neglect, aggressive behaviour and sexually inappropriate behaviour. Emma arranged for a domiciliary agency to provide care and support five days per week. Emma tried to get Continuing Healthcare funding for Eric’s care but this was a very lengthy process and she had to fight to get this. In 2014 the care agency said they could no longer cope with Eric due to his aggression and sexually inappropriate behaviour towards their care staff, and gave one week’s notice that they would withdraw the service.

Younger People with Dementia

In 2014 Emma looked around for care homes that could meet his needs but the only specialist ones available were many counties away, which would prove impossible for Emma and their daughters to visit regularly. Emma continued searching and eventually found a local one which agreed to take Eric for a few weeks’ trial to assess if they could manage his changing needs. Eric was admitted and has settled well into this supportive environment and Emma and their daughters visit regularly.

Armari et al. (2013) conducted a study into the needs of caregivers, and identified lack of post-diagnosis support as a significant concern. There is a need for specialist advice and support to reduce family distress for the person living with dementia, and their family (Johannessen and Moller 2011; Lockeridge and Simpson 2012; Diehl-Schmid et al. 2013; Kaiser and Panegyres 2007). When there is a lack of specialist post-diagnostic advice, support and services this can lead to increased family distress and social isolation (Lockeridge and Simpson 2012). However, there is widespread variation in giving timely post-diagnostic support and interventions, which can lead to further distress for the family (Fortinsky 2014; Koch and Iliffe 2011).

How can post-diagnostic support and interventions be improved? In the UK there has been an unprecedented focus on dementia over the last few years; however, the monies available from the government have tended to be directed towards developing community awareness (e.g. dementia friends, dementia-friendly initiatives) and research for a prevention or cure, with very little allocated to developing adequate postdiagnostic support. Young onset dementia is relatively rare compared with late onset dementia and so services and support have tended to be designed more to meet the needs of older people. However, as previously mentioned, the needs of a person under the age of 65 years can be very different and studies have identified that there is a need for post-diagnostic interventions and support to be designed to meet their needs (Cations et al. 2017; Carter et al. 2017). Ducharme et al. (2014) found that 70 per cent of family carers of younger people with dementia indicated that they had unmet support needs. Families living with young onset dementia have identified that they need support and interventions that enable them to understand what is happening, how to develop strategies for coping with these changes (Lockeridge and Simpson 2012; Nicolaou et al. 2010),

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retain relationships (Hellstrom et al. 2007; La Fontaine and Oyebode 2014; Lockeridge and Simpson 2012), identify help and financial support (Ducharme et al. 2014) and maintain their social connections (Lockeridge and Simpson 2012; Harris and Keady 2009; Johannessen and Moller 2011; Bartlett and O’Connor 2010). Younger people with dementia and their families indicate that services are seen as effective if they provide information, education, social interaction, a sense of normality, continuity, a sense of belonging and purpose and can accommodate changing needs (Mayrhofer et al. 2017). Meaningful activities that focus on strengths and enable development of new interests and skills tend to be viewed more positively by younger people living with dementia (Nay et al. 2015; Doherty et al. 2009; Peel and Harding 2013). Peer group support is also thought to be important by people with the diagnosis and their families, so they can meet with others who are having a similar experience, do not feel so isolated and can pick up techniques and approaches that have worked for others when facing a difficult issue or decision (Beattie et al. 2004; Cabote et al. 2015; Hayo 2016). People living with dementia and their families also indicate that they should have an identified key worker or case manager from the time of diagnosis, who can remain their point of contact throughout their experience, which is something that the Young Dementia Network identifies as best practice (Carter et al. 2017). Awareness training regarding the early signs and symptoms of young onset dementia is needed for all health and social care staff and the public so that young onset dementia can be recognised early, diagnosed accurately and appropriate post-diagnostic support and interventions provided in a timely way.

Conclusion Being diagnosed with dementia at any age can be a shock and can cause distress for the person diagnosed and their family. Receiving the diagnosis at a younger age can be particularly distressing due to the effects on employment, finances, relationships and lifestyle. In addition, people with young onset dementia are more likely to have dependent children and to have a rarer or a genetic dementia than someone with late onset dementia. As a result younger people and their families can have a greater need for emotional, psychological and relationship interventions than people diagnosed later in life. Families identify that timely post-diagnostic support and interventions delivered by an identified, knowledgeable

Younger People with Dementia

professional can help them adapt to the changes they experience in abilities, relationships and roles.

References Allen, J., Oyebode, J.R. and Allen, J. (2009) Having a father with young onset dementia: the impact on well-being of young people. Dementia. 8(4): 455–480. Alzheimer’s Society (2014) Dementia 2014: Opportunity for Change. London: Alzheimer’s Society. Arai, A., Matsumoto, T., Ikeda, M. and Arai, Y. (2007) Do family caregivers perceive more difficulty when they look after patients with early onset dementia compared to those with late onset dementia? International Journal of Geriatric Psychiatry. 22(12): 1255– 1261. Armari, E., Jarmolowicz, A. and Panegyres, P.K. (2013) The needs of patients with early onset dementia. American Journal of Alzheimer’s Disease and Other Dementias. 28(1): 42–46. Armstrong, M. (2003) The needs of people with young onset dementia and their carers. Professional Nurse. 18(12): 681–684. Bartlett, R. and O’Connor, D. (2010) Broadening the Dementia Debate: Towards Social Citizenship. Bristol: The Policy Press. Beattie, A., Daker-White, G., Gilliard, J. and Means, R. (2004) ‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services. Health and Social Care in the Community. 12(4): 359–368. Cabote, C.J., Bramble, M. and McCann, D. (2015) Family caregivers’ experiences of caring for a relative with younger onset dementia: a qualitative systematic review. Journal of Family Nursing. 1–26. doi: 10.1177/1074840715573870. Carter, J.E., Oyebode, J.R. and Koopmans, R.T.C.M. (2017) Young-onset dementia and the need for specialist care: a national and international perspective. Aging and Mental Health. doi: 10.1080/13607863.2016.1257563. Cations, M., Withall, A., Horsfall, R., Denham, N., White, F., Trollor, J., Loy, C., Brodaty, H., Sachdev, P., Gonski, P. and Demirkol, A. (2017) Why aren’t people with young onset dementia and their supporters using formal services? Results from the INSPIRED study.’ PloS ONE. 12(7): e0180935. Chow, T.W., Pio, F.J. and Rockwood, K. (2011) An international needs assessment of caregivers for frontotemporal dementia. Canadian Journal of Neurological Sciences. 38: 753–757. Clemerson, G., Walsh, S. and Isaac, C. (2014) Towards living well with young onset dementia: an exploration of coping from the perspective of those diagnosed. Dementia. 13(4): 451–466. Daly, L., McCarron, M., Higgins, A. and McCallion, P. (2013) ‘Sustaining Place’ – a grounded theory of how informal carers of people with dementia manage alterations to relationships within their social worlds. Journal of Clinical Nursing. 22: 501–512. Diehl-Schmid, J., Schmidt, E.-M., Nunnemann, S., Riedl, L., Kurz, A., Forstl, H., Wagenpfeil, S. and Cramer, B. (2013) Caregiver burden and needs in frontotemporal dementia. Journal of Geriatric Psychiatry. 26(4): 221–229. Doherty, D., Benbow, S.M., Craig, J. and Smith, C. (2009) Patients’ and carers’ journeys through older people’s mental health services: powerful tools for learning. Dementia. 8(4): 501–513. Ducharme, F., Kergoat, M.J., Antoine, P., Pasquier, F. and Coulombe, R. (2013) The unique experience of spouses in early-onset dementia. American Journal of Alzheimer’s Disease and Other Dementias. 28(6): 634–641.

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Ducharme, F., Kergoat, M.J., Coulombe, R., Lévesque, L., Antoine, P. and Pasquier, F. (2014) Unmet support needs of early-onset dementia family caregivers: a mixed-design study. BMC Nursing. 13(1): 49. Fortinsky, R.H. (2014) Diagnosis and post-diagnosis support. In M. Downs and B. Bowers (eds) Excellence in Dementia Care: Research into Practice. Second edition. Berkshire: Open University Press. Green, T. and Kleissen, T. (2013) Early onset dementia: a narrative review of the literature. Indian Journal of Gerontology. 27(1): 1–28. Griffin, J., Oyebode, J.R. and Allen, J. (2015) Living with a diagnosis of behavioural variant frontotemporal dementia: the person’s experience. Dementia. 15(6): 1622–1642. Harris, P.B. and Keady, J. (2009) Selfhood in younger onset dementia: transitions and testimonies. Aging and Mental Health. 13(3): 437–444. Hayo, H. (2016) How and why does social connectedness change in families living with the effects of behavioural variant frontotemporal dementia? Doctoral thesis. Northampton: University of Northampton. Hellstrom, I., Nolan, M., Nordenfelt, L. and Lundh, U. (2007) Ethical and methodological issues in interviewing persons with dementia. Nursing Ethics. 14(5): 608–619. Hutchinson, K., Roberts, C., Kurrie, S. and Daly, M. (2014) The emotional wellbeing of young people having a parent with young onset dementia. Dementia. doi:10.1177/1471301214532111. Jefferies, K. and Agrawal, N. (2009) Early onset dementia. Advances in Psychiatric Treatment. 15(5): 380–388. Johannessen, A. and Moller, A. (2011) Experiences of persons with early onset dementia in everyday life: a qualitative study. Dementia. 12(4): 410–424. Kaiser, S. and Panegyres, P.K. (2007) The psychosocial impact of young onset dementia on spouses. American Journal of Alzheimer’s Disease and Other Dementias. 21(6): 398–402. Kelley, B.J., Boeve, B.F. and Josephs, K.A. (2009) Cognitive and noncognitive neurological features of young onset dementia. Dementia and Geriatric Cognitive Disorders. 27: 564–571. Koch, T. and Iliffe, S. (2011) Dementia diagnosis and management: a narrative review of changing practice. British Journal of General Practice. 61(589): 513–525. Kuruppu, D.K. and Matthews, B.R. (2013) Young-onset dementia. In  Seminars in Neurology. September. 33(4): 365–385. La Fontaine, J. and Oyebode, J.R. (2014) Family relationships and dementia: a synthesis of qualitative research including the person with dementia. Ageing and Society. 34(07): 1243–1272. Litherland, R. and Capstick, A. (2014) Involving people with dementia in service development and evaluation. In M. Downs and B. Bowers (eds) Excellence in Dementia Care: Research into Practice. Second edition. Berkshire: Open University Press. Lockeridge, S. and Simpson, J. (2012) The experience of caring for a partner with young onset dementia: how younger carers cope. Dementia. 12(5): 635–651. Manoochehri, M. and Huey, E.D. (2012) Diagnosis and management of behavioral issues in frontotemporal dementia. Current Neurology and Neuroscience Reports. 12(5): 528–536. Mayrhofer, A., Mathie, E., McKeown, J., Bunn, F. and Goodman, C. (2017) Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review. Aging and Mental Health. doi: 10.1080/13607863.2017.1334038. Nay, R., Bauer, M., Fetherstonhaugh, D., Moyle, W., Tarzia, L. and McAuliffe, L. (2015) Social participation and family carers of people living with dementia in Australia. Health and Social Care in the Community. 23(5): 550–558. Nicolaou, P., Egan, S.J., Gasson, N. and Kane, R. (2010) Identifying needs, burden and distress of carers of people with frontotemporal dementia compared to Alzheimer’s disease. Dementia. 9(2): 215–235.

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Oyebode, J.R., Bradley, P. and Allen, J.L. (2013) Relatives’ experiences of frontal-variant frontotemporal dementia. Qualitative Health Research. 23(2): 156–166. Peel, E. and Harding, R. (2013) ‘It’s a huge maze, the system, it’s a terrible maze’: dementia carers’ constructions of navigating health and social care services. Dementia. 13(5): 642–661. Pipon-Young, F.E., Lee, K.M., Jones, F. and Guss, R. (2012) ‘I’m not all gone, I can still speak’: the experiences of younger people with dementia. An action research study. Dementia. 11(5): 597–616. Pressman, P.S. and Miller, B.L. (2014) Diagnosis and management of behavioural variant frontotemporal dementia. Biological Psychiatry. 75: 574–581. Riedijk, S.R., De Vugt, M.E., Duivenvoorden, H.J., Niermeijer, M.F., Van Swieten, J.C., Verhey, F.R.J. and Tibben, A. (2006) Caregiver burden, health-related quality of life and coping in dementia caregivers: a comparison of frontotemporal dementia and Alzheimer’s disease. Dementia and Geriatric Cognitive Disorders. 22: 405–412. Rose, K. and Yu, F. (2010) Care considerations for persons with early onset dementia: a case studies analysis. Alzheimer’s Care Today. 11(3): 151–161. Rosness, T.A., Mjørud, M. and Engedal, K. (2011) Quality of life and depression in carers of patients with early onset dementia. Aging and Mental Health. 15(3): 299–306. Rossor, M.N., Fox, N.C., Mummery, C.J., Schott, J.M. and Warren, J.D. (2010) The diagnosis of young onset dementia. The Lancet Neurology. 9(8): 793–806. van Vliet, D., de Vugt, M.E., Bakker, C., Koopmans, C.M. and Verhey, F.R.J. (2010) Impact of early onset dementia on caregivers: a review. International Journal of Geriatric Psychiatry. 25: 1091–1100. van Vliet, D., de Vugt, M.E., Bakker, C., Pijnenburg, Y.A.L., Vernooij-Dassen, M.J.F.J., Koopmans, R.T.C.M. and Verhey, F.R.J. (2013) Time to diagnosis in young onset dementia as compared with late onset dementia. Psychological Medicine. 43(2): 423–432. Werner, P., Stein-Shvachman, I. and Korczyn, A.D. (2009) Early onset dementia: clinical and social aspects. International Psychogeriatrics. 21(4): 631–636.

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Chapter 5

Learning Disability and Dementia Chris Knifton

Learning objectives By the end of this chapter you will: • Understand what is meant by the term learning disability. • Have an awareness of how dementia may affect people with a learning disability. • Understand the process of assessment for dementia in people with a learning disability. • Be able to consider the need to share information about diagnosis.

Introduction There are approximately 1.5 million people with a learning disability (LD) in the UK (Department of Health 2001), accounting for almost 2 per cent of the total population (Royal College of Nursing 2010). Improvements to medical, health and social care have meant that life expectancy for people with an LD is increasing and for people with a mild LD it is found to be similar to that of the general population, with predictions that over a third of people with LD by 2020 will be over 50 years of age (Janicki and Dalton 2000; McConkey, Mulvany and Barron 2006). With the additional life expectancy of people with Down’s syndrome now standing at 58 years (Wu and Morris 2013) there has been a notable increase in dementia prevalence that far exceeds that of the general population. This chapter aims to support an understanding of dementia in people with a learning disability.

Learning disability The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) (American Psychiatric Association 2013) – using the term 70

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intellectual disability, an alternative term for learning disability – describes this as: 1. Deficits in intellectual functions (i.e. reasoning, problem solving, planning, abstract thinking, judgement and learning) 2. Deficits in adaptive functioning resulting in failure to meet developmental and socio-cultural standards for personal independence and social responsibility 3. Onset of symptoms occurring during the developmental stage (generally before the onset of adulthood). The level or degree of a person’s LD is also commonly referred to when a diagnosis is given and this is usually assessed as either borderline, mild, moderate, severe or profound. Although, in the past, assessing the level of LD was usually on the basis on the Wechsler Adult Intelligence Scale – Revised (WAIS-R) (Wechsler 1981) – a form of intelligence quotient (IQ) score where the lower the score the more severe the form for LD, with profound being the severest form – current practice recommends that levels of severity ought instead be assessed on the basis of social functioning. In addition, much like the term dementia, LD is also an umbrella term that covers a wide range of conditions. Sometimes obvious manifestations, such as the physical characteristics seen in Down’s syndrome, can be detected at birth leading to diagnosis, whilst for other conditions diagnosis is only made following significant delays in development and social functioning during childhood and adolescence. Box 5.1 gives examples of a range of some of these conditions that may cause an LD. Box 5.1: Examples of conditions leading to a learning disability • Adrenoleukodystrophy • Apert syndrome • Coffin–Lowry syndrome • Cornelia de Lange syndrome • Down’s syndrome • Edwards’ syndrome • Foetal alcohol syndrome

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• Fragile X syndrome • Galactosaemia • Lesch–Nyhan syndrome • Patau syndrome • Phenylketonuria • Prader–Willi syndrome • Rett syndrome • Sanfilippo syndrome • Tay–Sachs disease • Tuberous sclerosis.

Dementia in people with a learning disability Dementia in people with an LD occurs at an earlier age and at much higher rates when compared to the general population. Overall prevalence rates for dementia in people with an LD aged 65 and over may be found to be between 18.3 per cent (Strydom et al. 2007) and 21.6 per cent (Cooper 1997), and particularly for Down’s syndrome this figure increases sharply to 41.7 per cent when aged 60 and over, and 50 per cent for those 70 and over (Tyrrell et al. 2001). With dementia occurring at a much earlier age, the prevalence rate in Down’s syndrome was 3.4 per cent (Holland et al. 1998) for those under 40, at 45 almost 9 per cent, between the ages of 50 and 54 at 17.7 per cent, and between the ages 55 and 59 it was 32.1 per cent (Coppus et al. 2006). Other studies have also shown similarly high prevalence rates (30.4%) of dementia in people with Down’s syndrome in the 50–59 age group (Tyrrell et al. 2001). Overall these figures suggest not only that dementia is more common in people with an LD but that for people with Down’s syndrome specifically, dementia also occurs at a much earlier age than noted in the general population. Given this high prevalence, consideration needs to be given to whether specific forms or types of dementia are also more commonly associated with this client group. Here evidence suggests a particularly strong association between Down’s syndrome and Alzheimer’s disease, although other forms of dementia including dementia with Lewy bodies (DLB), vascular dementia (VaD), and frontotemporal lobe degeneration (FTLD) have also been noted. The association specifically with Alzheimer’s disease

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is an interesting one with a range of theories as to why this may be so. The amyloid cascade hypothesis, however, is perhaps the most likely explanation (Wilson et al. 2014). This is based on the idea of a build-up of a protein found in the brain known as beta-amyloid which is caused by the abnormal metabolism of an amyloid precursor protein. Chromosome 21, found in triplicate in people with Down’s syndrome (hence the condition’s medical term of Trisomy 21) interestingly also carries the gene responsible for this amyloid precursor protein. This triplication of the amyloid protein precursor thus leads to increasing production of beta-amyloid in the person’s brain. It is the accumulation of beta-amyloid in the brain that often leads to Alzheimer’s disease (Zigman and Lott 2007) and hence the clear association between these two conditions.

Signs and symptoms of dementia in people with a learning disability In the general population, the early symptoms of dementia include cognitive problems usually associated with short-term memory and problems with orientation. However, in Down’s syndrome presentation may be more atypical where the first symptoms of dementia are not usually cognitive, but rather associated with changes to behaviour and personality (Ball et al. 2006), also known as non-cognitive symptoms. Onset of epilepsy, particularly where there is no prior history of seizure activity, is also an increasingly common symptom and may precede behavioural and personality changes so may become an important early indicator or ‘red flag’, although more research in this area is still needed. In particular, signs of epilepsy in people with Down’s syndrome over the age of 45 should raise the possibility of Alzheimer’s disease, with over 80 per cent of people with Down’s syndrome and dementia developing seizures (Menendez 2005). As the condition progresses, more areas of the brain become affected and so the experience of dementia becomes more debilitating, leading to co-morbid emotional disorders such as depression and anxiety as well  as functional loss and increasing difficulties in activities associated with everyday living. Disease progression is also often more rapid than that found in the general population.

Assessment of dementia in people with an LD Reactive monitoring is the term given to the assessment of cognitive and social skills when dementia is suspected in a person with an LD, often after concerns have been raised by family or care staff. Although this is still

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often a common reason for referral it is fraught with problems as it relies on recognising changes in the person’s condition – a problematic concern particularly where changes in staff and inconsistencies in reporting are all possible as well. In addition, where the person still lives within the family home, ill-health or death of one or more of the person’s parents may result in an emergency admission with deterioration in functioning going largely unrecognised or missed due to diagnostic overshadowing. Baseline assessments of social and cognitive functioning followed by progressive assessments throughout adulthood thus become important tools in the recognition of signs of deterioration for people with Down’s syndrome. The initial baseline assessment should be completed at a time early enough to precede any potential onset of dementia whilst also late enough to take into account functional stability and brain development in people with an LD, which may often be delayed. Carr (2000) found functional stability to occur between the ages of 21 and 30 years in people with an LD, with some suggesting that some form of baseline assessment ought to have been undertaken by the age of 30 (Turk, Dodd and Christmas 2001; McBrien 2009). Prospective monitoring, or further re-assessment, is then usually undertaken at a frequency that correlates with the rising risk of dementia and advancing age (see Table 5.1) although research currently indicates this as a need in Down’s syndrome alone rather than in all people with an LD, unless of course dementia is suspected. Table 5.1: Age for baseline assessment and prospective monitoring for dementia in Down’s syndrome Age in years

Frequency of assessment

30–39

Baseline assessment × 1

40–49

Prospective re-assessment every 2 years

50 plus

Prospective re-assessment every year

CASE STUDY: EVA (PART 1) Eva is a 31-year-old woman with Down’s syndrome. She lives at home with her mother who is in her eighties. As part of her Health Action Plan, Eva has been referred by her GP to the learning disability services for a baseline assessment of cognitive and social functioning. Together with the learning disability nurse, the purpose of the assessment was carefully explained to Eva and her mother, for which Eva was able to consent. Eva’s mother was initially concerned about the involvement of health care professionals as she did not

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understand why a referral was necessary as her daughter was ‘happy and well’, although this was resolved after the nurse explained the need to have a carefully documented baseline of skills from which further assessments could be compared.

Assessment tools for carrying out baseline and prospective cognitive monitoring used in the general population, such as the Mini-Mental State Examination (MMSE) (Folstein, Folstein and Fanjiang 2001) or the Addenbrooke’s Cognitive Examination (Hsieh et al. 2013), should be avoided in LD. Rather, tools specifically designed and validated for use with people with an LD should only be considered and are usually in the form of informant questionnaires. Examples of informant questionnaires used in this area may include: • Dementia Questionnaire for People with Learning Disabilities (DLD) (Evenhuis, Kengen and Eurlings 2007) • Dementia Scale for Down’s Syndrome (DSDS) (Gedye 1995) • Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQUIID) (Deb et al. 2007). However, when dementia is suspected, as with the general population, informant questionnaires are not enough to suggest a probable dementia diagnosis. Instead, assessment should also include detailed history taking, physical examinations including medical investigations, mental state and health examination, and environmental assessment (see Chapter 2). In LD some additional points need to be considered, such as: • Neuro-imaging (such as MRI or CT scans) may have limited value in early diagnosis for people with Down’s syndrome due to medial temporal lobe atrophy with or without dementia. • Where the person is unable to consent to assessment/investigations, the Mental Capacity Act (2005) must be followed. • Thyroid function tests are particularly important in Down’s syndrome due to the increased risk of hypothyroidism in this group and differential diagnosis. • Depression may get confused with dementia leading to differential diagnosis (McBrien 2009) and is common in people with Down’s syndrome, so a careful assessment using a validated depression screening tool for use with this population should be considered. Examples of screening tools may include the Glasgow Depression

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Scale (Client Version and Carer Supplement) (Cuthill, Espie and Cooper 2003). • An increasing number of people with an LD currently live at home, often only first becoming known to services following the death or ill-health of a parent who has been the main carer in the person’s life. Loss of parents, as well as moving into residential care for the first time, can be a bewildering adverse life event and as such may be the reason for potential decline in cognitive skills or changes to behaviour and personality. • Sensory impairments caused by cataracts, keratoconus and narrowing of the acoustic canal in the ear may all lead to a possible decline in functioning in people with Down’s syndrome so these must be carefully considered before any dementia diagnosis is given. • Use of a variety of tools should be considered: • OK Health Checks (Mathews 2006) • Health Action Plans (Department of Health 2001) • Communication Passports (Millar and Aitken 2003) • It is important at this point to also consider the rights of the person with an LD in both offering and carrying out an assessment, in particular taking due regard of the Consumer Act (2014), Equality Act (2010), Mental Capacity Act (2005) and the Human Rights Act (1998).

CASE STUDY: EVA (PART 2) At the age of 43, Eva began to display behavioural and personality changes. She was carefully assessed and no physical or mental reason could be found for her behaviour change. Both hypothyroidism and/ or depression were queried but these was ruled out following a blood test and depression assessment. The nurse thought that it might be the early signs of dementia, particularly Alzheimer’s disease, as changes to her DLD score were detected from her baseline measurement in her thirties and subsequent prospective measurements at ages 40 and 42. Eva’s mother was confused as Eva had not shown any obvious memory problems, nor did she think her daughter was old, until the nurse explained that sometimes ‘atypical’ signs such as behaviour or

Learning Disability and Dementia

personality changes could be the first sign of dementia for people with Down’s syndrome and that the age of onset can be middle age too.

CASE STUDY: EVA (PART 3) Following further assessment a diagnosis of Alzheimer’s disease was given. Eva’s mother struggled to adjust to the diagnosis. After all, Eva was only in her early forties but now had dementia and her mother didn’t know what to do. The nurse made a referral to the local Admiral Nurse service (see Box 5.2), so specialist support for Eva’s mother (in the form of psychoeducation, emotional support and signposting) could be considered; and a multidisciplinary team meeting was arranged to discuss support for Eva, both in helping her understand her diagnosis and so that she could be involved in planning for her own future.

Box 5.2: The Admiral Nursing model • Admiral Nurses focus on the needs of the whole family affected by dementia, including psychological support to help the person with dementia and family carers to understand and deal with their thoughts, feelings and behaviour, and to adapt to the changing situation. • Admiral Nurses use a range of specialist interventions that help people live well with the condition and develop skills to improve communication and maintain relationships. • Admiral Nurses’ work with families is an invaluable source of contact and support at particular points of difficulty in the dementia journey, including diagnosis, when the condition progresses, or when tough decisions need to be made, such as moving a family member into residential care. • Admiral Nurses help families cope with feelings of loss and bereavement as the condition progresses. There is an acknowledgement that family care does not end once ‘handson’ comes to an end. • Admiral Nurses provide case management and advice on referrals to other appropriate services and liaise with other health professionals on behalf of the family.

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As dementia progresses, different parts of the brain become affected, with deterioration in activities of daily living becoming more evident. In Down’s syndrome, dementia is likely to progress at a much faster rate than the general population. As the condition progresses, full-time formal care is often needed, usually taking the form of residential, nursing or supported living, depending on level of need. This often brings the changes of new carers, fellow residents, friends and peers. As behavioural, psychological, social and cognitive symptoms increase, as well as some physical symptoms such as epilepsy, dysphagia and incontinence, there may be an increased need to discuss the dementia diagnosis with fellow residents, who themselves may have an LD, to help them understand what is happening to the person with dementia with whom they live. Sharing information about the progressive nature of dementia with family, carers, friends and peers becomes an increasingly important consideration. Consideration for the person’s privacy and confidentiality should be maintained when sharing a diagnosis; where possible, consent to share information should be obtained. There are various examples of information booklets and resources (see Table 5.2) that can support such conversations about a diagnosis of dementia. When a person lacks capacity and the decision to share information is considered in the person’s best interests, this would need to be carefully documented and guidance followed as set out in the Code of Practice for the Mental Capacity Act (2005). Table 5.2: Examples of resources used when sharing a diagnosis Sharing a diagnosis with family carers

Sharing a diagnosis with other people with an LD (such as house-mates/friends/partners)

Keep Talking about Dementia (Watchman 2006)

About My Friend (Dodd, Turk and Christmas 2005)

Down’s Syndrome and Alzheimer’s Disease (Holland 2013)

Ann Has Dementia (Hollins, Blackman and Ely 2012)

Supporting Derek (Watchman, Kerr and Wilkinson 2010)

Jenny’s Diary (Watchman, Tuffrey-Wijne and Quinn 2015)

CASE STUDY: EVA (PART 4) By the time Eva was 45 years old, a couple of years after her diagnosis of Alzheimer’s disease, she was admitted to a residential unit for people with LD. She settled well and made good friends with her fellow house-mates. However, six months later, Eva started to

Learning Disability and Dementia

become wakeful at night, often shouting and wandering round the home, waking people up because she thought it was time to go to the day centre. In the mornings she would often be late getting dressed and sometimes put on clothes in the wrong order, making everybody else late whilst staff stopped to help Eva get dressed. This had started to annoy her house-mates, which often led to arguments and was making everyone sad. The community LD nurse was contacted, who arranged a joint visit with the Admiral Nurse. They obtained Eva’s consent to share her diagnosis of dementia with her house-mates so they would have a better understanding of why Eva was behaving in this way and understand more about what was happening to her. Eva wanted to be involved in these discussions too. Once Eva’s house-mates knew that she had an illness and that ‘her brain was a bit broken’, which meant her ‘shouting and lateness was not her fault’, they became a lot more understanding and supportive.

Depending on the progression of dementia, a range of specific interventions may need to be considered with the overarching principle of supporting the person to live as well as possible with their dementia. However, it is important to accept that dementia is a progressive neurological disorder with a terminal or end stage and, where possible, to support the person to die well with dementia too. Advance care planning is just as important in the learning disability population as it is in the general population (see Chapter 14). In LD advance care planning will need to be tailored and as accessible as possible using appropriate language, layout, use of pictures etc. Support from the LD nurse and/or the speech and language therapist may be useful.

Summary Dementia has a higher prevalence rate in people with an LD than found in the general population and so its early presentation may seem atypical by comparison, notably through specific behavioural and personality changes as well as development of adult onset epilepsy. Age of onset, particularly in Down’s syndrome, is usually earlier than found in the general population, and its progression is often more rapid. Assessment for dementia follows broadly the same principles as that used for the general population although any assessment tool adopted would need to be sensitive to LD and be appropriately validated for use with this client group. Baseline assessment of cognitive and social functioning as well as regular prospective monitoring beginning at 30

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years of age in people with Down’s syndrome are seen as best practice. For other forms of LD such testing is only recommended if dementia is suspected, rather than routine. Disclosing the diagnosis of dementia may also require sharing with fellow residents or peers at day centres, not just considering ‘what to say’ but also ‘how to say it’ to enable as full an understanding as possible. Dementia in people with an LD can be complex; issues of comorbidities, differential diagnoses and the risk of diagnostic overshadowing all combine with the challenges of early onset, rapid progression and atypical symptoms. There remains a need to build a greater evidence base in which clinical, psychosocial and legal concerns can be discussed and policy and practice developed to ensure the rights and the needs of this specific population are continually addressed and not forgotten.

STOP AND REFLECT Explore what a Health Action Plan and an Annual Health Check for people with LD might include. In people with Down’s syndrome, depression and hypothyroidism are also both common health problems as well as dementia. Compare and contrast the signs and symptoms of these conditions with dementia and reflect on the importance of a careful assessment for differential diagnosis. Consider how you might support a conversation about dementia with a person with an LD so they can learn more about their diagnosis. Download Jenny’s Diary at www.uws.ac.uk/jennysdiary. Reflect on whether you think the person with LD should or should not be informed of their diagnosis. Would your answer differ if they didn’t also have an LD? Think back to the case of Eva earlier in the chapter. Eva gave consent for her diagnosis to be shared with her house-mates so they could better understand her condition. What would you do if Eva was unable to or refused to give consent to share information about her dementia diagnosis with her house-mates? What might be the consequence of this? Look back at Eva’s case study and pick out where reference to an Admiral Nurse has been given. Research the Dementia UK website further on the role of the Admiral Nurse (www.dementiauk.org). Consider how an Admiral Nurse can support family and carers

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where the person with dementia (or perhaps even the carer) has an LD. There are currently 235 Admiral Nurses in the UK. Look at the map of the Dementia UK website showing where these Admiral Nurse services are located. Is there an Admiral Nurse service geographically near you?

References American Psychiatric Association (APA) (2013) Diagnostic and Statistical Manual of Mental Disorders. Fifth Edition. (DSM-5). Washington: APA. Ball, S.L., Holland, A.J., Hon, J., Huppert, F.A., Treppner, P. and Watson, P.C. (2006) Personality and behaviour changes mark the early stages of Alzheimer’s disease in adults with Down’s syndrome: findings from a prospective population-based study. International Journal of Geriatric Psychiatry. 21(7): 661–673. Carr, J. (2000) Intellectual and daily living skills of 30-year-olds with Down’s syndrome: continuation of a longitudinal study. Journal of Applied Research in Intellectual Disabilities. 13: 1–6. Cooper, S.A. (1997) High prevalence of dementia among people with learning disabilities not attributable to Down’s syndrome. Psychological Medicine. 27: 609–616. Coppus, A., Evenhuis, H., Verberne, G.J., Visser, F., van Gool, P., Eikelenboom P. et al. (2006) Dementia and mortality in persons with Down’s syndrome. Journal of Intellectual Disability Research. 50(10): 768–777. Cuthill, F.M., Espie, C.A. and Cooper, S.A. (2003) Development and psychometric properties of the Glasgow Depression Scale for people with a learning disability. British Journal of Psychiatry. 182: 347–353. Deb, S., Hare, M., Prior, L. and Bhaumik, S. (2007) The dementia screening questionnaire for individuals with intellectual disabilities. British Journal of Psychiatry. 190: 440–444. Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century. London: Stationery Office. Dodd, K., Turk, V. and Christmas, M. (2005) About My Friend: For Friends of People with Down’s Syndrome and Dementia. Birmingham: BILD Publications. Evenhuis, H.H., Kengen, M.M.F. and Eurlings, H.A.L. (2007) Dementia Questionnaire for People with Learning Disabilities (DLD). UK adaptation. Antonio, TX: Harcour Assessment. Folstein, M.F., Folstein, S.E. and Fanjiang, G. (2001) Mini Mental State Examination: Clinical Guide. Lutz, FL: Psychological Assessment. Gedye, A. (1995) Dementia Scale for Down Syndrome – Manual. Vancouver, BC: Gedye Research and Consulting. Holland, A.J. (2013) Down’s Syndrome and Alzheimer’s Disease: A Guide for Parents and Carers. London: Down’s Syndrome Association. Holland, A., Hon, J., Huppert, F.A., Stevens, F. and Watson, P. (1998) Population-based study of the prevalence and presentation of dementia in adults with Down’s syndrome. British Journal of Psychiatry. 172(6): 493–498. Hollins, S., Blackman, N. and Ely, R. (2012) Ann Has Dementia. London: Books Beyond Words. Hsieh, S., Schubert, S., Hoof, C., Mioshi, E. and Hodges, J.R. (2013) Validation of the Addenbrooke’s Cognitive Examination III in frontotemporal dementia and Alzheimer’s disease. Dementia and Cognitive Disorders. 36(304): 242–250. Janicki, M.P. and Dalton, A.J. (2000) Prevalence of dementia and impact on intellectual disability services. Mental Retardation. 38(3): 276–288.

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Mathews, D.R. (2006) The ‘OK’ Health Check. Preston: Fairfield Publications. McBrien, J. (2009) Screening adults with Down’s syndrome for early signs of dementia. Journal of Integrated Care. 17(3): 3–7. McConkey, R., Mulvany, F. and Barron, S. (2006) Adult persons with intellectual disabilities on the island of Ireland. Journal of Intellectual Disability Research. 50: 227–236. Menendez, M. (2005) Down syndrome, Alzheimer’s disease and seizures. Brain and Development. 27(4): 246–252. Millar, S. and Aitken, S. (2003) Personal Communication Passports: Guidelines for Good Practice. Edinburgh: CALL Publications. Royal College of Nursing (RCN) (2010) Mental Health Nursing of Adults with Learning Disabilities: RCN Guidance. London: RCN. Strydom, A., Livingstone, G., King, M. and Hassiotis, A. (2007) Prevalence of dementia in intellectual disability using different diagnostic criteria. British Journal of Psychiatry. 191: 150–157. Turk, V., Dodd, K. and Christmas, M. (2001) Down’s Syndrome and Dementia: Briefing for Commissioners. London: Foundation for People with Learning Disabilities. Tyrrell, J., Cosgrave, M., McCarron, M., McPherson, J., Calvert, J., Kelly, A. et al. (2001) Dementia in people with Down’s syndrome. International Journal of Geriatric Psychiatry. 16(12): 1168–1174. Watchman, K. (2006) Keep Talking About Dementia: Information for Siblings and Professionals About Down’s Syndrome and Dementia. Edinburgh: Scottish Down’s Syndrome Association. Watchman, K., Kerr, D. and Wilkinson, H. (2010) Supporting Derek: A Practice Development Guide to Support Staff Working with People who have a Learning Disability and Dementia. London: Joseph Rowntree Foundation/University of Edinburgh. Watchman, K., Tuffrey-Wijne, I. and Quinn, S. (2015) Jenny’s Diary: A Resource to Support Conversations About Dementia with People Who Have a Learning Disability. London: Alzheimer’s Society. Wechsler, D. (1981) Manual for the Wechsler Adult Intelligence Scale – Revised (WAIS-R). New York: Psychological Corporation. Wilson, L.R., Annus, T., Zaman, S.H. and Holland, A.J. (2014) Understanding the process: links between Down’s syndrome and dementia. In K. Watchman (ed.) Intellectual Disability and Dementia: Research into Practice. London: Jessica Kingsley Publishers. Wu, J. and Morris, J.K. (2013) The population prevalence of Down’s syndrome in England and Wales in 2011. European Journal of Human Genetics. 21(9): 1016–1019. Zigman, W.B. and Lott, I.T. (2007) Alzheimer’s disease in Down’s syndrome: neurobiology and risk. Mental Retardation and Development Disability Research Review. 13(3): 237–246.

Further reading and resources British Psychological Society (2015) Dementia and People with Intellectual Disabilities: Guidance on the Assessment, Diagnosis, Interventions and Support of People with Intellectual Disabilities who Develop Dementia. Leicester: British Psychological Society. Watchman, K. (2014) Intellectual Disability and Dementia: Research into Practice. London: Jessica Kingsley Publishers. Watchman, K., Tuffrey-Wijne, I. and Quinn, S. (2015) Jenny’s Diary: A Resource to Support Conversations About Dementia with People who have a Learning Disability. London: Alzheimer’s Society.

Chapter 6

Three Decades On – Are We Truly Delivering Person-Centred Care? Caroline Baker

Learning objectives By the end of this chapter you will: • Gain an understanding of person-centred care frameworks. • Be able to evaluate your own person-centred practice. • Consider how you might disseminate person-centred approaches to other staff.

Introduction – the way it was What actually is person-centred care? It is probably easier initially to explain what it is not! Whilst I don’t want to begin this chapter with a sense of doom and gloom, I think it is important to reflect on the past 30 years to see how far we have come. Many of us take person-centred care and person-centred approaches for granted now (how could we work any other way?) but for some who are beginning their career in care, an overview of person-centred care and approaches can help them to reflect on what they read, be self-analytical about their approaches and make decisions about their mission. Even for those of us who have worked in nursing for a number of years, it is still helpful to revisit the ideas around person-centred care. I know that my own ideas have shifted over the years. However great the text‑book or research article is, it is only knowing the person you are caring for really well that will help you to understand the very essence of what it is to deliver true person-centred care. I commenced my career in nursing in 1986 initially as a care assistant in a large psychiatric hospital working on very busy admission assessment

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wards as well as long-stay wards that generally accommodated 32 people and four staff to care for them. I had moved from a secretarial job but knew that I had found my vocation on that very first day on the ward. The wards (according to the long-standing staff) were much improved with their bays of six or eight people as opposed to open wards of up to 60 people whose beds were lined side by side in the early years of the hospital. Each bay was semi-partitioned and each bed had its prescription NHS blanket (with the name of the hospital stamped all over it!), with its own narrow locker by the side. The pillows had to face the same way, the corners had to be tucked tightly in; everything had to be ‘just so’ in case we had a visit from the Nursing Officer but there was absolutely nothing personal to the patient and certainly nothing to orientate them to their surroundings. On a Sunday, one of my jobs was to do ‘the bundles’ for the patients to see them through the following week. A bundle consisted of a vest, a pair of pants and a pad and this was all neatly wrapped up like a sausage roll in a pair of ‘net knickers’ and placed in the top drawer. Some patients had their own clothes; others relied on ‘ward stock’ (and what appeared to be the best fit); although we always tried to help people to look and feel smart. Baths were done on a rota with ‘communal’ toiletries and we tried our best to roller or blow dry the ladies’ hair. If their bath happened to be after 4pm, they would be put straight into nightwear; although this may have been our own given choice on occasions, it was never afforded to the patient themselves. I hadn’t a clue about the theories underpinning person-centred care at that time; even later that year when I started my nurse training, I cannot recall theories of person-centred approaches ever being discussed. However, what I did see and hear for the most part was that we needed to be nice to people, to respect them, to give them choice and to maintain their independence wherever we could. Throughout my time at the hospital I learned about person-centred approaches through others. I adopted the practices and approaches that appeared to work well (and that I considered to be nice!) and I also learned that I would never be like some people whose harsh approach, rushed interventions and resultant distress for the patient was sometimes incredibly difficult to witness. I did report these people, resulting in me being ostracised for much of the time, but nothing seemed to change. Even as a qualified Staff Nurse, it was sometimes difficult to change the practices of others when nurses that were senior to me did not support the approach. I progressed to Senior Staff Nurse relatively quickly but

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remained frustrated that I hadn’t got the answer to why some people seemed to approach things differently. After four years, I left the hospital to take up a Deputy Manager post for a charitable trust with just over 30 care homes in the community, and this to me was the ‘light at the end of the tunnel’ or rather a huge rainbow that enveloped the people we were caring for. A community model engendered a person-centred approach without having to work too hard at it! At its simplest, people had their own rooms with their own belongings which immediately created a homely rather than an institutional feel. At its most complex, we began to learn about person-centred care and how we could apply it to reduce distress and promote well-being.

Person-centred people As I explained within the introduction, I didn’t learn about person-centred care when I was undertaking nurse training: I learned about individualised care or, as time moved on, holistic care. Both made absolute sense and gave me purpose and direction but still something was missing. I just didn’t know what. Even now, trying to get a definition for person-centred care that seems to embrace all that should be said about it is quite difficult! Perhaps when we think about how we should care for others we should simply think about how we would want to be cared for ourselves? Some staff talked about care to be delivered as they would wish for if it were their parents or grandparents they were caring for. But can such care ever be the care that the person would want for themselves or only representative of what the adult child or even grandchild think they would want? Do our thoughts on what good care is actually reflect the needs or desires of the person being cared for or in fact what we would want for ourselves? Thinking of my own parents, I would want to keep them safe and well as a main priority but my father at the age of 79 wants to go hand gliding despite his relative ill health! If I was a nurse working with my father in a care home, I would be pulling out all the stops to risk-assess the idea and try and make it happen for him (because that is his wish) but as a daughter I just want to say no! I have learned from many people during my career in dementia care but the following people and their work have been highly significant in helping me to provide person-centred care for people living with dementia. Of course, these are my own personal gurus (in the order that I came across them) but I hope that the summaries will give the readers an insight into some of the main ‘frameworks’ of person-centred approaches.

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Kitwood – Dementia Reconsidered I was exceptionally fortunate to attend my initial Dementia Care Mapping (DCM) course (Brooker and Surr 2005) with the late Tom Kitwood whose knowledge and levels of inspiration in caring for people with dementia knew no bounds. Finally, I felt that I had an answer and felt validated for those things that I had been doing well but also a real insight into things that I thought I had being doing well but had actually been a form of Malignant Social Psychology (MSP) (Kitwood 1997) (see Table 6.1 for some examples of MSP). MSP can best be explained as the things that we do or say (or don’t do or say) that may detract from a person’s well-being but are often done without malicious intent (Kitwood 1997). In my efforts to make a lady look nice, putting her hair up on top of her head and exclaiming to my colleagues ‘Aw, doesn’t she look cute!’, I had been infantilising her, treating her like a child. In a quest to rescue a gentleman who was struggling with his buttons and taking over (so that he didn’t become frustrated or worried), I had disempowered him. In my former hospital experience, psychological (and sometimes physical) abuse had been obvious, whereas MSP teaches us about the things that are often subtle, mostly carried out without malicious intent but have the potential to induce ill-being. Table 6.1: Examples of MSP and PPW Malignant Social Psychology (MSP)

Positive Person Work (PPW)

A carer pulls a resident away from the table in their chair without giving any warning. The resident looks startled. (Disruption/Objectification)

A carer bends down to speak to the resident and asks if they have finished their meal and if they would like to move from the table. (Negotiation)

A member of care staff is talking to another member of staff whilst helping to hoist a resident but not involving the resident. (Ignoring)

Care staff observe that a resident is being anxious and potentially distressed. They address her by name and ask if they can help whilst holding her hand and listening to her. (Recognition)

Kitwood states that if we were to compare the standards and expectations of dementia care held, say, ten years ago with those that are held today, the change would seem almost revolutionary (Kitwood 1997). He goes on to attribute this to community settings, positive care planning and a lack of institutional regimes but recognises that a large mass was still lagging far behind. Of course Kitwood makes reference to all of the elements of care that should be taken into consideration such as knowing the person and their

Are We Delivering Person-Centred Care?

life preferences, and ensuring that their physical needs are met as well as their psychological (including the possibility of depression), but the main focus is on incorporating and providing Positive Person Work (PPW) and eradicating MSP to maintain personhood. When we begin to learn and think in terms of this framework, MSP becomes immediately obvious and so it is easier to use PPW to counteract any negative effect that we may have inadvertently caused. I doubt that we will ever completely eradicate MSP because, after all, we are all human and may sometimes be so busy that we forget to include the person in our conversation and therefore inadvertently ‘ignore’ them as we talk to our colleague over their head as to what we are doing next. However, raising awareness of MSP helps us to reflect on the impact that this may have and the necessity for ‘inclusion’ of the person we are caring for to get it right next time round.

People living with dementia: Christine’s story It might seem strange that the second guru on my list is a person with dementia but it was not until I read the work of Christine Bryden (2005) that I became aware of how much professional carers can learn from the person with the diagnosis of dementia. Until this point I was unable to recall any other publications written by people with dementia themselves. Obviously I had spoken with people living with dementia and listened to their thoughts and what they may need but I had not had any insights as deep as when I began to read through Christine’s book. It is the work of Christine and others living with dementia that has modified my care from the ‘expert’ approach as espoused by my gurus to what is practical and informed by the very people I am caring for. For example, we are guided to provide choice at every opportunity (which is right and proper) but for some people living with dementia, choosing is just too hard. If we really know the person we are caring for and we know that they find it difficult to choose, would it be more person-centred to give them their preferred choice that they have always had in the past if it is unlikely to change? Within her book, Bryden talks about needing ‘brain time-out’, after her brain becomes overloaded and fatigued; she likens it to a thickening fog in which she is unable to follow what is being said, with speaking, hearing and walking all becoming difficult and requiring routine and familiarity when this happens. Sometimes we are ‘judged’ by inspectors if we are observed to be present but not communicating with the person we are with, but if we are truly person-centred, we should recognise when the person we are caring

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for is in need of ‘brain time-out’, and the reassurance of our company may be all that is needed. The complexity of so many things is a source of anguish. Just getting up, how to make a cup of tea, how to go and have a shower, where are my clothes and what shall I wear? I can’t decide what to wear. Many decisions are simply so complex and I can’t remember what has been said or offered so can’t decide. It is much easier to go with the flow. (Bryden 2005, p.102)

I have used many of Christine’s quotes when developing training packages, as her descriptions of what she needs (and does not need) are so powerful. As you read through the text, it is comforting and validating to know that we are getting it right most of the time but some of her declarations may hit you like a lightning bolt! There are many more publications written by people with dementia now, each offering unique insights into how it feels (for that person) to live with dementia and potential coping strategies or support solutions that may benefit.

Brooker – treating people like VIPS My third guru in dementia care is Professor Dawn Brooker who is probably one of the most person-centred people I know! I was fortunate to work alongside Dawn at the University of Bradford when I worked as a DCM Consultant Trainer. An expert in approaches to people living with dementia, Dawn also taught me the valuable lesson that to enable us to be person-centred to those we care for, we have to be person-centred with each other first. We have to look after each other and support each other to give us the emotional resilience to provide the best care in what can sometimes be a very difficult job. More and more, I think we beat ourselves up when we don’t get it quite right for someone. Especially if, despite our efforts, the person with dementia remains distressed. A more positive stance might be that our person-centred approach to care is working – at the very least we are not blaming the dementia diagnosis (or the person). Instead we are reflecting on our own actions, what we might have missed and how we might get it right for them. Brooker’s initial publication about the VIPS Model she developed (Brooker 2007) walks us through a model whereby person-centred care is composed of four main elements. Brooker highlights that the acronym VIPS also stands for very important persons, which is a powerful way of defining the intended outcomes of person-centred care for people with dementia. Brooker states that although the words sound good (‘person-centred care’),

Are We Delivering Person-Centred Care?

the lived experience of care for people with dementia – particularly those living in long-term care – is anything but person-centred. Each of the four main elements (see Box 6.1) have a number of criteria for us to consider when implementing the approach into a setting and, as a team, we utilised this approach in a former organisation to help us to benchmark what we were already providing but also how we could improve our person-centred approaches in each of the areas. The programme had some fantastic results for the residents and won a number of awards (Baker 2015a, 2015b). Box 6.1: The VIPS model of dementia care (Brooker 2007) V – a value base that asserts the absolute value of all human lives regardless of age or cognitive ability I – an individualised approach recognising uniqueness P – understanding the world from the perspective of the service user S – providing a social environment that supports psychological needs.

Powers – seven steps to well-being Dr Al Powers is a geriatrician based in the USA who has published many articles and books, his latest describing the endeavour to improve wellbeing through seven domains (Powers 2014). Through his presentations and through his writing, the complex subject of providing specialist dementia care comes through as complete ‘common sense’. This is by no means to degenerate Powers’ work but his writing and model are easy to read and easy to apply. As a team, we have used Powers’ knowledge and incorporated the seven domains (see Box 6.2) into our new programme of care for people living with dementia in care homes, into our training and into our newly developed observational tool (Baker 2017). Powers states that he does not consider himself an expert in dementia care but a professional student of dementia, with people who are living with dementia being the true experts (Powers 2014). Box 6.2: The seven domains of well-being (Powers 2014) Identity – Who we are, what our life story is. Connectedness – How we can help people to connect to others.

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Security – How we can help people to feel safe and free from anxiety. Autonomy – How we can facilitate independence or help to maintain independence. Meaning – How we can help to give people a sense of purpose. Growth – How we can help self-esteem and learn new skills. Joy – Helping people to achieve a sense of fulfilment.

When we consider the seven domains we go back to my introduction about what person-centred care really is; is it more about how we would want to be cared for ourselves? I would want all of these things. For people to know me and what I need, to feel that I belong and that I feel safe. I would want to be able to be as independent as possible for as long as possible. Swaffer (2016) states that the anticipation of the loss of privacy and ability to care for herself is daunting. Knowing that her family and close friends will have to make decisions for her well-being, and that strangers may be managing her daily care and the way she is dressed, is more than uncomfortable. In relation to meaning, growth and joy, she also states that being with dementia and living with the symptoms of dementia is definitely not as much fun as having a birthday party, but having dementia is no reason to give up living or to die straight away. It may therefore be up to us as partners in person-centred care to find the key to unlock those moments that will help the people we care for to continue to experience meaning in their lives, and help them to ‘grow’ and experience joy whenever we are able to.

Person-centred care in practice For people in the advanced stages of dementia, the latter three stages of Powers’ (2014) seven domains may be more difficult to achieve, as people find it harder to communicate their needs and we may find it harder to interpret even nonverbal communication. This does not mean, however, that we cannot be person-centred in our approach and try to help people living with dementia to retain their identity and help them to feel connected and secure and, where we can, bring them joy. Below is a case study of a lady living in a care home which demonstrates the essence of person-centred care.

Are We Delivering Person-Centred Care?

CASE STUDY: PHOEBE Whilst visiting a care home I came across a lady in her bedroom which was off a corridor that was used as a ‘thoroughfare’ for staff and visitors who needed to access two other units. Phoebe was calling out repetitively. She was sat in a comfortable chair but did not seem to be engaging with anything or anyone. Her radio was on very quietly. When I asked the staff about Phoebe, they said that she always called out and that they had tried different things, looked at her pain levels and spoken to the GP but had, in essence, come to the conclusion that ‘it was part of her dementia’. I went in to Phoebe and introduced myself and tried to talk to her but she would not engage and kept her head down, continuing to call out. I tried to use touch, gently stroking her arm, but she pulled away. I could see that she looked fairly comfortable in her chair. I remained present but silent for a few minutes but Phoebe continued to vocalise a noise. I took my phone out of my bag and put on a playlist with tranquil (spa-type) music and very gently started massaging the shoulder that was nearest to me. After a few minutes, Phoebe’s vocalisations reduced and became quieter. After another few minutes, they stopped altogether and she rested her head gently against my hand. I continued to massage Phoebe’s shoulder and thought that she had fallen asleep but she lifted her head and looked out of the window, appearing to be engaged with the weather outside. We sat there for quite some time. I didn’t speak (thinking about Christine’s need for ‘brain time-out’) but we just sat, me continuing to apply gentle massage and Phoebe looking out of the window. After a while, I took the fluffy throw from Phoebe’s bed and wrapped it around her in the chair and simply said ‘OK now?’ Phoebe did not verbally respond and did not particularly smile but we seemed to ‘connect’. I went into the office with the nurse in charge and helped her to write a care plan for staff to follow the same intervention. We also realised that Phoebe may have been distressed with the constant traffic through the unit and so we took the simple step of putting a notice on the doors into the unit to ask people to be mindful of the need to remain quiet when walking through. Phoebe still occasionally becomes distressed and calls out but the staff are able to respond and reduce her anxiety and distress.

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Summary I don’t think people enter the caring profession unless they are already inherently person-centred, but as I highlighted at the beginning of this chapter sometimes we may cause unnecessary distress without particularly being aware of it. Listening to people living with dementia and looking at the various models of person-centred care can only help us to highlight positive ways of working and how we might plan our delivery of care to ensure that maximum well-being is achieved for each individual.

STOP AND REFLECT Which of the experts in dementia care resonate with you the most and why do their thoughts energise or inspire you? In your area of practice, do you think there are still elements of ‘institutional’ rather than person-centred practice? How might you begin to change them? If you had to define person-centred care for a publication, how might you define it? Do you think any of the authors are still missing something in relation to person-centred care? What else might we be able to do?

References Baker, C. (2015a) Developing Excellent Care for People Living with Dementia in Care Homes. London: Jessica Kingsley Publishers. Baker, C. (2015b) The PEARL programme: caring for adults living with dementia. Nursing Standard. 30(5): 46–51. Baker, C. (2017) Enhancing wellbeing of residents with dementia in care homes. Nursing Times. 113(12): 31–25. Brooker, D. (2007) Person-Centred Dementia Care: Making Services Better. London: Jessica Kingsley Publishers. Brooker, D. and Surr, C. (2005) Dementia Care Mapping: Principles and Practice. Bradford: University of Bradford. Bryden, C. (2005) Dancing with Dementia. London: Jessica Kingsley Publishers. Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press. Powers, G.A. (2014) Dementia Beyond Disease: Enhancing Well-Being. Baltimore, MD: Health Professional Press. Swaffer, K. (2016) What the Hell Happened to my Brain? Living Beyond Dementia. London: Jessica Kingsley Publishers.

Chapter 7

Communication and the Enriched Model of Dementia Care Jan Leeks

Learning objectives By the end of this chapter you will: • Be able to consider how the enriched model can aid positive communication with a person with dementia. • Be able to reflect upon the impact that personal enhancers and personal detractors have on the psychological well-being of a person with dementia. • Understand how to communicate positively when a person with dementia is experiencing an unmet psychological need.

Introduction Removing the stigma associated with dementia is a global undertaking. In the 1980s Kitwood’s work on person-centred care heralded a cultural change which set out to recognise the personhood of people living with dementia (Kitwood 1997). Initially progress was slow, though momentum has gathered in recent years with the National Dementia Strategy (Department of Health 2009) and the Prime Minister’s Challenge on Dementia (Department of Health 2015). However, raising the profile and expectations of care remains a challenge. Whilst progress is being made, achieving a society which embraces, in its entirety, the personhood of a person with dementia is yet to be fully realised. Individuals must not underestimate their responsibility in influencing this cultural change, not only by their actions but also in their everyday language. How we communicate with and about people living with dementia has a powerful impact on their psychological well-being.

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In this chapter we are going to look specifically at communication and the enriched model (Kitwood 1997) (see Table 7.1). The enriched model of dementia care recognises the multiplicity of factors which affect a person’s experience of dementia including neurological impairment, physical health, the individual’s biography and personality, and the social environment in which they live (Kitwood 1997). Table 7.1: Communication in dementia using the enriched model Neurological impairment

The left temporal lobe codes speech sounds into words and connects these words with objects. This area is most vulnerable to Alzheimer’s disease (Milwain 2010). Initially damage causes word-finding difficulties which can progress to more severe communication problems, such as expressive and receptive dysphasia. Ensuring you allow extra time for a person to process what is being communicated is essential. Speaking in short sentences and eliminating distractions enables the person to focus on what you are saying.

Personality

Our personality traits can influence how we communicate; if we consider the five-factor personality model we can understand more about this, though it is important to appreciate that no one personality trait is preferable to another. Openness: Seeking out new experience; being curious versus being more consistent and cautious. Conscientiousness: The extent to which someone shows selfdiscipline and is dutiful and organised versus someone being more carefree or careless. Extraversion: Whether someone is outgoing and sociable and seeks stimulation in the company of others, or whether they are more solitary and reserved. Agreeableness: Whether someone is friendly and shows concern for others, or whether they are more suspicious or antagonistic to others. Neuroticism: Whether someone tends to experience a range of unpleasant emotions easily, such as anger, anxiety and depression, or whether they are secure and confident.

The Enriched Model of Dementia Care

Life story

As dementia progresses, a person’s ability to maintain their sense of identity diminishes. Knowing and understanding the person’s life story is essential to engaging and supporting them to maintain the links with their past and achieve well-being. This helps to build relationships which in turn helps us to interpret and anticipate needs. Positive communication is essential to maintaining the identity of a person. We can achieve this through failure-free conversations, for example, ‘Your daughter tells me you were the youngest in the family; what was that like?’ Using the preferred name of a person and visual prompts such as familiar photographs or items often helps.

Social psychology

How we interact with people can have a powerful impact on psychological well-being. Think about a time you felt you were not listened to. Reflect on how this made you feel and what you did. People living with dementia continue to experience psychological ill-being when they are undermined or not listened to.

Physical health

The physical health of people living with dementia can be overlooked. It is important to make sure hearing aids are working properly and people are wearing the correct and clean spectacles. Older people are also more likely to have some physical deterioration such as arthritis or hypertension. Physical well-being must be assessed and treated as there is much we can do to enable people to maintain their independence.

Wilson and Kneisl (1983) stated that cognitive dysfunction is the most devastating aspect of ageing. They went on to argue that the alteration of judgement, memory, affect and effective living skills in a society where humans are valued for their intelligence and performance is a fate worse than death and, for many, becomes a living death. Wilson and Kneisl attempted to present us with a sympathetic view of dementia, but if we are to embrace a true cultural change in dementia care then we must be aware of the impact our language has. In my clinical practice I regularly hear statements which continue to resonate with the words of Wilson and Kneisl (1983): ‘That’s not my mum.’ ‘There’s nothing left, he’s just a shell.’ ‘As long as they are clean and fed that’s all that matters now.’

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Kitwood (1997) described such thinking as Malignant Social Psychology (MSP); Kitwood used this to explain how people living with dementia are depersonalised by carers as part of a cultural inheritance, though he was clear that MSP is rarely intentional on the part of the carer; in fact it could be well meaning. From his observations of care practice, Kitwood produced a list of interactions known as personal enhancers (PEs) and personal detractors (PDs). Personal enhancers increase a person’s psychological well-being and personal detractors decrease psychological well-being. You can read about these further in Brooker (2007). A very commonly used PD is labelling; the following case study highlights how easily this can be done.

CASE STUDY: LINDA Linda is an 82-year-old woman who has just been admitted to the elderly medical ward for a course of intravenous antibiotics to treat her chest infection. Linda has a diagnosis of probable Alzheimer’s disease. Linda can mobilise independently and she is fully continent though she does have some word-finding difficulties and her speech is often muddled. At the afternoon handover Linda is described as a pleasant lady, who is waiting by her bed for the doctor who will be seeing her this afternoon. It is relayed that if she is to stay longer on the ward, her sons will bring her some more clothes later that evening. When you are doing the afternoon medication round, you notice Linda is walking up and down the corridor, often entering other side rooms and disturbing the patients. Several times staff have taken her back to her own bed space but each time she gets up again and paces the corridor. When the ward doors open she attempts to push past the doctors who come and go; she is unsuccessful each time but stands at the door shouting and banging. When staff try to guide her from the door she attempts to bite them and at one point urinates on the floor.

STOP AND REFLECT Think about the words that may be used to describe Linda during the next handover.

It would not be unusual to hear labels such as: • Wanderer/walker • Disruptive/difficult

The Enriched Model of Dementia Care

• Incontinent • Aggressive/verbally aggressive • Challenging behaviour/demented. As soon as we begin to attach labels to a person’s behaviour or actions we treat them accordingly. So when a nurse hears in handover that Linda is incontinent and presenting with challenging behaviour there will often be: 1. an expectation of behaviour, and 2. an inertia over discovering what is troubling Linda, as everything is attributed to her diagnosis of dementia. Let us consider the following from Linda’s perspective: I’ve been sitting here such a long time now, I don’t know where I am or why I am even here. I think I’ll just find the toilet then I’ll be off. These corridors are so long and confusing, I am exhausted walking up and down, the noise is terrible everyone pushing past and shouting it’s like Piccadilly Circus, I wish George was here – he would know what to do. Oh, look, I am sitting down again, I’ll only get stiff if I sit down too long, the doctor told me to keep moving…ohh I do need the toilet, if only I could find one a bit more private, everyone is coming in and out of these doors, if I go there I might find a quieter one and ring George to come for me. What! What! These men are pushing me and laughing, I’ll give them laughing. Damn door it won’t open, why am I here? Why won’t they let me go? What are they doing? All looking at me, the noise is awful. Get off me, let me go. Oh no, what’s happened, I’ve wet myself in front of everyone, everyone’s looking, it’s down my trousers, on the floor and in my shoes, I am so ashamed.

STOP AND REFLECT Do you think the labels attached earlier explain how Linda experienced the situation? How do you think Linda would describe what has just happened to her?

Below is a list of common labels used in dementia care (see Table 7.2); by using words such as these we continue to disassociate ourselves from the person living with dementia. Alternatives are offered which are more in keeping with a person-centred approach. There are two labels left blank

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(*) for you to reflect on and consider how this could be phrased using a person-centred approach. Table 7.2: Labelling people and behaviours Label

Context

Person-centred approach

Person-centred description

Challenging behaviour

David has had challenging behaviour today

Recognising this is a psychological unmet need, and the behaviour is a means to communicate that need

David became frightened when he did not recognise where he was and tried to leave the unit

Resistive to care

Lloyd is resistive to care

Being aware that this is often an unmet psychological need of attachment and comfort (Lloyd does not feel safe with the staff attending to his personal care)

Lloyd can become anxious when he needs help with intimate care

Wanderer/ walker

Emily has spent her day wandering/ walking around the unit

Understanding that this is usually a sign of an unmet psychological need of occupation

Emily has spent the day walking around the unit; at times she seemed to be occupying herself by polishing the pictures

Disruptive

Jane is disruptive at mealtimes

*

*

Feeder

Ruth is a feeder and needs full assistance with meals

Ruth is now depersonalised as a human being as she is labelled as a feeder

Ruth can eat her meals with help

Toileted/ toileting

Mafhida requires regular toileting

Mafhida has become a task to be completed (it is interesting that ‘toileted’ and ‘toileting’ do not appear in the English dictionary)

Mafhida can use the toilet if staff offer to help her

Attention seeker

Mustafa is demanding

*

*

Behaviours

People

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It is important that the language we use when communicating with or about people living with dementia is in keeping with a person-centred approach. Using labels means we attribute behaviours to the diagnosis of dementia; this stops us from being curious about the meaning of the behaviour and so exploring the person’s expressed and unmet need. The language we use to describe someone is an indication of how we recognise their personhood; it will also influence how our colleagues approach and understand the person. If you can help all the staff you work with to make a commitment to use person-centred language you will be active in changing the culture of dementia care.

Communication dilemmas It is likely that most of the people reading this chapter on communication have, at some point in their career, experienced a communication dilemma. By that I mean not knowing how to answer a question or statement posed by a person living with dementia. A question I am asked constantly in practice is ‘What do you say when someone asks for their deceased mother/husband/wife?’ Usually a lively debate ensues around the ethics of lying (see Chapter 9). I do not propose to have that discussion here, though I will reflect on common practices when faced with a communication dilemma and consider their application as a PD. Although the question ‘Where’s my mother?’ is used to consider four common interventions (see Table 7.3), the work can easily be transferred to other communication dilemmas such as ‘I am going home now.’ Table 7.3: ‘Where’s my mother?’ Ann approaches the nurse and asks ‘Where’s my mother?’ Intervention

Care staff response

PWD response

PD

Telling the truth

‘Ann, your mother died some time ago’ or ‘How old are you, Ann? – So how old do you think your mother would be if she were alive?’

Ann may become tearful and distressed on learning her mother is dead. She may become angry and deny the possibility that her mother had died.

Relationship is now problematic, due to distress or mistrust. This is known as Invalidation as the reality and experience of Ann is not being recognised. cont.

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Intervention

Care staff response

PWD response

PD

Distracting

‘Why don’t you go into the lounge, Ann; they will be serving tea soon.’

Ann may move to the lounge as suggested but may continue to ask for her mother.

This is known as Ignoring, as the need for Ann to express her feelings around her mother and the reasons she is looking for her mother are being ignored.

Ignoring

Care staff walk past Ann when she is asking them where her mother is.

Ann becomes increasingly distressed and follows staff around repeating the question.

Often this happens because staff do not know how to respond. As a PD it is known as Withholding as Ann’s need for contact is not being met.

Lying

‘Your mum will be here soon; she’s just popped to the shops. Why don’t you sit in the lounge and wait for her?’

Ann is briefly placated and sits in the lounge for a short whilst and then asks again where her mother is.

In this context deceiving a person with dementia is known as Treachery. This is because the person is being deliberately manipulated to stop asking a question which is difficult to answer.

Notes: PWD = person with dementia; PD = personal detractor

STOP AND REFLECT Think for one moment and consider that it is you searching for your mother (or another loved one). Think about how you are feeling. Write your thoughts down.

In Table 7.4 we can see several feelings that may be associated with unmet psychological needs (Kitwood 1997) with some suggested interventions to help meet the need being expressed.

The Enriched Model of Dementia Care

Table 7.4: Responding to need Feelings associated with an unmet psychological need

Psychological need

Intervention to support psychological need

Sad

Comfort

Giving comfort

Anxious

Using soothing tones

Insecure

Holding hands

Hungry

Hugging

Thirsty

Food

In pain

Pain relief

Alone

Inclusion

Lonely

Eye contact

Abandoned

Moving place

Isolated

Involving in discussion

Ignored Loss of self

Encouraging the person into the social environment physically and emotionally

Involving in activities Identity

Knowing the person

Loss of identity

Detail of life history

Confused

Using the name the person is most comfortable with

Lost Scared

Promoting a continuity with the past Attachment

Frightened

Helping someone feel secure means building an honest relationship Acknowledging the person’s feelings

Worried

Being trustworthy

Anxious Uncertain Bored

Occupation

Meaningful engagement

Useless

Giving the person a sense of control

Redundant

Empowering the person to have an impact

Out of control Disempowered

Doing something meaningful

So, a person-centred response to such communication dilemmas would be to resist focusing on the question posed but to explore the feelings behind the expression. Stokes (2000) suggests we should affirm the value of effective communication and continually search for means to nurture emotional well-being. In Ann’s case, when she was asking for her mother, we would observe her body language and expression closely, consider what unmet need she might have and validate the expressed feeling rather

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than answer the question. This way we are trying to understand the lived reality of the person and thus strive to make an emotional contact. Look at the two scenario examples below and consider the differences between each of the scenarios. (Note in the second conversation how Tom’s feelings are validated (Feil 1992) and an attempt to meet his psychological needs is made.)

CASE STUDY: TOM Tom is at the day centre. He has been saying he is going home for most of the day; it is now the middle of the afternoon and he has been sitting for a while after lunch. Rebecca is working with him.

Scenario 1 Tom ‘Right, it’s time for me to go.’ Rebecca ‘Where are you going now?’ Tom ‘I’ve told you already: I need to go home and find Mum. She will be waiting for me and I don’t want to get into trouble again.’ Rebecca ‘Tom, we’ve been through this already today. The transport will be coming at 3.30 to take you home to Kate, your wife.’ Tom (Becomes more anxious) ‘I need to go and find my mum. She’s waiting for me.’ (Tom heads to the door.) Rebecca (Moves to stand in front of him) ‘Tom, I am sorry, but you can’t go outside. It’s raining and you’re not wearing your coat. You’ll get lost out there.’ Tom (Raising his voice) ‘Move out of my way, I need to go. Mum will be waiting.’ Rebecca (Remains in front of the door) ‘Tom, I know it’s difficult, but the transport is arranged to pick you up at 3.30. Kate knows where you are, and you can’t go out at the minute; it’s cold and wet.’ Tom (Takes hold of Rebecca’s arm) ‘I said move away – I need to see my mum.’

Scenario 2 Tom Rebecca Tom Rebecca Tom

‘Right, it’s time for me to go.’ ‘Time for you to go; where are you going?’ ‘Home. Mum is waiting for me.’ ‘Your Mum is waiting for you – you sound busy.’ ‘Yes, she’s got jobs I need to do or I will be in trouble.’

The Enriched Model of Dementia Care

Rebecca (Smiling) ‘Your mum always found jobs for you to do. Look, here’s a photo of you doing her garden; she always kept you busy. Shall we go and pot some plants up ready for the garden? We can put them out when the rain stops.’ Rebecca (Moves away to window sill and hands Tom some pots) ‘We can do these outside in the shed if you like. I am putting my coat on. Do you want yours?’ Rebecca puts her coat on and hands Tom his. She takes him to the shed where he likes to spend time messing about on rainy days.

It is very easy to focus on directly answering the question someone asks, and whilst the answers we give are not intended to cause distress, we may be unintentionally ignoring the psychological needs of the person with dementia. For family members it can be distressing or frustrating when an older person with dementia is asking for their deceased parent or saying they want to go home, often leaving the family member at a loss about how to respond and causing conflict within the relationship. Role modelling positive interactions which help to understand the perspective of the person living with dementia is important. If we continue to misinterpret the reactions and actions of a person living with dementia it is further evidence of the ‘ravages of the disease’, rather than recognising it as the ‘ravages’ of psychological misunderstanding (Sabat et al. 2011).

STOP AND REFLECT Below are some questions to help you reflect on what you have learnt. Think of a person living with dementia you have met in practice. (If you do not have a practice example think about Linda who you met earlier in this chapter.) Review the enriched model and consider how this influences their communication. What might you do differently now? Consider the case of Linda; staff are now asking that she is given medication to help calm her down as she has ‘challenging behaviour’. What could you do to support both the staff and Linda? How would you help staff to consider Linda’s perspective? What is the impact on Linda if the staff continue to use labels to describe her?

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Imagine Ann is asking for her mum; she is crying and holding on to people. However, everyone is busy, and she is told repeatedly to sit in the lounge and that her mum will be there soon. What do you imagine the eventual outcome will be for Ann? How could things be different for her? What would you do to help meet her psychological needs?

References Department of Health (2009) Living Well with Dementia: A National Dementia Strategy. London: Department of Health. Department of Health (2015) Prime Minister’s Challenge on Dementia. Delivering Major Improvements in Dementia Care and Research by 2020. London: Department of Health. Feil, N. (1992) Validation: The Feil Method. Ohio: Edward Feil Productions. Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press. Milwain, E. (2010) The brain and person-centred care: division of function across the cerebral cortex – what it means for people with dementia. Journal of Dementia Care. 18(2): 23–28. Sabat, S.R., Johnson, A., Swarbrick, C. and Keady, J. (2011) The ‘demented other’ or simply ‘a person’? Extending the philosophical discourse of Naue and Kroll through the situated self: the demented other or simply a person? Nursing Philosophy. 12(4): 282–292. Stokes, G. (2000) Challenging Behaviour in Dementia: A Person-Centred Approach. Bicester: Winslow. Wilson, H. and Ren Kneisl, C. (1983) Psychiatric Nursing. California: Addison-Wesley.

Further reading and resources Barker, S. and Board, M. (2012) Dementia Care in Nursing. London: Sage. Brooker, D. (2007) Person-Centred Dementia Care: Making Services Better. London: Jessica Kingsley Publishers. Downs, M. and Bowers, B. (2014) Excellence in Dementia Care: Research into Practice. Second edition. Maidenhead: McGraw-Hill Education. Kitwood, T. (1997) The experience of dementia. Aging and Mental Health. 1(1): 13–22.

Chapter 8

Psychosocial Approaches to Behaviours that Challenge Care Esme Moniz-Cook

Learning objectives By the end of this chapter you will: • Be able to understand the practice implications of terminology associated with challenging behaviour. • Be aware of the rationale for structured individual formulations in treatment. • Be aware of the evidence base and practice implications. • Know how to identify clinically significant challenging behaviour. • Be able to appreciate the different skills and pathway requirements for delivering interventions.

Introduction Challenging behaviour or ‘behaviour that challenges’ (BtC) (British Psychological Society (BPS) 2018) occurs in up to 90 per cent of people with dementia and is associated with the breakdown of home care, increased psychiatric referral, misuse of medication and increased health care costs (Cerejeira, Lagarto and Mukaetova-Ladinska 2012) and significant family burden (Chen et al. 2018). In family settings, the incremental cost of just one increase of a behaviour or ‘symptom’ has been estimated in the US at $30 per month on average (Herrmann et al. 2006). In the UK, behaviours described as ‘agitation’ increase home care and care home costs, with an average excess cost per person of £4091 a year (Morris et al. 2015). A panEuropean study found that the total monthly mean cost differences due to agitation were €445 in home care settings and €561 in care homes, with a

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significant additional 17 per cent per month increase for indirect (family) care costs for those living at home (Costa et al. 2018).

Terminology and its practice implications Challenging behaviour in dementia includes a wide range of behaviours such as: violent resistance to help with personal care and other aggressive responses; repetitive questioning; ‘shadowing’ (i.e. continually following a carer about); restlessness; ‘wandering’; yelling or screaming; socially inappropriate behaviour (i.e. ‘sexual advances’ towards staff and others, stripping, urinating in public places, eating inappropriately, crude language); hoarding and apathy. They are often a signal of distress by the person with dementia whose cognitive impairment can limit the ability to carry out desired actions, to express needs, or to inhibit their own behaviour – as would be ‘normal’ for them within their interpersonal and social context. People with dementia may not like the term ‘challenging behaviour’, due to the potential for undermining dignity and their sense of self (Swaffer 2014). Thus practitioners need to understand that these behaviours are: an expression of distress by the person with dementia that arises from unmet health or psychosocial need(s) reflecting an attempt by the person with dementia to maintain a sense of control, dignity and wellbeing, and/ or to ease discomfort or distress; and that others in the environment find this difficult to understand or cope with and can also become distressed. (Adapted from BPS 2018, p.1)

The bio-medical literature describes these as behavioural and psychological symptoms in dementia (BPSD), neuropsychiatric symptoms (NPS), or ‘non-cognitive symptoms’ (see Chapter 1), to include psychiatric symptoms such as agitation, anxiety or depressed mood, hallucinations, delusions and sleep disturbances. These bio-medical perspectives acknowledge the psychological suffering by the person and that there can be co-morbid or accompanying mental illness. However, they take no account of the context in which the behaviour occurs. The ‘antidementia’ drugs (acetylcholinesterase inhibitors) have not demonstrated significant preventative impact on BPSD (Chen et al. 2018) and firstline management with antipsychotic drugs is not recommended (see for example NICE guideline (NG97), 2018, 1.7.2). Psychosocial approaches to treatment are seen as pivotal for successful treatment of BPSD (Tible et al. 2017). The terms ‘challenging behaviour’ or ‘BtC’ are used, since these are concerned with practice that takes into

Behaviours that Challenge Care

account the interplay between unmet needs and distress of the person, the distress caused to caregivers and additionally the context. For example the wide-ranging ways others respond to BPSD may exacerbate distress for the person, or their family or staff carers, or others in their environment. Therefore, to deliver ‘bio-psychosocial’ interventions (Division of Clinical Psychology (DCP) 2013) for unmet health and psychosocial need in the person with dementia with challenging behaviours (BPS 2018), the practitioner or therapist also has to consider how to support the ‘care system’. Interventions to support the care system can involve significant additional resources such as staff training (Spector, Orrell and Goyder 2013) or supervised practice (McCabe et al. 2015), family education and counselling (Feast et al. 2016).

CASE STUDY: MAJOR NORTH (ROBERT) Major North (Robert), aged 82, moved to the care home from his own home some 15 months ago. He continually insisted that he wanted to go ‘home’, and was often found at the door attempting to go out – sometimes this occurred early in the morning when the night staff were busy with the routines; otherwise he remained in his room and had become withdrawn. His GP prescribed an antidepressant. His mobility deteriorated due to frequent falling, which then precipitated an increased need for assistance with personal care, resulting in assaults on several staff, many of whom became quite frightened of him. Antisocial behaviour such as urinating and ‘stripping’ in a corridor had also occurred. His family and some friends remained very distressed at his rapid deterioration and there were tensions between them and care staff. Their frequent visits and discussions with staff led to them being perceived as ‘demanding’. Staff initially felt that Robert was not settling because these visitors reminded him that he had given up his home. However, the family and friends did not agree and increased their visits since Robert was pleased to see them and some felt they could ‘keep an eye on his care’. Recently he was re-admitted, for the fourth time, to hospital following a fall and suspected fracture. This time his son-in-law discussed his health with orthopaedic staff and he was transferred to an Elderly Medicine ward where he was treated for faecal impaction. The geriatrician discontinued benzodiazepine (which had been prescribed just prior to entry to the home) and his antidepressant and co-codamol prescriptions, and advised accordingly on discharge.

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Detailed information for a functional analysis (see the next section) included: • mobility deteriorated about a year ago after several falls in his room; • since the recent medication review, there have been few recorded falls; • occasional ‘diarrhoea’ could be ‘overflow’ due to his longstanding constipation problems; • aggression has escalated during staff attempts to help him clean himself, where his poor mobility does not allow him to do this himself; • regular urinary tract infections (UTI) may be due in part to his deteriorated hygiene since records of increased antisocial behaviour coincide with UTI; • he has not resisted assistance with personal care at the hospital and accepts assistance from two staff at the care home. This suggested that ‘unmet needs’ as antecedents to challenging behaviour could be managed through care practice. The following information helped with a ‘formulation’ (analysis) that guided the following management plan, which was monitored over 16 weeks: • Health: Robert is prone to constipation and used laxatives in the past; constipation possibly exacerbated by co-codamol and low-level pain due to consequences of frequent falling causing discomfort. Review of the benzodiazepine, antidepressant and co-codamol appeared to coincide over the month with reduced frequency of falls at the care home. The management plan reminded staff to: support daily increased movement/exercise and adhere to a diet/increased fluids, compatible with constipation management; monitor for serious constipation (i.e. ‘overflow’) and liaise with the GP/district nurse; check for early signs of UTIs (frequency, clouding of urine, changed behaviour) and liaise with the GP. There was one episode of ‘overflow’ with mild constipation which was managed at the GP surgery by the district nurse, since Robert resisted her attempts to provide treatment at the care home; no UTIs or episodes of antisocial behaviour were noted. • Psychosocial: Robert is a neat fastidious man who appeared ashamed of his uncleanliness; he has a high need for privacy during

Behaviours that Challenge Care

toileting and self-care. According to his son he enjoyed walks, sport and physical activity. Prior to re-location to the care home, he had maintained weekly walking with his club and daily morning and evening walks in his village. A management plan to improve confidence with walking included: initial strength and balance exercises developed by a physiotherapist with video instructions recorded on his phone for 1–3 minutes twice a day. These were carried out as a ‘social interaction’ activity with a family member, friend, activity co-ordinator or a staff member who felt able; then daily walking outside the home using a mix of care staff, volunteers, family and friends; and one month later he agreed to re-engage with his walking club where his friends collected him each week from the care home. With encouragement he also re-engaged in watching TV sport and outdoor walking programmes and chatting with staff and family who had similar interests. In the autumn he occasionally accompanied his grandson on a Saturday to ‘a fish and chips lunch’ followed by football. The reported unhappiness had eased, and no attempts to leave the home occurred. • Care system: Robert requires help with personal care, but can feel threatened by some staff, either because of their physical appearance or because they themselves are frightened and have difficulty in adjusting their approach. Two staff members with the least difficulty in assisting with personal care worked with six others to help them adjust their approach to Robert. They were then scheduled across shifts to support Robert with personal care. Episodes of ‘aggressive resistance’ during personal care were much reduced and no assaults on staff were recorded. The perceived demands from his family and friends were no longer seen as problematic for staff. Some of his family and friends now had opportunities for improved social interaction which was acceptable to Robert. The case above demonstrates that there is no magic pharmacological or psychosocial ‘pill’ (Moniz-Cook et al. 2017, Chapter 1) for the management of challenging behaviour. Individually formulated ‘casespecific’ approaches (Holle et al. 2016; Kales, Gitlin and Lyketsos 2015; BPS 2018) have the best chance of success.

STOP AND REFLECT The care home wanted to give Robert ‘notice to leave’ on his return from his fourth most recent hospital visit. This precipitated a referral

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to the Community Mental Health Team for Older People (CMHT-OP) and involvement of an Admiral Nurse (i.e. a specialist dementia nurse practitioner). Any of the following professionals might have first seen Robert following referral by the GP: psychiatrist, Admiral Nurse or other community nurse, social worker, occupational therapist or clinical psychologist – referred to here as a ‘health or social care practitioner’. As the first practitioner assessing the case: What work might you need to do, with whom, and over what period of time, to implement the intervention plan described and achieve the positive outcomes outlined? What might be the obstacles to information required and/or delivery of the plan? How would you overcome these?

Functional analysis for the management of challenging behaviour in dementia A systematic, individually formulated approach that grew out of the Who–Where–When traditional ‘ABC’ behaviour management literature is known as functional analysis (Stokes 2017, Chapter 8; Moniz-Cook et al. 2012; 2017, Chapter 1). The ABC model involves observation of: A = antecedents or what occurred before B = the behaviour C = consequences or what occurred immediately Criticisms of its simplistic approach to the complexity of challenging behaviour in dementia led to the development of functional analysis. This uses person-centred observations within the context of where the behaviour occurs, to generate ideas about the meaning of behaviour to guide interventions as follows: • Assessment: take a detailed history of the person and their needs; involve others; observe emotions and interactions in the context of the behaviour; identify pre-disposing factors (such as the person’s routines and habits) and triggers during an episode; use ‘ABC’ charts (see Table 8.1) to determine situational factors if caregivers cannot identify these.

Behaviours that Challenge Care

• Case-specific formulation: use wide-ranging information about the person to generate hypotheses about the meaning of behaviour(s), or what the person may be communicating during an episode of challenging behaviour, such as an unmet need; and what might be maintaining the behaviour currently, such as the way others interact with the person. Draw up a formulation as ‘best guesses’ for the potential cause(s) and creatively consider, with others who have knowledge of the circumstances, relevant interventions that could be tried. • These can be related to health and/or psychosocial need in the person and/or the need in the care system/organisation providing support to the person (Moniz-Cook et al. 2017, Chapter 2). • Test the effect of these ‘bio-psychosocial’ and/or system-related interventions, by evaluating the effect of these on behaviour and/ or caregiver coping, and monitor this over time. Table 8.1: ABC chart for observing behaviour Person’s name: Behaviour: e.g. yelling/screaming (be as specific as possible) Antecedents (before)

Behaviour

Consequences (after)

Date, time, location? What was happening just before the behaviour, e.g. who was there?

What exactly does the person do that you want him or her to change?

What followed the undesired behaviour? Who said what? Who did what?

For over a decade functional-analysis-based ‘bio-psychosocial’ approaches have been seen as the first-line alternative to pharmacological management of behavioural symptoms (NICE/SCIE 2007). Recent systematic reviews continue to advocate for its use (Cavanagh and

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Edelstein 2017; Tible et al. 2017; Dyer et al. 2018) or that of its use precursor, ‘behaviour management’ (Brodaty and Arasaratnam 2012; Abraha et al. 2017) as the best approach to intervention. Despite this a ‘Cochrane Clinical Answers’ note (2013) based on the Cochrane review of Moniz-Cook et al. (2012) suggested that functional analysis does not have the strength of evidence to recommend it in clinical practice. However, Cohen-Mansfield et al. (2012) argue against using evidence that is solely based on reviews of randomised controlled trials, since considerable useful information that is often more valid to practice can be overlooked. Tible et al. (2017) note that when evidence from controlled studies is not available, clinical empiricism is often used in clinical practice. Single case designs of hypothesis-driven functionalanalysis-based interventions tested in research (Moniz-Cook et al. 2001a; 2003), or services that monitor how successful interventions are not sustained (Bird 2010), are examples of pragmatic real-world evaluation of evidence-based interventions. Although not described as functional analysis, key aspects of this structured case-specific approach–requiring supervision from a trained therapist and considering the organisational contexts in delivery of an intervention–are integrated into recent practice recommendations in the UK (NICE 2018). These are not far removed from the outline for functional-analysis-based interventions outlined earlier in this chapter and other frameworks (see Kales et al. 2015). For example, the NICE (2018) recommendations for the management of ‘non-cognitive’ symptoms in dementia include: • Conduct a structured assessment to explore the potential clinical or environmental causes of distress; check and address environmental causes (NICE 2018, 1.7.1; Pink et al. 2018). • Test and adjust interventions to resolve unmet need(s); offer initial and ongoing psychosocial and environmental interventions to reduce distress in people living with dementia (Pink et al. 2018). • Monitor the delivery and adjustments to support over time (see NICE 2018, 1.7.8) requiring practitioners to engage in a process of ongoing review (Pink et al. 2018 – care coordination). • Provide face-to-face training and support in the delivery of care, including understanding how the organisation delivers care, follow-up to discuss particular situations and advice on reduction of antipsychotics (NICE 2018, 1.13.2).

Behaviours that Challenge Care

• Help families to understand and respond to behaviour changes and alter their communication styles accordingly (NICE 2018, 1.11.2).

CASE STUDY: MARY Mary (aged 73) was diagnosed with Parkinson’s disease 12 years previously. She has had visual hallucinations for three years and more recently delusions, amongst other symptoms that were troubling for her husband John. She is aware of the effect of her delusionary behaviour on John and is upset about this. Recently her neurologist prescribed the ‘anti-dementia drug’ donepezil and John feels she is on a ‘cocktail of medications’ which have not been monitored over the years, since review by the neurologist has been intermittent and often arranged by himself at the neurologist’s private clinic. John reports that NHS outpatient neurology clinics have long waits or have cancelled appointments, and he was no longer in touch with the Parkinson’s nurse as he didn’t feel she accessed the neurologist when he required this. John continued to support his wife with some normal activities such as visits to their local church, the hairdresser and occasional weekends away with their friends. Friends have a rota to support Mary once a week whilst John attends his club. John arranged respite at a care home but feels guilty; Mary was unhappy at the care home, refusing food and medication whilst there. On her return the GP referred her to old age psychiatry. The Community Mental Health Nurse (CMHN), working with a locum old age psychiatrist, instigated review of her relatively long-standing prescriptions of small doses of haloperidol, risperidone, zopiclone and clozapine. As some drugs were withdrawn, blood tests to monitor her health were arranged. Initially both John and the GP were concerned about the proposed medication review given that Mary has been under the care of the neurologist for many years. The CMHN and a clinical psychologist worked together to test out emotion-orientated methods of communication (Finnema et al. 2000) and assisted John and Mary’s friend (a neighbour) to use strategies (see De Klerk-Rubin 2008, Part II) to reduce Mary’s distress during the early evening and night. A care package was introduced by the social worker to provide respite that was acceptable to both Mary and John.

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STOP AND REFLECT Mary has been on an L-DOPA drug to treat Parkinson’s for many years. Neither her friends nor John appear to be aware that she may have a dementia diagnosis (see Chapter 1); she can converse and manages short walks and meals out, but since taking donepezil she is reportedly anxious and agitated sometimes during the night. What might the CMHN and the psychiatrist have needed to do, given that Mary was under the care of a neurologist and John is now depressed and burdened? As a health and social care practitioner, consider what type of creative care package you might consider to offer John respite and Mary some form a pleasure at these times?

Management of challenging behaviour at home and in care homes Challenging symptoms associated with dementia have been described in other chapters. For example see case studies in Chapter 1 of: aggression with visual hallucinations in George; or repeated questioning and ‘forgetting’ in the case of Alice; or for Diane, food refusal, weight loss, disengagement (not joining in activities – which may or may not be described as ‘apathy’), and ‘disorientation’ (early morning waking or trying to leave the home – which may or may not be described as agitation, in someone who may be depressed). All of these cases require support from health and social care practitioners, but these providers require more information than just recognising that the behaviour(s) are in some way problematic. The reasons why carers are distressed by a given behaviour are variable, with no direct relationship between behavioural symptoms and carer distress. One care staff member may see a problem as challenging whilst another appears mostly to understand and manage the situation. Similarly families including adult-children can have different views on how a parent can be supported. This can lead to tensions where the family themselves become the target of support. An important factor is that caregiver distress or coping difficulty – whether this is that of a family or care home – usually leads to referral by the GP to health or social care services and makes a given situation a ‘case’. Therefore the caregiving system is an important clinical target for the health or social care practitioner, to help resolve the ‘case’. Providing specialist support to care homes will require specialist skills, including taking into account the size and organisation of the

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care home and who in the staff group might be delivering care for a given resident. For example, in the case of Robert, staff who had been seriously assaulted could not provide care. The Admiral Nurse needed to work swiftly with the care home manager and also with selected staff to implement care within a sustainable shift system. In the case of Mary, her husband John had lost faith in services and was at the point of considering long-term care which neither he nor Mary wanted. He required psychological therapy before he agreed to the interventions described. Service pathways for the management of challenging behaviour in family care need to separate from those in care homes since the context of each of these settings is very different (BPS 2018). Practitioner skill sets and experiences will also need to reflect these differences. Measurement of the caregiver perspective of a given behaviour is not easy. Many CMHT-OP and memory services can find it hard to recognise clinically significant challenging behaviour, or to know when to remain involved as case managers to ensure timely access to ongoing skilled multidisciplinary professional support (Moniz-Cook et al. 2017; Manthorpe et al. 2018). The Neuropsychiatric Inventories – the NPI (for home care) and NPI-NH (for care homes) – are well validated, widely used clinician-rated measures of challenging behaviour in family and nursing home settings, respectively (Cummings et al. 1994). Ratings of frequency × severity scores of ≥ 4 on these inventories are seen as clinically significant (Zuidema et al. 2007). However, these measures do not describe behaviour in language that is used or understood by most caregivers. Other measures validated in the language of caregivers that also describe caregiver coping are the 24-item Revised Memory and Behaviour Problem Checklist (RMBPC) (Teri et al. 1992) and the Problem Checklist (Agar et al. 1997) for family caregivers, and the Challenging Behaviour Scale (CBS) (Moniz-Cook et al. 2001b) which is widely used in UK clinical care home and hospital practice (DCP 2013). The Cohen-Mansfield Agitation Inventory (CMAI) (Cohen-Mansfield 1986) for care home settings is used in research, but does not measure caregiver coping, thus making it difficult to measure the needs of the carer in managing ‘agitation’. A recent NIHR programme across England (Moniz-Cook et al. 2017, Chapter 6) noted that an RMBPC incidence score of ≥ 5 was equivalent to a clinically significant challenging behaviour on the NPI for family care settings, and a CBS score ≥ 4 was equivalent to a clinically significant challenging behaviour on the NPI-NH in care homes, with a cut-off point of ≥ 10 as indicative of severe challenging behaviour. The effects of successful interventions may not always be sustained such as when provider specialist services are withdrawn (see for example

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Bird 2010), or when case management cannot be sustained in those prone to dementia-related distress. Service models and specifications for in-reach care home provision and treatment in family settings need to identify and plan for such cases where significant distress might re-occur if resources for case management by specialist practitioners are weak.

STOP AND REFLECT As in the cases of Robert and Mary, they and/or staff and/or family may be less distressed following the support they received. How might you measure whether the challenges were resolved? For how long would you consider keeping them on your case load?

Conclusion In addition to particular behaviours that may relate to a dementia, there are multiple other causal factors both internal and external to the person, many of which have nothing to do with dementia per se, and which vary from case to case. The same causal factors can produce different behaviours, or the same behaviour can have different causes (Moniz-Cook et al. 2001a, 2003). The caregiving system also needs to be understood at the start to ensure that delivery of any support is feasible. Both pharmacological and psychosocial interventions often need to be considered together. For example, treatment of pain or a UTI may also require empathic support to soothe the person in distress. Practitioners need to be aware of some of the different skill sets, resources and experience required to support people with challenging behaviour at home and those living in care homes (BPS 2018).

STOP AND REFLECT Below are two examples of people with dementia with significant challenging behaviour: Joan has dementia and has had a heart bypass operation in the past and has a number of current health conditions such as diabetes, COPD and arthritis, and is being treated with various psychotropic drugs for a range of behavioural symptoms. In the past year Joan has been discharged three times, from an acute general hospital ward or a psychiatric ward, each time to a different care home.

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Think about the ways in which you will assess the case, including the strengths and weaknesses of the current care system and what steps you might take to support staff to provide care for the person. Think about what you might need to do to minimise the family’s distress. Consider Anne, similar to someone on your case load, who is living at home. She was recently diagnosed with ‘mild’ vascular dementia and she and her husband Richard have started to attend a monthly Alzheimer’s Society cafe. Anne ‘forgets’ and repeats questions, does nothing all day (apathy), has withdrawn from some activities, makes repeated phone calls to her sister who is becoming distressed by these, and often empties cupboards ‘looking for things’, sometimes blaming her frail husband for ‘hiding her things’ and sometimes becoming aggressive if corrected. Both Richard and Anne’s sister say they are ‘managing’ and do not need help. The GP is aware of their problems which led to referral and her dementia diagnosis. Anne and Richard have three adult children who are concerned and worry about how their father is coping. They have promised both parents to ‘never put them in a care home’. Think about: What might you do to assess the case fully to provide support to the couple and their family? What interventions might you consider? What resources and support might you need? How would you know if your support is helping? What period of time might you plan to case manage this family?

References Abraha, I., Rimland, J., Trotta, F.M., Dell’Aquila, G., Cruz-Jentoft, A., Petrovic, M., et al. (2017) Systematic review of systematic reviews of non-pharmacological interventions to treat behavioural disturbances in older patients with dementia, The SENATOROnTop series. BMJ Open, 7: e012759. Agar, S.M.C.E., Orbell, S., Elston, C. and Wang, M. (1997) Measuring the outcome of psychosocial intervention for family caregivers of dementia sufferers: a factor analytic study. Aging and Mental Health. 1: 166–175. Bird, M. (2010) A predominantly psychosocial approach to behaviour problems in dementia: treating causality. In D. Ames, A. Burns and J. O’Brien (eds) Dementia, Fourth Edition. London: Arnold.

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British Psychological Society (BPS) (2018) Evidence Briefing: ‘Behaviour that Challenges’ in Dementia. Leicester: British Psychological Society. Authors: I. James and E.D. MonizCook. www.bps.org.uk/news-and-policy/new-dementia-briefing-suggests-behaviourchallenges-can-be-result-unmet-needs (Accessed 03 August 2018). Brodaty, H. and Arasaratnam, C. (2012) Meta-analysis of nonpharmacological interventions for neuropsychiatric symptoms of dementia. American Journal of Psychiatry 169(9): 946–953. Cavanagh, C. and Edelstein, B. (2017) Challenging Behavior. In N.A. Pachana (eds) Encyclopedia of Geropsychology. Singapore: Springer. Cerejeira, J., Lagarto, L. and Mukaetova-Ladinska, E.B. (2012) Behavioural and psychological symptoms of dementia. Frontiers in Neurology. 3: 1–23. Chen, P., Guarino, P.D., Dysken, M., Pallaki, M., Asthana, S., Llorente, M. et al. (2018) Neuropsychiatric symptoms and caregiver burden in individuals with Alzheimer’s disease: the TEAM-AD VA Cooperative Study. Journal of Geriatric Psychiatry and Neurology. doi: 10.1177/0891988718783897 (e-pub ahead of print). Cochrane Clinical Answers (2013) http://cochraneclinicalanswers.com/doi/10.1002/ cca.106/full (Accessed 03 August 2018). Cohen-Mansfield, J. (1986) Agitated behaviors in the elderly. II. Preliminary results in the cognitively deteriorated. Journal of the American Geriatrics Society. 34: 722–727. Cohen-Mansfield, J., Thein, K., Marx, M.S., Dakheel-Ali, M. and Freedman, L. (2012) Efficacy of nonpharmacologic interventions for agitation in advanced dementia: a randomized, placebo-controlled trial. Journal of Clinical Psychiatry. 73: 1255–1261. Costa, N., Wübker, A., De Mauléon, A., Zwakhalen, S.M.G., Challis, D., Leino-Kilpi, H. et al. (2018) Costs of care of agitation associated with dementia in 8 European countries: results from the RightTimePlaceCare Study. Journal of the American Medical Directors Association. 19(1): 95.e1-e95.e10 doi: https://doi.org/10.1016/j.jamda.2017.10.013. Cummings, J.L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D.A. and Gornbein, J. (1994) The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology. 44: 2308–2314. De Klerk-Rubin, V. (2008) Validation Techniques for Dementia Care: The Family Guide to Improving Communication. Baltimore: Health Professions Press. Division of Clinical Psychology (DCP) (2013) Alternatives to antipsychotic medication: Psychological approaches in managing psychological and behavioural distress in people with dementia (Briefing Paper). Leicester: British Psychological Society. Authors: D. Brechin, G. Murphy, I. James and J.A. Codner. www1.bps.org.uk/system/files/Public per cent20files/antipsychotic.pdf (Accessed 03 August 2018). Dyer, S.M., Harrison, S.L., Laver, K., Whitehead, C. and Crotty, M. (2018) An overview of systematic reviews of pharmacological and non-pharmacological interventions for the treatment of behavioral and psychological symptoms of dementia. International Psychogeriatrics. 30(3): 295–309. Feast, A., Orrell, M., Charlesworth, G., Melunsky, N., Poland, F. and Moniz-Cook, E. (2016) Behavioural and Psychological Symptoms in Dementia (BPSD) and the challenges of family carers: a systematic review. British Journal of Psychiatry. 208(5): 429–434. Finnema, E., Dröes, R.M., Ribble, M. and Van Tillberg, W. (2000) The effects of emotionorientated approaches in the care of persons suffering from dementia: a review of the literature. International Journal of Geriatric Psychiatry. 15: 141–161. Herrmann, N., Lanctot, K.L., Sambrook, R., Lesnikova, N., Hebert, R., McCracken, P. et al. (2006) The contribution of neuropsychiatric symptoms to the cost of dementia care. International Journal of Geriatric Psychiatry. 21: 972–976. Holle, D., Halek, M., Holle, B. and Pinkert, C. (2016) Individualized formulation-led interventions for analysing and managing challenging behaviour of people with dementia – an integrative review. Aging and Mental Health. 13: 73–83.

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Kales, H., Gitlin, L. and Lyketsos, C. (2015) Assessment and management of behavioral and psychological symptoms of dementia. British Medical Journal. (Clinical research edition). 350:h369. doi: 10.1136/bmj.h369. Manthorpe, J., Hart, C., Watts, S., Goudie, F., Charlesworth, G., Fossey, J. and Moniz-Cook, E. (2018) Practitioners’ understanding of barriers to accessing specialist support by family carers of people with dementia in distress. International Journal of Care and Caring. 2(1): 109–123. McCabe, M.P., Bird, M., Davison, T.E., Mellor, D., MacPherson, S., Hallford, D. and Seedy, M. (2015) An RCT to evaluate the utility of a clinical protocol for staff in the management of behavioral and psychological symptoms of dementia in residential aged-care settings. Aging and Mental Health, 19 (9): 799–807. Moniz-Cook, E.D., Woods, R.T. and Richards, K. (2001a) Functional analysis of challenging behaviour in dementia: the role of superstition. International Journal of Geriatric Psychiatry. 16: 45–56. Moniz-Cook, E., Woods, R., Gardiner, E., Silver, M. and Agar, S. (2001b) The Challenging Behaviour Scale (CBS): development of a scale for staff caring for older people in residential and nursing homes. British Journal of Clinical Psychology. 40: 309–322. Moniz-Cook, E.D., Stokes, G. and Agar, S. (2003) Difficult behaviour and dementia in nursing homes: five cases of psychosocial intervention. International Journal of Clinical Psychology and Psychotherapy. 10(3): 197–208. Moniz-Cook, E.D, Swift, K., James, I., Malouf, R., De Vugt, M. and Verhey, F. (2012) Functional Analysis-Based Interventions for Challenging Behaviour in Dementia (Review). The Cochrane Library, Issue 2. Moniz-Cook, E., Hart, C., Woods, B., Whitaker, C., James, I., Russell, I. et al. (2017) Challenge Demcare: management of challenging behaviour in dementia at home and in care homes. Programme Grants for Applied Research. 5(15). Morris, S., Patel, N., Baio, G., Kelly, L., Lewis-Holmes, E., Rumana, Z. et al. (2015) Monetary costs of agitation in older adults with Alzheimer’s disease in the UK: prospective cohort study. British Medical Journal Open. 5: e007382. National Institute for Health and Clinical Excellence/Social Care Institute for Excellence (NICE/SCIE) (2007) Dementia: Supporting People with Dementia and their Carers in Health and Social Care. NICE Clinical Guideline NG42. London: NICE. National Institute for Health and Care Excellence (NICE) (2018) Dementia – Assessment, Management and Support for People Living with Dementia and their Carers. NICE Clinical Guideline NG97. www.nice.org.uk/guidance/ng97 (Accessed 03 August 2018). Pink, J., O’Brien, J., Robinson, L. and Longson, D. for the Guideline Committee (2018) Dementia: assessment, management and support: summary of updated NICE guidance. British Medical Journal. 361: k2438. doi: 10.1136/bmj.k2438. Spector, A., Orrell, M. and Goyder, J. (2013) A systematic review of staff training interventions to reduce the behavioural and psychological symptoms of dementia. Ageing Research Reviews. 12(1): 354–364. Stokes, G. (2017) Challenging Behaviour in Dementia: A Person-Centred Approach. (First published Winslow Press 2000) eBook. London: Routledge. Swaffer, K. (2014) Not just a challenging behaviour. Australian Journal of Dementia Care. 4(3): 21–23. Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S. and Vitaliano, P. ( 1992) Assessment of Behavioral Problems in Dementia: The Revised Memory and Behavior Problems Checklist Psychology and Aging. 7: 622–631. Tible, O.P., Riese, F., Savaskan, E. and von Gunten, A. (2017) Best practice in the management of behavioural and psychological symptoms of dementia. Therapeutic Advances in Neurological Disorders. 10(8): 297–309.

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Zuidema, S.U., Derksen, E., Verhey, F.R. and Koopmans, R.T. (2007) Prevalence of neuropsychiatric symptoms in a large sample of Dutch nursing home patients with dementia. International Journal of Geriatric Psychiatry. 22: 632–638.

Further reading and resources Bird, M. and Moniz-Cook, E. (2008) Challenging Behaviour in Dementia: A Psychosocial Approach to Intervention. In Handbook of the Clinical Psychology of Ageing. London: John Wiley and Sons. James, I. and Jackman, L. (2017) Understanding Behaviour in Dementia that Challenges: A Guide to Assessment and Treatment. Second edition. London: Jessica Kingsley Publishers.

Chapter 9

Ethical Issues in Caring for a Person with Dementia Aileen Beatty and Julian C. Hughes

Learning objectives By the end of this chapter you will: • Learn about the main moral theories and approaches that can help us to deal with ethical issues in caring for older people with dementia. • Learn about casuistry and about how different ethical theories and approaches can be put into practice under different circumstances. • Hear of some of the range of ethical issues that arise in caring for older people with dementia. • Be encouraged to reflect on how what you do every day shapes the sort of person – and the sort of professional – that you become.

Introduction Ethics is about doing the right thing. It’s not just about doing the right thing technically, for example making sure you’ve given the correct dose of medication; it’s about making sure that you’ve done things in accordance with the underlying moral principles. So what are moral principles? Well, they are the principles that determine whether something is right or wrong, good or bad. The two terms ‘ethics’ and ‘morals’ can (in most instances) be used interchangeably. This chapter is about ethical issues and moral theories, which just means the theories about right and wrong, good and bad, which determine whether we can say we’ve acted ethically or not. But let’s go back to the idea of doing the right thing technically: say, giving out medication. There are technical issues here. If someone requires 5mg of a medication and all you have on the drug trolley are 10mg tablets, 121

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you may have to cut the tablets in half. How you cut a tablet in half is a technical issue. There are other technical issues around this, like whether you’re allowed to cut this particular tablet in half (or will this mean it doesn’t work in the way it should?), for which you can get advice from the pharmacist. The thing to note, however, is that this rather ordinary technical matter is surrounded by ethical issues too. And the other thing to note is that the ethical issues reflect different underlying moral standards. After all, you could just ignore the prescription and give 10mg on the grounds that this is all you have available. But this would be to break all sorts of professional ethical codes, as well as to behave badly from a more general moral perspective. Or you could break the tablet in half, but neither worry too much about how you do it, nor think about seeking advice. This wouldn’t make you look like a good nurse, but nor would it make you a good human being: it just seems slapdash! Even so, it might be that our judgements about how good or bad this is will be tempered by other considerations. A nurse who is very overworked may have to be slapdash. But even so, a good person (as well as a good nurse) will be upset to have to be slapdash and will want to do something about it. Under these circumstances a good nurse will want to bring it to the right person’s attention that practice is necessarily becoming slapdash. So, thinking about ethics leads us in all sorts of directions (from what it is to be a good human being, to issues around professional conduct and, even, whistleblowing); but it’s always about good and bad, right and wrong. Furthermore, it’s about everyday things – like drug rounds and talking with patients and relatives – as well as about the big things, like life and death.

The big three There are three big moral theories, which we shall consider in turn, albeit briefly (for more information, see the ‘References’ and ‘Further reading and resources’ sections).

Consequentialism This is the idea that it is the consequences of an action that determine whether it is right or wrong. The most popular version of this has been utilitarianism, sometimes summed up by the phrase ‘the greatest good for the greatest number’. You can think in terms of maximizing happiness, or pleasure, or welfare. A nurse manager might be faced with the choice of spending money either on staff or on equipment; or on this or that

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equipment. Asking which will maximize happiness, or which will maximize utility (i.e. be the most useful), is not a bad way to decide what the right thing to do might be.

Deontology This is to do with duty (deon). We have a duty to care. We might also feel that we have duties to tell the truth, to avoid harm and so forth. We might say that we have these duties whatever the consequences. A consequentialist might say that if we tell someone the truth about their diagnosis or prognosis this will cause upset, so we should not do so. But the deontologist will argue that there are rational grounds for thinking that we have a duty to tell the truth, full stop.

Virtue ethics The virtue ethicist takes a different tack and argues that dispositions are the key to the good life. If we have the virtues – if we are honest, trustworthy, diligent, wise, compassionate, just, show integrity and such like – then we will do the right thing. When faced by a dilemma, we should ask what the virtuous person would do. Even if you are very busy and the relative of one of your patients stops you and seems upset and wants to talk, the question is, how do you show integrity and compassion? It might not be that you must drop everything to talk to the relative, but you must show some empathy (be compassionate) and make an arrangement to be free to talk later (show practical wisdom). The virtuous person would not just snap ‘I’m busy!’ Of course, there are arguments surrounding all of the big three, but taken together, they point towards a richness of thought that is possible in connection with any particular ethical issue that might arise.

Other approaches But it’s not just the big three! There are numerous other approaches to ethics. We shall mention just three (see Ashcroft et al. 2007).

Principlism The famous four principles of medical ethics will often be useful (Beauchamp and Childress 2001):

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• Autonomy: allowing the person concerned to make choices, to rule themselves • Beneficence: doing good • Non-maleficence: avoiding harm • Justice: making a fair use of resources. These principles give us a set of concepts to consider and a language to use when we are discussing ethical issues.

Narrative ethics This stresses the extent to which we are embedded in our stories or narratives. The suggestion is that we are more likely to make the right ethical decisions if we appreciate the narrative of the person concerned and see how narratives interact. Indeed, our own stories interconnect with the narratives of those for whom we care. Simply put, we need to understand people we look after and to do this we need to hear and understand their stories in order that we do the right thing for them.

Feminist or care ethics The idea here is that there are feminine ways of relating with people, which emphasize care, relationships and understanding. In the world of ethics, rather than arguments based on an assertion of principles, duties and rights, feminist ethics sees things from the context of a relationship of care. Doing the right thing becomes a matter of engaging with others in the right way, which is always a caring way with real understanding.

Casuistry So far so good, but how do we use all of these theories and approaches in practice? Here we wish to introduce the notion of casuistry, which is to do with looking at things case by case. Instead of starting with principles, casuistry starts by immersion in the facts. The details matter. You can also compare the present case with a similar case – one for which the decision has been easily made – and ask: what are the morally relevant differences between the cases? You can then apply moral theories as seems appropriate. There is no prior commitment. In some cases, the outcome or consequences will be paramount. In another case it might be the need to understand the person’s narrative. Elsewhere there might seem to be

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an overwhelming duty to avoid harm. Casuistry is more eclectic, but also more realistic.

STOP AND REFLECT Now that we’ve sketched some of the main theories and approaches to ethics, think back to a time when you felt you faced a moral dilemma, when you had to make a choice and it was difficult to know whether you were making the right or wrong choice – when you were not sure what was good and what was bad. How in reality did you solve the dilemma? Did you, in essence, apply one of the theories or approaches we have outlined? Or was it a less clear process? Would it have helped to have had a theory to aid the decision?

Case studies We shall now look briefly at some case studies: the histories are fictional, although they are based on real cases and incidents. The studies only cover some of the many ethical issues that arise in connection with dementia. Based on work with family carers of people living with dementia, for instance, there is a great variety of issues, many of them day-to-day, but nevertheless issues that give rise to ethical concerns (see Table 9.1). Table 9.1: Ethical concerns for carers of people with dementia (Hughes 2009) Assessment

Avoiding infantilization

Communication

Community resources

Confidentiality

Consent

Constant telephone calls

Constraint

Difficult behaviour

Driving

Dual loyalties (e.g. to jobs or to other members of the family)

End-of-life

Euthanasia

Feelings of guilt

Finance

Giving up care

Genetic testing

Lack of support

Letting them down

Long-term care

Misunderstanding

Need for information

Professionalism

Providing personal care cont.

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Public embarrassment

Recognizing vulnerability

Relations with doctors (and other professionals)

Safe use of medication

Self-care

Sleep deprivation

Taking over tasks

Talking about person as if not there

Taking risks

Telling the diagnosis

Treating the person as a person

Treatment decisions

Truth telling

Use of respite care

Wandering

Although derived from family carers, many of these issues are still relevant for professionals; and even though these are not the views of people actually living with dementia, they shed light on the sort of issues that cause ethical problems for all concerned (see also Strech et al. 2013).

CASE STUDY: SARAH – TRUTH TELLING Sarah lives in a care home and was visited daily by her devoted husband, James, up until his recent death. They had been married for over 60 years and had four children. Staff in the home asked Sarah’s family what they should tell Sarah, who has advanced Alzheimer’s disease and limited communication, but always smiled and appeared to recognize James when he visited. She also sometimes asked for him when he wasn’t there. Three of their children said they did not want their mother to be made aware of his death because this would upset her and she would soon forget anyway. One son felt she should be told and was unhappy with this decision. He felt that as they had been married for so long, she should be told at least once out of courtesy. Because of the disagreement between family members, staff in the home made the decision not to tell Sarah about James’ death, and said he was at the shops getting his paper whenever she asked for him.

Not telling the truth to people with dementia is something that can begin right at the ‘get-go’: people are not told the diagnosis and are then not told what is happening to them. Of course, sometimes they will not wish to know, but most people in fact do wish to know the truth. We can immediately see the relevance of many of the ethical theories we have considered. Sarah is obviously concerned. Respecting her autonomy and regarding honesty as a virtue immediately suggest we should be truthful with her. If we thought this would cause a good deal of harm, we might

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resist telling her about James. But there is a type of wisdom that says that it is easier in the long run to be truthful even if it is harder initially. The staff have decided to be on the side of the family, who do not wish her to know, but this may simply be for an easy life. Weighing matters up, in a report by the Mental Health Foundation (Williamson and Kirtley 2016), it was decided that professionals should try to tell the whole truth unless there were compelling reasons not to and that, in such a case, it was still not necessary to tell a lie. Distracting the person or changing the subject might be better if we know that the full truth will hurt. If this is a deceit, it may on balance be the best option, depending on how Sarah takes the news when she is first told.

CASE STUDY: ANGUS – FORCED CARE Angus is 88 years old and lives at home with his wife, Isobel. He has vascular dementia and receives care at home from a domiciliary care agency. Isobel used to attend to his personal care needs but she is physically frail and his needs have increased owing to deterioration in his condition. He suffers with occasional urinary incontinence and refuses offers of help from home care staff. He becomes angry and calls the carers ‘stupid kids’ and says he is perfectly capable of doing things for himself. The staff have complained to Isobel that Angus is ‘too difficult’ for them to manage and that he needs to go into a home. They say they aren’t allowed to force him to accept help and don’t have much time to spend. They leave soon after arrival. As a result, Angus’s health and dignity are affected. His skin is breaking down and there is a strong odour in the home.

STOP AND REFLECT Angus did not consent to personal care. What steps might the care agency have taken to encourage Angus to accept help or to support him to be more independent? (You might wish to consider lengthening the time of visits, establishing his preference with regard to gender and maturity of staff, asking Isobel how she managed, supporting recognition of the toilet and laying things out in order.) Is it ever OK to force people to accept intimate personal care? If so, under which circumstances?

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The issue here is partly legal. Different jurisdictions will have different laws, but in England and Wales the Mental Capacity Act (2005) sets out how we should make decisions for people who cannot make decisions for themselves. The ethically right thing to do is to abide by the law. Thus, we would need to be certain that Angus lacked capacity to make decisions about his own care. A community psychiatric nurse might be asked to do this. But if Angus lacks capacity, then we must act in his best interests. Still, his views on the matter, or what they would have been, should be given some primacy. The case also brings up issues to do with the fair distribution of resources. Budget constraints affect the level of support people can be given. Home care staff are frequently under pressure and possibly lack suitable experience and training to support someone like Angus. The possibility that he could be forced to leave his home and wife and move into care much sooner than necessary is concerning, particularly if with the right resources, he could be supported at home. It is unlikely staff will have the time to follow a very person-centred plan unless this has been fully discussed with the service commissioner, so it is very important that this is done. Those involved need to be explicit and accurate about a person’s level of care from the outset in case a later crisis precipitates admission to hospital or care.

CASE STUDY: RAJ – COVERT MEDICINES Raj lives in a care home, has delusional beliefs that people are stealing his clothes and money, and becomes very anxious and distressed. Staff try to support Raj to feel less anxious, and always ensure he has a small amount of money in his pocket and remind him it is there and that no one has taken it. He has a new wardrobe that has a panel through which he can see all his clothes, which it is hoped will alleviate his concerns about them going missing. Staff also accompany Raj on long walks in the nearby park when he is unsettled as this can often help to calm him. Despite these interventions, Raj remains highly anxious a lot of the time, and this frequently escalates into physical aggression towards staff and other people living in the home. He has been prescribed a small regular dose of antipsychotic medication, which was helping to reduce his distress and behavioural disturbance. He was even relaxed enough to join group activities in the home which he was too unsettled to do previously. Raj has begun refusing to take his medicine, however, which is having a detrimental effect upon his mood and behaviour. A decision has been made to

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administer this medicine covertly to Raj, hidden in his favourite strawberry yogurt.

Of course, it is unsafe and unethical to use medicines as a first response to behavioural disturbance and distress in dementia. It is much better to use non-pharmacological interventions first: not only might they work, but also they can provide the least restrictive option for treatment. Again, it is important to recognize the person’s autonomy, but not if this is going to cause significant harm. Practical wisdom might dictate that covert medication would be the best way forwards. This would still have to be done with caution. If Raj understood what was happening, it might make him refuse help in the future. Once again, there is guidance about covert medicine best practice1 and to follow such guidance would seem to be the most ethical thing to do. But this is supported by knowing that you are also doing the right thing. Some of the basic aspects of such guidance reflect ethical concerns: • Last resort – covert administration over-rides the autonomous wishes of the person. • Medication specific – some medications are taken willingly, so covert use should only be for when it is necessary, again as a means to respect autonomy. • Time limited – covert medication should be for as short a time as possible to avoid broader harms. • Regular reviews – these are a duty, and because integrity demands this attention. • Transparency – this is a matter of honesty. • Inclusivity – the decision-making process should involve everyone concerned. • Best interest – we should only give covert medication to do good, that is, for beneficent reasons.

1 See www.prescqipp.info/pregabalin-in-neuropathic-pain/send/216-care-homes-covertadministration/2147-b101-covert-administration.

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CASE STUDY: JAMES AND KATHERINE – SEXUALITY AND INTIMACY Staff working in a care home are shocked to find James and Katherine in bed together naked. They call on a senior staff member who says they must be separated, with James being taken back to his bedroom. James has never been married and Katherine is a widow. Staff make a referral to the local authority safeguarding team, and call both of their families to tell them what had happened. James’ brother was surprised but felt that his sex life was his own business and said he didn’t want to hear about it. Katherine’s two sons had opposing views: one felt upset and thought that she must have been coerced by James as she wasn’t the type to engage in casual sex and had been a loyal and loving wife to his father; her other son said that as long as she was happy and not hurt in any way, she was an adult and should do what she likes. James has full capacity and no history of mental illness. Katherine has been noted to have some problems with her memory which has been referred to as mild cognitive impairment but she has never been formally diagnosed.

STOP AND REFLECT Did staff act correctly? Probably not: they panicked and automatically followed the safeguarding policy, which is understandable, given the pressure upon services by regulators and commissioners. But on this occasion it was not the correct thing to do. Both were subsequently assessed as having capacity. Katherine refused to continue the developing relationship for fear of what other people in the home would say. What would you have done?

Enlightened, well-trained staff would have reacted differently, instead of the knee-jerk panic reaction we have here. This also highlights the way in which some care staff view residents when they fail to treat them as equals, with the same rights, dreams and desires as the rest of us. In casuist vein, it is worth considering how we would have reacted if James had capacity, but Katherine had a marked dementia and lacked capacity. What if they both lacked capacity but seemed to be happy? What if they had spouses who were still alive? Each case would have to be considered on its merits given the details of the case (see Foster et al. 2014).

Ethical Issues

CASE STUDY: MARK – END OF LIFE Mark is 65 and developed early onset dementia ten years ago. He is now in the advanced stages of his illness and is cared for at home by his wife and two children. Mark is confined to bed and unable to speak or move independently without support, and he is having difficulty swallowing despite being given pureed meals and thickened fluids to help him; he is losing weight. Following diagnosis, Mark expressed strong views that he did not want to have his life artificially extended in any way. He said he didn’t want to be a burden on his family, or for them to witness the indignity the latter stages of his illness would bring. He even spoke briefly about taking his own life in the early stages. Mark’s wife is pushing for him to be admitted to hospital because she feels that with the best possible care, he will return to how he was a few months previously – frail but alert and comfortable. She wants him to be fed via a nasogastric tube or a PEG (percutaneous endoscopic gastrostomy) where a tube is inserted into the stomach via the abdominal wall. One of Mark’s daughters is a nurse and has told her mother she thinks that there would be little benefit to artificial feeding, and that admission to hospital would cause discomfort and distress to him. She also reminded her of Mark’s earlier wishes. His wife said that as these weren’t written down she can’t be sure he meant them and he was depressed at the time.

Again, we can discuss this in terms of numerous ethical approaches and theories. Mark’s wishes here seem to be very important. Getting to know his story in more depth would be helpful. Has he, in his previous life, when he was clearly not depressed, expressed any views that would be relevant? Is he suffering? What else could be done for him? Casuists will want to know the details. But Mark’s narrative includes that of his wife, so her views must also be heard. We need to be compassionate to them both; but we also need to avoid harm. If the PEG tube helps us to avoid harm, then it might be an option. But, in fact, the evidence is that PEG tubes do not avoid many of the things we think they might: people still aspirate, they still lose weight and so on (Sampson et al. 2009). If the treatment does not work and might be a burden, it is reasonable to say that it’s not a moral obligation. More palliative measures might be in order, because the duty to care does not evaporate at the end of life.

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Conclusion Ethical issues in caring for a person with dementia come in a variety of shapes and sizes. They can be everyday issues but are also – as in the case studies – more exceptional and sometimes involve life-and-death decisions. Ethical theories don’t give us a single answer, but they give us ways to understand our ethical intuitions and impulses. The ethical approaches we’ve outlined give us ways to discuss and to understand the issues. It would be odd to say that there are no answers – we cannot just do as we wish – but figuring out what the right answer or answers might be in a given situation can be very difficult. Still, our answers make a difference to all those concerned. Indeed, by the answers we give to the day-to-day ethical issues that face us, let alone to the big ones, we shape our own lives and become certain sorts of people. Being motivated by a desire to do good cannot but be a good basis for professional practice.

References Ashcroft, R.E., Dawson, A., Draper, H. and McMillan, J.R. (eds) (2007) Principles of Health Care Ethics. Second edition. Chichester: John Wiley and Sons. Beauchamp, T.L. and Childress, J.F. (2001). Principles of Biomedical Ethics. Fifth edition. Oxford: Oxford University Press. Foster, C., Herring, J. and Doron, I. (eds) (2014) The Law and Ethics of Dementia. Oxford: Hart Publishers. Hughes, J.C. (2009) Ethical issues and patterns of practice. In M.F. Weiner and A.M. Lipton (eds) The American Psychiatric Publishing Textbook of Alzheimer Disease and Other Dementias. Washington, DC, and London: American Psychiatric Publishing. Sampson, E.L., Candy, B. and Jones, L. (2009) Enteral tube feeding for older people with advanced dementia. Cochrane Database of Systematic Reviews. Issue 2. Art. No. CD007209. http://dx.doi.org/10.1002/14651858.CD007209.pub2 (Accessed 18 Jan 2018). Strech, D., Mertz, M., Knüppel, H., Neitzke, G. and Schmidhuber, M. (2013) The full spectrum of ethical issues in dementia care: systematic qualitative review. British Journal of Psychiatry. 202: 400–406. Williamson, T. and Kirtley, A. (2016) What is Truth? An Inquiry About Truth, Lying, Different Realities and Beliefs in Dementia Care. (Review of Evidence and Report.) London: Mental Health Foundation. www.mentalhealth.org.uk/publications/whattruth-inquiry-about-truth-and-lying-dementia-care (Accessed 26 Dec 2017).

Further reading and resources Avery, G. (2016) Law and Ethics in Nursing and Healthcare: An Introduction. Second edition. London: Sage. Hughes, J.C. (2014) How We Think About Dementia. London: Jessica Kingsley Publishers. Hughes, J.C. and Baldwin, C. (2006) Ethical Issues in Dementia Care: Making Difficult Decisions. London: Jessica Kingsley Publishers. Hughes, J.C. and Beatty, A. (2013) Understanding the person with dementia: a clinicophilosophical case discussion. Advances in Psychiatric Treatment. 19: 337–343.

Chapter 10

Using Risk Management to Promote Person-Centred Care Sarah Rhynas and Charlotte Clarke

Learning objectives By the end of this chapter you will: • Appreciate the importance of individual identity and narrative in shaping behaviour and decision making in older age. • Understand how risk is perceived by different stakeholders and how health professionals might develop an enabling view of risk. • Consider how understandings of risk can inform, facilitate and promote person-centred care. • Reflect on your practice and consider how risk enabling you can be in your own interactions with older people.

Introduction Risk is something which those working in health and social care practice consider every day. Some practitioner decisions are centred around the immediate, often implicit, risk considerations which shape the way that someone is helped with everyday tasks: to walk to the toilet or to sip their hot drink. Other decisions incorporate formal processes of risk assessment, for example assessing an individual’s safety in the kitchen or proficiency on the stairs, prior to discharge from hospital. Mostly, risk is regarded as synonymous with harm, and in assessing for risk we are trying to prevent something harmful happening. Professional practice is guided by the ways in which healthcare policy and services construct risk and prepare for the management of that risk (Heyman et al. 2010), yet every individual, family and practitioner has his/her own understanding of risk and their own limits, preferences and ideals. 133

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But risk does not have to be synonymous with harm – and indeed, this way of thinking about risk can cause harm! In protecting someone from becoming a missing person, for example, their right to freedom may be curtailed, their independence compromised and their wellbeing decreases as a result (Clarke et al. 2011). There are no easy answers to these sorts of dilemmas! This chapter will explore how healthcare staff can consider risk management in new ways, working in partnership with older people and their families, to promote care which is enabling and person-centred.

Thinking about risk The label of being ‘at risk’ typically results from an identification of vulnerabilities resulting from physical or mental infirmity, gaps in social networks or support systems, or difficulties with domestic or environmental settings. Although being identified as ‘at risk’ brings potential protection and service resources, it also has the potential to undermine independence and can lead to significant alterations in living arrangements, increased surveillance, introduction of care visits or changes to family arrangements (Clarke et al. 2017). In a recent narrative synthesis of qualitative research around falls and falls prevention, Gardiner et al. (2017) observed many older people rejecting the label of being ‘at risk of falling’ because of the complex implications associated with falls that represented (to them) a threat to personal identity, independence and social interaction – as well as changed understandings of ‘carefulness’ being seen as a protective strategy. The complexity revealed in Gardiner et al.’s work helps to underline the significance of constructions of risk in shaping the real lives of individuals and in shaping interactions with health professionals. Clarke et al. (2010) explored the balance of decision making around risk that typically takes place within care relationships involving people living with dementia, family carers and practitioners. They highlighted the importance of interactions about daily events, such as going out, in bringing different views of risk together and shaping shared understandings. Risk, understood as a negotiated concept that takes account of a range of stakeholder views, has the potential to promote person-centred care. Risk management which seeks to understand the perspectives of the older person, significant family and friends and healthcare professionals can move beyond safety-focused constructions to embrace empowering approaches to care which are truly centred around the individual. There are, therefore, several different ways of thinking about risk. Here are two of the main ways:

Risk Management

• Risk as a harm that might happen, for example the risk of going missing. • Risk as a chance that something will happen – good or bad – that contributes to quality of life.

Person-centred care Person-centred approaches to care have become dominant in recent years and are endorsed by organisations such as the World Health Organization (2015) and the Health Foundation (2013) (see also Chapter 6). Developing from the early dementia-focused definition of Kitwood (1997), personcentred care is now enshrined in policy and healthcare regulation internationally (Department of Health 2010; Scottish Government 2013; Care Quality Commission 2017). The approach encourages the development of caring relationships which value people as individuals, moving far beyond the disease process to develop meaningful partnerships based on respect and reciprocity. Personal biography and life stories (Kitwood 1997; Brooker 2003) are central to person-centred care where personal identity, inclusion, attachment, occupation and comfort provide a framework for the enhancement of personhood (Brooker 2007). Tronto’s (1994) ‘ethic of care’ further supports this approach, stressing the interdependence and care on which human relationships are based and situating those caring relationships within the context of wider social and political structures. McCormack and McCance (2006, 2010) have developed a framework for thinking about and developing person-centred care. This work has moved from a nursing-focused framework (McCormack and McCance 2006), through use in research, education and clinical practice, to become a framework that can address person-centred approaches to care across the wider health and social care landscape (McCormack and McCance 2017). Central to McCormack and McCance’s (2017) model are personcentred outcomes which place the individual at the centre of the care interaction, supported by processes of authentic engagement, holistic care and shared decision making. All of the interactions that health and social care professionals have with those in their care take place within a wider care environment. This environment shapes the nature of the care given and can provide both supportive structures and constraining systems within which individual care interactions take place. Person-centred care is, therefore, much more than simply following an individual’s wishes – it incorporates

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aspects of professional competence, decision making, and power sharing while working within the guidelines, time and resources available. The complexity of person-centred care and the professional’s role in providing that care should not be underestimated. Person-centred decision making brings risk into sharp focus with the potentially competing views of individual, family and professional colliding. The range of understandings of risk highlighted previously can all be used with the aim of providing care which best meets the individual’s needs. However, all too often, risk itself is not considered at an individual level and systems therefore fail to embrace the real meaning of risk for an individual (with the assumption that risk is detrimental and best avoided). Titterton (2005) recognises the importance of risk in characterising individual lives and choices and in promoting psychological and emotional wellbeing. Individual consideration of risk and risk enablement must, therefore, be an explicit part of person-centred care practice, and patient safety is not to be conflated with risk management.

STOP AND REFLECT Have you ever considered your own thoughts on risk? What part does risk taking play in your own life? How does it make you feel? Have your reactions to risk and risk taking changed over time and in different circumstances?

Individuality, biography and risk Views of risk change over time and in different situations. Getting to know the individual is an obvious first step in developing a relationship that can underpin person-centred care while also seeking to understand how risk is conceptualised by the individual and their family. Authentic engagement with the individual takes place when the care professional can make a connection that is based on knowledge of that person’s biography, values and beliefs. Understanding how an individual views their own role in society can be an important aspect of the caring relationship and can allow the professional insights into the way in which an individual may act or motivations which may shape behaviour. Titterton’s (2005) assertion that risk taking can be positive and can enhance lives is an important focus when considering how to be enabling in care practice and care planning. Explicitly considering biography, values, beliefs and social roles can help

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the professional to understand the individual and facilitate the planning of care that moves away from defensive, risk-focused planning towards personalised, empowering and positive interactions. We can explore this more through the example of Jack in the following case study.

CASE STUDY: JACK Jack is an 88-year-old man who is living with dementia in a care home close to where he grew up. He is a sociable gentleman with a jovial smile and is often seen walking purposefully around the home, busily moving in and out of the rooms along the corridor. He has no clear language but his friendly demeanour means that he is a welcome visitor wherever he goes. At morning coffee time the care staff offer the residents refreshments and Jack immediately starts to walk between the rooms, putting his index finger purposefully into fellow residents’ hot drinks and muttering to himself. The staff are concerned that Jack is likely to burn himself and fellow residents become cross with Jack’s unusual and repetitive behaviour. Some residents react angrily and Jack gets upset.

STOP AND REFLECT How might knowing something of Jack’s personal biography help care staff to understand Jack’s behaviour? What can be identified as risks in this example? How can the risks be alleviated?

Later that afternoon, Jack’s wife was with him when afternoon tea arrived and Jack again put his finger into the teacup. She laughed and explained that during his working life Jack had boiled sugar at a local confectionery factory. He had been responsible for bringing the molten sugar mixture to temperature and pouring it into moulds to form sweets. This part of the confectionery-making process has been automated for many years so staff were interested to hear of this unusual job and learn about the skills Jack had used every day. His hands had become used to the sensation of hot liquids as the process of testing the temperature of the sugar had involved repeatedly dipping a thermometer into the molten liquid. Jack’s behaviour in the care home made sense to staff in light of his occupational history, and the staff could talk to Jack about his life in the factory and the interesting sounds and smells of his work.

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Jack’s life story and his occupational role shaped his behaviour. By understanding something of Jack’s life story, staff were able to understand and reconceptualise the risks associated with his behaviour as well as interacting with him on a more positive and individual level. Staff were also able to engage with Jack’s wife, recognise her point of view and share a new understanding of Jack. Risk is inherently complex, and shared understandings such as in the example of Jack may not always be possible as different views collide. While endeavouring to be person-centred, different stakeholders bring different priorities to decision making, often all with good intentions towards the individual. In recent research about discharge from acute hospital to care home, Harrison et al. (2017) highlight the importance of involving the individual along with their family and the whole multidisciplinary team in making life-changing decisions about residency in older age. Discharge from hospital to care home is a useful example as it allows consideration of risk from a range of perspectives and highlights the complexity of decision making. Each stakeholder may conceptualise risk differently and the inherent complexity and potential for personal distress in the decisionmaking process is very real, as in this second case study.

CASE STUDY: SALLY Sally is a 75-year-old woman who was admitted to acute hospital care with delirium. She is unstable on her feet and cannot manage to cook or dress herself without assistance. Sally was admitted to hospital after a fall at home and has been in the ward for three weeks, where she has been treated for a urinary tract infection and has received physiotherapy and assessment from the occupational therapist. This is Sally’s first hospital admission and she usually manages at home with a package of care three times daily. Sally’s daughter is a teacher and lives 40 miles away with her husband and children. She would like her mother to move to a care home as she is concerned that she is not managing in her own home and may fall again. However, Sally is determined to return to the home where she has lived for 50 years and in which she raised her family. She is aware of her daughter’s concerns but does not feel ready to leave her family home and is confident that she can manage as she did prior to admission. The physiotherapist and occupational therapist make their assessments and then a meeting is arranged to discuss options with Sally and her daughter.

Risk Management

In this case study, Sally is keen to go home with her existing care package when she is ready to leave hospital. She may understand that she runs a risk of falling again or of developing another infection-related delirium in future but she appears willing to take those risks in order to maintain her independence. Sally’s daughter has also analysed the risks associated with her mother’s discharge home and she has concluded that the risk of a fall is too great to take. Neither individual seeks to cause the other distress (indeed both are striving for a positive solution), yet the decision-making process and the analysis of risk makes this example challenging.

Person-centred care and strange places Person-centred care within the acute hospital environment is particularly challenging (Clissett et al. 2013). It is an environment widely recognised as threatening to the personal identity of those living with dementia (Davis, Byers and Walsh 2008; Naue and Kroll 2008). The threat to personal identity in the acute hospital can start even before admission, when an individual suffers an acute injury or becomes unwell, suddenly altering patterns of behaviour, heightening distress and resulting in admission to hospital. From paramedic and ambulance staff, emergency department and admission unit staff, the individual patient encounters numerous practitioners during the first hours of an emergency admission. Those staff, however caring, focus on the emergent situation, seeking to stabilise the patient medically before admitting them to an appropriate inpatient ward. These encounters, against the backdrop of a distressing emergency situation, can exacerbate confusion, threatening the wellbeing of the individual. Relatives, and indeed staff, are reminded of the vulnerability of the individual and this fuels their concern about incipient harm (as Sally’s daughter demonstrates). In a recent case study, exploration of different stakeholder views of care-home discharge decision making, this kind of dilemma was common (Rhynas et al. 2018). There was considerable emotional cost to adult children who tried to balance the current care needs of ageing parents with both their perceptions of their caring role and their own occupational and family commitments. Assessments of risk were influenced by distance, personal availability to help, domestic environment and the ageing parent’s previously stated aspirations for old age. Professionals may be called upon to negotiate these contested areas and contribute more objective assessments of their own. It is, however, challenging to balance competing understandings of risk, particularly when all parties are seeking to find a positive solution and

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nobody intends the other ill. Understanding that risk taking can be positive and may enhance wellbeing can be a useful focus for discussion (Titterton 2005; Clarke et al. 2011). It is much easier to consider what may happen if a service is not introduced or if an individual is not admitted to the safety of a care home. However, it is less common and more challenging to consider the risk associated with defensive practice or practice which seeks to eliminate risk, potentially at the detriment of individuality or personal choice. Earlier in this chapter, the work of Gardiner et al. (2017) was introduced where older people declined to label themselves ‘at risk’ of falling because of the potentially limiting features of that label. Here again we see the importance of embracing individual understandings of risk in order to ensure that care is supportive and enabling. In his classic work, Goffman (1959) highlights the importance of interpersonal encounters within settings, focusing on how individuals present themselves to one another. In a distressing and unfamiliar situation, such as an unplanned hospital admission, the presentation of self is challenging, often resulting in limitations in the ways that individuals can engage in exchange. Patients find themselves in an unfamiliar environment with few of their own belongings to help orientate themselves. Strange noises, unfamiliar people and unknown rules and routines combine to make the environment feel threatening, often contributing to increased confusion and further distress. Single rooms can leave individuals isolated from the world around them, often unaware of passing time, mealtimes and the normal landmarks that can shape the day. In this acutely unfamiliar environment, sometimes wearing unfamiliar clothes and with few personal prompts, the individual can struggle to maintain a sense of their own identity let alone communicate what is important to them in their lives to staff. It is, however, in this situation that many people are faced with making decisions which can shape the remainder of their life, such as whether to move into a care home. Clissett et al. (2013) highlight the challenges associated with maintaining personal identity in an acute hospital setting, noting the opportunities that staff miss to enhance identity through the use of appropriate modes of address, meaningful conversation and interaction with personal belongings. The importance of environment (Downs, Small and Froggatt 2006), dress (Ward et al. 2008; Ward and Campbell 2013) and individual belongings (Edvardsson and Nay 2009; Twigg 2010) in maintaining identity are established but have not been explored within the context of the acute hospital and with particular reference to decision making in hospitals. Kontos (2004, 2006) stresses the importance of

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appearance in embodying a sense of self, enhanced by engagement with personal belongings (Twigg 2010). There is a key question we have to ask ourselves – how can we be person-centred in our care if we don’t know the person we are caring for? We can’t be person-centred if we are caring for ‘the patient in bay 2’ or caring for ‘the diabetic with a fractured femur’. So how, especially in the ‘strange’ environment of an acute hospital, can we get to know the person and their wishes so that we can care for ‘Mrs Brown, who has a diagnosis of dementia and is frightened about her future’? The NHS is committed to meeting the needs of people living with dementia who are admitted to hospital with a specific health concern, such as orthopaedic trauma, but discharge for this group of patients is complex (Callahan et al. 2015). Ensuring that discharge is truly personcentred is challenging amidst the competing demands of the acute hospital and with structures and power dynamics which have the potential to inhibit participation by some frail older people (Ekdahl, Andersson and Friedrichsen 2010; Foss and Hofoss 2011). Central to person-centred discharge is the individual and the way in which that individual’s personal identity can be both respected and supported throughout the decisionmaking process. A further key question we have to ask ourselves is: how can we work with people to support them to articulate their views? As nurses, how can we advocate for their views in multidisciplinary meetings and what roles do we take on – as ‘protector’, as ‘negotiator’, as ‘advocate’? Person-centred practice brings the individual and professional together in a relationship that values both professional and experiential expertise. The partnership seeks to ensure that, ultimately, the planned care balances the individual’s needs with their wishes, history and values. The balance reached may only be right for that individual and may be unacceptable to others. However, it also requires the professional to reflect upon their own beliefs and the understandings that guide them in their day-to-day lives and practice. It is, therefore, important to stop for a moment and consider risk in your own life and how it shapes your own behaviour.

STOP AND REFLECT Has your thinking about risk changed as you have worked through this chapter? In what ways could you seek to be a risk enabler in your own practice?

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References Brooker, D. (2003) What is person-centred care in dementia? Reviews in Clinical Gerontology. 13(3): 215–22. Brooker, D. (2007) Person-Centred Dementia Care. London: Jessica Kingsley Publishers. Callahan, C.M., Wanzhu, T., Unroe, K.T., LaMantia, M.A., Stump, T.E. and Clark, D.O. (2015) Transitions in care in a nationally representative sample of older Americans with dementia. Journal of American Geriatric Society. 63: 1495–1502. Care Quality Commission (2017) The Fundamental Standards. www.cqc.org.uk/what-wedo/how-we-do-our-job/fundamental-standards (Accessed 3 April 2018). Clarke, C.L., Keady, J., Wilkinson, H., Gibb, C.E., Luce, A., Cook, A. et al. (2010) Dementia and risk: contested territories of everyday life. Journal of Nursing and Healthcare of Chronic Illness. 2: 102–112. Clarke, C.L., Wilkinson, H., Keady, J. and Gibb, C.E. (2011) Risk Assessment and Management for Living Well with Dementia. London: Jessica Kingsley Publishers. Clarke, C.L., Rhynas, S., Schwannauer, M. and Taylor, J. (2017) Advancing Risk and Resilience: why is it so important? In C.L. Clarke, S. Rhynas, M. Schwannauer and J. Taylor (eds) Risk and Resilience: Global Learning Across the Age Span. Edinburgh: Dunedin Press. Clissett, P., Porrock, D., Harwood, R.H. and Gladman, J.R.F. (2013) The challenges of achieving person-centred care in acute hospitals: a qualitative study of people with dementia and their families. International Journal of Nursing Studies. 50: 1495–1503. Davis, S., Byers, S. and Walsh, F. (2008) Measuring person-centred care in a sub-acute health care setting. Australian Health Review. 32(3): 496–504. Department of Health (2010) Personalisation through Person-Centred Planning. London: Department of Health. Downs, M., Small, N. and Froggatt, K. (2006) Explanatory models of dementia: links to end-of-life care. International Journal of Palliative Nursing. 12(5): 209–213. Edvardsson, D. and Nay, R. (2009) Acute care and older people: challenges and ways forward. Australian Journal of Advanced Nursing. 27(2): 63–69. Ekdahl, A.W., Andersson, L. and Friedrichsen, M. (2010) ‘They do what they think is the best for me’: frail elderly patients’ preferences for participation in their care during hospitalisation. Patient Education and Counselling. 80: 233–240. Foss, C. and Hofoss, D. (2011) Elderly persons’ experiences of participation in hospital discharge process. Patient Education and Counselling. 85: 68–73. Gardiner, S., Glogowska, M., Stoddart, C., Pendlebury, S., Lasserson, D. and Jackson, D. (2017) Older people’s experiences of falling and perceived risk of falls in the community: a narrative synthesis of qualitative research. International Journal of Older People Nursing. 12(4): doi: 10.1111/opn.12151. Goffman, E. (1959) Presentation of Self in Everyday Life. New York: Overlook Press. Harrison, J.K., Garcia Garrido, A., Rhynas, S., Logan, G., Maclullich, A. et al. (2017) New institutionalisation following acute hospital admission: a retrospective cohort study. Age and Ageing. 46(2): 238–44. Health Foundation (2013) A portal for learning and resources on person-centred care. www.health.org.uk/newsletter/portal-resources-and-learning-person-centred-care (Accessed 3 April 2018). Heyman, B., Shaw, M., Alaszewski, A. and Titterton, M. (2010) Risk, Safety, and Clinical Practice. Oxford: Oxford University Press. Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press. Kontos, P. (2004) Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease. Ageing and Society. 24: 829−849.

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Kontos, P. (2006) Embodied selfhood: an ethnographic exploration of Alzheimer’s disease. In Leibing, A. and Cohen, L. (eds) Thinking about Dementia: Culture, Loss and the Anthropology of Senility. New Jersey: Rutgers University Press. McCormack, B. and McCance, T. (2006) Development of a framework for person-centred nursing. Journal of Advanced Nursing. 56(5): 1–8. McCormack, B. and McCance, T. (2010) Person-Centred Nursing: Theory, Models and Methods. Oxford: Wiley Blackwell. McCormack, B. and McCance, T. (2017) Person-Centred Practice in Nursing and Health Care: Theory and Practice. Oxford: Wiley Blackwell. Naue, U. and Kroll, T. (2008) ‘The demented other’: identity and difference in dementia. Nursing Philosophy. 10(1): 26–33. Rhynas, S.J., Garrido, A.G., Harrison, J.K., Logan, G. and MacArthur, J. (2018) New care home admission following hospitalisation: how do older people, families and professionals make decisions about discharge destination? A case study narrative analysis. International Journal of Older People Nursing. https://doi.org/10.1111/ opn.12192. Scottish Government (2013) A Route map to the 2020 vision for health and social care. www. gov.scot/Resource/0042/00423188.pdf (Accessed 3 April 2018). Titterton, M. (2005) Risk and Risk Taking in Health and Social Care. London: Jessica Kingsley Publishers. Tronto, J.C. (1994) Moral Boundaries: A Political Argument for an Ethic of Care. London: Routledge. Twigg, J. (2010) Clothing and dementia: a neglected dimension? Journal of Aging Studies. 24: 223–230. Ward, R. and Campbell, S. (2013) Mixing methods to explore appearance in dementia care. Dementia. 12(3): 337–47. Ward, R., Vass, A.A., Aggarwal, N., Garfield, C. and Cybyk, B. (2008) A different story: exploring patterns of communication in residential dementia care. Ageing and Society. 28(5): 629–651. World Health Organisation (2015) WHO Global Strategy on People-Centred and Integrated Health Services. www.who.int/servicedeliverysafety/areas/people-centred-care/globalstrategy/en (Accessed 3 April 2018).

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Safeguarding and Dementia Jill Manthorpe and Stephen Martineau

Learning objectives By the end of this chapter you will: • Be aware of the risks of abuse and neglect affecting people with dementia. • Have an understanding of some of the policies and legal framework related to adult safeguarding and protection. • Have an awareness of options to support people with dementia so they are able to protect themselves. • Understand professional responsibilities and local requirements. • Be familiar with local and national resources relevant to this subject.

Introduction The abuse and neglect of adults have become better known and more understood in recent decades. While only a minority of people with dementia may be at risk of such harm, the symptoms of dementia appear to lead to greater vulnerability or diminished ability to protect oneself from harm. In this chapter we explore these subjects, taking a UK focus in the main. The UK focus explains why much of the discussion relates to adult safeguarding or adult protection rather than elder protective services, the term more commonly used in the US. In other parts of the world it is more common to talk of elder abuse but in the UK, services and legislation are not so specifically age-related. Nonetheless, the origins of adult safeguarding lie to a substantial extent in concerns about the care of older people; whether those affected had dementia was not generally addressed when ‘discovering’ elder abuse. 144

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Over 50 years ago the poor treatment of older people in the 1960s in care homes and in hospitals had been highlighted in books and campaigns (Townsend 1962; Robb 1967). That poor treatment was not confined to institutions was then later exposed in reports of elder abuse in domestic situations in the 1970s by family members, at the time labelled ‘granny bashing’ (Baker 1975) or ‘granny-battering’ (Burston 1975). Interest in what to do as a response emerged in the 1980s (Bennett 1993), with 400 professionals attending the first UK conference on elder abuse held in 1988 organised by the British Geriatrics Society. The charity Action on Elder Abuse (AEA) was founded in 1993; today it has offices in all four nations of the UK. Operating a free helpline for those affected by abuse and publishing a regular bulletin, AEA was asked by the Department of Health to formulate a definition of elder abuse to try to clarify the boundaries of abuse: a single or repeated act or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person. (Action on Elder Abuse 1993)

This definition, later adopted by the World Health Organization (WHO) in the Toronto Declaration on the Prevention of Elder Abuse (2002), is notable for its condition that there should be a pre-existing relationship with an expectation of trust in order for the action or inaction to constitute elder abuse. Elder abuse has more recently been seen as ‘a serious and severe human rights abuse’ (House of Lords and House of Commons Joint Committee on Human Rights 2007, para 20) in which the need for a presumption of trust is not so prominent. The Human Rights Act 1998 (HRA), which came into force in 2000, incorporates the European Convention on Human Rights (ECHR) into UK law. In several cases compensation has been awarded under the HRA following instances of abuse in institutions, notably in the scandal surrounding the treatment of patients in Stafford Hospital (Leigh Day 2011). One further relevant thread in recent public policy has been thinking about the connections between adult safeguarding and domestic violence responses. Distinctions between the two include the reach of adult safeguarding extending beyond intimate and family relationships (the domain of domestic violence) to relationships with practitioners and indeed with strangers. Also, unlike domestic violence policy, adult safeguarding services in England generally focus on people with care and support needs who cannot protect themselves (s 42(1) Care Act 2014). Adult safeguarding covers neglect and some forms of self-neglect; but

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coercive control, which often features in domestic violence, may not be present (Clarke, Williams and Wydall 2015). However, although services and policy for people experiencing domestic violence or adult abuse have developed separately, and services such as Women’s Aid generally have an image of offering support to women and young families, in England the statutory guidance to the Care Act 2014 makes clear that domestic violence may be a form of adult abuse (Department of Health 2016, para 14.17). In 2015, the government also implemented a new offence of controlling or coercive behaviour (an offence that does not necessarily require violence or the threat of violence) between intimate and former partners and family members, and its guidance points out that the new offence should be dealt with as part of adult and/or child safeguarding and public protection procedures (Home Office 2015). The relevance of this to people with dementia is yet to be fully determined.

Risks We do not know how many people with dementia are abused or neglected but we do have some information about the prevalence of elder abuse in the UK (O’Keeffe et al. 2007). Of 2100 people living in private households across the UK, aged 66 and over, 2.6 per cent reported that they had experienced mistreatment (abuse and/or neglect) involving a family member, close friend or care worker during the past year; when this was broadened to include neighbours and acquaintances, the overall prevalence increased from 2.6 per cent to 4.0 per cent (2007, p.3). Taking this broader categorisation, the research team estimated that the number in the UK population experiencing neglect was 105,000 per year; financial abuse, 86,500; physical abuse, 62,400; psychological abuse, 58,600; and sexual abuse, 42,500 (2007, p.72). This study did not include people who were unable to respond to the survey, such as many people with dementia, and was community based, so excluded people living in care homes or staying in hospital. We do not know if such locations present greater risks but the prevalence statistics from O’Keeffe et al. (2007) remain the ‘best evidence’ so far.

Dementia-specific risks In this section we outline some of the ways in which the symptoms of dementia (see Chapter 1) might add to risks of abuse or neglect. In Chapter 1, for example, the case study of George refers to him experiencing

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‘episodes of visual hallucinations; he was seeing intruders in his garden whom he believed were stealing his belongings’. His concerns are accepted as ‘hallucinations’ and he might therefore be ‘easy prey’ to an unscrupulous relative or stranger. For gangs or individuals seeking victims who might be less able to report a theft or exploitation, someone with known memory problems or seemingly ‘confused’ might be the ideal victim. Other risks arise from judgements being affected so much that responses to a potential ‘scam’ phone call, email or letter are less guarded. As Chapter 1 explains, ‘dysexecutive syndrome’ reflects problems in frontal brain connections causing difficulty with planning, problem solving and performing actions in a sequence. These may make it difficult to remember security measures or determine if an apparently kind person might be fraudulent. Giving a statement to the police might be particularly difficult. Problems in maintaining attention while performing tasks, especially those that require sustained attention, can occur early on in the dementia trajectory and may affect general transactions. People may not recall the documents they have signed or items they have given away, or whether they have already paid for something or taken their medication. They may ‘lend’ money to relatives or care workers or be easily persuaded to take out subscriptions or take up ‘special offers’. Medication may go ‘missing’. In care homes, hospitals and any other care situation it is hard to distinguish between ‘poor care’ and deliberate or wilful neglect. Symptoms of dementia, such as impaired communication, may make it particularly hard for the person to voice a concern or complaint about the pain from a pressure ulcer or ‘rough handling’, for example. Their ‘confusion’ can make it easy to dismiss or overlook their possible distress. Other residents’ or patients’ challenging behaviour, such as sexual disinhibition, may present risks of abuse. Fear of being seen as ‘incompetent’ or being ‘moved to a care home’ may mean that crimes such as doorstep ‘cons’ or email scams are left unreported. Apparent inconsistencies between what is known about a person and their living conditions may be a sign that their money is disappearing (e.g. lack of heating or missing possessions). Large amounts of post containing offers to ‘make money’, or strangers calling or living in the premises and claiming to be ‘carers’, might also raise concerns. ‘Care’ that is provided in bedrooms or bathrooms of hospitals or care homes is likely to not be witnessed by others and home care is largely unseen by others. In some instances, suspicious relatives may set in place covert surveillance – such as cameras – as a way of proving what is happening. Media reports of such cases when they reach the public domain can make for harrowing reading (e.g. The Sun 2016).

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STOP AND REFLECT How would you respond to a family member who on reading a newspaper story about abuse in care now feels desperately guilty that they have arranged for their mother with dementia to move to a care home?

Later in this chapter we outline what should be done in such circumstances, ideally with the person’s consent. However, it is important not to overstress the risks of abuse and neglect. Most people with dementia are well supported. For some the diagnosis of dementia may provide some protection in that people may be more alert to the risks, and the person with dementia may be better protected in care settings or relationships than when on their own. Later, a brief summary of ways in which some protection can be put in place is suggested but see also the chapter on decision making (Chapter 13).

Policies and legislation Adult safeguarding and the law Under the Care Act 2014, there are six principles in England that ground adult safeguarding: empowerment, prevention, proportionality, protection, partnership, and accountability (Department of Health 2016, para 14.13). The guidance accompanying the Care Act repeats a much-used breakdown of the different forms that abuse and neglect may take (para 14.17), namely: • Physical abuse • Domestic violence • Sexual abuse • Psychological abuse • Financial or material abuse • Modern slavery • Discriminatory abuse • Organisational abuse (including neglect and poor care in settings such as hospitals and care homes) • Neglect and acts of omission • Self-neglect.

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Clearly some forms may be possible crimes – such as theft or assault, and, as described later, the police will need to be informed about such suspicions. Incidents of abuse or neglect may be one-off or multiple, and affect one person or more (Department of Health 2016, para 14.18), and this is why concerns about possible abuse in care settings need to be collated so that any pattern can be recognised. In England, for the abuse and/or neglect to be a safeguarding concern (taken up by the local authority for enquiries and investigation) it is necessary that the person affected has care and support needs; this is very likely if the person has dementia. Section 42(1) of the Care Act sets out the conditions that trigger the local authority’s duty to enquire (or have enquiries made), namely, where the local authority has reasonable cause to suspect that an adult in its area: • has needs for care and support (whether or not the authority is meeting any of those needs) • is experiencing, or is at risk of, abuse or neglect • as a result of those needs is unable to protect himself or herself against the abuse or neglect or the risk of it (s 42(1) Care Act 2014). Of course, safeguarding enquiries and actions are not a substitute for ‘the core duties of the police to prevent and detect crime and protect life and property’ (Department of Health 2016, para 14.9), which are the rights of anyone with or without dementia. But highly relevant to people with dementia is the offence introduced by the Mental Capacity Act (2005) (MCA) (England and Wales), which applies where someone who has the care of an individual who lacks decision-making capacity can be charged with ill-treatment or wilful neglect (s 44 MCA) (Manthorpe and Samsi 2015).

Structure and implementation of policy While adult safeguarding policy in England is set at the Department of Health and Social Care, the lead agency for the policy’s implementation is the local authority (Department of Health 2016, para 14.100) (there are 152 with adult social-services responsibilities in England) and its partners including the NHS and the local police. Although the adult social care department of each authority has the primary role in adult safeguarding, under the Mental Capacity Act (2005) some investigations are also undertaken by the Office of the Public Guardian. This section sets out local arrangements for responding to abuse of adults at risk of harm

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and best practice in safeguarding. It also outlines some of the preventive measures in place such as the system of pre-employment checks.

Safeguarding Adults Boards Although there is considerable local variation in the way safeguarding is organised (Graham et al. 2016), the Care Act made certain elements of implementation mandatory. Alongside the duty to enquire, or have enquiries made, in the circumstances set out in section 42 (see above), every local authority must have a Safeguarding Adults Board (SAB; s 43 Care Act). SABs are made up of representatives of the agencies relevant to adult safeguarding and oversee the effectiveness of what each agency does in relation to safeguarding (s 43(3) Care Act). SABs must include representatives from the local authority itself, the local chief officer of police and the local NHS Clinical Commissioning Group, and may also include representatives from a wide array of relevant agencies (e.g. the fire service, housing providers, Care Quality Commission etc.) (Department of Health 2016, paras 14.145–6). They have a strategic rather than an operational role, are encouraged by the Department of Health to have an independent chair, and publish an annual report on the local authority’s performance in safeguarding (Department of Health 2016).

STOP AND REFLECT Look on the internet for your local SAB annual report to find out what its main activities have been in the past year. What does it intend to concentrate on in the coming year? How is your employer involved in the work reported?

Safeguarding Adults Reviews Under the Care Act 2014, SABs are able to arrange Safeguarding Adults Reviews (SARs) where there is reasonable cause for concern about how relevant agencies or people work together to safeguard an adult, and condition 1 or 2 is met. Condition 1 is that the adult has died and the SAB knows or suspects that this resulted from abuse or neglect. Condition 2 is that the adult is still alive and the SAB knows or suspects that the adult has experienced serious abuse or neglect (s 44 Care Act). Prior to the Care Act, a similar review process, known as Serious Case Review, was in place.

Safeguarding and Dementia

All relevant agencies must supply information when asked by the SAB when it is conducting the SAR. While the goal of an SAR is not to apportion blame unfairly but to learn lessons in order to improve future working practices (s 44(5) Care Act) there may be concern about possible blame or scapegoating. The reviews that have focused on what went wrong where the individuals concerned had dementia have generally pointed to omissions in following the Mental Capacity Act (2005) and in overlooking problems or system-wide failings.

STOP AND REFLECT On the website of your Safeguarding Adults Board (probably located under the local authority site or by the local authority name) find a Serious Case Review or Safeguarding Adults Review. Have a read of the report or the executive summary and identify any points relevant to your practice.

The Office of the Public Guardian The Office of the Public Guardian (OPG) ‘protects people in England and Wales who may not have the mental capacity to make certain decisions for themselves, such as about their health and finance’ (Office of the Public Guardian n.d.). Part of its role is to conduct safeguarding investigations into the actions of attorneys (people appointed by an individual to assist in making their decisions, or to make decisions on that individual’s behalf) and deputies (people appointed by the Court of Protection to make decisions on the behalf of an individual lacking capacity) (Office of the Public Guardian 2015). It may undertake the investigation on its own or with other agencies, in particular the local authority (Office of the Public Guardian 2015), and may ultimately apply to the Court of Protection to have deputies removed, or the legal document appointing the attorney (‘Lasting Power of Attorney’) revoked. Nurses may be the only people who have contact with the individual with dementia other than the deputy or the person with Power of Attorney and so they have a vital role to pass on any suspicions or concerns to the local authority safeguarding team.

CASE STUDY: GLADYS Community nurse Sharon calls on Gladys to change her dressings. Her son, Kevin, is always present during the treatment and mentions that he has Power of Attorney to make decisions on his mother’s

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behalf. He seems unwilling to put the heating on or to replace soiled bedding or get a more suitable bed. Sharon notices that Gladys has only a small sandwich for lunch and that this is on a grubby plate; when Sharon suggests getting in some help with housework, Kevin says that this would be a waste of money as his mother is unaware of her surroundings. Sharon makes notes of her visit and contacts the safeguarding lead in her team about her concerns. The NHS Trust safeguarding lead agrees that this information should be passed to the local authority safeguarding team as a referral. A few months later Sharon receives a letter from the safeguarding service to say that the Power of Attorney arrangements have been revoked and new arrangements are in place. Gladys has moved to a care home.

Prevention This chapter so far has focused on responses to possible abuse or neglect. However, professionals should also work to prevent such occurrences. One key element of prevention in the UK is the checking of people working or volunteering with vulnerable adults in the health and social care sectors (private and public) who are required to undergo pre-employment checks for a possible criminal record through the Disclosure and Barring Service (DBS). It is the duty of the employer to check if their staff or volunteers are barred from such work. If the individual is found to have a criminal record the employer must consider whether their offence(s) give rise to particular concern and whether the risks of employing an individual would be too high. This is in addition to other checks for registered professionals (such as for good character). Very similar schemes operate in other parts of the UK and internationally (Manthorpe and Lipman 2015). While it is generally not possible to ‘prove’ that prevention works, the DBS system provides some reassurance. Other elements of prevention in employment include recruiting people to care work on the basis of their values, with the hope that value-based recruitment will lead to good care. Other elements of prevention include: • The checks and inspections of the health and social care regulator (in England, the Care Quality Commission) – for example that medications are being safely administered – and that staff are on duty and trained. • Making arrangements with banks to ensure that only minimum amounts of cash can be withdrawn on any one day.

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• Trading Standards publicity about extortion or exploitation ‘rackets’ operating locally. • Key safe installations to help only the right people access the home by arrangement. • Assistive technology to provide camera pictures of exits and entry to certain premises. • Early arrangements of financial affairs following a dementia diagnosis. • Training for bank and shop staff to be alert to possible ‘grooming’ of people with dementia by people pretending to be friends who want to access their cash or property. • Policies related to setting boundaries between clients with dementia and their care workers and other professionals – for example about lending of money, acceptance of gifts and witnessing documents. • Good record keeping at all times so that problems do not get ignored.

STOP AND REFLECT Looking at the list of prevention strategies, devise a plan for safeguarding Tom, a widower with dementia, who lives in a block of flats where the other tenants are transitory and conditions are not good for anyone. Security is weak and Tom is known to get into arguments and distress with other tenants. What could help keep him safer?

Conclusion The last 25 years have seen the responses to the abuse and neglect of adults gaining a higher profile. There has been a focus on the quality both of joint working by all the agencies involved and the leadership provided by the local authority. For people with dementia the risks of abuse and neglect are multiple, requiring vigilance from all practitioners. Suspicions and concerns should be addressed with managers and supervisors; and in rare instances professional duties of care may require whistleblowing outside the employing organisation.

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STOP AND REFLECT Below are some examples of practice challenges: Think about the risks of neglect that might be present when a person with dementia is being cared for by a family member who has had a previously poor relationship with them but is now reliant on them for accommodation, money and a role. What are the strengths of this relationship? How can the risks of neglect be minimised? Imagine you are seeing Jacob, who has a pressure ulcer but assures you that he is fine and his care workers are mostly ‘wonderful people’. He then says that one of them is a bit rough but does not want you to raise this with anyone as he will have to move to a care home. He starts to cry and begs you not to say anything. You are with Molly, who has a recent diagnosis of dementia and wants you to explain in simple language some of the things she was told about at the memory clinic. She confesses she cannot use the internet and that leaflets now confuse her. Have a go at explaining in simple terms the advantages of a Lasting Power of Attorney and the disadvantages, and what Molly should do if she wants to make one. Try this explanation on a friend or family member.

References Action on Elder Abuse (1993) What is elder abuse? http://elderabuse.org.uk/what-is-elderabuse (Accessed 30 Jan 2018). Baker, A. (1975) Granny bashing. Modern Geriatrics. 5(8): 20–24. Bennett, G.C.J. (1993) Elder abuse in contemporary British society. Journal of Elder Abuse and Neglect. 5(2): 1–5. Burston, G.R. (1975) Granny-battering. British Medical Journal. 3: 592. Clarke, A., Williams, J. and Wydall, S. (2015) Access to justice for victims/survivors of elder abuse: a qualitative study. Social Policy and Society. 15(2): 207–220. Department of Health (2016) Care and Support Statutory Guidance Issued under the Care Act 2014. www.gov.uk/government/publications/care-act-statutory-guidance/careand-support-statutory-guidance (Accessed 2 Feb 2018). Graham, K., Stevens, M., Norrie, C., Manthorpe, J., Moriarty, J. and Hussein, S. (2016) Models of safeguarding in England: identifying important models and variables influencing the operation of adult safeguarding. Journal of Social Work. 17(3): 255–276. Home Office (2015) Controlling or Coercive Behaviour in an Intimate or Family Relationship. London: Home Office. House of Lords and House of Commons Joint Committee on Human Rights (2007) The Human Rights of Older People in Healthcare. Eighteenth Report of Session 2006–07. Volume I – Report and Formal Minutes. London: Stationery Office.

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Leigh Day (2011) Mid Staffs Inquiry closes as latest claims conclude on behalf of victims and their families. www.leighday.co.uk/News/2011/December-2011/Mid-Staffs-Inquirycloses-as-latest-claims-conclud (Accessed 30 Jan 2018). Manthorpe, J. and Lipman, V. (2015) Preventing abuse through pre-employment checks: an international review. Journal of Adult Protection. 17(6): 341–350. Manthorpe, J. and Samsi, K. (2015) Care professionals’ understanding of the new criminal offences created by the Mental Capacity Act 2005. International Journal of Geriatric Psychiatry. 30(4): 384–392. Office of the Public Guardian (2015) Safeguarding Policy. Birmingham: Office of the Public Guardian. Office of the Public Guardian (n.d.) About us. www.gov.uk/government/organisations/ office-of-the-public-guardian/about (Accessed 30 Jan 2018). O’Keeffe, M., Hills, A., Doyle, M., McCreadie, C., Scholes, S., Constantine, R. et al. (2007) UK Study of Abuse and Neglect of Older People: Prevalence Survey Report. London: National Centre for Social Research; King’s College London. Robb, B. (1967) Sans Everything: A Case to Answer. London: Nelson. The Sun (2016) Care Home Torturer: Shocking moment evil care worker slapped an elderly dementia sufferer, 85, round the head and twisted her wrists and fingers. 23 November. www.thesun.co.uk/news/2241391/shocking-moment-evil-care-worker-slapped-anelderly-dementia-sufferer-85-round-the-head-and-twisted-her-wrists-and-fingers (Accessed 2 Feb 2018). Townsend, P. (1962) The Last Refuge: A Survey of Residential Institutions and Homes for the Aged in England and Wales. London: Routledge and Kegan Paul. World Health Organization (2002) Toronto Declaration on the Prevention of Elder Abuse. New York: WHO.

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Chapter 12

Sexuality and Dementia Jane Youell

Learning objectives By the end of this chapter you will: • Have a greater understanding of the complexities of intimacy and sexuality in relationships affected by dementia. • Have an understanding of evidence-based proposals to support relationships affected by dementia. • Have an appreciation of relational wellbeing and the barriers to intimacy.

Introduction This chapter will explore the intricacies and complexities of relationships affected by dementia particularly in respect of sexuality and intimacy. It shall be evidenced that intimacy is often an overlooked aspect of aged care but remains important throughout the lifespan. The experiences of people living with dementia and their carers shall be discussed in terms of relational wellbeing. An understanding of the diversity of contemporary relationships shall also be offered including the Lesbian, Gay, Bisexual, Transgender, Intersex (LGBTI) community, Black and Minority Ethnic (BME) population, those living in the community and those living in care. Barriers around maintaining an intimate life with dementia shall be presented with practical solutions and evidence-based practice. The impact that a diagnosis of dementia has on the person living with the condition and their family can be far reaching. Activities of daily living are affected; the ability to work or socialise is restricted over time; proxy decision makers will be needed; and advanced plans need to be made sooner rather than later due to the progressive nature of the condition (Roehr et al. 2017). 156

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Whilst recognition of the challenges of living with dementia is well documented in the literature, often sexuality, intimacy and relational wellbeing are overlooked. There are several reasons for this omission. Dementia predominantly, but not exclusively, affects older people (LloydWilliams, Harrison Dening and Crowther 2017). The societal expectation that everyone over 65 is ‘sexually retired’ means that the intimate needs of older people are often not considered in care (Bauer, McAuliffe and Nay 2007). Cognitive impairment also impacts on the perceived appropriateness of sexual relationships (Thom, Grudzinskas and Saleh 2017). This, coupled with ageism, creates a ‘double whammy’ effect and reduces the likelihood that sexual needs are going to be identified by care providers. In their systematic review of healthcare professionals’ attitude to sexuality in aged care, Haesler, Bauer and Fetherstonhaugh (2016) found that health practitioners felt that there was a lack of training in intimacy and sexuality and that these were factors of wellbeing which were outside the scope of healthcare. Attitudes, perceptions and assumptions amongst staff help to support or deny a sexual life. As dementia progresses, private spaces become increasingly public as care needs increase (Youell, Callaghan and Buchanan 2016). People living with dementia, and their carers, become increasingly supported by healthcare professionals. Intimacy and sexuality need to be normalised and seen as an important quality-of-life indicator within relationships. The majority of people living with dementia will be cared for in their own homes by a spouse, family member or close friend (Dening and Milne 2008; Alzheimer’s Disease International 2010; SCIE 2015). The relational impact of living with the diagnosis is therefore an important aspect of care giving.

Sexuality and intimacy STOP AND REFLECT What does sexuality mean to you? What does intimacy mean to you?

Sexuality Sexuality and sexual expression are often seen as the domain of the young and the beautiful in Western culture (Sherman 1998; Gott 2005; Bauer, McAuliffe and Nay 2009; White 2011). ‘Sexuality’ describes sexual interests and preferences (Dominguez and Barbagallo 2016). For some people

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sexuality stays fixed and defined but for others it can change over time as they age (Terence Higgins Trust 2018). Sexuality is often moderated and ‘managed’ when a person becomes dependent on others for their care. Opportunities to meet people are limited and often monitored and moderated, especially in care home settings. A diagnosis of dementia does not necessarily impact on the continuation or desire to maintain sexual relationships (Dourado et al. 2010). Couples who had formerly settled into a mutually agreed non-sexual relationship before the dementia diagnosis can notice significant changes in their relationship, with a partner forgetting that the couple were previously platonic and now seeking to pursue a sexual relationship again. As private lives become increasingly public due to care needs, opportunities for privacy are diminished, which impacts on the ability to maintain sexual relationships, self-pleasure or access pornography (Tarzia, Fetherstonhaugh and Bauer 2012). Providing personal care can become a barrier to maintaining a sexual life as the carer feels increasingly burdened by their caring responsibilities and the cared-for’s ability for body maintenance is reduced. The ability to provide empathy to a carer is reduced as dementia progresses, which impacts on the emotional labour within the relationship, carers often reporting that this is one-sided and no longer reciprocal (Hochschild 1983; Youell, Callaghan and Buchanan 2016).

STOP AND REFLECT How do the media portray sexuality and intimacy between older people? What impact do you think this has on societal attitudes?

Intimacy ‘Intimacy’ is a broad and subjective term. It might describe a sense of belonging, of being ‘one’ with another and the desire to share thoughts, experiences and passions with a significant other (Grigorovich and Kontos 2016). There is a sense of mutuality, wanting frequent interaction with each other, a sharing of values. Intimacy is often described as an intense liking or loving, having knowledge of the whole person, sharing aspects of self that might not be shared with others, and allowing our vulnerabilities to be shown authentically (Marar 2012). Intimacy is situated in reciprocity, interdependence, trust and connection. It can be played out through shared humour, shared histories, shared experiences. Intimacy can be sexual, but is not always. It is all the small, everyday, loving gestures and selfless kindnesses which couples show each other (Youell et al. 2016).

Sexuality and Dementia

The way intimacy is expressed and communicated between couples can vary. There is an argument to suggest that disclosing intimacy (talking about your feelings, opening up, sharing) is a relatively modern phenomenon (Prager 1995). There are cultural differences in the way that intimacy is expressed. Some people prefer to be very inward and private in their emotionality whereas others wear their heart on their sleeve. For those more private about intimate expression this does not diminish the intimate experience; couples who are deeply devoted to one another but choose not to express this devotion publicly are no less intimate than those who openly show affection for one another. Did you know that: • 31 per cent of British men from the ages of 80 to 90 still masturbate and have sex. • Just under 60 per cent of men between the ages of 70 and 80 are still sexually active. • 14 per cent of women between the ages of 80 and 90, and 34 per cent of women between 70 and 80, regularly engage in sex or masturbation. Sexuality and intimacy are affected by a diagnosis of dementia in a range of ways. Providing personal care for someone can act to diminish the feelings of attraction; hypersexuality (repeatedly attempting sexual contact) can feel overwhelming and unpleasant; lewd and inappropriate comments can embarrass and make partners feel uncomfortable, especially if this is a side to their loved one’s personality which they have not met before. Complexities around consent and capacity can be difficult to navigate for carers, as can be maintaining an intimate relationship when a partner requires residential care. Talking to others can be difficult because of feelings of embarrassment, stigma, shame or guilt.

Inappropriate sexual behaviours (ISB) STOP AND REFLECT How do you define ‘inappropriate behaviour’? Reflect on how your cultural beliefs, attitudes and values might inform your response. Does this differ from those you work with?

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Whilst there is a dearth of literature addressing sexuality, intimacy and dementia from a lived-experience perspective, there is a notable body of work which focuses on inappropriate sexual behaviour (ISB). This literature includes hypersexuality, which is a condition often cited in dementia literature. Whilst the literature offers discussion about a particularly distressing aspect of dementia, the tenet of the research problematises sexuality and dementia and may contribute to the notion that all sex in dementia relationships needs to be ‘managed’. ISB in dementia has been defined as: sexual behaviours that are inappropriate, disruptive, and distressing and that impair the care of the patient in a given environment. (Black, Muralee and Tampi 2005, p.155)

These behaviours include using sexually explicit language, inappropriate touching, masturbating/touching genitals in public, getting into bed with other residents, requesting unnecessary genital care, watching porn in public, exhibitionism, sexual aggression, attempts at intercourse, and rape (Burns et al. 2012; Dominguez and Barbagallo 2016). ISB is often associated with frontotemporal dementias but can occur in any type of dementia and is most often seen in moderate to severe stages (Dominguez and Barbagallo 2016). If ISB is evident suddenly, there may be an underlying cause such as delirium, urinary tract infection, faecal compaction, comorbid psychosis, or an adverse reaction to medication (Burns et al. 2012; Joller et al. 2013; Dominguez and Barbagallo 2016). When ISB is present a sexual history will indicate whether this is new behaviour or caused by pre-existing mood disorder, substance use, psychosis or attention-seeking behaviour. Non-pharmacological interventions include recognising triggers which might prompt the ISB; identifying environmental, emotional or misinterpretation of care acts will further inform interventions (Joller et al. 2013). Removing precipitating factors such as considering gender of care staff, restricting access to particular residents when advances are causing distress, using distraction techniques and giving opportunities to relieve sexual urges privately can mitigate some of the distressing aspects of ISB, particularly in care home settings (Lennox and Davidson 2013; Dominguez and Barbagallo 2016). Should non-pharmacological interventions be ineffective some drug treatments have been found to be effective in reducing ISB. These include antidepressants, hormonal treatments, antipsychotics, anticonvulsants and cholinesterase inhibitors (Tucker 2010; Joller et al. 2013; Fabà and Villar 2013). It is important to remember that the presence of ISB is subjective. To problematise these behaviours precludes care workers from

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appreciating that something classified as ISB could actually be sexualised communication (Fabà and Villar 2013). Research has shown that sexual expression can reduce feelings of depression and loneliness, enhance selfesteem and promote a feeling of ‘being in the world’ (Nay 1992; Davies et al. 2012). By including residents in discussions about their sexualised behaviour, exploring why they might be behaving in this way and taking a sexual history, this will assist healthcare practitioners to understand the behaviour (Fabà and Villar 2013). It should be noted, however, that sexual histories as reported by family members may have a more conservative tone; for example, parents’ sexual histories are often not shared with their children (Doll 2015).

Diversity Whilst we may accept that sexuality is a universal human drive and that intimacy is a basic human need (Maslow 1954) the expression of both sexuality and intimacy is diverse. Sexuality is largely ignored or overlooked in aged care generally but in diverse populations even more so. The lack of consideration of the needs of the older LGBTI community in aged care is evident in the literature. Fenge and Jones (2012) argue that older lesbians and gay men taking part in research are those who are confidently ‘out’ and that there will be many others who remain hidden and whose voices are silenced. This invisibility needs to be addressed and considered in care provision. Haesler et al. (2016), in their article that explored the knowledge and attitudes of healthcare professionals towards sexuality and sexual health in older people, found that exposure to residents identifying as LGBTI had a positive impact on the attitudes of staff. This suggests that when one relates to another, human to human, prejudices are reduced. Negative stereotyping around the LGBTI community is also evidenced in the literature around capacity and consent. Di Napoli, Breland and Allen (2013) found that healthcare professionals were more permissive about sexual behaviour taking place between residents who have dementia than between two same-sex residents.

CASE STUDY: FRANK Frank was admitted into a care home from hospital where he had been treated for a fractured hip following a fall. Frank had previously lived alone and has no family. On admission to hospital it became apparent that Frank was in the moderate stages of Alzheimer’s disease. It was decided that it would be in Frank’s best interests to

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move to a care home. He was very confused and distressed by the move from home to hospital to care home. After a few days in the home, Frank made sexual advances to a male care worker when he was being bathed.

STOP AND REFLECT What do you think the impact of this could be on staff attitudes towards Frank? How would you deal with this situation, and what actions could you put in place?

Sprinks (2012) writes of the Stonewall and Runnymede Trust study which found that there was a largely heteronormative assumption around people from BME populations, indicating that the LGBTI community within minority groups are often an invisible voice. It is particularly important to recognise the cultural implications of being BME and LGBTI. This invisibility has a significant impact on care. Members of the LGBTI community report a reluctance to engage with care services (Barrett et al. 2015). Couples are concerned that their intimacy needs will not be accepted by care home staff or other residents, should one partner need residential or nursing care (Duffy and Healy 2014). This reluctance means that often partners struggle on in the community, which impacts on the quality of their relationship especially towards end of life (Barrett et al. 2015). Having positive, LGBTI-friendly care homes would mitigate these fears. LGBTI-friendly care provision should be the norm, not the exception. During the HIV/AIDS crisis of the 1980s the LGBTI community mobilised to care for one another; there may be many lessons which can be learned from this movement in terms of community care.

Interventions and evidence-based practice It could be argued that there is still a dearth of research in the area of sexuality, intimacy and dementia but the literature does offer some practical advice regarding supporting those relationships affected by dementia. It should be noted that all relationships are complex and each case will be different and unique; it will be the responsibility of all parties to navigate through the following suggestions and apply those which are most helpful at the time they are needed. For those living in the community, sexuality and intimacy needs are little discussed. Early in the diagnostic journey, coming to terms with the

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diagnosis and making sense of the subtle changes which have occurred and continue to occur may take some time. Support is focused on the medical model at this point; discussion is around seeking a diagnosis, addressing treatment options, navigating healthcare teams and planning for the future (Alzheimer’s Society 2018). Relational change may not be explicitly discussed. The diagnostic process may take a few months and this can be a worrying time for couples. When the diagnosis is confirmed this can still take some time to come to terms with. Couples report that there is often a period of uncertainty following a diagnosis of dementia which can cause strain on the relationship (Wadham et al. 2015). For those healthcare professionals working alongside couples in the early stages of dementia, assessment and history taking are par for the course. This should also include a sexual history (Elias and Ryan 2010). Obtaining an understanding of their sexual life together, creating a social space to discuss this, giving permission to talk about intimacy, and enabling discussion about what the hopes are for the future in terms of their sexuality and intimacy will shift the focus to relational wellbeing (Haesler et al. 2016). It may be that this is a conversation that people are not willing to have and this must be respected; but offering the opportunity enables couples to revisit the topic at a later date if needs be and recognises, values and normalises sexuality and intimacy in older age, thus challenging stereotypical notions. In the earlier stages of the diagnosis, when symptoms are beginning to impact on relational wellbeing, a referral to a relationship service might be an option. Organisations such as Relate offer a range of services to help with relationships, from one-to-one sessions and workshops, to self-help tools and online support. Some organisations offer free, confidential livechat sessions which may suit a carer or person with dementia better as they can be accessed from home (Relate 2018).

CASE STUDY: DORIS Doris has a diagnosis of vascular dementia and is currently in hospital following a chest infection. She is slowly recovering but is very disorientated by her move to hospital. She constantly calls for her husband, Jim, who died several years ago. This causes frustration with staff and other patients on the ward and distress for Doris’s family. Sometimes when calling for her husband, Doris touches her breasts and genitals. Staff see her as a ‘dirty old woman’ and they are reluctant to spend time with her, interacting only to perform necessary nursing tasks.

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STOP AND REFLECT What might Doris be trying to communicate? How can staff and family reassure Doris and help her to feel more settled?

Having a diagnosis of dementia is reported as a ‘strong determining factor’ in the decision to move into residential care in the over-65 age group (Alzheimer’s Society 2007). How couples maintain a sexual and intimate relationship when one partner moves into care is often a concern for the couple. Research suggests that lack of privacy is a major barrier to expressing sexuality (Tarzia et al. 2012). Rooms do not have locks and staff often knock and enter rather than waiting to be invited in. Offering ‘Do not disturb’ signs for residents to hang on their doors is a practical way of ensuring a little private time for couples (Mahieu, Anckaert and Gastmans 2017). Having blanket policies where staff check on residents throughout the day and night means that residents are fairly constantly monitored. This precludes residents from feeling comfortable enough to masturbate without fear of ‘being caught’. Unless there are reasonable grounds to check a resident overnight, this could be seen as a deprivation of liberty (Mental Capacity Act 2005). For some residents, masturbation is a means of controlling sexual urges and this should not be denied (Dominguez and Barbagallo 2016). For those residents who are masturbating in public areas of the care home, moves should be made to navigate the resident to their own private room. Should inappropriate and indiscriminate behaviour continue, other sensory stimuli may be an appropriate intervention, for example, aromatherapy, massage, silky clothes, pornography or sex toys (White 2011). Ensuring that a sexual and relational history has been taken on admission is also a useful tool to guide care provision. If a new resident has a history of being flirtatious, this may offer an explanation to behaviour seen in the care home. Having this knowledge will help staff to respond appropriately and with a person-centred approach rather than derision or mockery. A further non-pharmaceutical method, particularly where behaviour appears indiscriminate, might be distraction (Joller et al. 2013). Offering a resident the opportunity to talk about their relationships or to reminisce about previous partners might alleviate some of the feeling of absence of intimacy. For residents who are more tactile, consider pet therapy or offering different textured fabrics to stroke and caress. A further way of supporting intimacy in care homes is to organise social events where dating may occur. Moving tables in the dining room to

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accommodate seating for two rather than several can facilitate a more intimate feel. Offering opportunities to have a drink at ‘a bar’ followed by dancing enables residents to engage in relational and intimate situations. Staff training should be given to enable staff to discuss their own feelings about sexuality, intimacy and relationships affected by dementia. A greater understanding of the positive impact sexuality and intimacy can have on relationships even in old age will enable staff to normalise and accept behaviour. Exploring their own preconceptions and challenging social assumptions will promote a more relationship-centred attitude to care (Di Napoli et al. 2013). Respecting privacy, viewing intimate behaviours (such as kissing, hugging and holding hands) as important and encouraging residents and carers to share their relational feelings will better support those in care and recognise the value of positive, loving, intimate relationships (Davies et al. 2012). Organisations need to ensure that they have comprehensive policies and guidance concerning sexuality. Policies should be written based on consultation with residents, carers, family members, appointees and advocates, nursing staff, care staff, social workers and management. Policy should include such considerations as the rights of the individual to engage in sexual expression, have access to private spaces and the right to privacy, the right to practise sexual orientation, the right to confidentiality, access to sexually explicit materials and the right to access counselling in support of sexual expression. The policy should set out the staff responsibilities to maintain sexual expression and not intervene unless there is a safeguarding concern, to recommend use of private spaces and to ensure consultation where capacity is in doubt (Doll 2013). Organisations should commit to ensuring that policy can be upheld by providing private spaces and upholding the right to privacy for individual residents; ensuring sufficient staff training is given to equip staff with the skills to uphold the sexual rights of residents confidently and without prejudice; and also ensuring that the policy is communicated to residents and their families.

Conclusion Sexuality, intimacy and dementia offer a complex and sometimes challenging set of issues for healthcare professionals. The incidence of dementia is likely to increase over the next 20+ years and with the baby boomer generation being the next wave of care recipients, relational wellbeing will be a growing concern. The workforce needs to be better prepared to meet the needs of this cohort of care recipients. Considering our own prejudices and assumptions is a vital part of addressing the care

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needs of older people especially in connection to sexuality and intimacy. Thinking through some of the social constructions around aged care and sexuality enables greater understanding of the historical context of intimacy. Viewing care from a relationship-centred perspective enables care providers to meet not only the medical needs of those they support, but also the social, emotional, human needs too. Training will skill the workforce to enable them to confidently include sex and intimate wellbeing in their work with older couples living with dementia. Organisational policy and guidance will offer a framework for the workforce to implement and communicate with residents and carers to normalise and value sexuality and intimacy up to the point of end of life. Sexuality and intimacy are embodied experiences which are central aspects of being human throughout the lifespan and should be viewed from a social rights/ wellbeing perspective and not just through a biological lens.

References Alzheimer’s Disease International (2010) World Alzheimer Report 2010: The Global Economic Impact of Dementia. www.alz.co.uk/research/WorldAlzheimerReport2010 (Accessed 12 Jan 2018). Alzheimer’s Society (2007) Home from Home: A Report Highlighting Opportunities for Improving Standards of Dementia Care in Care Homes. London: Alzheimer’s Society. Alzheimer’s Society (2018) Diagnosis. www.alzheimers.org.uk/info/20071/diagnosis (Accessed 12 Jan 2018). Barrett, C., Crameri, P., Lambourne, S., Latham, J.R. and Whyte, C. (2015) Understanding the experiences and needs of lesbian, gay, bisexual and trans Australians living with dementia, and their partners. Australasian Journal on Ageing. 34(52): 34–38. Bauer, M., McAuliffe, L. and Nay, R. (2007) Sexuality, health care and the older person: an overview of the literature. International Journal of Older People Nursing. 2(1): 63–68. Bauer, M., McAuliffe, L. and Nay, R. (2009) Sexuality and the reluctant health professional. In R. Nay and S. Garrat (eds) Caring for Older People: Issues and Innovations. Third edition. Sydney: Elsevier. Black, B., Muralee, S. and Tampi, R.R. (2005) Inappropriate sexual behaviours in dementia. Journal of Geriatric Psychiatry and Neurology. 18: 155–162. Burns, K., Jayasinha, R., Tsang, R. and Brodaty, H. (2012) Behaviour Management: A Guide to Good Practice. New South Wales: DCRC. Davies, H.D., Sridhar, S.B., Newkirk, L.A., Beaudreau, S.A. and O’Hara, R. (2012) Gender differences in sexual behaviours of AD patients and their relationship to spousal caregiver well-being. Aging and Mental Health. 16(1): 89–101. Dening, T. and Milne, A. (2008) Mental health in care homes for older people. In R. Jacoby, C. Oppenheimer, T. Dening and A. Thomas (eds) The Oxford Textbook of Old Age Psychiatry. Oxford: Oxford University Press. Department of Constitutional Affairs (2007) Mental Capacity Act 2005: Code of Practice. London: TSO. Di Napoli, E.A., Breland, G.L. and Allen, R.S. (2013) Staff knowledge and perceptions of sexuality and dementia of older adults in nursing homes. Journal of Aging and Health. 25(7): 1087–1105.

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Doll, G.M. (2013) Sexuality in nursing homes: practice and policy. Journal of Gerontological Nursing. 39: 30–37. Dominguez, L.J. and Barbagallo, M. (2016) Ageing and sexuality. European Geriatric Medicine. 7: 512–518. Dourado, M., Finamore, C., Barrosso, M.F., Santos, R. and Laks, J. (2010) Sexual satisfaction in dementia: perspectives of patients and spouses. Sexuality and Disability. 28: 195–203. Duffy, F. and Healy, J.P. (2014) A social work practice reflection on issues arising for LGBTI older people interfacing with health and residential care: rights, decision making and end-of-life care. Social Work in Health Care. 53: 568–583. Elias, J. and Ryan, A. (2010) A review and commentary on the factors that influence expressions of sexuality by older people in care homes. Journal of Clinical Nursing. 20: 1668–1676. Fabà, J. and Villar, F. (2013) Dementia and inappropriate sexual behaviour (ISB): what we know and what we need to know. Kairós Gerontologia. 16: 49–68. Fenge, L.-A. and Jones, K. (2012) Gay and pleasant land? Exploring sexuality, ageing and rurality in a multi-method, performative project. British Journal of Social Work. 42: 300–317. Gott, M. (2005) Sexuality, Sexual Health and Ageing. Maidenhead: McGraw-Hill. Grigorovich, A. and Kontos, P. (2016) Advancing an ethic of embodied relational sexuality to guide decision-making in dementia care. Gerontologist. 58(2): 219–225. Haesler, E., Bauer, M. and Fetherstonhaugh, D. (2016) Sexuality, sexual health and older people: a systematic review of research on the knowledge and attitudes of health professionals. Nurse Education Today. 40: 57–71. Hochschild, A. (1983) The Managed Heart: Commercialization of Human Feeling. California: University of California Press. Joller, P., Gupta, N., Seitz, D.P., Frank, C., Gibson, M. and Gill, S.S. (2013) Approach to inappropriate sexual behaviour in people with dementia. Canadian Family Physician. 59: 255–260. Lennox, R. and Davidson, G. (2013) Sexuality and dementia: law, policy and practice. Practice: Social Work in Action. 25: 21–39. Lloyd-Williams, M., Harrison Dening, K. and Crowther, J. (2017) Dying with dementia – how can we improve the care and support of patients and their families? Annals of Palliative Medicine (online). 6(4): 306–309 (Accessed 13 Dec 2017). doi: 10.21037/ apm.2017.06.23. Mahieu, L., Anckaert, L. and Gastmans, C. (2017) Intimacy and sexuality in institutionalised dementia care: clinical-ethical considerations. Health Care Analysis. 25: 52–71. Marar, Z. (2012) Intimacy: Understanding the Subtle Power of Human Connection. New York: Routledge. Maslow, A. (1954) Motivation and Personality. New York: Harper and Row. Mental Capacity Act 2005. c. 9 (online). London: The Stationery Office. www.legislation. gov.uk/ukpga/2005/9/contents (Accessed 12 Jan 2018). Nay, R. (1992) Sexuality and aged women in nursing homes. Geriatric Nursing. 13(6): 312–314. Prager, K. (1995) The Psychology of Intimacy. London: Guilford Press. Relate (2018) Home (online.) www.relate.org.uk (Accessed 12 Jan 2018). Roehr, S., Pabst, A., Luck, T. and Riedel-Heller, S.G. (2017) Secular trends in the incidence of dementia in high-income countries: a protocol of a systematic review and a planned meta-analysis. BMJ Open (online). 7: e013630 (Accessed 13 Dec 2017). doi: 10.1136/ bmjopen-2016-013630. SCIE (2015) What is dementia? (online). www.scie.org.uk/dementia/about (Accessed 12 Jan 2018). Sherman, B. (1998) Sex, Intimacy and Aged Care. London: Jessica Kingsley Publishers.

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Spector, A., Thorgrimsen, L., Woods, B., Royan, L., Davies, S., Butterworth, M. et al. (2003) Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia: randomised controlled trial. British Journal of Psychiatry. 183: 248–254. Sprinks, J. (2012) Report suggests healthcare staff assume BME patients are straight. Nursing Standard. 26(51): 8. Tarzia, L., Fetherstonhaugh, D. and Bauer, M. (2012) Dementia, sexuality and consent in residential aged care facilities. Journal of Medical Ethics. 38(10): 609–613. Terence Higgins Trust (2018) What is sexuality? www.tht.org.uk/sexual-health/Youngpeople/Sexuality-_and_-gender/What-is-sexuality_qm_ (Accessed 12 Jan 2018). Thom, R.P., Grudzinskas, A.J. and Saleh, F.M. (2017) Sexual behaviour among persons with cognitive impairments. Current Psychiatry Reports. 19: 25. doi.org/10.1007/s11920-0170777-7 (Accessed 13 Dec 2017). Tucker, I. (2010) Management of inappropriate sexual behaviors in dementia: a literature review. International Psychogeriatrics. 22(5): 683–692. Wadham, O., Simpson, J., Rust, J. and Murray, C. (2015) Couples shared experiences of dementia: a meta-synthesis of the impact upon relationships and couplehood. Aging and Mental Health. 20(5): 463–473. White, E. (2011) Dementia and Sexuality. London: Hawker. Youell, J., Callaghan, J. and Buchanan, K. (2016) ‘I don’t know if you want to know this’: carers’ understandings of intimacy in long-term relationships when one partner has dementia. Ageing and Society. 35(5): 946–967.

Chapter 13

Supporting Decision Making in Dementia Jill Manthorpe

Learning objectives By the end of this chapter you will: • Be aware of the multiple decisions affecting people living with dementia and their family carers. • Have an understanding of some of the policies and legal framework related to decision making for others. • Have an awareness of options to support people with dementia so they are able to make decisions in advance if they wish. • Understand professional responsibilities. • Be familiar with local and national resources relevant to this subject so that advice and information are of high quality.

Introduction Making decisions is an ordinary part of life and most decisions are undertaken without anyone else being involved, especially when we are adults. We tend to think about some decisions as being ‘big’ but often overlook smaller everyday ones. Decisions can be clear in that they may necessitate a distinct choice between one thing and another; but other decisions may be a matter of making choices between several different options or uncertainties, or doing nothing, permanently or for the time being. Where no decision can be the ‘right’ choice we often refer to it as presenting us with a dilemma. We also talk of ‘joint’ decisions

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and shared decisions, and sometimes we allow other people to make decisions for us. But for people with dementia decision making is central. This is because ‘mental capacity’ means being able to make your own decisions (see Mental Capacity Act (MCA) 2005) and lacking mental capacity is often associated with dementia. While people living with dementia may retain decision-making abilities, especially at early stages, someone lacking capacity because of dementia cannot do (for example) one or more of the following four things: • Understand information given to them about a particular decision • Retain that information long enough to be able to make the decision • Weigh up the information available to make the decision • Communicate their decision. As the Mental Health Foundation (n.d.) points out, a person with dementia is likely to lose the ability to make decisions as the dementia gets more severe. Chapter 1 framed dementia as a ‘dysexecutive syndrome’ in which problems in frontal brain connections cause difficulty with planning, problem solving and performing actions in a sequence. These may make it difficult to make decisions, and give rise to a situation where the person is seen to be lacking capacity to make a specific decision. There is increasing interest in the ethics of dementia care and practice, some of which emphasises that few if any decisions are taken in isolation and that the capacity or ability of a person living with dementia to make decisions is not an all-or-nothing situation (Nuffield Council on Bioethics 2009). Moreover, people living with dementia may have ‘good’ or ‘bad’ times of the day, and skilled communication can help in ‘hearing the person’s voice’. For a long time people with dementia and other mental health problems were treated as being unable to function in society. The treatment of older people in care homes and in hospitals, often referred to as ‘institutions’, entailed taking away their power to make decisions or choices. The chapter on safeguarding in this book addresses some of the history of such treatment (see Chapter 11) and the development of a rights-based approach to protection and empowerment. This chapter focuses on the ways in which contemporary nursing practice supports people with dementia in making decisions but also supports their family carers who increasingly may encounter difficult decisions. Some ‘big’ decisions are addressed in the context of the law and evidence-based practice; the chapter also addresses decisions in the context of caring relationships.

Supporting Decision Making in Dementia

Decisions There is no shortage of advice about some decisions and much of it is very helpful in presenting accurate information that draws on evidence, practice wisdom and people’s experiences. The Alzheimer’s Society’s factsheet entitled Making Decisions and Managing Difficult Situations (Alzheimer’s Society 2016a) is a useful resource for professionals and for individuals. Alzheimer’s Scotland (2012) has also produced a resource guide in the context of Scotland’s legal system. Advice for the Northern Ireland context is available from Citizens Advice (n.d.).

Dementia decisions – truth and lies In this section we debate some of the ways in which the symptoms of dementia complicate decision making by focusing on one aspect of care relationships in action. In Chapter 1, the case study of George refers to him experiencing ‘episodes of visual hallucinations’. He might decide that he needs to defend himself – experiencing what the Mental Health Foundation (MHF) (2016) calls ‘different realities and beliefs’. The MHF estimates that about half of people living with dementia have different realities and beliefs and its report describes how family carers often face troubling decisions when a person is living with a reality that increases in extent or intensity as the dementia accelerates. Should nurses and carers agree or contradict with the person living with dementia? What should either of them say to the person with dementia? And what should nurses say to a distressed family carer in such a situation? One area of concern where this plays out for family carers and practitioners is that of deciding to ‘tell the truth’ or otherwise. The MHF inquiry into this subject (Mental Health Foundation 2016) found many carers and practitioners (including nurses) often lie to a person with dementia and consider this justifiable or at least expedient. The inquiry found that the most common example of using an untruth was not telling a person with dementia that their loved one was dead when they were asking for them. Such situations often seem to arise when someone living with dementia indicates (verbally or by their behaviour) that they are living in a reality and with a truth that is different from their carer’s – the MHF report gives another example of a person with dementia saying that their carer daughter has stolen their shoes. The MHF found that in response to such an example (where the shoes had not been stolen), carers and practitioners generally take one of five approaches: they may decide to tell their whole truth, reframe what is being said, distract the person with dementia, go along with the idea that the shoes are stolen, or lie to

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the person living with dementia, all with the best of intentions. These can be seen as being placed along a spectrum – but that is not to say that one option is always right and others wrong. Making an apology for stealing the shoes, for example, might seem to be telling a lie in the eyes of the carer. Insisting that the shoes have not been stolen is the truth but could compound distress. Distraction – which might involve ‘finding’ the shoes – could get over confrontation yet still be dissembling; and reframing might help think about the meaning of ‘loss’ in the life of the person with dementia but still leave the question of what to do up in the air. The whole ‘shoe situation’ may become a complicated moral and practical dilemma. Overall the MHF expert panel concludes that a workable, ethical and defensible approach would be that: one should always start from a point as close to whole-truth-telling as possible, and only when this is causing a person with dementia unnecessary distress, move on to a response that includes an untruth. (2016, p.131)

The MHF panel noted that such situations could get further complicated if the relationships included paid care workers or other practitioners as well as family carers.

STOP AND REFLECT How would you respond to an older woman with dementia who is insistent that her (dead) mother is coming to collect her from her carer daughter’s house to take her home? This is causing frustration and distress to the carer daughter. What would you advise the daughter to do? Would this advice be the same as you would give to her home care worker?

You may find it helpful to provide the daughter and the care worker with Alzheimer’s Society (2016a) Factsheet mentioned above; this says: If the person says something that you know is not true or possible, try to see past what they are saying, and instead look at the emotions behind it. For example, if they are asking for their mother, who is no longer alive, it may be that they are feeling scared or need comforting. By meeting the needs behind what is being said, it can be possible to offer emotional support while avoiding a direct confrontation over the facts. (Alzheimer’s Society 2016a, p.9)

Supporting Decision Making in Dementia

Decision making – the law and practice Driving and dementia In the developed world, decisions about a person with dementia continuing to drive a car are often described as fraught. A systematic review (Rapoport et al. 2017) found that decisions about older people’s ability to drive were not easy – whether they had dementia or not. In respect of people with dementia, there is increasing interest in developing decision aids for doctors to help make judgements that are fair, transparent and more accurate (Cameron et al. 2017). While one in three people with dementia still drives in the UK, as the condition progresses the person will need to give up driving for their own sake and public safety. The decision may be their own, but for some people it may be very unwelcome and carers can worry about possible accidents and danger to others. The nurse’s duties are several – they may need to sensitively reinforce information that will have been given at diagnosis that if a person living with dementia wants to continue to drive they must, by law, inform the Driver and Vehicle Licensing Agency (DVLA) in Great Britain (or Driver and Vehicle Agency (DVA) in Northern Ireland). Alzheimer’s Society (2016b) also notes that, additionally, the person should inform their car insurance company of the diagnosis (or the policy may become invalid); it is illegal to drive without third-party cover. Again such information may have been difficult to take in at the time of diagnosis or may not have been offered. It is more difficult, of course, if someone refuses to tell the DVLA/ DVA and decides to continue to drive, and family carers may feel very distressed in such circumstances. Some make efforts to stop the person living with dementia driving but this can lead to confrontation or fractious deceit (e.g. getting rid of the car; making it immobile; hiding the keys). Nurses may advise carers to talk to the person with dementia’s GP or talk themselves to the person’s GP if the carer wishes, since the GP is able to inform the DVLA/DVA without the person with dementia’s consent, following guidelines issued by the General Medical Council. Both a nurse or a GP can help the situation by explaining how dementia affects driving and so emphasising that it is not the person who is ‘incapable’ but the condition that is affecting this part of their ability. For some people with dementia there may be complications from other health problems that combine to make driving more risky.

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STOP AND REFLECT Useful resources include Alzheimer’s Society Factsheet 439 (Alzheimer’s Society 2016b), Driving and Dementia, which lists some of the practical benefits and not just the problems of stopping driving; and Booklet 1504, Driving, written for people with dementia, which lists some useful information. The contents of these are informative to professionals as well as lay readers, and their accuracy and accessibility have been quality assured. As not everyone has internet access a hard copy of such information may be needed and will be valuable.

Mental Capacity Act (2005) The five principles of the Mental Capacity Act (2005) (applicable in England and Wales) are likely to have been covered in nurse training and professional updating. They are a useful framework for decision making and are summarised here: 1. Every adult has the right to make decisions for themselves. It must be assumed that they are able to make their own decisions, unless it has been shown otherwise. 2. Every adult has the right to be supported to make their own decisions. All reasonable help and support should be given to assist a person to make their own decisions and communicate those decisions, before it can be assumed that they have lost capacity. 3. Every adult has the right to make decisions that may appear to be unwise or strange to others. 4. If a person lacks capacity, any decisions taken on their behalf must be in their best interests. (The Act provides a checklist that all decision makers must work through when deciding what is in the best interests of the person who lacks capacity.) 5. If a person lacks capacity, any decisions taken on their behalf must be the option least restrictive to their rights and freedoms. It is hard to remember the previous legal situation prior to 2007 as things have moved on so, but aspects of it apparently linger on: notions that there are special rights for ‘next of kin’ or ‘blood relatives’ (these terms have no legal meaning during a person’s lifetime), or that some decisions must be reserved to medical practitioners (only if they are closest to the decision and are complex), or that advance decisions to refuse treatment, even if

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properly legally executed, can be overridden if a professional thinks that they are not in the person’s best interests (it must be understood that these are legal documents if they are valid and applicable). Phrases such as ‘next of kin’ linger even in the best-run health settings but they confuse matters and might be easily replaced by consulting family or friends. They have also excluded family carers who do not have legal status such as same-sex partners or cohabitees. While the principles of the Act need to be borne in mind what needs to be documented in practice is the outcome of the 2-stage test of capacity: Part 1: Is there an impairment of, or disturbance in, the functioning of the person’s mind or brain? If so, Part 2: Is the impairment or disturbance sufficient that the person lacks the capacity to make that particular decision? For nurses this is essential both in their own practice and in talking with other care providers about the legality of their practice. Particular questions may arise, for example, about whether a person living in a care home can consent to having personal care, and what to do if they are resistive. The MCA helps in thinking through what is legal and how to protect the person living with dementia and their rights, which include the right to care and to dignity. As outlined in this book’s chapter on safeguarding (Chapter 11), the Office of the Public Guardian (OPG) ‘protects people in England and Wales who may not have the mental capacity to make certain decisions for themselves, such as about their health and finance’. Two main roles help with this aim, and these have decision-making powers, namely attorneys (people appointed by an individual to assist in making their decisions, or to make decisions on that individual’s behalf – called Lasting Power of Attorney (LPA)) and deputies (people appointed by the Court of Protection to make decisions on the behalf of an individual lacking capacity if there is no LPA). As with other professionals, nurses may be asked about the advantages and disadvantages of such arrangements, and also their practicalities (for example, how to get the forms and what it costs). The OPG has useful, accessible information, as well as Alzheimer’s Society (such information is in written form and as an audio recording (Alzheimer’s Society 2016c)). In Northern Ireland, laws governing Powers of Attorney are different (Enduring Power of Attorney and Controllership). While advance care planning may be a time to discuss such arrangements, this might be undertaken when is too late to set in place an LPA (see Chapter 14). However, it seems that such arrangements are getting more common among older people since in 2015–16, 726,000 people drew up such arrangements according to the Office

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for National Statistics (ONS), a rise of over a quarter from the previous year (Hughes 2018). Increasingly nurses will encounter patients who have made such arrangements or who have decided not to do this in full understanding of the implications of doing so.

STOP AND REFLECT If your case records were to be audited would the reader find evidence that you had undertaken the 2-stage test and recorded its results?

An accessible video clip on advance decision making by Professor Keith Brown is a useful refresher: see www.scie.org.uk/mca-directory/ advanceplanninganddecisionmaking/lastingpowersofattorney/why-youneed-a-lpa.asp.

Making decisions on another’s behalf In a study of family carers supporting a person living with dementia at home, Livingston et al. (2010) found five main problematic areas of decision making: • Accessing dementia-related health and social services • Moves to care homes • Legal-financial matters • Non-dementia-related healthcare • Making plans for the person with dementia if the carer becomes too ill to care for them. While it was possible for the family carers to make proxy decisions, this was not easy especially if the person living with dementia was actively resistant. Even when they had taken over almost all decision making, families devised certain strategies to gain agreement, in as far as they could, to ensure that their relative living with dementia still retained some dignity. What seemed to help carers was introducing change slowly; organising legal changes for themselves as well as the person with dementia (Lasting Power of Attorney, for example, or changes to financial authorisations); involving someone else – such as a professional to persuade the person with dementia to accept assistance or services; and ‘emphasising that services optimised, not impeded, independence’ (Livingston et al. 2010).

Supporting Decision Making in Dementia

End-of-life decisions were described as particularly difficult for carers in this study. What they reported as helpful was knowledge of the person with dementia’s previous views, clear information about the likely progress of the condition, and support from other members of their family (see Chapter 14). Conflict among family members about decisions at end of life but also at other times was very difficult for the main carer. Livingston et al. (2010) conclude that professionals should deliver information in chunks, as carers value information but it can feel overwhelming if given at diagnosis. Carers also reported that professionals’ views and advice reduced their own guilt, which is an important outcome in itself. In a Northern Ireland study Stevenson, McDowell and Taylor (2018) found that family carers are often involved in decisions concerning the health and social care needs of their relatives living with dementia. In these discussions carers often highlight everyday risks which they have discussed with the person living with dementia and professionals. However, some risks that present most worry to family carers, namely driving, falls, financial risks (of exploitation), getting lost and (mis)using electrical appliances, are not necessarily evident to professionals. Carers are alert to possible danger, harm and vulnerability and this influences their contribution to decision making. For professionals it may be hard to ‘downplay’ these risks, by asking carers to think if these risks are likely or just possible. Professionals may also have a role in directly influencing the decisions of people with dementia, which the research literature includes in new ideas about the concept of shared decision making. In a recent longitudinal study from the Netherlands Groen-van de Ven, Smits and de Graaff (2017) concluded that shared decision making with people with dementia is possible but that it requires an adapted process of decision making. Using data from interviews with people living with dementia that sought their views about going to a day care centre, people’s initial preferences were based just on information alone and many did not want to attend. However, their views often changed when they actually tried day care and they decided to continue attending. The research team concluded that professionals should focus less on eliciting initial preferences and more on helping people to gain experiences to inform their decision making. This is useful evidence of how help in the form of services can be made more acceptable and how decisions might need to be based not just on information about a service but on actual experience of it. It may not just apply to day care but could also apply to making home-based support more acceptable.

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CASE STUDY: JACKIE Community nurse Pamela is working with Jackie whose husband, Bernard, is adamant that his wife will not accept any help in the home. The couple have turned down offers of help with housework that would be arranged and paid for by their son. Bernard is feeling stressed by not keeping up with household tasks, especially to the standard that his wife would have wanted. A family conference discusses the matter and Pamela takes a lead in suggesting a ‘trial period’ – emphasising that this is her professional view. She had not usually taken such an assertive role with this family but she can see that care may break down if something is not done. Possible scenarios are discussed: what to do if the cleaner is not welcomed; what to do if Jackie gets upset; what to do if she accuses her husband of replacing her. In this way the situation is not just one decision but many, and discussions do not get polarised. The best interests of Jackie are respected.

Moving to a care home A final area of decision making concerns moving to a care home. Again, this can be an emotive subject. Promises may have been made never to ‘send mother to a home’, or expectations of inheritance may affect family decision making. There may be ideas that care homes are abusive or that certain groups will not be welcome. Nurses can listen to fears and help mediate between conflicting views or principles. Cole, Samsi and Manthorpe’s (2018) review of qualitative studies about the factors that seemed to influence the timing of a move to a care home covered the following areas: (1) what happened before the move; (2) planning for the move; (3) weighing up the decision; (4) lack of support; (5) drivers of the decision; (6) emotional significance of the move; (7) continued reflection on the decision. Establishing the right ‘time’ of a move was largely absent from much of the literature, although inferences were made. Overall, the decision-making process appeared to be cyclic, with family carers constantly re-evaluating when the time might be to make the move, with some continuing to reflect on whether this had been the ‘right’ time even after the move had been made. This suggests a need for carer support after caring has ended when community-based practitioners no longer visit the home of the person with dementia who has moved to long-term care. Few studies have been able to talk to people with dementia about such moves and how they were involved in the decision. This means that practice wisdom and experience will have to be the guide, especially

Supporting Decision Making in Dementia

drawing on the experiences of care home nurses and managers. Again the MCA can provide a framework for decision making here – emphasising the importance of familiarity with the law and its Code of Practice (Department for Constitutional Affairs 2007).

Conclusion Nurses have important roles to play in decision making – as skilled practitioners with valued sources of advice, information and evidence at their fingertips. They work in teams and can discuss dilemmas in supervision. No one can be an expert in all areas of decision making but sources of help are widely accessible – not just factual but help that is emotionally supportive. Nurses’ own ethical framework, their team supports and their professional values place them in good positions to assist with decision making and to empower people living with dementia and their family carers.

STOP AND REFLECT Below are some examples of practice challenges: Think about the different reality held by a person with dementia who thinks (erroneously) that you are their daughter – how might this influence your decision making? Imagine you are making a Lasting Power of Attorney – who would you want to make decisions for you, about what and why? (If you have done this, what guided your decisions?) What ways do you find easiest to communicate with a person with severe dementia about different options – are there new skills or approaches that you would like to develop?

References Alzheimer’s Scotland (2012) Dementia: Making Decisions. Edinburgh: Alzheimer’s Scotland. www.alzscot.org/assets/0000/5331/Dementia-Making-Decisions.pdf (Accessed 30 April 2018). Alzheimer’s Society (2016a) Making Decisions and Managing Difficult Situations. London: Alzheimer’s Society. www.alzheimers.org.uk/download/downloads/id/1929/factsheet_ making_decisions_and_managing_difficult_situations.pdf (Accessed 30 April 2018). Alzheimer’s Society (2016b) Driving and Dementia. London: Alzheimer’s Society. www. alzheimers.org.uk/download/downloads/id/3430/factsheet_driving_and_dementia. pdf (Accessed 30 April 2018).

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Alzheimer’s Society (2016c) Lasting Power of Attorney. London: Alzheimer’s Society. www.alzheimers.org.uk/download/downloads/id/2428/factsheet_lasting_power_of_ attorney.pdf (Accessed 30 April 2018). Cameron, D.H., Zucchero Sarracini, C., Rozmovits, L., Naglie, G., Herrmann, N., Molnar, F., et al. (2017) Development of a decision-making tool for reporting drivers with mild dementia and mild cognitive impairment to transportation administrators. International Psychogeriatrics. 29(9): 1551–1563. Citizens Advice Northern Ireland (n.d.) Managing Affairs for Someone Else. Belfast: Citizens Advice. www.citizensadvice.org.uk/nireland/family/looking-after-people/managingaffairs-for-someone-else-ni (Accessed 30 April 2018). Cole, L., Samsi, K. and Manthorpe, J. (2018) Is there an ‘optimal time’ to move to a care home for a person with dementia? A systematic review of the literature. International Psychogeriatrics. https://doi.org/10.1017/S1041610218000364. Department for Constitutional Affairs (2007) Mental Capacity Act 2005 Code of Practice. London: DCA. https://assets.publishing.service.gov.uk/government/uploads/system/ uploads/attachment_data/file/497253/Mental-capacity-act-code-of-practice.pdf (Accessed 30 April 2018). Groen-van de Ven, L., Smits, C. and de Graaff, F. (2017) Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare. BMJ Open. 7: e018337. doi: 10.1136/ bmjopen-2017-018337. Hughes, K. (2018) Lasting power of attorney: record numbers entrusting money to others. Almost 750,000 people now consigning their money, legal and healthcare affairs to friends and family every year. The Independent, 17 February. www.independent.co.uk/ money/spend-save/lasting-power-of-attorney-money-legal-affairs-family-friendssavings-investments-lpa-a8210811.html (Accessed 30 April 2018). Livingston, G., Leavey, G., Manela, M., Livingston, D., Greta Rait, G., Sampson, E., et al. (2010) Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. British Medical Journal. 341: c4184. Mental Health Foundation (2016) What is Truth? An Inquiry About Truth and Lying in Dementia Care. London: Joseph Rowntree Foundation. www.mentalhealth.org.uk/ publications/what-truth-inquiry-about-truth-and-lying-dementia-care (Accessed 6 December 2018). Mental Health Foundation (n.d.) Mental Capacity. London: Mental Health Foundation. www.mentalhealth.org.uk/a-to-z/m/mental-capacity (Accessed 30 April 2018). Nuffield Council on Bioethics (2009) Dementia: Ethical Issues. London: Nuffield Council on Bioethics. http://nuffieldbioethics.org/wp-content/uploads/2014/07/Dementia-reportOct-09.pdf (Accessed 6 December 2018). Rapoport, M.J., Cameron, D.H., Sanford, S., Naglie, G. and Canadian Consortium on Neurodegeneration in Aging Driving and Dementia Team (2017) A systematic review of intervention approaches for driving cessation in older adults. International Journal of Geriatric Psychiatry. 32(5): 484–491. Stevenson, M., McDowell, M.E. and Taylor, B.J. (2018) Concepts for communication about risk in dementia care: a review of the literature. Dementia (London). 17(3): 359–390. doi: 10.1177/1471301216647542. Epub 2016, 13 May.

Chapter 14

Advance Care Planning in Dementia Karen Harrison Dening

Learning objectives By the end of this chapter you will: • Understand advance care planning (ACP) and its context in dementia. • Know the possible barriers and enablers to ACP in dementia. • Be able to initiate a conversation about ACP. • Understand some of the issues for family carers in supporting ACP for a person with dementia.

Introduction The Department of Health emphasised the central importance of advance care planning (ACP) in the End-of-Life Care Strategy (Department of Health 2008) by stating that everyone affected by life-limiting or lifethreatening illness should be offered ACP. ACP differs from general care planning in that it is usually used in the context of progressive illness and anticipated deterioration. It has been defined as a voluntary process of discussing, recording and reviewing wishes, values and preferences for future care and treatment held between an individual and their care provider(s) (Henry and Seymour 2012; Froggatt et al. 2008) that takes effect when the person loses capacity (HMSO 2005). If they wish, a person can set, on record, choices about their care and treatment and/or an advance decision to refuse a treatment in specific circumstances, so that these can be referred to by those responsible for their care or treatment (whether professional staff or family carers) in the event that they lose capacity to decide once their illness progresses. 181

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ACP is a more established process in other diseases, such as cancer. However, in dementia ACP has a less certain history because, although dementia is also a progressive and life-limiting illness it additionally has the complication that the mental capacity to make the decisions needed for ACPs can be lost fairly early on in the illness. There is a growing literature on ACP and its application in dementia in the UK, highlighting that its uptake is small and patchy owing to several factors which will be explored later in this chapter. Under the terms of the Mental Capacity Act (2005), formalised outcomes of advance care planning might include one or more of the following: 1. Advance statements to inform subsequent best-interests decisions 2. Advance decisions to refuse treatment, which are legally binding if valid and applicable to the circumstances at hand 3. Appointment of Lasting Powers of Attorney (health and welfare and/or property and affairs). In comparison with other countries, research in the UK on the development of ACP is at an earlier stage (Froggatt et al. 2009). There is also the distinct healthcare context of the National Health Service which largely provides care free at the point of access. Previous ACP research from the UK has found that earlier discussions in a life-limiting illness can help to reduce anxiety about death (Pemberston, Storey and Howard 2003; Storey and Betteley 2011) and lead to an increase in feelings of autonomy (Bisson et al. 2009), maintenance of control (Singer et al. 1998), patient satisfaction (Tierney et al. 2001), and a range of improved outcomes for family carers, such as reduced depression, stress and anxiety (Detering et al. 2010).

Barriers to ACP in dementia People with a life-limiting illness, especially dementia, are not routinely consulted about their wishes and preferences for future care. There are several potential barriers that have been identified that may contribute to a general reluctance to enter into advance care planning (Berrio and Levesque 1996) (Box 14.1).

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Box 14.1: Barriers to completing an ACP • Procrastination, or waiting to do it later • Dependence on family for decision making • Lack of knowledge about ACP • Difficulty of talking about the subject • Waiting for the healthcare professional to initiate a discussion by the patient • Waiting for the patient to initiate discussion by the health professional • Believing a lawyer is needed to fill out the forms • Fatalism, or acceptance of the ‘will of God’ • Fear of ‘signing my life away’ • Fear of not being treated.

However, in dementia, there are several additional barriers to initiating ACP (Box 14.2). Box 14.2: Additional barriers to completing an ACP in dementia • Acknowledgement that dementia is a terminal/life-limiting illness • The potential for loss of decision-making capacity early on in the disease trajectory • Care professionals’ lack of confidence in starting discussions • Care professionals’ lack of knowledge about the course of dementia, especially the advanced stages • Lack of a consistent care manager to facilitate the ACP as the illness progresses.

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Enablers for ACP in dementia The End-of-Life Care Strategy (Department of Health 2008) stated that all people should be offered ACP to explore their wishes and preferences for end-of-life care, and that these should be respected and acted upon wherever possible. The National Dementia Strategy (Department of Health 2009) stated that people with dementia and their carers should be involved in planning end-of-life care. But ACP for people with dementia in reality is still not a mainstream intervention (Harrison Dening, Jones and Sampson 2011, 2012). The European Association for Palliative Care’s white paper made 57 recommendations for effective palliative care in dementia (van der Steen et al. 2013); Domain 3 focuses on ACP (see Box 14.3). Box 14.3: Domain 3 – Setting care goals and advance planning (van der Steen et al. 2013) Prioritising of explicit global care goals helps guide care and evaluate its appropriateness. Through anticipating progression of the disease, advance care planning is proactive. This implies it should start as soon as the diagnosis is made, when the patient can still be actively involved and patient preferences, values, needs and beliefs can be elicited. Formats of advance care plans may vary in terms of preferences, the amount of detail required and what is available in the specific setting for the individual. In mild dementia, people need support in planning for the future. In more severe dementia and when death approaches, the patient’s best interest may be increasingly served with a primary goal of maximisation of comfort. Advance care planning is a process, and plans should be revisited with patient and family on a regular basis and following any significant change in health condition. Care plans should be documented and stored in a way that permits access to all disciplines involved at any stage and through transfers.

Personhood, autonomy and dementia To understand ACP in the context of dementia it is essential to understand what it is to be a person and have autonomy in respect of the decision making required to undertake it (see Chapter 6). Kitwood (1997) stated that personhood is a status that is bestowed upon one human being by another (p.34) and an outcome of a relationship between two or more

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people that relies on the action of the bestowal of personhood, one to another. However, Nolan et al. (2002) felt that Kitwood’s view of personcentred care fails to capture the interdependencies and reciprocities that underpin caring relationships, especially across those of family members. In practice, family carers can often fear not only what the future holds for the person with dementia but also their own future health. In a poll Alzheimer’s Society (2016) found that those over the age of 55 feared dementia (58 per cent) more than any other condition, including cancer (47 per cent), often keenly felt by families of a person with dementia. However, biomedical ethics does not specifically address the subject of personhood or non-personhood in dementia but appears to prefer to use terms such as competency and non-competency (Beauchamp and Childress 2013). Adopting a solely person-centred approach to ACP in dementia care may cause conflict with the wishes, preferences and perspectives of a family carer and vice versa. Therefore perhaps a focus should be more appropriately on relationship-centred care, including the whole family, where the interests of each are explored. Autonomy is an important concept in decision making and is demonstrated by one who is able to decide on a course of action; it is the central premise of the concept of informed consent (Beauchamp and Childress 2013). Locke (Post 2006) states that autonomy depends upon consciousness: that is to say, we are conscious of our past and future thoughts and actions in the same way as we are conscious of our present thoughts and actions. Dementia perhaps confounds this because, as dementia progresses, the ability to consider future thoughts and actions becomes compromised, affecting decision-making abilities (Fratiglioni and Qiu 2013; Demarco and Lipuma 2016). It is important never to assume that if a person with dementia is unable to communicate in a conventional way, they no longer have the capacity to understand and make decisions.

When is the best time to initiate advance care planning in dementia? There is a lot of debate as to when the best time is to offer ACP to people with dementia; many professionals feel that entering into discussions about ACP for end-of-life care is both insensitive and too soon within the diagnostic process. However, in dementia, end-of-life planning needs to take place early, while the person has sufficient mental capacity to consider their preferences and make decisions, consistent with the principles set out in the Mental Capacity Act (2005).

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Table 14.1: Milestones which can act as triggers to engage in ACP Transition points

Healthcare events

Time of diagnosis of dementia

Deterioration or decline in the person’s condition

When undertaking a Lasting Power of Attorney for finance (consider LPA for health and welfare)

Person presenting with complex symptoms

Care plan/package review for community home care

Person presenting with difficulty with nutrition and hydration

Changes of care setting; transfer to acute care or residential care setting etc.

Decreasing response to antibiotic treatment

Changes in family carer situation (illness, death etc.)

When the question of a need for further medical investigations of treatments arise Discussions about attempting cardiopulmonary resuscitation Changes to the health status of the family carer

Source: Adapted from the Irish Hospice Foundation (2016)

ACP is fundamental for everyone living with dementia as it: 1. Provides the basis for delivering person-centred end-of-life care in line with the wishes and preferences of the individual 2. Enables a record of the individual’s wishes and preferences, which guides the person’s care when they have lost mental capacity and provides crucial support for families and carers 3. Offers ongoing vital opportunities to enhance the choice and control an individual has over their treatment and care needs/ preferences throughout their care journey.

Communication, dementia and advance care planning Good, effective communication is essential in enabling advance care planning for people with dementia. Communication is a two-way process but in people with dementia their ability to communicate with others and to receive their communication becomes increasingly difficult as the condition progresses; however, it is essential to assume the person has capacity to make a decision, with the onus on the professional carer to prove otherwise in any given situation. Where individuals lack capacity, a fundamental consideration is their past wishes and preferences. If these are not recorded or known, relatives are asked about what the person

Advance Care Planning in Dementia

would or would not have wanted. If there is no Lasting Power of Attorney, the closest relative must be consulted and his or her views only disregarded for a very good reason, such as if they do not seem to be in the patient’s best interest or are impossible. There are several ‘best practice’ points to consider when attempting ACP discussions with a person who has a diagnosis of dementia (see Box 14.4). Box 14.4: Guidance on communication with people with dementia 1. It may take a person with dementia longer to process what you are saying to them and to think of their response – give the person sufficient time to respond. 2. To ensure a person-centred approach try to find out their values and preferences as an opening to ACP development: what is important to them; their history, likes, strengths, beliefs etc. 3. Face the person directly and make good eye contact; ensure you give them every opportunity to understand you are focused on them. 4. They may, or may not, wish their family carer/member to be present; ensure you ask. 5. Use short, clear sentences that are free of clinical jargon; a useful resource to guide you in what to ask, and how, can be found in Difficult Conversations in Dementia (see ‘Further reading and resources’ section). 6. Use language and words that are familiar to them. 7. Ensure the space chosen to have the conversation(s) is quiet and calm. A person’s own, familiar surroundings is best. 8. Be aware and maximise your non-verbal communication: tone of voice, facial expressions, hand gestures etc. 9. Use active listening and be fully attentive to what the person is saying and what their body language and expressions are telling you. 10. Use other ways to communicate if helpful: written word, pictures etc.

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11. Focus on one question at a time. Mirror what they say (repeat back to them) for affirmation. For example: ‘…so you say having your family around you at the end of your life is the most important thing to you…?’ 12. Use the AFIRM approach (HSE 2016) to guide your conversations.

AFIRM (HSE 2016) is an acronym which provides professionals with a framework to guide conversations and use these as opportunities to pick up on any underlying apprehensions or queries the person with dementia (and/or their family member) may have, which can be used to initiate discussions about ACP.

What does the AFIRM acronym stand for? Acknowledge the person’s concern or questions; find out what the person knows about the condition; immediate concern(s) addressed by providing adequate information within the scope of your work; respond to subsequent questions by providing accurate information within the scope of your work; and a meeting suggested to discuss their concerns with significant people, such as a clinician, care coordinator, GP, family member(s), legal representative etc.

CASE STUDY: MARJORIE Your current student placement is with the local memory assessment service; you are working alongside a senior nurse who is supporting Marjorie, recently diagnosed with dementia, to support her in considering the implications of her diagnosis. Marjorie is concerned about what her future holds as both her parents died very young, and she never met her grandparents, so she has had no family experience of dementia. She is concerned that she will lose all control over her life.

How you might use the AFIRM framework to guide your conversation:

Advance Care Planning in Dementia

A

In acknowledging Marjorie’s distress you might say: ‘The diagnosis of dementia has clearly distressed you.’

F

‘What do you understand about the diagnosis?’

I

‘That I will lose control of what happens to me as the disease progresses.’

R

‘What is your biggest worry for the future?’

‘Let me explain what changes you might experience as your illness progresses.’ ‘We can help you to plan ahead to try and ensure that your wishes and preferences are well recorded, to ensure your future care is in line with these.’

M

‘This is a good time to start to identify what is important to you and plan a meeting with the people who are important to you: your family, close friends, GP, etc.’ ‘Would you like me to arrange a meeting?’

Families and decision making Making decisions about end-of-life care and treatment on behalf of a family member with dementia is not straightforward and can at times be extremely difficult. It will often involve complex issues around whether to treat or whether to withhold treatment. There may be several treatment options to choose from, and the context of the decision will also be important (e.g. in a crisis as compared to states of chronic ill-health). Overlaid on this are the perspectives, preferences and wishes for future care of the person for whom decisions are to be made. For clinicians, it will often be difficult to know whether family decision making and treatment choices are consistent with the wishes of the family member with dementia, if at all ever expressed. However, professionals often assume family carers already know what any such decisions would have been had the person with dementia not lost capacity. Thus, carers find themselves increasingly in a position whereby they are called upon to inform, or directly make, decisions on behalf of the person with dementia. Successful decision making for a family affected by dementia involves: • Information and knowledge of the prognosis of dementia • Health and care issues that might present, as the disease progresses

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• Knowledge of services and options available • How to care for themselves and their own needs.

Balancing the wishes and preferences of the person with dementia and those of the carer ACP that promotes the wishes and preferences of the person with dementia may, at times, mean a balance to also consider the wishes and preferences of the carer. It can be a challenge to support this balance of interests and needs in end-of-life care. We have to strive to make the wishes and preferences of the person with dementia influence delivery of care when they may well become at odds with what is in the best interests of the carer, or vice versa. Admiral Nurses (specialist dementia nurses) are skilled at care management for families affected by dementia, and support a balancing of needs (Webb and Harrison Dening 2016). Family carers often experience increasing demands in making decisions as the dementia progresses. Not surprisingly, carers often find decision making difficult and studies have reported on certain emotional and practical issues, including: • Difficulties in deciding what to do about day-to-day care (Vig et al. 2007) • Distress in making health-related decisions • Having insufficient information about any possible alternatives and their effects (Hirschman, Kapo and Karlawish 2006) • Negative emotional effects, such as stress, guilt and self-doubt (Wendler and Rid 2011). But do carer decisions truly reflect those that the person with dementia would have made, if they had had the opportunity to develop an ACP? In a cross-sectional study Harrison Dening et al. (2017) examined the accuracy of family carers in predicting the wishes and preferences for end-of-life care and treatments of the person with dementia for whom they care. They found that carers’ ability to accurately predict the person with dementia’s treatment preferences (in the absence of an ACP) was no better than chance (lower that 35 per cent accuracy), thus questioning the professional reliance on family members in decision making. Livingston et al. (2010) conclude that the most difficult decisions families have to make are those for end-of-life care made more difficult in the presence

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of family disharmony. In the absence of family cohesion the role of the surrogate decision maker becomes isolated and even more difficult.

Summary Dementia is a progressive, irreversible, neurodegenerative condition that greatly reduces life, with one in three of the population expected to die with or from dementia. People with dementia (and their families) are much in need of palliative care services, especially through ACP and support with decision making in preparation for end of life. The process of ACP in dementia is far from straightforward as dementia progresses, with the ability to consider the future becoming compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position whereby they are called on to inform, or directly make, decisions on behalf of the person with dementia. It is often assumed they know what the person with dementia’s decisions might have been when capacity is lost even though wishes and preferences have not been articulated. We need to have greater confidence to initiate ACP conversations to directly involve the person with dementia themselves if we are to ensure their wishes and preferences are realised at a time where they have lost capacity to make these themselves in real time. Of equal importance is for professionals to support family carers to make decisions on behalf of the person with dementia to enable them to effectively navigate the various transition points along the trajectory of dementia, such as seeking a diagnosis, access to support services, admission to a care home and end-of-life care options.

STOP AND REFLECT Download a copy of a Lasting Power of Attorney – Health and Welfare and consider how you might complete one with your own wishes and preferences in mind (see www.gov.uk/lasting-powerattorney-duties/health-welfare). Now think about what wishes and preferences you have considered for yourself at end of life and which of these may affect or be dependent upon family members around you, for example, preferred place of care or death. Think of another situation where you might apply the AFIRM framework. Write the stages down as they relate to the case you

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are thinking of; this will help you to think about the issues and your responses.

References Alzheimer’s Society (2016) Over half of people fear dementia diagnosis: 62 per cent think it means ‘life is over’. www.alzheimers.org.uk/news/article/64/over_half_of_people_ fear_dementia_diagnosis_62_per_cent_think_it_means_life_is_over (Accessed 24 Dec 2017). Beauchamp, T.L. and Childress, J.F. (2013) Principles of Medical Ethics. Oxford: Oxford University Press. Berrio, M. and Levesque, M. (1996) Advance directives: most patients don’t have one; do yours? American Journal of Nursing. 8: 25–28. Bisson, J.I., Hampton, V., Rosser, A. and Holm, S. (2009) Developing a care pathway for advance decisions and powers of attorney: qualitative study. British Journal of Psychiatry. 194: 55–61. Demarco, J.P. and Lipuma, S.H. (2016) Dementia, advance directives, and discontinuity of personality. Cambridge Quarterly and Healthcare Ethics. 25(4): 674–685. Department of Health (2008) End-of-Life Care Strategy. London: Department of Health. Department of Health (2009) Living Well with Dementia: A National Dementia Strategy. London: Department of Health. Detering, K.M., Hancock, A.D., Reade, M.C. and Silvester, W. (2010) The impact of advance care planning on end-of-life care in elderly patients: randomised control trial. British Medical Journal, 340: c1345. http://dx.doi.org/10.1136/bmj.c1345. Fratiglioni, L. and Qiu, C. (2013) Epidemiology of dementia. In T. Dening and A. Thomas (eds) Oxford Textbook of Old Age Psychiatry. Second edition. Oxford: Oxford University Press. Froggatt, K., Vaughn, S., Bernard, C. and Wild, D. (2008) Advance Planning in Care Homes for Older People: A Survey of Current Practice. Lancaster: University of Lancaster: International Observatory on End of Life. Froggatt, K., Vaughn, S., Bernard, C. and Wild, D. (2009) Advance care planning in care homes for older people: an English perspective. Palliative Medicine. 23(4): 332–338. Harrison Dening, K., Jones, L. and Sampson, E.L. (2011) Advance care planning for people with dementia: a review. International Psychogeriatrics. 23(10): 1535–1551. Harrison Dening, K., Jones, L. and Sampson, E.L. (2012) Preferences for end-of-life care: a nominal group study of people with dementia and their family carers. Palliative Medicine. 27(5): 409–417. Harrison Dening, K., King, M., Jones, L. and Sampson, E.L. (2017) Healthcare decisionmaking: past, present and future, in light of a diagnosis of dementia. International Journal of Palliative Nursing. 23(1): 4–11. Henry, C. and Seymour, J. (2012) Advance Care Planning: A Guide for Health and Social Care Staff. London: Department of Health, End of Life Care Programme. Hirschman, K.B., Kapo, J.M. and Karlawish, J.H.T. (2006) Why doesn’t a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? American Journal of Geriatric Psychiatry. 14 (8): 659–667. HMSO (2005) Mental Capacity Act 2005. www.legislation.gov.uk/ukpga/2005/9/contents (Accessed 24 Dec 2017). HSE (2016) The National Dementia Training Programme. www.hse.ie/eng/about/Who/ ONMSD/eductraining/dementiaeducation (Accessed 24 Dec 2017).

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Irish Hospice Foundation (2016) Dementia Guidance Document 2: Advance care planning and advance healthcare directives with a person with dementia. Dublin: Irish Hospice Foundation. Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press. Livingston, G., Leavey, G., Manela, M., Livingston, D., Rait, G., Sampson, E.L. et al. (2010) Making decisions for people with dementia who lack capacity: qualitative study of family carers in the UK. British Medical Journal. 341: c4184. doi: 10.1136/bmj.c4184. Nolan, M.R., Ryan, T., Enderby, P. and Reid, D. (2002) Towards a more inclusive vision of dementia care practice. International Journal of Social Research and Practice. 1: 193–211. Pemberston, C., Storey, L. and Howard, A. (2003) The Preferred Place of Care document: an opportunity for communication. International Journal of Palliative Nursing. 9(10): 439–441. Post, S. (2006) Respectare: Moral Respect for the Lives of the Deeply Forgetful. In J. Hughes., S. Louw and S.R. Sabat. (eds) Dementia: Mind, Meaning and the Person. Oxford: Oxford University Press. Singer, P.A., Martin, D.K., Lavery, J.V., Thiel, E.C., Kelner, M. and Mendelssohn, D.C. (1998) Reconceptualising advance care planning from the patient’s perspective. Archives of Internal Medicine. 158: 879–884. Storey, L. and Betteley, A. (2011) Preferred Priorities for Care: Advance Care Planning process. In K. Thomas and B. Lobo (eds) Advance Care Planning in End of Life Care. Oxford: Oxford University Press. Tierney, W.M., Dexter, P.R., Gramelspacher, G.P., Perkins, A.J., Zhou, X.H. and Wolinsky, F.D. (2001) The effect of discussions about advance directives on patients’ satisfaction with primary care. Journal of Geriatric Internal Medicine. 16: 32–34. van der Steen, J.T., Radbruch, L., Hertogh, C.E.M., De Boer, M.E., Hughes, J.C., Larkin, P. et al. (2013) White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine. 28(3): 197–209. Vig, E.K., Starks, H., Taylor, J.S., Hopley, E.K. and Fryer-Edwards, K. (2007) Surviving surrogate decision-making: what helps and hampers the experience of making medical decisions for others. Journal of General Internal Medicine. 22(9): 1274–1279. Webb, R. and Harrison Dening, K. (2016) In whose best interests? A case study of a family affected by dementia. British Journal of Community Nursing. 21(6): 300–304. Wendler, D. and Rid, R. (2011) Systematic review: the effect on surrogates of making treatment decisions for others. Annals of Internal Medicine. 154(5): 336–346.

Further reading and resources NCPC (2011) Difficult Conversations in Dementia. London: NCPC. www.ncpc.org.uk (Accessed 18 Jan 2018). Irish Hospice Foundation (2016) Dementia Guidance Document 2: Advance care planning and advance healthcare directives with a person with dementia. The Irish Hospice Foundation. Thomas, K., Lobbo, B. and Detering, K. (eds) (2017) Advance Care Planning. Second edition. Oxford: Oxford University Press.

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Chapter 15

Spirituality and Dementia Care Helen Scott

Learning objectives By the end of this chapter you will: • Understand the concept of spirituality and that all people have spiritual needs, regardless of whether or not they have religious beliefs. • Understand the potential causes of spiritual distress in people with dementia. • Be more aware of spiritual care strategies for people with dementia that can be incorporated into practice.

Introduction Spiritual care is an important aspect of patient care. It is the responsibility of all members of the health and social care team (NICE 2011). Fulfilling spiritual needs has a positive impact on people’s psychological and physical wellbeing (Jolley et al. 2010; Koenig 2012; Dalby, Sperlinger and Boddington 2012; Agli, Bailly and Ferrand 2015). However, spirituality is a complex phenomenon and is not well understood by practitioners (Pargament 1997; MacKinlay and Trevitt 2007). This leads to patients’ spiritual needs being ignored, particularly in relation to people with dementia (Tompkins and Sorrell 2008; Bursell and Mayers 2010; Skomakerstuen Ødbehr et al. 2015). This chapter provides an overview of spirituality. It discusses the potential causes of spiritual distress in people with dementia, outlining examples of spiritual care strategies. Within the chapter, the term ‘God/ Higher Power’ is used to denote all forms of transcendent being or forces that may form part of people’s belief systems, religious or otherwise.

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An overview of the concept of spirituality In the past, spirituality was solely associated with being religious, that is, taking part in religious activities and rituals (Pargament 1997; King, Speck and Thomas 2001). However, the concept of spirituality is more diverse than that. The word ‘spirit’ derives from the Latin spiritus (meaning breath). Therefore, it has been argued that spirituality is the fundamental essence of life or a metaphysical life force. This life force (or spirituality) enables people to connect with themselves as individuals (a sense of self) and make connections, at an intangible, emotional or transcendent level with, for example, art, music, nature, other people or God/Higher Power (Everett 1999; MacKinlay 2006; Carr, Hicks-Moore and Montgomery 2011; Powers and Watson 2011). Spirituality also: • Encompasses people’s existential search for meaning and purpose in life. That search becomes particularly significant as people get older, are faced with cognitive and physical impairments and lifelimiting conditions and when preparing for death (Frankl 1963; Ortiz and Langer 2002; McSherry 2006; Selman et al. 2007; Daly, Fahey-McCarthy and Timmins 2016). • Relates to people’s fundamental values and beliefs that they have developed during their life. People may perceive their spiritual values/beliefs within the context of religion. However, people with no religious faith still have belief systems that give their lives meaning and purpose, such as relationships with others, art, creativity or nature (Speck 2004; Speck, Higginson and AddingtonHall 2004; Wilkinson and Coleman 2010; Daly et al. 2016). • Can be linked to hope, that is, the subjective sense of having a meaningful future, despite life’s problems and challenges (Frankl 1963; Daly et al. 2016). Spiritual needs are not static and may change throughout the course of people’s lives (MacKinlay and Trevitt 2010; Finlay 2015).

STOP AND REFLECT Think about what spirituality means to you. Do you think about the meaning and purpose of your life? What are your fundamental values and beliefs? Do you find thinking about such things interesting or do they make you anxious?

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Spiritual values/beliefs remain important to people with dementia throughout their lives (Bryden 2005; Dalby et al. 2012). Preserving meaning and purpose can help people adjust psychologically to having dementia, develop positive coping strategies and feel hope for the future (Beuscher and Beck 2008; Koenig 2012; Daly et al. 2016). An essential aspect of the spiritual life of people with dementia is maintaining meaningful connections/relationships with family/loved ones and the world around them. That provides them with a sense of identity, security, belonging and continuity (Trevitt and MacKinlay 2006; Goodall 2009; Dalby et al. 2012; Daly et al. 2016). People with dementia want to feel that they belong to and are involved in the community in which they are living (Elliot 1997; Trevitt and MacKinlay 2006; Keast, Leskovar and Brohm 2010). They need to be respected, valued and appreciated as a person and retain their sense of self. Sabat (2001, 2010) identified three components of self in relation to people with dementia: • A sense of personal identity, e.g. ‘I’ and ‘me’ (this remains intact) • Attributes/characteristics, for example personality, belief systems and interests (these may alter over time, depending on people’s response to their situation) • Social roles, for example being a parent, spouse or friend (these remain very important to the person but are dependent on how he/ she is perceived and treated by others). People with dementia who have religious beliefs may continue to experience their faith, despite increasing cognitive impairments (Dalby et al. 2012). Religious beliefs can help people cope with the impact of the disease (Snyder 2003; Jolley et al. 2010; Agli et al. 2015). The meaning that people with dementia bring to their lives will influence how they respond to living with the condition (MacKinlay and Trevitt 2007). People may try to find meaning in religious terms and perceive the disease as part of a divine plan (Dalby et al. 2012). Conversely, they may feel that they are being punished or that God/Higher Power has forgotten them (Snyder 2003; Keast et al. 2010; Dalby et al. 2012). Distress about death/dying is just as common among people with dementia as it is among people without dementia (Meeussen et al. 2012). Talking openly about death/dying with people with dementia can improve their quality of life during the end phases of life (National Council for Palliative Care and Dying Matters Coalition 2011, 2012). If people are unable to talk about their spiritual/ existential/religious fears or find answers to questions such as ‘Why me?’ within their particular belief systems, or from their life experiences, they

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may become spiritually distressed (Kearney 1990, 1996; Mitty 2010; Dalby et al. 2012). Spiritual distress emanates from a sense of loss, such as loss of future and purpose, and can cause people to lose hope (Saunders 1987, 1988; Kearney 1996; Dalby et al. 2012).

CASE STUDY: ELSIE Elsie is a committed Roman Catholic. She lives with her daughter but has been admitted to hospital with pneumonia. She has mixed dementia. During an episode of care she tells a nurse that she is frightened. She keeps saying, ‘I have been bad. I have been bad.’ The nurse tries to get Elsie to elaborate on what she is saying. Eventually Elsie tells the nurse that she thinks she is dying and God may not want her, as she has been bad. Despite encouragement, Elsie is not able or does not want to say any more. The nurse acknowledges Elsie’s feelings and asks her if she would like a visit from the priest. Elsie smiles and says yes. The nurse documents the conversation, informs her colleagues and makes the referral.

Potential causes of spiritual distress in people with dementia Dementia can result in a number of losses, including memory, information recall, concentration, attention, language, word recognition, problem-solving, logic and reasoning (Vance 2004; Vance et al. 2008). The progression of dementia varies for different people. It may impact negatively on people’s ability to communicate verbally. This may lead to people feeling isolated from their family/loved ones (Alzheimer’s Society 2014a). The impairments associated with dementia may also result in people finding it difficult to be involved in everyday activities. They can lose independence and control over their lives (Johnson and Johnson 2007). That may cause people to lose self-esteem and confidence and feel lonely, vulnerable and depressed (Beuscher and Beck 2008; Beuscher and Grando 2009; Dalby et al. 2012; Alzheimer’s Society 2014a). Memory loss is one of the most distressing symptoms of dementia (Alzheimer’s Society 2012a). Short-term memory is usually affected first, followed by gradual deterioration of long-term memory. As memories tend to decline in reverse order, people often remember events from the distant past but are unable to remember recent times, including what happened the day, hour or minute before. They may no longer recognise loved ones (Vance 2004; Alzheimer’s Society 2012a). In their minds they

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may be living at a time when they were younger and their children were small. They may think that their parents are still alive. They may not understand why the mirror is showing an older person or why a grownup is telling them that she is their daughter. They may feel abandoned by their parents, whom they do not see. They may start to get worried about who is looking after their children. Such aspects of living with dementia can make the world a very frightening and overwhelming place (Beuscher and Beck 2008; Dalby et al. 2012). They may cause people to withdraw from the world around them and cease to interact with others (AshcroftSimpson et al. 2008; Fargeau et al. 2010). All the losses associated with dementia can have a negative impact on a person’s sense of self as a unique individual (Kitwood 1997; Sabat 2001; Fargeau et al. 2010). The problem of maintaining a sense of self and remaining connected with family/friends is exacerbated when family/ loved ones consider that the person they knew before the dementia progressed has ceased to exist (Kitwood and Bredin 1992; Sweeting and Gilhooly 1997; Watson 2013; Post 2016). If the fundamental meaning that people attach to their lives is related to their relationships, losing those relationships results in loss of life’s meaning, leading to grief, depression and spiritual distress (MacKinlay and Trevitt 2007).

CASE STUDY: ROSE Rose is 82 years old and lives in a care home. Her son used to visit her two or three times a week. However, the care staff have noticed that his visits have become less frequent. He is now only visiting once every two weeks. Following one of those visits a carer, Jane, asks him how he is finding his mother. He replies that his mother no longer remembers him and his visits so he sees no point in coming that often. He also says that the person he visits is not really his mother anymore. The dementia has taken her away. Jane is a bit confused as Rose is always asking for her son and gets distressed if he does not come. She informs the care home manager that she thinks Rose’s son needs some support.

The perception that people with more progressed dementia no longer remember their relationship with God/Higher Power, and that religious practices are of limited importance to them, may result in carers not prioritising religious activities or arranging pastoral visits. In addition, impaired functional abilities may make it more difficult for people to engage in familiar religious rituals/spiritual practices that were always a

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source of great comfort and meaning throughout their lives. All this may lead to the person experiencing negative emotions such as guilt (Snyder 2003; Mooney 2004; Dalby et al. 2012; Finlay 2015).

Spiritual care for people with dementia Spiritual care for people with dementia involves finding ways to help them remain connected to themselves, family/loved ones and the world around them. It involves helping them to experience hope, express spiritual, religious or existential concerns, maintain their sense of self, feel recognised and understood as an individual, and perceive that their lives continue to have meaning and purpose (Elliot 1997; Bell and Troxel 2001; Trevitt and MacKinlay 2006; Alzheimer’s Society 2010, 2014b; Keast et al. 2010; Toivonen, Charalambous and Suhonen 2017). It requires caregivers to focus on the abilities of the person that remain intact and the emotional and long-term memories that are resistant to the neurological damage associated with dementia (Sabat 2001, 2006; Vance 2004, 2005; Johnson and Johnson 2007; Vance et al. 2008; Finlay 2015). Spiritual care of people with dementia is strongly linked to the provision of person-centred care, as developed by Thomas Kitwood (Kitwood 1997). Box 15.1 lists the fundamental psychological needs of people with dementia, as described by Kitwood. Like person-centred care, spiritual care for people with dementia depends on carers taking the time to get to know people’s unique life history (Toivonen et al. 2017). This enables them to understand what gives people meaning in their life, such as music, art, animals, gardening or religion (Lawrence 2007; Goodall 2009; Jolley et al. 2010; Ennis and Kazer 2013). Box 15.1: Person-centred care – fundamental psychological needs of people with dementia (Kitwood 1997) • For attachment – e.g. developing real person-to-person relationships, so that people feel safe and secure. • For inclusion – e.g. helping people maintain and develop relationships with others and to feel that they belong to the community in which they are living so they have a sense of belonging. • For comfort – e.g. showing people that we really care about them, demonstrating affection and giving emotional support.

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• For identity – e.g. helping people remember and connect with their own life history, respecting their uniqueness and respecting them as individuals. • For occupation – e.g. enabling people to use all their strengths and capabilities, to find a sense of purpose, have a role, feel busy and valued and to have fun. • For inclusion – e.g. helping people maintain and develop relationships with others and to feel that they belong to the community in which they are living so they have a sense of belonging.

There is limited evidence in relation to how best nurses can provide spiritual care in relation to people with dementia (Høgsnes et al. 2016). More work is required on how nurses can best be educated to recognise people’s spiritual needs and which assessment and outcomes tools are most appropriate (Ødbehr et al. 2015; Hermans et al. 2017; Toivonen et al. 2017). Box 15.2 lists topics that could be used in relation to spiritual assessments. Ideally, conversations about spiritual values, beliefs and needs should begin while the person is still able verbally to communicate them and they can be written in, for example, an advance care plan. That said, carers should still encourage people with verbal difficulties to express their spiritual/religious values verbally and observe for bodily cues in relation to people’s wellbeing. In addition, family/friends may be able to provide relevant information (Daly and Fahey-McCarthy 2014). However, carers need to be aware that not everyone will welcome talking about spiritual issues (Finlay 2015). Everyone who comes into contact with people with dementia has the potential to have a positive or negative effect on their sense of self and feelings of worthiness as a human being. Non-verbal communication (such as body language, facial expression and gestures) is an important form of expression (Kontos 2004; Walters 2007; Watson 2013; Finlay 2015). People with dementia may find it much easier to interpret people’s non-verbal behaviour and signals than what they say (Johnson and Johnson 2007; Finlay 2015).

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Box 15.2: Examples of topics that could be used when assessing the spiritual values and beliefs of people with dementia (Maugans 1996; MacKinlay 2006; Beuscher and Beck 2008) • Background information on spiritual beliefs and preferences • The way in which spirituality is perceived by the individual and what nurtures it • Whether values and beliefs have been affected by the dementia • Normal coping responses to stressful life events that help people lift their spirits • Whether having dementia has led to positive changes in people’s lives • What people perceive as being the most difficult challenges associated with dementia • Who (e.g. family/friends) or what helps people find meaning and to maintain a positive outlook about life • Any religious beliefs and practices that give life meaning and purpose and which contribute to people’s wellbeing and feelings about, and relationship with, God/Higher Power.

CASE STUDY: MARJORIE Marjorie has lived in a care home for three years. She has vascular dementia. Her verbal abilities have been compromised by her  dementia but she is able to make herself understood fairly well. Her husband died two years ago. They had no children. Marjorie has one brother who lives abroad. Consequently, Marjorie can feel isolated and lonely at times and is always looking to develop relationships with other residents and the care staff. However, it takes time to converse with Marjorie. One day Marjorie is sitting in the care home lounge. The home administrator crosses the lounge. Marjorie calls out to her and reaches out her arms in welcome. The administrator just walks past. Marjorie looks embarrassed and sad.

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STOP AND REFLECT Have you ever purposefully avoided a person with dementia? If so, could the person have interpreted from your behaviour that this was what you were doing? Reflect on how it would make you feel if you saw that someone was avoiding you on purpose.

Promoting spiritual wellbeing Various activities and therapies have the potential to promote the spiritual wellbeing of people with dementia, some of which are described in Box 15.3. Interactive groups in care homes and day centres can provide fun, occupation and a sense of purpose, even if people do not remember being involved in them. The act of remembering is not the goal (Buettner 2001; Keast et al. 2010). With dementia, the emphasis needs to be on valuing the importance of the emotional or spiritual experience of living in the moment (Everett 1999; Bryden 2012). Box 15.3: Examples of activities/therapies that can promote spiritual wellbeing in people with dementia • Reminiscence therapy encourages people to share their thoughts and feelings about topics from the past, using prompts such as photographs, familiar objects, letters, souvenirs or music. It enables people to interact with others, access long-term and emotional memories, and thereby connect with themselves as individuals, their loved ones (both deceased and living) and their role within the family (Trevitt and MacKinlay 2006; Alzheimer’s Society 2012a; Dalby et al. 2012). • Life-history work is a form of storytelling that draws on people’s long-term memories and may help to reconnect them with their past (Elliot 1997; Mitty 2010; Alzheimer’s Society 2012a, 2014b). It involves talking with the person about important past events, memories, stories, experiences, people and places, which can be documented in a home-made book that can be shared with others (Alzheimer’s Society 2012a). • Spiritual reminiscence involves asking people questions about what gives their life meaning; whether they perceive life to be worth living; how they feel about getting older; what they find most difficult in life; their hopes, joys, fears and regrets;

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the spiritual and/or religious practices that are important to them; and their relationship with God/Higher Power (Trevitt and MacKinlay 2006; MacKinlay and Trevitt 2010). It helps people find deeper meaning in their lives, transcend the losses associated with their condition and prepare for death, and also enables caregivers to get to know people in a deeper and more meaningful way (Trevitt and MacKinlay 2006; MacKinlay and Trevitt 2010; Wu and Koo 2015).

Discussions may stir negative memories and emotions, such as anger, guilt, regret or grief (Trevitt and MacKinlay 2006). Past losses can continue to have a significant emotional effect, even if the person has forgotten a loved one has died or the losses occurred many years previously (De Vries 2001; Trevitt and MacKinlay 2006). People must be supported to express their emotions (Alzheimer’s Society 2012a). Grief work with people with dementia involves carers addressing the meaning behind the loss, continuously validating the feelings when they are expressed, and remembering and celebrating the lives of the people who have died (Everett 1999; De Vries 2001; Trevitt and MacKinlay 2006). This may help people accept the losses and find new purpose and hope (MacKinlay 2001; MacKinlay and Trevitt 2007, 2010). If given time and support, people with verbal communication difficulties can still express their feelings, fears and concerns (Bell and Troxel 2001; Trevitt and MacKinlay 2006).

CASE STUDY: SALLY Sally is 84 years old. She has Alzheimer’s disease. She used to live at home with her husband, who was her main carer. One day he collapsed from a heart attack and died. Sally was admitted to a care home. She found it difficult to settle and refused to leave her room. She was extremely anxious and had regular panic attacks. A volunteer befriender began to visit Sally once a week in her room. She encouraged Sally to express her grief about her husband’s death. Sally was able to tell the volunteer how well he looked after her and how much she loved him. She also spoke about how much she missed her home, her mother (who had long since died) and her neighbours and friends. Being able to talk about her losses appeared to provide Sally with the opportunity to come to terms with them to some degree. She eventually started to spend more time out of her room and in the lounge. She particularly enjoyed music activities as her husband had been a singer.

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It must be remembered that group activities do not suit everyone (Cohen-Mansfield, Parpura-Gill and Golander 2006; Alzheimer’s Society 2014b). Many activities and therapies are aimed at people with verbal communication skills and/or physical abilities (Vance 2004; Mackinlay and Trevitt 2010; Simard 2013). However, people with communication and physical difficulties still need to feel part of the collective life of the home and maintain their relationships with others (Alzheimer’s Society 2007; Volicer 2007; Finlay 2015). Sensory stimulation is a form of spiritual care that requires no verbal communication. It can help foster people’s sense of connection with themselves and families/friends/caregivers (Threadgold and Grennan 2003; Goodall and Etters 2005; Simard and Volicier 2010; Feil and deKlerk-Rubin 2012; Nicholls et al. 2013). Gentle massage of the hands, shoulder, neck and face has been found to cause people with dementia who are normally withdrawn to reach out and touch the caregiver’s hands, face or body, in a gesture of reciprocation (Nicholls et al. 2013). Namaste Care is an example of a systematic, multi-sensory care programme that is aimed specifically at meeting the spiritual needs of people with advanced dementia who are no longer able to participate in social or group activities (‘Namaste’ means to honour the spirit within). It integrates meaningful activity with multi-sensory stimulation, nursing care, person-centred care and reminiscence (Simard 2013). It has been shown to enhance the wellbeing of people with dementia, decrease agitated behaviours, improve communication and nutritional intake and help people and their family/ loved ones to reconnect with each other (Simard and Volicer 2010; Stacpoole et al. 2013, 2015, 2017; Stacpoole and Thompsell 2015). Music groups/therapies have the potential to enhance wellbeing in people with dementia. Listening to music may help reduce behavioural and psychological symptoms, including agitation (Cohen-Mansfield, Gavendo and Blackburn 2017; Daykin et al. 2017; Dyer et al. 2017; Fakhoury et al. 2017; Garrido et al. 2017). Music that is familiar and linked to memories of past events may stimulate memories and can lead to reminiscence discussions, either individually or as a group (Onieva-Zafra et al. 2018).

CASE STUDY: HAROLD Harold and Jesse have been married for more than 50 years. When Harold and Jesse were younger they belonged to a ballroom dancing group. Harold is now living in a care home. He has Alzheimer’s disease and has lost the ability to communicate verbally. Jesse visits him most days but he gives the impression that he does not recognise her, which

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understandably makes her very sad. One afternoon a volunteer was running a sing-a-long session in the lounge. About halfway through Jesse said her goodbyes to Harold and went to leave. Harold got up and followed her to the door, which was unusual for him. Jesse led him back to his chair and encouraged him to sit down. Instead, Harold put his arms around his wife and started dancing with her. They kept dancing for about five minutes. When they finished he smiled at her in a loving way and kissed her. That was the first time for ages that Jesse had any sense that Harold knew her.

Another form of spiritual care is being in nature. This engages many of the senses and can help people connect with their spiritual side, providing a sense of calm, inner strength and tranquillity (Stuckey et al. 2002; Snyder 2003). Therefore, enabling people to go outside to feel the sun, watch sunsets or wildlife, and smell flowers is an important spiritual activity (Bursell and Mayers 2010; Keast et al. 2010).

STOP AND REFLECT If people living in care homes require support when mobilising, they may be unable to go outside when they desire. If you were prevented from going outside when you wanted, how would that make you feel? Would you accept the situation or feel frustrated and angry?

People with dementia who have religious faith are still able to respond verbally, physically and emotionally to familiar religious rituals, symbols and music (Mooney 2004; Carr et al. 2011; Powers and Watson 2011; Dalby et al. 2012). Being involved in religious practices can enable people to access memories (Keast et al. 2010; Higgins 2011; Powers and Watson 2011; Dalby et al. 2012; Ennis and Kazer 2013). In more advanced dementia, religious activities that require the ability to reason, consciously recall information, concentrate and maintain attention, for example scripture studies, may result in anxiety and agitation (Vance 2004; Vance et al. 2008). Activities with a reduced cognitive demand, a high emotional content, and which rely on automatic or unconscious recall may be more effective (Elliot 1997; Vance 2004). Depending on the person’s faith, those could include holding a religious object/book, singing familiar hymns/sacred songs, spinning a prayer wheel, reciting favourite prayers/ popular scriptures, being helped to face towards Mecca to pray, simple yoga exercises and chanting (Vance 2004; Vance et al. 2008; Finlay 2015).

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The response to, and the continued appropriateness of, such interventions require constant assessment (Vance 2004; Trevitt and MacKinlay 2006; Goodall 2009). Ultimately, spiritual care requires nurses/carers to start actually spending time and being with the person (Kitwood 1997; Carr et al. 2011; Powers and Watson 2011). The mere presence of another person, and being given attention and time, are spiritual care practices. They show people that they are not alone, which may engender a sense of hope, meaning and connection (Lawrence 2003; Ashcroft-Simpson et al. 2008; Powers and Watson 2011; Dalby et al. 2012).

Conclusion People with dementia need to be supported to express their spiritual and/ or religious concerns/values/beliefs. Helping people to find meaning and purpose in life and to maintain relationships with those they love may help them to maintain positive attitudes about life, improve emotional wellbeing and self-esteem and provide them with inner strength. A variety of activities and therapies have been developed to help people with dementia fulfil their spiritual needs. However, with dementia, emotions and feelings may play a more dominant role than verbal communication. When that is understood, it becomes possible to help people reconstruct their sense of self and identity without the need for words. Just spending time with people and showing them that they are valued is a spiritual practice.

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Bryden, C. (2005) Dancing with Dementia. My Story of Living Positively with Dementia. London: Jessica Kingsley Publishers. Bryden, C. (2012) Who Will I Be When I Die? London: Jessica Kingsley Publishers. Buettner, L.L. (2001) Therapeutic recreation in the nursing home: reinventing a good thing. Journal of Gerontological Nursing. 27(5): 8–13. Bursell, J. and Mayers, C.A. (2010) Spirituality within dementia care: perceptions of health professionals. British Journal of Occupational Therapy. 73(4): 144–151. Carr, T.J., Hicks-Moore, S. and Montgomery, P. (2011) What’s so big about the ‘little things’?: a phenomenological inquiry into the meaning of spiritual care in dementia. Dementia. 10(3): 399–414. Cohen-Mansfield, J., Parpura-Gill, A. and Golander, H. (2006) Utilization of self-identity roles for designing interventions for persons with dementia. Journals of Gerontology. Series B. Psychological Sciences and Social Sciences. 61(4): P202–212. Cohen-Mansfield, J., Gavendo, R., Blackburn, E. (2017) Activity preferences of persons with dementia: an examination of reports by formal and informal caregivers. Dementia (London). 10 November. doi: 10.1177/1471301217740716 (Epub ahead of print). Dalby, P., Sperlinger, D.J., Boddington, S. (2012) The lived experience of spirituality and dementia in older people living with mild to moderate dementia. Dementia. 11(1): 75–94. Daly, L. and Fahey-McCarthy, E. (2014) Attending to the spiritual in dementia care nursing. British Journal of Nursing. 23(14): 787–791. Daly, L., Fahey-McCarthy, E. and Timmins, F. (2016) The experience of spirituality from the perspective of people living with dementia: a systematic review and meta-synthesis. Dementia (London). 18(2): 448–470. doi: 10.1177/1471301216680425. Daykin, N., Parry, B., Ball, K. et al (2017) The role of participatory music making in supporting people with dementia in hospital environments. Dementia (London). 3 November. doi: 10.1177/1471301217739722 (Epub ahead of print). De Vries, B. (2001) Grief: intimacy’s reflection. Generations. Summer: 75–80. Dyer, S.M., Harrison, S.L., Laver, K. et al. (2017) An overview of systematic reviews of pharmacological and non-pharmacological interventions for the treatment of behavioral and psychological symptoms of dementia. International Psychogeriatrics. 16 November. doi: 10.1017/S1041610217002344 (Epub ahead of print). Elliot, H. (1997) Religion, spirituality and dementia: pastoring to sufferers of Alzheimer’s disease and other associated forms of dementia. Disability and Rehabilitation. 19(10): 435–441. Ennis, E.M., Jr and Kazer, M.W. (2013) The role of spiritual nursing interventions on improved outcomes in older adults with dementia. Holistic Nursing Practice. 27(2): 106–113. Everett, D. (1999) Forget me not: the spiritual care of people with Alzheimer’s disease. Journal of Health Care Chaplaincy. 8(1–2): 77–88. Fakhoury, N., Wilhelm, N., Sobota, K.F. et al. (2017) Impact of music therapy on dementia behaviors: a literature review. The Consultant Pharmacist. 32(10): 623–628. Fargeau, M.N., Jaafari, N., Ragot, S., Houeto, J.L., Pluchon, C. and Gil, R. (2010) Alzheimer’s disease and impairment of the Self. Consciousness and Cognition. 19(4): 969–976. Feil, N. and deKlerk-Rubin, V. (2012) The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer’s and Other Dementias. Third edition. Baltimore: Health Professions Press. Finlay, M.R. (2015) Righteousness in the land of forgetfulness. Journal of Religion and Health. 54(1): 279–286. Frankl, V. (1963) Man’s Search for Meaning. Boston: Beacon Press. Garrido, S., Dunne, L., Chang, E. et al (2017) The use of music playlists for people with dementia: a critical synthesis. Journal of Alzheimer’s Disease. 60(3): 1129–1142.

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Meeussen, K., Van den Block, L., Echteld, M., Boffin, N., Bilsen, J., Van Casteren, V. and Deliens, L. (2012) Older people dying with dementia: a nationwide study. International Psychogeriatrics. 24(10): 1581–1591. Mitty, E. (2010) Storytelling. Geriatric Nursing. 31(1): 58–62. Mooney, S.F. (2004) A ministry of memory: spiritual care for the older adult with dementia. Care Management Journals. 5(3): 183–187. National Council for Palliative Care (NCPC) and Dying Matters Coalition (2011) Difficult Conversations. London: NCPC. National Council for Palliative Care and Dying Matters Coalition (2012) Time to Talk? Starting End-of-Life Care Conversations with People Affected by Dementia. (Leaflet.) London: NCPC. National Institute for Health and Care Excellence (NICE) (2011) End of Life Care for Adults. NICE Quality Standard QS13. London: NICE. Nicholls, D., Chang, E., Johnson, A. and Edenborough, M. (2013) Touch, the essence of caring for people with end-stage dementia: a mental health perspective in Namaste Care. Aging and Mental Health. 17(5): 571–578. Ødbehr, L.S., Kvigne, K., Hauge, S. et al (2015) Spiritual care to persons with dementia in nursing homes: a qualitative study of nurses’s and care workers’s experiences. BMC Nursing. 14: 70. doi: 10.1186/s12912-015-0122-6. Onieva-Zafra, M.D., Hernández-Garcia, L., Gonzalez-Del-Valle, M.T. et al (2018) Music intervention with reminiscence therapy and reality orientation for elderly people with Alzheimer disease living in a nursing home: a pilot study. Holistic Nursing Practice. 32(1): 43–50. Ortiz, L.P. and Langer, N. (2002) Assessment of spirituality and religion in later life: acknowledging clients’ needs and personal resources. Journal of Gerontological Social Work. 37(2): 5–21. Pargament, K.I. (1997) The Psychology of Religion and Coping: Theory, Research, Practice. New York: Guildford Press. Post, S.G. (2016) ‘Is Grandma still there?’ A pastoral and ethical reflection on the soul and continuing self-identity in deeply forgetful people. Journal of Pastoral Care and Counseling. 70(2): 148–153. Powers, B.A. and Watson, N.M. (2011) Spiritual nurturance and the support for nursing home residents with dementia. Dementia. 10(1): 59–80. Sabat, S.R. (2001) The Experience of Alzheimer’s Disease — Life Through a Tangled Veil. Oxford: Blackwell Publishers. Sabat, S.R. (2006) Implicit memory and people with Alzheimer’s disease: implications for caregiving. American Journal of Alzheimer’s Disease and Other Dementias. 21(1): 11–14. Sabat, S.R. (2010) Maintaining the self in dementia. In J.C. Hughes, M. Lloyd-Williams and G.A. Sachs (eds) Supportive Care for the Person with Dementia. Oxford: Oxford University Press. Saunders, C. (1987) What’s in a name? Palliative Medicine. 1(1): 57–61. Saunders, C. (1988) Spiritual pain. Journal of Palliative Care. 4(3): 29–32. Selman, L., Beynon, T., Higginson, I.J. and Harding, R. (2007) Psychological, social and spiritual distress at the end of life in heart failure patients. Current Opinion in Supportive and Palliative Care. 1(4): 260–266. Simard, J. (2013) The End-of-Life Namaste Care Program for People with Dementia. Second edition. Baltimore: Health Professions Press. Simard, J. and Volicer, L. (2010) Effects of Namaste Care on residents who do not benefit from usual activities. American Journal of Alzheimer’s Disease and Other Dementias. 25(1): 46–50.

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Skomakerstuen Ødbehr, L., Kvigne, K., Hauge, S. and Danbolt, L.J. (2015) A qualitative study of nurses’ attitudes towards and accommodations of patients’ expressions of religiosity and faith in dementia care. Journal of Advanced Nursing. 71(2): 359–369. Snyder, L. (2003) Satisfactions and challenges in spiritual faith and practice for persons with dementia. Dementia. 2(3): 299–313. Speck, P.W. (2004) Spiritual concerns. In N. Sykes, P. Edmonds and J. Wiles (eds) Management of Advanced Disease. Fourth edition. London: Arnold. Speck, P., Higginson, I. and Addington-Hall, J. (2004) Spiritual needs in health care. British Medical Journal. 329(7458): 123–124. Stacpoole, M. and Thompsell, A. (2015) OA25: The Namaste Care programme can enrich quality of life for people with advanced dementia and those who care for them without additional resources. BMJ Supportive and Palliative Care. 5, Suppl 1: A8. doi:10.1136/ bmjspcare-2015-000906.25. Stacpoole, M., Thompsell, A., Hockley, J., Simard, J. and Volicer, L. (2013) Implementing the Namaste Care Programme for People with Advanced Dementia at the End of Their Lives: An Action Research Study in Six Care Homes with Nursing. London: St Christopher’s Hospice. Stacpoole, M., Hockley, J., Thompsell, A., Simard, J. and Volicer, L. (2015) The Namaste Care programme can reduce behavioural symptoms in care home residents with advanced dementia. International Journal of Geriatric Psychiatry. 30(7): 702–709. Stacpoole, M., Hockley, J., Thompsell, A. et al (2017) Implementing the Namaste Care Program for residents with advanced dementia: exploring the perceptions of families and staff in UK care homes. Annals of Palliative Medicine. 6(4): 327–339. Stuckey, J.C., Post, S.G., Ollerton, S., FallCreek, S.J. and Whitehouse, P.J. (2002) Alzheimer’s disease, religion and the ethics of respect for spirituality: a community dialogue. Alzheimer’s Care Quarterly. 3(3): 199–207. Sweeting, H. and Gilhooly, M. (1997) Dementia and the phenomenon of social death. Sociology of Health and Illness. 19(1): 93–117. Threadgold, M. and Grennan, S. (2003) Activating potential for communication through all the senses. Dementia. 2(2): 277–279. Toivonen, K., Charalambous, A. and Suhonen, R. (2017) Supporting spirituality in the care of older people living with dementia: a hermeneutic phenomenological inquiry into nurses’ experiences. Scandinavian Journal of Caring Sciences. 8 September. doi: 10.1111/ scs.12519 (Epub ahead of print). Tompkins, C.J. and Sorrell, J.M. (2008) Older adults with Alzheimer’s disease in a faith community. Journal of Psychosocial Nursing and Mental Health Services. 46(1): 22–25. Trevitt, C. and MacKinlay, E. (2006) ‘I am just an ordinary person…’: spiritual reminiscence in older people with memory loss. Journal of Religion, Spirituality and Aging. 18(2–3): 79–91. Vance, D.E. (2004) Procedural and emotional religious activity therapy. Activities, Adaptation and Aging. 29(1): 27–45. Vance, D.E. (2005) Spiritual activities for adults with Alzheimer’s disease: the cognitive components of dementia and religion. Journal of Religion, Spirituality and Aging. 17(1– 2): 109–130. Vance, D.E., Moore, B.S., Farr, K.F. and Struzick, T. (2008) Procedural memory and emotional attachment in Alzheimer disease: implications for meaningful and engaging activities. Journal of Neuroscience Nursing. 40(2): 96–102. Volicer, L. (2007) Goals of care in advanced dementia: quality of life, dignity and comfort. Journal of Nutrition, Health and Aging. 11(6): 481. Walters, D. (2007) The effect of multi-sensory ministry on the affect and engagement of women with dementia. Dementia. 6(2): 233–243.

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Watson, J. (2013) What is dementia? Implications for caring at the end of life. End of Life Journal. 3(1): 1–9. Wilkinson, P.J. and Coleman, P.G. (2010) Strong beliefs and coping in old age: a case-based comparison of atheism and religious faith. Ageing and Society. 30(2): 337–361. Wu, L.F. and Koo, M. (2015) Randomized controlled trial of a six-week spiritual reminiscence intervention on hope, life satisfaction, and spiritual well-being in elderly with mild and moderate dementia. International Journal of Geriatric Psychiatry. 11 May. doi: 10.1002/gps.4300 (Epub ahead of print).

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Chapter 16

Supporting Families and Carers of People with Dementia Zena Aldridge

Learning objectives  By the end of this chapter you will: • Understand what is meant by the terms ‘families’ and ‘carers’ of people with dementia in order to improve a practitioner’s ability to identify those in a caring role. • Have an increased awareness of the potential negative effects of caring. • Be aware of some of the needs of families and carers and begin to identify resources and approaches that can support them.

Introduction Alzheimer’s Society report that the total cost of dementia to the UK health and social care economy is £26.3 billion; nonetheless, two-thirds of this figure is funded directly by people with dementia and their families (Prince et al. 2014). Almost £6 billion per year is paid by people with dementia and their families for help with everyday tasks provided by professional care workers, such as washing, dressing and eating. However, a staggering £11.6 billion is the value of the unpaid care that families provide to those with dementia (Prince et al. 2014). There are currently estimated to be over 700,000 people in the UK acting as primary, unpaid carers for people with dementia (Alzheimer’s Research UK 2015) and these numbers are expected to rise as the prevalence of dementia increases over the coming years.

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A diagnosis of dementia is given not just to one person – it is given to a spouse, partner, a child, the extended family and friends. It is important to remember that every time a diagnosis is made it is life changing. It is therefore vital that everyone has timely access to bespoke post-diagnosis support and information and then on an ongoing basis. (Professor Alistair Burns, NHS England National Clinical Director for Dementia (Dementia Action Alliance 2014))

Who is supporting people with dementia? This is not a straightforward question and is challenging for various reasons: nationally, only two-thirds of people with dementia have received a formal diagnosis, with significant local variations in diagnosis rates. This results in: • Either many families and carers supporting someone, suspecting their family member has dementia but without any formal diagnosis and clarification of the underlying disease process (e.g. the person suspected of having dementia may not wish to be assessed). • Or they may be unaware that the changes, signs and symptoms they may be observing could be part of a dementia presentation. Therefore not having a diagnosis of dementia can negatively impact on the ability to also identify those in a caring role. This presents us with our first challenge and creates a barrier to them accessing appropriate and timely support in their caring roles. It is important to recognise that the need for support in such instances remains and the lack of a diagnosis does not negate the need for families and carers to be supported as they try to cope with the changes in the person with dementia. As a result, it is important to encourage families to seek support and to identify and deliver services that do not require a definitive diagnosis as a gateway to accessing such support. ‘Peri-diagnosis support’ is a term becoming more widely used to identify needs which may present before someone is diagnosed with dementia or during the process of getting a diagnosis; it is essential even at this stage that there is access to specialist support for all families and carers affected.

Who are families and carers? It is worth clarifying to whom we are referring to when using the terms ‘families’ and ‘carers’ of people with dementia. Understanding the

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terminology and perceptions of self-identification can help professionals to identify carers and in turn acknowledge and identify their needs more effectively. The most commonly used definition for a carer is: A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support. (Carers Trust 2017).

However, due to the nature of caring or perceptions of the role, family members may not always identify themselves as carers but see the increased care-related activities and responsibilities as a component of an ongoing relationship with the person with dementia, not as a separate role or function. The roles of carer and family member are not exclusive from one another and are contemporaneous with individuals having personal views on whether an existing relationship evolves into that of a carer. This will be guided by many factors, including life experience and individual beliefs and values. It is important to take account of perceptions of what being a carer means (to an individual) and what the role entails, as these may vary with cultural and religious expectations (Greenwood et al. 2015). To add further confusion there is no simple definition of what constitutes a ‘family’. Historically this would be determined by a genetic connection with others but ‘family’ can have a broader meaning and may include other relationships including relatives by marriage, friends, neighbours, etc. Most families and carers provide care and support for a parent or a spouse, there are more female carers than male, and unpaid carers are more likely to devote time to close relatives, such as their parents or their spouse. Yet, there is a non-negligible proportion of carers who also report helping a friend or neighbour, or taking care of other relatives such as brothers/ sisters or aunts/uncles…male carers are more likely to be taking care of their spouse rather than other relatives. (Colombo et al. 2011)

Having a better understanding of such fundamental issues enables professionals to increase the identification of an engagement with carers, expediting access to timely and appropriate support that may reduce the negative impact of caring and improve quality of life for the families, carers and person with dementia.

Impact of caring For many, caring can be a very rewarding experience that can strengthen family bonds through the close and intimate relationship shared

Supporting Families and Carers

(Alzheimer’s Research UK 2015), but this is not the case for all – so professionals must not assume that it is a role they wish to continue with or feel prepared for, confident and competent to carry out. Carers often feel ill-equipped to manage the complex needs of the person they care for as they often assume the role with no understanding of dementia or its effects on both themselves, and the person they care for. Experienced professionals can find caring for those with dementia challenging yet there are often sweeping assumptions made about a family’s ability to cope even though they may have no support or guidance. Families and carers are often described as the invisible second patients – critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of perceived burden and psychological morbidity as well as social isolation, physical ill-health and financial hardship (Brodarty and Donkin 2009). The Princess Royal Trust for Carers (2011) found that: • Carers aged 60–64 experience the most financial difficulty, often juggling work with caring responsibilities for more than one person. • The majority of older carers report caring for 60 or more hours a week – particularly those carers aged 70 or over. • Two-thirds of older carers have long-term health problems or a disability themselves. Commonly reported conditions are arthritis and joint problems, back problems, heart disease, cancer and depression. • One-third of older carers reported having cancelled treatment or an operation they needed due to their caring responsibilities. • Half of all older carers reported that their physical health had got worse in the last year, and seven in ten said caring had had a negative impact on their physical health. • More than four in ten older carers said their mental health had deteriorated over the last year. • Over three-quarters of carers ages 60–69 said caring had a negative impact on their mental health. • Fewer than half of carers aged 70 and over feel confident and safe when having to move or lift the person they care for.

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• More than eight out of ten older carers have worries for the future, about what will happen to the person they care for if they can no longer manage. • More than one-third do not get breaks away from caring, and a further third get a break only once every 2–3 months or less. The average age of family carers is between 60 and 65 years, with many being much older due to many carers of dementia being a spouse or partner. Caring for someone with dementia is thought to be more burdensome than for those people caring for someone affected by other types of illness or disability, because of the complex, unpredictable and progressive nature of the illness. Carers of people with dementia are likely to have higher levels of stress and report higher levels of depression than carers of other older people (Wills and Soliman 2001; Newbronner et al. 2013).

Relevance to practice It is clear from the evidence that the impact of caring for someone with dementia can have significant consequences for families and carers. The carer role and responsibilities, and therefore their needs, may be constantly evolving and changing given the progressive deterioration of the person with dementia. These needs are in constant danger of being overlooked as often the professionals’ remit may be to focus primarily on meeting the needs of the person with dementia. Families and carers should be considered as partners in care provision (see Figure 16.1) alongside the person with dementia, as care is delivered in a relational context, so it is vital for professionals to include a carer’s views and needs as part of a thorough holistic assessment.

Figure 16.1: Triangle of Care: partners in care (Carers Trust and Royal College of Nursing 2016). Reproduced with permission from Carers Trust.

Supporting Families and Carers

It may not be in the remit of your role to provide specific interventions to meet the needs of, and improve outcomes for, families and carers of people with dementia. However, having an awareness of their needs and knowledge of local available resources and services to support them should be part of the toolkit that professionals develop. We will explore some of the key issues through some case studies that illustrate the impact that identification of need can have on carers. From the following cases you will see that identifying carer needs does not necessarily mean you have to manage or meet them yourself. Through an awareness of local resources and an understanding of the roles and responsibilities of others you can influence positive change for families and carers of people with dementia.

CASE STUDY: GEORGINA Georgina (71) has been caring for her husband Tom (76) for the past four years. Tom has vascular dementia and experiences periods of acute confusion where he seems unable to recognise his wife or home environment. Georgina currently manages all the practical tasks in the home and prompts Tom with his personal care. He becomes frustrated and accuses Georgina of holding him against his will and says that, when his wife returns, he will report her to the authorities. Georgina presents at the GP surgery with Tom in tears and states she can no longer cope with Tom’s behaviour. The GP can see she is emotionally distressed and experiencing symptoms of depression. Georgina states she loves her husband and she wants to continue to care for him but does not know how to cope as their once loving relationship is becoming fractious. It is clear that she has limited knowledge about vascular dementia and its effects, and believes that her husband is behaving this way on purpose or that she is doing something wrong for him to hurt her this way. The GP refers Georgina to the Admiral Nurse Dementia Support Service and she is offered one-to-one support from an Admiral Nurse (a specialist dementia nurse) who carries out a specialist biopsychosocial assessment of both Georgina’s and Tom’s needs. The Admiral Nurse offers specialist information about Tom’s behaviour and its potential relationship to his diagnosis of vascular dementia, and explores how this has impacted on their relationship. Tom is also offered support from a Community Mental Health Nurse (CMHN) to review and manage his dementia medication.

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Alongside this information Georgina is offered emotional support, strategies and communication tips to better manage both her own, and Tom’s, distress during these incidents. She now understands that Tom is not intentionally aiming to hurt her but that his behaviour is a symptom of his condition. The changes to their relationship are a result of the vascular dementia; this knowledge enables her to feel less upset by his hurtful comments and have a better understanding of how it affects their relationship. Over time with support she becomes more skilled at predicting Tom’s periods of distress and is able to intercept them and minimise the impact. Georgina’s mood improves as her confidence and competence in her caring role improves and she acknowledges the changing relationship with her husband. As a result they are both able to experience a more positive relationship and improved quality of life.

As you will see in this case the GP does not directly meet Tom’s and Georgina’s needs but assesses and identifies them and refers to the resources that best support Georgina and Tom. If the GP had not acknowledged Georgina’s carer distress this situation might have continued and escalated to a crisis situation of breakdown of care leading to Tom requiring a 24hour care placement. Similarly, Tom might have received support from the CMHN resolving some of his short-term issues but this would not have addressed some of the underlying problems that were impacting on Georgina’s health, relationships and capacity to care for Tom.

CASE STUDY: SYLVIA Jack has been an inpatient on an acute hospital ward following a fall; he also has a diagnosis of dementia with Lewy bodies. His wife, Sylvia, visits him daily from their home 17 miles away. Sylvia does not drive so has to take three buses each way to get to visit him. An occupational therapist on the ward has struck up a positive relationship with Sylvia, and Sylvia tells her how thankful she is that she has a bus pass; otherwise she would not be able to afford to visit Jack. She also mentions that she needs to advise the Department of Work and Pensions that Jack is in hospital as his benefits may need to be stopped. At this point Sylvia becomes tearful and discloses that if the benefits stopped she would only have £60 income and that she is finding managing their finances difficult. Jack had always provided for them both financially and managed all the bills but Sylvia has

Supporting Families and Carers

now had to take over. Sylvia finds this new role difficult and feels embarrassed and ashamed that she is unable to pay some of the bills as she has had to find money to pay for Jack’s incontinence aids. Jack still has mental capacity in relation to some areas of their finances but has had several spells of ill-health recently which has led to Sylvia taking on more of the responsibility. The occupational therapist immediately sees areas that can be addressed to support Sylvia and Jack. She refers Jack for a continence assessment as she believes he should be entitled to continence aids on prescription. The occupational therapist is aware that the local Age UK offer information and advice on benefits and finances, and she asks Sylvia if she would be willing to consider getting some advice and offers Sylvia contact details for self-referral. An Age UK worker meets Sylvia in a matter of days and advises of several ways in which they can help: Jack should be eligible for an Attendance Allowance and Council Tax reduction; they suggest making Lasting Powers of Attorney for them both; they arrange for a volunteer to support Sylvia in setting up some direct debits for utility bills; and they offer Sylvia a telephone befriender to talk to. As a result Sylvia’s anxiety reduces, improving her wellbeing significantly; their financial situation is also more stable, enabling Sylvia to focus on other aspects of her caring role, and this all directly improves her ability to continue to cope in her caring role for longer.

In this case it would have been very easy for the occupational therapist to have taken the initial conversation at face value and not considered the wider impact on Sylvia, as it was Jack who was her patient. However, this scenario clearly illustrates that communication and engagement with families and carers enables opportunities for making a real difference to the overall situation, and promotes positive outcomes in ways that might not always be obvious. By identifying Sylvia as Jack’s carer during his admission, and in valuing the importance of her wellbeing to enable her to care and support Jack well after his discharge from hospital, the occupational therapist has not only made an immediate difference but has also improved the longerterm outcomes for both Jack and Sylvia.

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CASE STUDY: EDWARD Edward has been the main carer for his wife Victoria for six years, for the last two of which Edward has provided for all her personal care needs himself. Edward has arthritis in his hips and knees and his mobility is impaired as a result; it has been recommended that he requires a hip replacement. Edward has refused surgery, stating that he is fine and can cope. However, he now presents at the GP surgery in significant pain and requesting an increased prescription of his pain medication. The nurse practitioner talks through Edward’s refusal of the hip replacement and discusses the potential causes for this exacerbation in his pain after Edward recounted the level of support he is providing to his wife. The nurse enquires as to whether he would reconsider surgery but he says there is no question of surgery as there would be no one to care for his wife during the hospital stay and then afterwards whilst he recovers. The nurse identifies that he would benefit from some practical support to help him manage his wife’s care needs as it is becoming increasingly difficult for him due to his own physical health problems. The nurse suggests a referral to social services for a Community Care Assessment for Victoria and a Carer’s Assessment for Edward, both of which he agrees to. Following the assessments, the couple receive support in the form of a package of care, and respite options are explored to enable Edward to have his surgery. As a result Edward was able to have his surgery so improving his pain, mobility and physical health. The package of care continues and Edward is able to continue with his caring role more effectively.

In this example it would have been understandable if the nurse had simply reviewed the pain medication, as Edward had requested. However, she used her instinct and skills in communication, engagement and assessment to gain a broader understanding of the interrelating factors that were impacting on Edward’s health. As a result she was able to facilitate Edward to feel able to access the surgery he needed. Had this not been identified Edward would have continued to be in pain and his health would further deteriorate as he tried to manage his wife’s physical care.

Supporting Families and Carers

Conclusion The effects of caring for someone with dementia are well documented. It is important for all health and social care professionals to acknowledge that someone is a carer in any given situation and to take responsibility for this. Having a good understanding of dementia and its effects, and the ability to identify the negative effects of caring for someone with dementia, can only have a positive impact for both the carer and cared for. As human beings we are part of many and varied, sometimes complex, relational circles. We rarely exist in isolation and are all affected by the wellbeing of others around us; this is no different for people with dementia and their carers. The roles of families and carers within the context of dementia care can be complex – their experiences, values and beliefs unique with each case requiring a bespoke approach. Carers’ contributions to the wider community in caring for a person with dementia should not be underestimated and they should be considered as full partners in care. At a time when the health and social care systems are both physically and financially stretched, supporting family carers is sometimes in danger as being seen as ‘an add-on’. However, it not only is best practice but also supports the sustainability of services, as without the significant contribution that families and carers make, the system would be unable to cope with the demand placed upon it.

STOP AND REFLECT Reflect upon your recent interactions with families affected by dementia. Are you able to identify those in a caring role whom you may not have acknowledged at the time? Would you change your approach when faced with a similar situation in the future? Can you identify some of the negative effects of caring within your personal interactions or within the case studies above? Do you know what resources are available in your local/practice area to support families, carers and people with dementia? Spend some time researching available information, resources and services that you can refer to and advise families and carers on, as part of your own toolkit. (Make sure you update this regularly as services come and go but keep a note of key ‘go to’ organisations and professionals from whom you can get advice and information.)

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References Alzheimer’s Research UK (2015) Dementia in the Family: The Impact on Carers. www. alzheimersresearchuk.org/wp-content/uploads/2015/12/Dementia-in-the-Family-Theimpact-on-carers.pdf (Accessed 2 Jan 2018). Brodarty, H. and Donkin, M. (2009) Family caregivers of people with dementia. Dialogues in Clinical Neuroscience. 11: 217–228. Carers Trust and Royal College of Nursing (2016) The Triangle of Care Carers Included: A Guide to Best Practice for Dementia Care. London: Carers Trust. Carers Trust (2017) What is a Carer? https://carers.org/what-carer (Accessed 29 Dec 2017). Colombo, F., Llena-Nozal, A., Mercier, J. and Tjadens, F. (2011) Help Wanted? Providing and Paying for Long-Term Care. OECD Health Policy Studies, OECD Publishing. www. oecd.org/els/health-systems/47884865.pdf (Accessed 29 Dec 2017). Dementia Action Alliance (DAA) (2014) The Carers’ Call to Action. www.dementiaaction. org.uk/assets/0000/8675/DAA_The_Carers__Call_to_Action_Feb_2014.pdf (Accessed 29 Dec 2017). Greenwood, N., Habibi, R., Smith, R. and Manthorpe, J. (2015) Barriers to access and minority ethnic carers’ satisfaction with social care services in the community: a systematic review of qualitative and quantitative literature. Health and Social Care in the Community. 23(1): 64–78. Newbronner, L., Chamberlain, R., Borthwick, R., Baxter, M. and Glendinning, C. (2013) A Road Less Rocky – Supporting Carers of People with Dementia. London: Carers Trust. Prince, M., Knapp, M., Guerchet, M., McCrone, P., Prina, M., Comas-Herrera, A., et al. (2014) Dementia UK. Second edition. London: Alzheimer’s Society. www.alzheimers. org.uk/download/downloads/id/2323/dementia_uk_update.pdf (Accessed 13 Feb 2018). Princess Royal Trust for Carers (2011) Always On Call, Always Concerned: A Survey of the Experiences of Older Carers. https://carers.org/sites/files/carerstrust/always_on_call_ always_concerned.pdf (Accessed 2 Jan 2018). Wills, W. and Soliman, A. (2001) Understanding the needs of the family carers of people with dementia. Mental Health Review Journal. 6(2): 25–28.

Chapter 17

Supporting People Living with Dementia and Complex Health Needs Frances Bunn, Claire Goodman and Cheryl Holman

Learning objectives By the end of this chapter you will: • Recognise that people living with dementia often have other unrelated health care needs. • Understand what is meant by multimorbidity and frailty. • Be aware of the way dementia may impact on the management of other health conditions. • Appreciate the challenges associated with delivering person-centred care for people with dementia and comorbid health conditions.

Introduction Old age is the main risk factor for (but not cause of) dementia, and as such many people with dementia will have other health problems. These may be conditions associated with old age or those that they have lived with for some time (Barnett et al. 2012; Bunn et al. 2014). In many cases they will have multiple long-term conditions, such as diabetes, heart disease and chronic obstructive pulmonary disease, in addition to their dementia (Guthrie et al. 2012). For nurses, the presence of dementia can complicate the provision of care for other health needs. In this chapter we will provide an overview of what is known about multimorbidity and frailty in people with dementia, and consider current issues around providing health care for people with dementia and complex health needs. This will include the organisation of care, management of 223

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comorbid conditions in people with dementia, hospital care, the role of unpaid family carers, and prevention.

Dementia, multimorbidity and frailty Comorbidity refers to the presence of more than one distinct condition in one individual (Feinstein 1970). Definitions tend to presuppose that one disease is assuming a central place. Comorbid conditions in people with dementia are likely to be those that are common in older people such as coronary heart disease, diabetes, hypertension, chronic obstructive pulmonary disease, heart failure, depression, arthritis and cancer (Hoffmann, Jansen and Glasziou 2018). Multimorbidity is the cooccurrence of multiple chronic or acute diseases and medical conditions within one person. One condition is not necessarily more central than the other. The term captures multiple, potentially interacting medical and physical conditions (Boyd and Fortin 2010). On average, people with dementia have 4.6 chronic illnesses in addition to their dementia (Guthrie et al. 2012). In addition, delirium, infections, falls, urinary and faecal incontinence, constipation and epilepsy occur more frequently in people with dementia (see Chapter 18). Another important concept to consider for older people with dementia is that of frailty. Frailty has been characterised as a cumulative decline in many physiological systems during a lifetime. It is linked to, but not the same as, ageing. In people aged over 85, a quarter to a half are estimated to be frail (Song, Mitniski and Rockwood 2010). This agerelated decline leaves older people vulnerable to minor stressor events or sudden changes to health status such as an infection, minor surgery or a new drug therapy. It also puts them at increased risk of falls, disability, long-term care and death (Clegg et al. 2013). Whilst multimorbidity and frailty are often interrelated they are distinct conditions. Not all people with multimorbidity will be frail and not all people considered frail will have multimorbidity. One of the most widely used frailty measures is the Rockwood Clinical Frailty Scale (Rockwood et al. 2005). The categories of the Rockwood Scale are based upon levels of physical dependency from fully fit through to terminally ill and bed bound. The stage of dementia is also factored into the Frailty Scale, from mild through to severe.

Dementia and Complex Health Needs

Organisation and management of care for people with dementia and complex needs Access to care for people with dementia and complex needs People with dementia are less likely than people without dementia to receive equivalent care for similar health conditions and experiences. For example, they may have poorer access to monitoring and treatment for conditions such as vision impairment and diabetes (Bunn et al. 2016). They may also experience more pain and have poorer end-of-life care than people without dementia. There are several reasons for this. • People with dementia may be less likely to attend regular appointments or to notice or report relevant symptoms than people without dementia. This is particularly a problem for people without family members or friends to help manage their care. • Problems and symptoms may be wrongly attributed to the dementia rather than to other physical causes. For example, people with dementia who develop diabetes may appear to have a worsening of their dementia because symptoms of diabetes, such as confusion due to elevated blood glucose or incontinence, are wrongly thought to be a result of the dementia (Hill et al. 2013). Likewise, visual and hearing impairment may go unnoticed in people with dementia. • Assessment is more difficult and requires professionals to give more time to the process, for example, using alternative methods of testing sight and hearing that do not rely on a person’s ability to follow detailed instructions. It may also require the input of a family carer or supporter who knows the person well. • Physical symptoms may be overshadowed by the behavioural and psychological symptoms associated with dementia. • Assessing the risk and benefits of treatment options for people with dementia is complex and involves the consideration of issues such as compliance, consent and the appropriateness of treatment for older people with dementia. In addition, people with dementia and multimorbidity are at a disadvantage when models of care tend to focus on single diseases only. For example, pathways and guidance for conditions such as diabetes or stroke tend not to address the possibility of a dementia diagnosis (Bunn

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et al. 2016). Moreover combining treatment recommendations for patients with multimorbidity may be inappropriate as it can result in harmful or burdensome treatment regimens and inappropriate polypharmacy (Guthrie et al. 2012).

Continuity of care People with dementia and complex health needs are likely to receive advice and support from a variety of different health and social care professionals as well as third-sector providers (charities). Continuity of care is particularly important for people with dementia and their family as their experience of support is often fragmented and relies on referrals across organisations and contacts with multiple professionals. Continuity is the degree to which different health care events are experienced as coherent and connected and consistent with the patient’s needs and preferences (Haggerty et al. 2003). For example, does the person with dementia have ongoing relationships with health care professionals who know their health history and how they are supported to live at home, and is their information reliably transferred between health care providers? A long-term trusting relationship with a health care professional facilitates a person-centred approach to care that prioritises and values the patient’s subjective health experiences (Bunn et al. 2015, 2016). Freeman and colleagues have identified three main aspects of continuity: relationship continuity, management continuity and informational continuity. These are detailed further in Box 17.1 (Freeman et al. 2007). Box 17.1: Definitions of the different aspects of continuity of care • Relationship continuity: the continuous therapeutic relationship with one or more health professional over time. The relationship might be established with a single provider or with a team. • Management continuity: the processes involved in coordinating, integrating and personalising care. • Informational continuity: record keeping, the transfer of information and the timely availability of information for people with dementia, their family carers and the health care professionals looking after them.

Dementia and Complex Health Needs

A variety of models of care have been proposed to improve continuity and promote integration of care, one of which is case management. In this approach a case manager co-ordinates care between professionals, liaises between primary and secondary care and utilises evidence-based pathways to address both physical and psychosocial needs. Case managers can come from a variety of health and care backgrounds but nurses working in advanced practice roles may be particularly well placed to be case managers for people with complex long-term conditions (Iliffe et al. 2017). This may be because they have the skills to perform the broad range of tasks associated with the role (Blackhouse et al. 2017; Bunn et al. 2015).

Involving people with dementia in self-management The main approach to the management of most long-term conditions revolves around self-management that focuses on the attitudes and self-efficacy of the patient. For people with dementia it is desirable to support self-care for as long as possible, especially if they were already managing their condition prior to receiving a diagnosis of dementia. Whilst there is limited evidence on the best interventions to encourage self-management in people with dementia, studies have shown that it is important to promote confidence and a sense of control for people with dementia. This might involve focusing on independence and functional ability rather than a purely clinical focus on managing or treating medical symptoms (Bunn et al. 2017). To do this requires an understanding of the individual’s abilities, their biography and their values. Assistive devices such as memory aids, diaries and dosette boxes can help people with dementia self-manage medication and treatment regimens, such as exercises. However, capacity for self-management will diminish as their dementia progresses. For example, in people with diabetes, having dementia impacts on their ability to understand their condition and undertake self-care tasks such as managing medication and monitoring blood sugar (Bunn et al. 2017). As a person with dementia becomes unable to manage their own condition it frequently falls to family members or health care professionals to take on these tasks. This transition from self-management to shared management with a carer can be a difficult process for both the person with dementia and their carer. This is illustrated in the following case study.

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CASE STUDY: MARTHA Martha is a 76-year-old insulin-dependent diabetic who was diagnosed with dementia several years before. She had managed her diabetes since she was a teenager, but the dementia was having an increasing effect on her diabetes management with more episodes of her forgetting to eat or not noting when she had her last injection. Her daughters, Julia and Mary, were worried that she was not taking her medication properly. After a severe hypoglycaemic attack she was hospitalised. In hospital her dementia worsened and on discharge she was no longer able to manage her medication. One of her daughters, Mary, moved in with her and took over responsibility for Martha’s medication as well as for her day-to-day care. However, Mary felt out of her depth, disliked having to give injections and feared making mistakes. Although Mary received some telephone support from diabetes nurses, she did not feel that this was adequate.

STOP AND REFLECT Consider what good care might look like for Martha and her daughters.

In the above case it would have been helpful for a community nurse to visit and talk through with Mary and her mother about how their routines had changed. It would be important to: • Consider what Martha can still do for herself and the different ways she can still participate in decision making about her care. Do any of the routines she had used to manage her diabetes still work for her? • Consider what advice and information Mary needs about managing diabetes – for example food choices, blood tests and timing injections. • Observe Mary’s injection technique and reassure her that she is doing it correctly. • Ensure Mary can recognise signs of hypoglycaemia and knows what actions she should take. • Find out how Mary feels about taking on caring responsibilities and whether she has applied for financial support (e.g. Attendance Allowance).

Dementia and Complex Health Needs

• Consider how Martha and her daughters might be supported in the long term. For example, who should Mary contact if she has any concerns or difficulties, or Martha’s behaviours or symptoms change?

Managing medication in people with dementia Many long-term conditions require regular medication. Medication management becomes more difficult for people with dementia and they are particularly vulnerable to medication errors and adverse events. In addition to cognitive impairment, issues such as sensory impairment, reduced dexterity (due to conditions such as arthritis, physical disability and/or depression associated with long-term conditions) and swallowing difficulties may all impact on the ability of an older person with dementia to manage their medications. Moreover, older people may be at higher risk of toxic effects of medication because of altered renal and liver function. As such the necessity, benefits and risks of medication use in an individual may change as they get older (Reeve et al. 2016). Polypharmacy not only impacts on the person with dementia but also frequently affects family members; many people with dementia depend on help with medicines from family members. There is evidence that much caregiver burden is attributable to medicine-related tasks and concerns (Bunn et al. 2017). It should be remembered that although the presence of a family carer is likely to improve medication management it is not necessarily a safeguard against medication errors. For older people with dementia and complex health needs there is a need to consider quality of life, independence, patient and carer priorities, and the capacity of patients and their family carers to attend to health demands, such as medication management. Treatment regimens may need to be simplified for people with dementia. If not handled properly, changes to medication may be stressful and confusing for people with dementia. This is shown in the case study below.

CASE STUDY: CLARA Clara is a 92-year-old woman with type 1 diabetes and Alzheimer’s disease. She lives alone but has the support of her daughter, Janet, who lives a long distance away. Janet finds it difficult to manage and co-ordinate her mother’s health care from a distance. On several occasions changes have been made to Clara’s care without informing Janet. For example, one GP made changes to Clara’s medication that

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she was unable to cope with. On another occasion the district nurse issued a new blood-testing kit to Clara but did not leave written instructions to inform the family of its use. Clara was unable to use the kit and the family could not get in touch with the surgery for help as it was closed for four days over the Easter break.

The case study demonstrates the importance for health care professionals of assessing how a person’s dementia affects their ability to assimilate change and new instructions. It also signals the need to consider family carers as valued partners, even when they are not co-located.

Support for family carers of people with dementia who have complex health needs The use of unpaid care by people with dementia and complex health needs is substantial and has increased over the last decade. People with dementia and a comorbid health condition are more likely to rely on unpaid care than those with the same health condition but without dementia (Bunn et al. 2016). The prevalence of psychological distress, such as depression and anxiety, is high in family carers of people with dementia. This is particularly true when carers are dealing with the impact on care routines of any accompanying behavioural and psychological symptoms of dementia. In such cases even relatively straightforward care, for example helping someone to go to the toilet, may become difficult. Moreover, many carers are themselves older and have health problems of their own including long-term conditions. Carers invariably play a significant role in co-ordinating and managing their family member’s care and in facilitating continuity. For example, they are often involved in facilitating the transfer of information between different services and different health care professionals. Despite this there is evidence that they often receive inadequate support in planning and managing their relatives’ care, and are often excluded from decision making (Bunn et al. 2012). Nurses should be aware of the importance of relationship-centred care that acknowledges the role of dementia care triads, comprising the person with dementia, their family carer and the health and social care professional (see Chapter 16). This has been called ‘the Triangle of Care’. This model (Hannan et al. 2013) describes a therapeutic relationship between people with dementia, staff members and carers. The aim of this approach is to promote safety, support communication and sustain wellbeing for the person with dementia and

Dementia and Complex Health Needs

their family carer(s). Originally developed for mental health service users, the model has been adapted to meet the needs of people with dementia in acute hospital. The concept of the Triangle of Care (see Box 17.2) requires that nurses are willing to collaborate, and engage, with the person with dementia and the family carer, and involve the latter in decisions about the care and treatment for their relative with dementia. Box 17.2: The six key standards of the ‘Triangle of Care’ model (Hannan et al. 2013). 1. Carers and the essential role they play are identified at first contact or as soon as possible thereafter. 2. Staff are ‘carer aware’ and trained in carer engagement strategies. 3. Policy and practice protocols regarding confidentiality and sharing information are in place. 4. Defined post(s) responsible for carers are in place. 5. A carer introduction to the service and staff is available, with a relevant range of information across the care pathway. 6. A range of carer support services is available.

Hospital care for people with dementia and complex health needs Estimates of the prevalence of people with dementia in hospital vary but it is suggested that at any one time up to 25 per cent of patients in hospital may have dementia (Jackson et al. 2017). Dementia is rarely the primary reason for admission to hospital, and patients with dementia commonly have comorbid conditions (see also Chapter 23). Once admitted to hospital, patients with dementia are likely to experience longer stays and more adverse events, including falls, poor hydration and nutrition, infections and the onset of delirium, than similar patients without dementia (see also Chapter 18) (Mukadam and Sampson 2011). Moreover, people with dementia and comorbidity are likely to require more nursing staff time than other patients and may exhibit behaviours that staff may find challenging. The assessment and management of health conditions may be complicated by difficulties with cognition and communication. For example,

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someone with dementia and diabetes may be unable to communicate to nurses that they are experiencing low blood sugar. Confusion and agitation may be misinterpreted as signs of dementia rather than being related to issues such as hypoglycaemia or pain. Providing care for people with dementia is complex, requiring a high level of interpersonal skills. Nurses need to be able to understand the abilities of the patient and provide support appropriate to these abilities. They also need to be able to interpret the patient’s non-verbal behaviour, recognise their changing needs and respond appropriately (see also Chapter 6) (Handley, Bunn and Goodman 2017).

CASE STUDY: DENNIS Dennis is an 82-year-old man who lives at home with his 80-yearold wife, Ruth. He has vascular dementia and several comorbid conditions including chronic obstructive pulmonary disease (COPD) and hypertension. Dennis came to the emergency department after being found on the floor after a fall. He is admitted because he is complaining of pain in his hip and is unsteady on his feet. He has not had his bowels open recently. Once on the ward, the nursing staff try to restrict Dennis to the bed and chair because they are worried that he will fall again. Ruth is upset because she says that Dennis’s confusion is worse than usual. He has become agitated and restless, shouting out for help repeatedly.

STOP AND REFLECT What factors might be contributing to Dennis’s confusion? Think about individual and environmental factors. How could the nurses and care staff get to know Dennis and his wife? How might this help?

In the case above, Dennis has been exposed to two unfamiliar environments – the emergency department and the hospital ward. These environments may be noisy, confusing and frightening for someone with dementia. He has also been exposed to many unfamiliar people and may be distressed, and in addition the staff are trying to confine him to his bed or chair for which he does not understand the rationale. It is also worth considering that he may also have delirium in addition to his dementia. People with dementia are at increased risk of delirium (NICE 2010) (see Chapter 18).

Dementia and Complex Health Needs

Models of care in hospital A number of initiatives have been developed to improve the care of older people with dementia in acute hospitals, including liaison psychiatric services (Holmes et al. 2010) and specialist units that combine medical and mental health care for older people (Goldberg et al. 2013). It is not yet clear which the best approach is. Moreover, even if some people with dementia are cared for in specialist dementia units, many are likely to be admitted to other types of wards. For example, a person with dementia being admitted after a stroke may need to be in an acute stroke unit, or a person undergoing surgery for cataracts on an ophthalmology ward. It is clear therefore that there is a need for nursing staff to be more aware of the needs of people with dementia. Staff education and training has been another approach used to improve dementia care in hospitals. Whilst this is important, it needs to be reinforced and supported by a culture of working that recognises and values person-centred care even when there are competing pressures for staff time. A recently completed study found that nursing staff often underestimated the skills and knowledge they needed to provide effective dementia care to their hospital patients. Staff did not always know how to talk to someone with dementia, overlooked opportunities to reorientate and reassure patients and failed to anticipate activities and procedures that patients with dementia may find alarming (Handley 2018).

Prevention of dementia, frailty and long-term conditions There is a well-established link between some common lifestyle behaviours and physical and mental health, with evidence that behaviours such as smoking, drinking, lack of exercise and poor diet can increase the risk of dementia, disability and frailty. The National Institute for Health and Care Excellence (NICE) guidance on mid-life approaches to preventing dementia, disability and frailty in later life puts an emphasis on reducing behaviours that increase the risk of these conditions, and reducing the incidence of long-term conditions that can contribute to disability and frailty (such as cardiovascular disease, diabetes and chronic obstructive pulmonary disease). This includes health promotion activities aimed at reducing smoking and alcohol consumption, increasing physical activity and improving diet (NICE 2015). An epidemiological study conducted in England found evidence of a reduction in the prevalence of dementia in the older population over two decades. The authors suggest that this

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could partly be due to successful primary prevention of heart disease and improved prevention of vascular morbidity (Matthews et al. 2013).

Conclusion The prevalence of comorbid conditions, multimorbidity and frailty in people with dementia is high. At present, access to services may be poorer for many people with dementia and care may often be fragmented. Important considerations for improving health care for people with dementia and complex health conditions include continuity, integration and personalisation. Good care for people living with dementia and comorbidity may vary according to the type of condition(s) that they have. However, key elements include the person with dementia and the family carer at the centre, flexibility around processes, good communication between services, ensuring that all services are aware when someone has a diagnosis of dementia, considering the impact of a diagnosis of dementia on pre-existing conditions, and incorporating these into guidelines and care planning. The role of family carers in managing health care conditions of people with dementia, and their contribution in facilitating continuity and access to care, are indisputable. It is important, therefore, that nurses and other health care professionals conceptualise the provision of care for people with dementia and a comorbidity as a complex phenomenon that affects not just individuals but also dyads and families.

References Barnett, K., Mercer, S.W., Norbury, M., Watt, G., Wyke, S., Guthrie, B. et al. (2012) Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. The Lancet. 380 (9836): 37–43. Blackhouse, A., Ukoumunne, O.C., Richards, D.A., McCabe, R., Watkins, R. and Dickens, C. (2017) The effectiveness of community-based coordinating interventions in dementia care: a meta-analysis and subgroup analysis of intervention components. BMC Health Service Research. 17: 717. Boyd, C.M. and Fortin, M. (2010) Future of multimorbidity research: how should understanding of multimorbidity inform health system design? Public Health Review. 32: 451–474. Bunn, F., Goodman, C., Sworn, K., Rait, G., Brayne, C., Robinson, L. et al. (2012) Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies. PLoS Medicine. 9: e1001331. Bunn, F., Burn, A.M., Goodman, C., Rait, G., Norton, S., Robinson, L. et al. (2014) Comorbidity and dementia: a scoping review of the literature. BMC Medicine. 12: 192. Bunn, F., Goodman, C., Pinkney, E. and Drennan, V.M. (2015) Specialist nursing and community support for the carers of people with dementia living at home: an evidence synthesis. Health and Social Care Community. 24(1): 48–67.

Dementia and Complex Health Needs

Bunn, F., Goodman, C., Brayne, C., Norton, S., Rait, G., Robinson, L. et al. (2016) Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem). Health Services and Delivery Research, 4. www.journalslibrary. nihr.ac.uk/__data/assets/pdf_file/0018/162216/FullReport-hsdr04080.pdf (Accessed 30 April 2018). Bunn, F., Goodman, C., Reece Jones, P., Russell, B., Trivedi, D., Sinclair, A. et al. (2017) What works for whom in the management of diabetes in people living with dementia: a realist review. BMC Medicine. 15: 141. Clegg, A., Young, J., Iliffe, S., Rikkert, M.O. and Rockwood, K. (2013) Frailty in elderly people. The Lancet. 381: 752–762. Feinstein, A.R. (1970) The pre-therapeutic classification of co-morbidity in chronic disease. Journal of Chronic Diseases. 23: 455–468. Freeman, G.K., Woloshynowych, M., Baker, R., Boulton, M., Guthrie, B., Car, J. et al. (2007) Continuity of care 2006: What have we learned since 2000 and what are policy imperatives now? London: National Coordinating Center for NHS Service Delivery and Organisation R and D (NCCSDO). Goldberg, S.E., Bradshaw, L.E., Kearney, F.C., Russell, C., Whittamore, K.H., Foster, P. et al. (2013) Care in specialist medical and mental health unit compared with standard care for older people with cognitive impairment admitted to general hospital: randomised controlled trial (NIHR TEAM trial). British Medical Journal. 347: f4132. Guthrie, B., Payne, K., Alderson, P., McDurmo, M.E. and Mercer, S.W. (2012) Adapting clinical guidelines to take account of multimorbidity. British Medical Journal. 345: e6341. Haggerty, J.L., Reid, R.J., Freeman, G.K., Starfield, B.H., Adair, C.E. and McKendry, R. (2003) Continuity of care: a multidisciplinary review. British Medical Journal. 327: 1219–1221. Handley, M. (2018) Understanding what supports dementia-friendly environments in general hospital settings: a realist evaluation. PhD thesis, University of Hertfordshire. Handley, M., Bunn, F. and Goodman, C. (2017) Dementia-friendly interventions to improve the care of people living with dementia admitted to hospitals: a realist review. BMJ Open. 7: e015257. Hannan, R., Thompson, R., Worthington, A. and Rooney, P. (2013) The Triangle of Care Carers Included: A guide to best practice for dementia care. www.rcn.org.uk/__data/ assets/pdf_file/0009/549063/Triangle_of_Care_-_Carers_Included_Sept_2013.pdf (Accessed 30 April 2018). Hill, J., Hicks, D., James, J., Vanterpool, G., Gillespie, C., Fox, C. and Sinclair, A. (2013) Diabetes and dementia guidance on practical management, training, research and education for nurses in diabetes and institute of diabetes in older people. BMC Medicine. 12: 192. Hoffmann, T., Jansen, J. and Glasziou, P. (2018) The importance and challenges of shared decision making in older people with multimorbidity. PLoS Medicine. 15: e1002530. Holmes, J., Montana, C., Powell, G., Hewison, J., House, A., Mason, J. et al. (2010) Liaison Mental Health Services for Older People: A literature review, service mapping and indepth evaluation of service models. Produced for the National Institute for Health Research Service Delivery and Organisation programme. Iliffe, S., Wilcock, J., Synek, M., Carboch, R., Hradcova, D. and Holmerova, I. (2017) Case management for people with dementia and its translations: a discussion paper. Dementia (London). doi: 10.1177/1471301217697802. Jackson, T.A., Gladman, J.R., Harwood, R.H., MacLullich, A.M., Sampson, E.L., Sheehan, B. et al. (2017) Challenges and opportunities in understanding dementia and delirium in the acute hospital. PLoS Medicine. 14: e1002247.

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Matthews, F.E., Arthur, A., Barnes, L.E., Bond, J., Jagger, C., Robinson, L. et al. (2013) A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. The Lancet. 382: 1405–1412. Mukadam, N. and Sampson, E.L. (2011) A systematic review of the prevalence, associations and outcomes of dementia in older general hospital inpatients. International Psychogeriatrics. 23: 344–355. NICE (2010) Delirium: prevention, diagnosis and management. www.nice.org.uk/guidance/ cg103 (Accessed 30 April 2018). NICE (2015) Disability, dementia and frailty in later life: mid-life approaches to prevention. Public Health Guidance. www.nice.org.uk/guidance/ng16/chapter/1Recommendations (Accessed 30 April 2018). Reeve, E., Denig, P., Hilmer, S.N. and Ter Meulen, R. (2016) The ethics of deprescribing in older adults. Journal of Bioethical Inquiry. 13: 581–590. Rockwood, K., Song, X., Macknight, C., Bergman, H., Hogan, D.B., McDowell, I. et al. (2005) A global clinical measure of fitness and frailty in elderly people. Canadian Medical Associateion Journal. 173: 489–495. http://geriatricresearch.medicine.dal.ca/ pdf/Clinical per cent20Faily per cent20Scale.pdf (Accessed 30 April 2018). Song, X., Mitniski, A. and Rockwood, K. (2010) Prevalence and 10-year outcomes of frailty in older adults in relation to deficit accumulation. Journal of the American Geriatrics Society. 58: 681–687.

Further reading and resources NICE (2010) Delirium: prevention, diagnosis and management. NICE Clinical Guidance CG103. www.nice.org.uk/guidance/cg103. NICE (2016) Multimorbidity: clinical assessment and management. NICE Guideline NG54. www.nice.org.uk/guidance/ng56. Social Care Institute for Excellence. (2015) Care providers improvement support, dementia. www.scie.org.uk/dementia (Accessed 20 April 2018). Royal College of Nursing (2012) Dementia: Commitment to the care of people with dementia in hospital settings. www.rcn.org.uk/professional-development/publications/pub004235 (Accessed 30 April 2018).

Chapter 18

Delirium and Dementia Angela Moore

Learning objectives By the end of this chapter you will: • Have an awareness of the prevalence of dementia and delirium in acute hospital care. • Understand the causes of delirium. • Be able to reflect on your level of knowledge of delirium. • Understand the importance of and need for early diagnosis of delirium in dementia. • Recognise the needs of family carers of people with dementia in the acute hospital setting.

Introduction Detecting delirium can be challenging for both nursing and medical staff as older people admitted into acute hospital care may also have other multiple morbidities that can confound their presentation. Most of the burden of delirium is in acute hospitals though its prevalence is closely related to high levels of frailty and prior cognitive impairment (Hogg 2013). Delirium is often poorly detected in this group of people and can result in almost half of cases being undiagnosed (Young 2008). Nurses are at the bedside and are often the first health professional to observe changes in a patient’s functional and mental status. When patients with a known diagnosis of dementia experience an acute change in their presentation it may be misattributed to changes in their dementia (Fick et al. 2007). Therefore, it is essential that staff are supported to develop their clinical skills and knowledge to enable a timely and accurate diagnosis of delirium. Delirium is a serious condition that is associated with poor outcomes. However, it can be prevented and treated if dealt with in a responsive way and with urgency (NICE 2010). 237

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Definition of delirium There are differing views of the definition and classification of delirium across diagnostic manuals (Sepulveda et al. 2016) but essentially there are four elements that underlie a delirium. First, there must be a disturbance in consciousness; second, this disturbance is acute (usually evolving over hours and days) and tends to fluctuate; third, there must be changes in other cognitive, perceptual or emotional areas (e.g. memory impairment or psychotic features); and finally these changes are due to an underlying acute physiological disturbance (often medical, surgical, anaesthetic or medication related) (Davis et al. 2013). The main aim is to determine the underlying physiological disturbance, bearing in mind that there may be more than one contributing cause. It may be safer to err on the side of caution and assume that a crisis or acute change may be due to a delirium but also to balance this with the issue of acute hospital admission and environmental change, which can also exacerbate a delirium.

Causes of delirium The simplest approach to managing delirium is to identify the underlying cause and to treat it. If delirium is a secondary response to a physical illness, injury or drug then speedily identifying any causative link is essential. Diagnosis of delirium amongst an older population with multiple co-morbidities can be challenging and requires knowledge and experience but above all a thoroughness in assessment, seeking the most common and/or serious causes first (see Table 18.1 for the risk factors for developing delirium). It is worth noting that there may be more than one precipitant. Table 18.1: Risk factors for delirium (NICE 2010) Risk factors Age

Deafness

Frailty

Polypharmacy

Severe illness

Surgery

Dementia

Alcohol excess

Infection

Hip fracture

Dehydration

Renal impairment

Visual impairment

Pain

Urinary tract infection/retention

Electrolyte imbalance such as dehydration, acute renal failure, high or low sodium levels

Constipation

Delirium and Dementia

Delirium and dementia Dementia and delirium are considered to be one of the most common causes of cognitive impairment in acute hospital settings, affecting 11–42 per cent of older adults admitted to acute care, and should be considered as a medical emergency (Fong et al. 2015; González et al. 2009). Additionally, between 6 and 56 per cent of older adults may go on to develop delirium during an acute hospital admission. Delirium is often poorly managed where there is a pre-existing diagnosis of dementia, often resulting in sub-optimum outcomes (Young 2008); furthermore, the National Institute for Health and Care Excellence (NICE) (2010) suggest that up to 30 per cent of cases of delirium may be prevented. For people living with dementia the risk of developing delirium is up to five times higher than in the cognitively intact; this carries an increased risk of morbidity for older patients with multimorbidity (Todd et al. 2017). Despite this, diagnosing delirium in patients with dementia is poor, even given that we know that almost 50 per cent of those hospitalised are likely to have a delirium. Therefore it is important that you ensure that care delivered to this group of patients uses a person-centred multidisciplinary approach (Rahman and Howard 2018). Dementia is a significant risk factor for developing delirium; delirium that is present in people with an existing diagnosis of dementia is referred to as delirium superimposed on dementia (DSD). This diagnosis brings increased risk of acceleration of both cognitive and functional decline which may also include re-hospitalisation, transition into residential or nursing care and increased mortality (Fong et al. 2015). Diagnosing delirium superimposed on dementia may be challenging as the signs of delirium may be mistaken for the changes in cognitive function and psychological symptoms of people living with dementia (Morandi et al. 2012).

The 3 Ds: delirium, dementia and depression Delirium, dementia and depression can often coexist in frail older adults and are often referred to as the 3 Ds. It is worth considering that many patients with dementia may present with delirium and/or depression (Mandebuvu and Kalman 2015). It is important that you are able to recognise and understand some of the main differences in each of their presenting features. What is critical is that when the 3 Ds do coexist, the priority is always to treat the delirium first and then consider how you can support depressive symptoms and changes relating to dementia. The information in Table 18.2 will support you with making a differential diagnosis (Harris 2017).

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Table 18.2: Differentiating between dementia, delirium and depression (the 3 Ds) Depression

Delirium

Dementia

Definition

A change in mood which lasts at least two weeks and includes sadness, negativity, loss of interest and pleasure and/or decline in functioning.

Delirium is sudden onset due to an underlying illness. It is common for people admitted to hospital. People are more at risk if over 65. Cause is usually reversible.

Onset is usually slow and gradual with uncertain beginning point. It can start with memory problems but can involve difficulties with thinking, communicating, planning and carrying out everyday tasks.

Duration

At least six weeks, but can last several months to years, especially if not treated.

A few hours to days for some patients; may last for several months dependending on speed of diagnosis and level of comorbidities.

Chronic decline in cognitive status which develops over several years.

Thinking

May be indecisive; thoughts highlight failures and a sense of hopelessness.

Fluctuates between rational state and disorganised, distorted thinking with incoherent speech.

Gradual loss of cognition and ability to problem solve and function independently. Level of consciousness is usually unimpaired until dementia has become severe.

Mental status/ cognitive ability

Capable of giving correct answers

Testing may vary from poor to good depending on time of day and fluctuation in cognition. Orientation to time and place varies.

Will attempt to answer and will not be aware of mistakes. Impaired orientation to time and place.

Memory

Generally intact, though may be selective. Highlights negativity.

Recent and immediate memory impaired.

Inability to learn new information or to recall previously learned information.

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Sleep– wake cycle

Disturbed, usually early morning awakening.

Disturbed. Sleep– wake cycle is reversed (up in the night, very sleepy and sometimes nonresponsive during the day).

Disturbed. Sleep– wake cycle is reversed (up in the night, very sleepy and sometimes nonresponsive during the day).

Hallucinations and delusions

Can be present in a severe depression. Themes of guilt and self-loathing.

Often of a frightening or paranoid nature.

Can be present. May misperceive. In Lewy body dementia, visual hallucinations are present.

Diagnosis

May deny being depressed but often exhibit anxiety. Others may notice symptoms first. Increased complaints of physical illness. Social withdrawal is common.

Diagnosis based on rapid onset of fluctuating symptoms. Can be mistaken for progression of the dementia.

Must rule out other causes of cognitive decline, e.g. depression, underactive thyroid, Parkinson’s disease delirium.

Screening and diagnosis Diagnosis of delirium, as discussed, is based on the identification of its four core features, which involves a bedside assessment of the patient and collateral history taken from family members. However, during more lucid periods the assessment should also involve self-reporting from the person with dementia. There are a variety of tools available to screen for and support the diagnosis of delirium in dementia. Examples are: • SQiD – the Single Question in Delirium – ‘Do you feel your relative has been more confused lately?’ (Sands et al. 2010). • The 4AT – combines four bedside test of the likelihood of delirium, such as alertness, attention, acute onset and the abbreviated memory test (AMT4) (MacLullich and Hall 2011). • CAM – the Confusion Assessment Method diagnostic algorithm is the most common diagnostic tool and can be used with appropriate training by nursing staff (Inouye et al. 1990). Several versions of the CAM have been developed and validated for use in different care settings; see Table 18.3 for a four-point version of the CAM tool.

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Table 18.3: The Confusion Assessment Method diagnostic algorithm (CAM) (adapted from Inouye et al. 1990) Date of Time of Y/N assessment assessment (circle) Acute onset and fluctuating course? (Acute change in mental status from usual baseline; fluctuating behaviour through the day.)

Y/N

Inattention? (Does the person have difficulty focusing attention? Are they easily distracted? Do they have difficulty keeping track of what is being said?)

Y/N

Disorganised thinking? (Difficulty focusing attention; easily distracted; difficulty keeping track of what is being said.)

Y/N

Altered level of consciousness? (This feature is shown as hyper-alertness, lethargy, stupor or coma.)

Y/N

The diagnosis of delirium by CAM requires the presence of features 1 and 2, and either 3 or 4. Delirium detected?

Y/N

CASE STUDY: SHEILA Sheila is a 74-year-old lady who lives alone and has recently been referred to the memory services after presenting to her GP with concerns about her memory. A diagnosis of Alzheimer’s disease was made. A month later Sheila started to have some other health problems. A few days prior to the hospital admission Sheila reported to her family that she had very little appetite and was finding it difficult to drink. Sheila was usually able to shop for herself locally and prepare her own meals. Sheila’s daughter visited and found her mother confused and disoriented to time and place. Sheila was admitted to acute care and diagnosed with an acute kidney injury (AKI). Nursing staff report that Sheila is withdrawn, sleepy and unable to follow simple conversations. Prior to admission Sheila lived independently with minimal support from others; however, she has a history of recurrent urinary tract infections and constipation, both of which are identifiable causes of delirium.

Delirium and Dementia

STOP AND REFLECT Consider what you know about Sheila and whether you have sufficient information to complete the CAM. Do you have enough information to support a differential diagnosis? What might be causing these changes in Sheila? What events may have led to Sheila’s hospital admission? What discharge advice and support can you offer Sheila and her daughter?

Delirium is common in people living with dementia and may often coexist, which may result in hastening cognitive decline and so increase the level of functional disability (Jackson et al. 2017). As we have discussed, collateral history from family and carers of a person with dementia is essential in developing diagnostic formulation. Asking if they have noticed a sudden deterioration in the person’s level of function, or changes in behaviour or cognitive status, gives invaluable information. Similarly, upon discharge, it is important that you discuss preventative measures and give specific support and advice to Sheila and her family. Consider also that many older people live alone and may have difficulty in alerting others of their ill-health or indeed knowing the warning signs that something is not right. Therefore, nurses have a vital role in supporting people with dementia by being proactive and enabling them to identify any risk factors for delirium and taking steps to minimise such risk.

Subtypes of delirium Hypoactive delirium Hypoactive delirium is predominantly characterised by symptoms of drowsiness and inactivity. This type can be confused with depression. Available data suggests that hypoactive delirium accounts for 50 per cent of cases identified (Hosker and Ward 2017). A failure to recognise delirium or its misdiagnosis is more likely in its hypoactive presentation, where detection failure rates range from 33 per cent to 66 per cent (Franco et al. 2014); hypoactive-type delirium is often overlooked, leading to increased mortality. Hypoactive delirium is associated with reduced arousal and psychomotor retardation and is most often missed as a diagnosis. Lower detection rates may be associated with higher mortality because of the

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resultant failure to detect the underlying, undiagnosed acute illness. Other signs might include: • Poor concentration • Less awareness of surroundings • Reduced mobility/movement • Functional decline • Reduced appetite (Hosker and Ward 2017). Reasons why hypoactive delirium may be missed include: • The person may be isolated and unable to report change in health. • The person may fluctuate between periods of drowsiness and normality. • It may be difficult to obtain an accurate baseline. • The person may also have a diagnosis of dementia. Obtaining a good collateral history of the pre-admission state of the person with dementia from a relative or carer will help you distinguish hypoactive delirium from other causes of behaviour change such as dementia and depression. Remember one of the key features of delirium is a sudden change from the usual baseline function; many professionals often pay more attention to the changes that present a person as agitated, resistive to care, shouting, etc., but sudden changes can also include inactivity, withdrawal, etc. When delirium is experienced during hospitalisation, staff have a responsibility to provide care that is person-centred and sensitive to the older persons’ needs. Essential elements to managing the care and treatment for this group of people is in ensuring adequate fluid intake; if oral fluids are not tolerated consider intravenous or subcutaneous fluids. Delirium management guidelines also recommend that attention to the orientation of the person is important. Orientation strategies include: • Use of orientation aids: calendars, clocks, familiar objects • Ensuring access to glasses and hearing aids • Reducing moves within the hospital environment, that is, move of bed, space or ward

Delirium and Dementia

• Ensuring the environment is calm; avoiding interruptions and high noise levels; having dim lighting if possible • Maintaining routine for medication and observations. During delirium, these all have the potential to improve the quality of care for hospitalised older people (Day, Higgins and Keatinge 2011).

STOP AND REFLECT Consider your own working environment. What environmental and practice measures are available to support patients with delirium? What measures might it be possible for you to implement?

Hyperactive delirium Hyperactive delirium is characterised by restlessness and agitation (NICE 2010). Despite being the least common type of delirium it is the most frequently diagnosed for the reasons noted above (Hogg 2013). Common signs include agitation, delusions and disorientation which are all pronounced and can be confused with schizophrenia. Some of the behaviours a person with hyperactive delirium can present with also bring associated extra risk factors. These may include: • Increased risk of falls as these patients may not use mobility aids provided, may display agitated behaviours and may feel the need to walk around • Lack of sleep (remember this is a risk factor for delirium) • Refusal behaviours leading to difficulty with managing treatment plans • Risk of harm to themselves or others.

CASE STUDY: MOLLY Molly is a 79-year-old lady who lives alone and independently. Her family live close by and visit weekly. She was admitted to acute care following a fall at home. When taking a collateral history, her family described a three-month history of cognitive decline; they had become increasingly concerned that Molly was not coping at home

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and might need some care support. Her medical notes suggested that she has a pre-existing diagnosis of dementia. Molly’s daughter contacted the ward, shortly after she has left from her visit, to say that she had noticed that her mother had become increasingly agitated over the two days prior to the admission and had become aggressive toward family members when they tried to help her. Molly’s finger and toe nails were overgrown, and she displayed heightened anxiety and showed refusal behaviours when nursing staff were trying to provide personal care. Molly has a diagnosis of hyperactive delirium due to pneumonia.

STOP AND REFLECT How has Molly’s behaviour changed from her usual baseline? What has contributed to these changes? What steps would you take to support differential diagnosis between dementia and delirium? How might you support Molly and her daughter for discharge?

Practice notes Delirium may occur in a mixed type where someone may fluctuate between both hyper- and hypoactive periods. If the person with delirium is distressed and alternative de-escalation techniques have been unsuccessful, or if the patient is very distressed and has psychotic symptoms (i.e. delusions and hallucinations), it may be appropriate to use anti-psychotic medication to manage the safety of the patient or those around them. The most common are lorazepam and olanzapine; the preferred route of administration is orally and the usual starting dose is 0.5mg given at two-hourly intervals (maximum 5mg per day) (Hogg 2013). However, prescribing such medications in this group of people holds many additional risks, and increase in morbidity, so it should be managed with caution. It is important to start the patient on the lowest clinically appropriate dose and titrate cautiously according to symptoms (NICE 2010). It is also important to note that any patients who are sedated are at increased risk of falls and increased mortality.

Delirium and Dementia

Summary Delirium is a distressing and acute medical emergency known to negatively influence cognitive and other health outcomes, such as functional decline, admission into care, onset of dementia, increased length of hospital stay and distress for families affected (amongst other things). Nurses can play a significant role in the screening, detection, assessment and management of patients with delirium. It is important that you recognise that patients recovering from an episode of delirium may decline without ongoing observation and support during acute admission. It is therefore also important that staff ensure that ongoing support and encouragement with food and fluids is provided to ensure recovery is maintained.

References Davis, D.H., Kreisel, S.H., Muniz-Terrera, G., Hall, A.J., Morandi, A., Boustani, M. et al. (2013) The epidemiology of delirium: challenges and opportunities for population studies. American Journal of Geriatric Psychiatry. 21(12): 1173–1189. Day, J., Higgins, I. and Keatinge, D. (2011) Orientation strategies during delirium: are they helpful? Journal of Clinical Nursing. 20(23–24): 3285–3294. Fick, D.M., Hodo, D.M., Lawrence, F. and Inouye, S.K. (2007) Recognizing delirium superimposed on dementia: assessing nurses’ knowledge using case vignettes. Journal of Gerontological Nursing. 33(2): 40–47. Fong, T.G., Davis, D., Growdon, M.E., Albuquerque, A. and Inouye, S.K. (2015) The interface between delirium and dementia in elderly adults. Lancet Neurology. 14: 823–832. Franco, J.B., Santesteban, O., Trzepacz, P., Bernal, B., Valencia, C., Ocampo, M.V. et al. (2014) MMSE items that predict incident delirium and hypoactive subtype in older medical inpatients. Psychiatry Research. 220(3): 975–981. González, M., Martínez, G., Calderón, J., Villarroel, L., Yuri, F., Rojas, C. et al. (2009) Impact of delirium on short-term mortality in elderly inpatients: a prospective cohort study. Psychomatics. 50(3): 234–238. Harris, M. (2017) Cognitive issues: decline, delirium, depression, dementia. Nursing Clinics of North America. 52(3): 363–374. Hogg, J. (2013) Delirium. In T. Dening and A. Thomas (eds) Oxford Textbook of Old Age Psychiatry. Second edition. Oxford: Oxford University Press. Hosker, C. and Ward, D. (2017) Hypoactive delirium. British Medical Journal. May 25; 357: j2047. doi: 10.1136/bmj.j2047. Inouye, S.K., van Dyck, C.H., Alessi, C.A., Balkin, S., Siegal, A.P. and Horowitz, R.I. (1990) Clarifying confusion: the confusion assessment method. A new method for detection of delirium. Annals of Internal Medicine. 113: 941–948. Jackson, T., Gladman, J., Harwood, R., MacLullich, A., Sampson, E., Sheehan, B. et al. (2017) Challenges and opportunities in understanding dementia and delirium in the acute hospital. PLOS Medicine. 14(3): p.e1002247. MacLullich, A.M. and Hall, R.J. (2011) Who understands delirium? Age and Ageing. 40(4): 412–414. Mandebuvu, F. and Kalman, M. (2015) The 3 Ds, and newly acquired cognitive impairment: issues for the ICU nurse. Critical Care Nursing Quarterly. 38(3): 317–326. Morandi, A., McCurley, J., Vasilevskis, E.E., Fick, D.M., Bellelli, G., Lee, P. et al. (2012) Tools to detect delirium superimposed on dementia: a systematic review. Journal of the American Geriatric Society. 60(11): 2005–2013.

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NICE (National Institute for Health and Care Excellence) (2010) Delirium: prevention, diagnosis and management. NICE Clinical Guideline 103. www.nice.org.uk/Guidance/ CG103 (Accessed 2 March 2018). Rahman, S. and Howard, R. (2018) Essentials of Dementia: Everything You Really Need to Know for Working in Dementia Care. London: Jessica Kingsley Publishers. Sands, M.B., Dantoc, B.P., Hartshorn, A., Ryan, C.J. and Lujic, S. (2010) Single Question in Delirium (SQiD): testing its efficacy against psychiatrist interview, the Confusion Assessment Method and the Memorial Delirium Assessment Scale. Palliative Medicine. 24(6): 561–565. Sepulveda, E., Leonard, M., Franco, J.G., Adamis, D., McCarthy, G., Dunne, C. et al. (2016) Subsyndromal delirium compared with delirium, dementia, and subjects without delirium or dementia in elderly general hospital admissions and nursing home residents. Alzheimer’s and Dementia (Amsterdam). 7: 1–10. doi: 10.1016/j.dadm.2016.11.002. Todd, A., Blackley, S., Burton, J.K., Stott, D.J., Ely, E.W., Tieges Z. et al. (2017) Reduced level of arousal and increased mortality in adult acute medical admissions: a systematic review and meta-analysis. BMC Geriatrics. 17(1): 283. doi: 10.1186/s12877-017-0661-7. Tsai, H.-H., Yen, R.-F., Lin, C.-L. and Kao, C.-H. (2017) Increased risk of dementia in patients hospitalized with acute kidney injury: a nationwide population-based cohort study. PLoS ONE 12(2): e0171671. https://doi.org/10.1371/journal.pone.0171671. Young, J. (2008) Supporting health and physical well-being. In M. Downs and B. Bowers (eds) (2008) Excellence in Dementia Care Research into Practice. Oxford: Open University Press.

Further reading and resources Dementia UK (2017) Delirium (confusion). www.dementiauk.org/delirium (Accessed 2 March 2018). European Delirium Association. www.europeandeliriumassociation.com (Accessed 2 March 2018). Scottish Delirium Association. www.scottishdeliriumassociation.com (Accessed 2 March 2018).

Chapter 19

Pain in Dementia Elizabeth Sampson

Learning objectives By the end of this chapter you will: • Understand the different types of pain and how common pain is in people with dementia. • Use different methods and tools to build up a person with dementia’s ‘pain picture’. • Have a simple strategy for how best to support the management of pain in people with dementia.

Pain as a universal human experience We all experience pain, but it is also a uniquely personal and subjective experience. By definition, pain is an unpleasant sensation and understandably causes an emotional response. The International Association for the Study of Pain (IASP) defines pain as: an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. (Bonica 1979)

Everyone reacts differently to pain; for example, some people are quiet and prefer to keep themselves still, others like to move around to lessen discomfort. People with dementia will all have different and individual ways of responding to pain. Pain is whatever the experiencing person says it is, existing whenever he says it does. (McCaffery and Beebe 1989)

How older people experience pain is affected by social and psychological factors. Many older people and their families think pain is a natural part of ageing and that it is something that should be tolerated and ‘put 249

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up with’. This stoicism can lead to under-reporting of pain and delays in them seeking help (Abdulla et al. 2013). Medical and nursing staff also underestimate how common pain is in people with dementia; for example, in patients with fractured neck of femur, those with dementia were prescribed only a third as much analgesia as people without dementia (Morrison and Siu 2000). Taking a person-centred approach, understanding the individual and talking to their family and friends is vital to enhance pain care and management. Nurses have a key role in pain management for people with dementia. Whatever setting you work in, even if you are not a prescriber, you can make the person with dementia more comfortable; find out from their family or friends about their personal pain experiences and how they express this; and can act as a strong advocate for them with other healthcare professionals to ensure their pain is properly detected and managed.

Types of pain It is important to consider different types of pain as treatment varies according to the underlying cause. Acute pain is sudden in onset and by definition lasts minutes to less than three months. There are a huge number of possible underlying causes, many of which may not be directly related to a person’s dementia, including headache, sudden falls or injuries, cardiac pain (myocardial infarction), deep vein thrombosis (DVT) and dental pain, often secondary to tooth decay or abscesses (Achterberg et al. 2010; Lobbezoo, Weijenberg and Scherder 2011). Chronic pain is defined as persistent or recurrent pain that lasts for three months or more. Around a third of older people experience chronic pain. There are two main types of chronic pain:

Nociceptive pain This pain is detected by specialised nerves and pain receptors: nociceptors. These are located in musculoskeletal tissues (bones, joints, muscles) and internal organs. Somatic pain comes from the joints, bones, muscles and other soft tissues. Osteoarthritis of the back, knees or hips is a common cause of somatic pain in older people, as are gastrointestinal and cardiac conditions, genito-urinary infections and pressure ulcers (Corbett et al. 2012; Abdulla et al. 2013). It can feel sharp or be a dull ache and the person can often localise and identify where the pain is coming from. Visceral pain comes from internal organs; it may feel dull and the person may find it hard to explain where the pain is located.

Pain in Dementia

Neuropathic pain This is caused by direct damage to nerves. This pain is typically described as burning, numbing or ‘electric-shock’-type pain. Common conditions causing nerve damage in older people include diabetes (diabetic peripheral neuropathy), shingles (post-herpetic neuralgia) and cancer.

How common is pain in people with dementia? The number of painful conditions that a person experiences increases with age and therefore pain is very common in older people. There is little evidence to suggest people with dementia experience less pain than those without (Closs et al. 2016) but they report pain less often (Zwakhalen, Hamers and Berger 2006). It can be difficult to obtain precise information for the prevalence of pain in people with dementia as there is variation in the populations of older people with dementia studied (for example, those still living at home, care home residents or acute hospital inpatients), how studies assess pain (for example, whether pain assessed during movement and at rest) and the tools used to measure this. A third of people with dementia who are still residing in their own homes have pain (21% slight pain, 8% moderate pain and 3% severe pain), similar to the prevalence of chronic pain in older people without dementia (Shega et al. 2004). Studies have shown that 47–80 per cent of care home residents with dementia experience chronic pain (Horgas et al. 2007; Zwakhalen et al. 2009) and that this is more common in women (Zwakhalen et al. 2006). In general hospitals, where patients are likely to be more physically and acutely unwell, pain prevalence increases to 19 per cent at rest and 57 per cent on movement (Sampson et al. 2015).

The impact of pain on people with dementia, their families and staff Pain is an unpleasant and emotionally upsetting experience. However, the impact of pain is even greater in a person with dementia. Undetected and undermanaged pain can be conceptualised as an ‘unmet need’ (Ahn and Horgas 2013); this model suggests that dementia leads to a decreased ability to meet one’s needs because of an increasing difficulty in communicating these needs, and a decreased ability to provide for oneself (Cohen-Mansfield et al. 2015). Poorly managed pain is associated with decreased ability to socialise, loss of appetite, depression, low mood and sleep disturbance. It also reduces independence for activities of daily living. It may trigger behaviours that

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challenge such as agitation, physical and verbal aggression, psychotic symptoms (delusions and hallucinations) and ‘resisting’ care (Corbett et al. 2012). Pain does not just affect the person with dementia; it is associated with increased anxiety and depression in their family caregivers (Orgeta et al. 2015). Many of the consequences of pain in people with dementia are highly related and can trigger a cycle of distressing and critical events. For example, a person with dementia who is experiencing pain may express this through behavioural changes such as agitation, which in turn increases their risk of falls and serious consequences such as hip fracture. This will profoundly decrease their quality of life and increase their risk of mortality.

Detecting pain Many people with mild or moderate dementia are likely to be able to report whether they are in pain (Tracy and Morrison 2013); however those with specific speech problems or people who are in the later stages of dementia may have difficulties with this. Short-term memory problems mean they may not be able to remember they have been in pain, they may forget the word ‘pain’ or may not understand what it means anymore. They may only be able to report in the ‘here and now’ on how they feel, rather than what they have experienced over the last few hours (Leong and Nuo 2007). Commonly used visual pain tools such as the ‘Faces’ scale may appear simple but present a complex task to a person with dementia (Sampson et al. 2015). In the advanced stages of dementia a person may have deeply unpleasant sensations and experiences but may not understand that this is ‘pain’. Unexplained changes in a person’s behaviour, mood or function should always prompt an assessment for pain: ‘See change – think pain’!

There are three key dimensions of pain and, to make a full assessment, information is needed about all of them, either from the person with dementia or an informant such as a relative, carer or practitioner who knows them well (Royal College of Physicians 2007; see Box 19.1).

Pain in Dementia

Box 19.1: The three key dimensions of pain in assessment 1. The sensory dimension – how does the pain feel? • Intensity – how strong is the pain? • Character or type of pain – is it burning, dull or sharp/ stabbing? • Location and radiation of the pain – where does it hurt? Can the person point to themselves to show where it hurts? Does it move around the body? 2. The affective dimension – what is the person’s emotional response to pain? Does it make them depressed, frightened or anxious? 3. The impact – does the pain impact on the person’s function and activities of daily living, social activities and relationships? What makes the pain worse? What makes it better? (Royal College of Physicians 2007)

A comprehensive and detailed pain assessment is the cornerstone of managing pain in people with dementia. This can be challenging in busy clinical environments where older people are further disadvantaged by complex chronic multi-morbidity, visual, hearing and cognitive impairments. A four-step process to pain assessment has been suggested (Herr et al. 2006): 1. Attempt to gain a self-report of pain 2. Search for the underlying causes of pain 3. Observe the person for behavioural indicators of pain 4. Gain collateral history from families, other caregivers and staff.

Step 1: Attempt to gain a self-report of pain Self-report is the ‘gold standard’ of pain assessment so asking someone whether they are in pain is a vital first step. It is important to maximise their understanding of the question, ensuring basic good communication using hearing aids or glasses, and an interpreter if English is not their

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first language. The quality of the information gained can be improved by asking ‘open’ rather than ‘closed’ questions, in a quiet place with minimal interruptions (Royal College of Physicians 2007). More direct, closed or simple questions may be needed in people with more severe dementia. Assessment should always begin with direct questions about whether pain is present. It is helpful to use alternative words and phrases for pain, for example ‘Are you in pain?’, ‘Does it hurt?’, ‘Is it sore?’ or ‘Do you have an ache?’

Step 2: Search for the underlying causes of pain A detailed and careful clinical examination is necessary, checking the person thoroughly, for example their mouth, teeth, pressure areas and wounds. However, it is important to be aware that pain can exist even when physical examination is normal.

Step 3: Observe the person for behavioural indicators of pain If a person with dementia is unable to remember or say that they are in pain and this is not treated adequately they will become distressed as a response to this unmet need. There may also be physiological changes in pulse rate or blood pressure. Pain may then manifest as changes in behaviour and how they interact with others. The American Geriatrics Society (AGS) Panel on Persistent Pain in Older Persons (American Geriatrics Society 2002) recommends that a range of behavioural indicators should be considered in older people with cognitive impairment or dementia (see Table 19.1). Table 19.1: American Geriatrics Society behavioural pain-indicator domains Domain

Example

1

Facial expressions

Frowning, rapid blinking, eyes screwed up tight

2

Verbalisations and vocalisations

Moaning, grunting

3

Body movements

Protecting sore areas, pacing

4

Changes in interpersonal interactions

Disruptive behaviour, withdrawal

5

Changes in activity patterns or routines

Changes in sleep or appetite

6

Mental status changes

Increased confusion, crying

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Observational pain tools may be useful in helping to determine whether someone with dementia is in pain. The majority contain items from the AGS domains described in Table 19.1. Studies suggest that changes in facial expression and in the eyes may be the most sensitive and discriminatory for pain, and thus observing the person’s face is vital (Oosterman et al. 2016). Observational pain tools that are commonly used in practice and are reliable and well-validated include the Abbey Pain Scale (Abbey et al. 2004) and the Pain Assessment in Advanced Dementia (PAINAD) (Hadjistavropoulos et al. 2014). There is no ‘perfect’ pain tool and all have advantages and disadvantages. Their value comes from how they prompt practitioners to ‘stop and look’ for pain. Observe the person whilst they are sitting still and while they are walking or doing an activity. If they are bed bound it is important that they are observed during a care task such as turning or whilst being changed. You may see signs of limited movement or function, limping, or difficulties in standing up or sitting down. Studies suggest that using a pain tool increases the chances of recognising pain (Lukas et al. 2013) but most pain tools do not have ‘cutoff ’ scores as to whether a person is or is not in pain; they are just a guide to considering further management. It can be challenging to implement the routine use of pain tools in clinical practice and they can be seen as ‘another piece of paper’ or a ‘tick box exercise’ (Closs et al. 2016).

Step 4: Gain collateral history from families, other caregivers and staff We all behave differently when we are in pain, and background history from relatives and friends on a person’s individual pain indicators can be very helpful. They can also describe whether pain is acute or chronic and how the person with dementia has reacted to this in the past. They may provide information about functional decline because of pain or about changes in behaviour such as agitation and lack of sleep.

The interaction between pain and distress and discomfort It is important to acknowledge that whilst pain is common in people with dementia, there are other causes of discomfort that may not be painful but may cause significant distress to the person with dementia and their carers. The person may have a number of unmet needs which can cause discomfort:

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• Physical: poor positioning, feeling too hot or too cold, hungry or thirsty • Emotional: feeling bored or undervalued • Psychological: anxiety, depression. Pain tools have been criticised because they may be picking up on discomfort rather than pain (Jordan et al. 2012). It is vital to make sure that the person’s basic needs are met as well as initiating pain treatments.

Managing pain A multidisciplinary approach Pain in older people with dementia is a complex issue and often requires a multidisciplinary approach. Physiotherapists can advise on contractures and positioning; an occupational therapist may be able to help maximise the person’s function; a pharmacist can advise on alternative methods for giving analgesics, for example, as liquids or patches. Psychologists can help assess and interpret the meaning of behavioural changes that have been caused by pain, suggest how these can be managed and provide other psychological interventions.

Non-pharmacological measures These approaches are often underused in people with dementia, particularly in acute hospital settings (White et al. 2016). Physical pain relief includes rest, gentle movement, heat, cold and massage (Wells, Pasero and McCaffrey 2008). There is limited evidence for the effectiveness of complementary therapies such as TENS, acupuncture, massage, aromatherapy and reflexology (Abdulla et al. 2013) but these may still increase comfort, and the person with dementia may gain benefit from the interaction that they have with a therapist. Psychological interventions such as relaxation, mindfulness and cognitive behavioural therapy have been adapted for people with mild or moderate dementia who are in pain, and small studies show these may be effective (Cipher, Clifford and Roper 2007; Kraus et al. 2008).

Pharmacological treatments These should be tried if simple measures are not effective. Older people absorb and metabolise drugs differently from younger people and are

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often at risk of being prescribed too many medications – polypharmacy. Older people with dementia are frequently physically frail (see Chapter 17) and have a higher risk of side effects from analgesic medications. The important principles of prescribing are: • Use the lowest possible dose • Increase doses carefully • Consider alternative methods of administration, for example liquids and patches • Review response regularly. In people with moderate to severe pain, analgesics should be given regularly, avoiding the use of PRN (pro re nata, ‘as required’) only. This is particularly important for people who may not remember they have been in pain and may not ask for PRN medication. People with dementia often develop difficulties in swallowing in the later stages of the illness, or may not want to take tablets because they do not understand the reasons why they need them. Alternative formulations, such as liquids and routes of administration such as patches or per rectum using suppositories can be very useful. Covert medication may be indicated, appropriate and very useful if the person lacks capacity to give consent to this and it is in their best interest to give them analgesia. In this circumstance you must work within the guidelines or policy for covert medication in your setting and take advice from the multidisciplinary team (see Chapter 9). Medication should be started following the three steps of the WHO pain relief ladder, 1 starting with simple non-opioids (aspirin and paracetamol); then, as necessary, mild opioids (codeine); then strong opioids such as morphine (Figure 19.1). Using this approach to treat pain can be an effective way of reducing behaviours that challenge, especially agitation, and improve mood and sleep (Husebo et al. 2011; Blytt et al. 2017). Additionally, when pain is managed appropriately, distress in care home staff is decreased (Aasmul, Husebo and Flo 2016) as their residents have fewer challenging behaviours and staff gain more satisfaction from their work.

1 See www.who.int/cancer/palliative/painladder/en.

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Severe

Strong opioids

Diamorphine Fentanyl

Moderate

Weak opioids

Codeine

Mild

Simple

Paracetamol Ibuprofen

Figure 19.1: The WHO pain ladder

• Paracetamol/acetaminophen is recommended as the first step by most guidelines as an effective and safe analgesic for musculoskeletal pain and osteoarthritis. Adverse effects are rare and it can be given as a liquid or a suppository. • Non-steroidal anti-inflammatory drugs (NSAIDs) include drugs such as ibuprofen, naproxen and diclofenac. Although NSAIDS are effective analgesics they have a high risk of side effects including an increased risk of gastrointestinal bleeding, cardiovascular side effects (increased risk of raising blood pressure, heart failure) and worsening of chronic kidney disease. They are therefore used rarely in older people with dementia. • Opioids are prescribed for moderate to severe pain. They can be very effective in older people but care is need to monitor for side effects. Larger doses can suppress respiration and in some older people they can cause confusion and hallucinations. Opioids increase the risk of falls. Initial sedation, sleepiness, nausea and vomiting often disappear after a few days but constipation is more persistent. A stool softener and a stimulant laxative should be prescribed throughout treatment for all older people taking opioid therapy (Abdulla et al. 2013). Repeated use of opioids can lead to physical and psychological dependency although this is rare when they are used for pain relief in older people. Weak opioids, such as codeine, are recommended for use in moderate pain. Stronger opioids such as morphine are prescribed for cancer pain and postoperatively. Fentanyl and buprenorphine are very strong opioids and are also available as patches. • Neuropathic pain – tricyclic antidepressants (amitriptyline and Nortriptyline) and anticonvulsants (pregabalin and gabapentin)

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are recommended for the treatment of neuropathic pain in older people (see ww.nice.org.uk/guidance/cg173). Tricyclic antidepressants are associated with cardiac rhythm abnormalities, urinary retention, glaucoma and worsening cognitive functioning and they are not recommended in older people with dementia. Pregabalin and gabapentin are anti-epileptic drugs licensed for use in neuropathic pain. Successful pharmacological pain management requires regular review of whether the medication has been effective. If it has not been, then the pain management cycle should begin again with further assessment, treatment and monitoring and, if necessary, a change of prescription up to the next level of the pain management ladder (Corbett et al. 2014).

Overcoming the challenges in practice Putting these approaches together can be very challenging in a busy acute hospital or care home environment where shifts are changing and the responsibility for detecting and managing pain is distributed across different staff and professions. There are multiple organisational barriers such as short-staffing, lack of training and education, lack of implementation of guidelines, and fears about using analgesics in older people (Chandler et al. 2017). Optimal pain management for people with dementia requires the construction of an ‘overall picture of pain’. The key elements of this are time, interdisciplinary communication and documentation and the availability of resources (i.e. non-pharmacological and pharmacological) to manage pain (see Figure 19.2). ACUTE SETTING/CULTURE/CONTEXT Adequate time to know individual patients and their pain cues Opportunities for patients and carers to communicate with staff

Overall Picture of Pain

Multidisciplinary communication and agreement on pain interventions

Availability and delivery of interventions Progress towards satisfactory pain control

Figure 19.2: The key elements required to develop an individual pain picture (Lichtner et al. 2016)

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Once the pain picture has been developed the pain management plan needs to be regularly reviewed and adapted as necessary, again a challenge in many settings. Some of these institutional and systemic barriers can be overcome by taking a person-centred approach. This may be a useful framework for improving pain management and quality of life (Chandler and Bruneau 2014). This is based on treating people as individuals, respecting their rights as a person and building therapeutic relationships (McCormack and McCance 2010). Personalised care plans and documentation such as ‘Ten things about me’ and ‘This is me’ in acute hospitals or ‘My home life’ in care homes can be powerful tools in enhancing knowledge about and connection with the person with dementia, their family and friends. Kenefick and Schulman-Green (2004) argue that knowing a person with dementia may improve the recognition of pain and how pain behaviours are interpreted. Given that many people with severe dementia may be reaching the end of life, a palliative care approach, taking into account physical, psychological, spiritual and emotional pain, can be very effective for holistic care.

CASE STUDY: BRIAN Brian is a 76-year-old man who has moderately severe dementia but still lives at home with his wife, Anne. She reports that he becomes unsettled in the evenings. He fidgets and paces around the house and appears upset. He is also sleeping badly at night and constantly throws the bedsheets off. Once, when Anne tried to tuck him in, he lashed out at her – which is very out of character. He has a medical history of peripheral vascular disease with very poor circulation to his legs and feet. You take a history from Anne and she mentions that he has had ulcers on his legs in the past. She says it was difficult as he didn’t like taking the antibiotic tablets that were prescribed at the time.

STOP AND REFLECT What suggests that Brian may be in pain? What are the possible impacts of his pain on Anne? What help would you advise Anne to seek? Do you think a trial of analgesics is indicated, and if so why? If Brian does not like taking tablets, how could analgesics be given?

Pain in Dementia

References Aasmul, I., Husebo, B.S and Flo, E. (2016) Staff distress improves by treating pain in nursing home patients with dementia: results from a cluster-randomized controlled trial. Journal of Pain Symptom Management. 52(6): 795–805. Abbey, J., Piller, N., De, B.A., Esterman, A., Parker, D., Giles, L. et al. (2004) The Abbey pain scale: a 1-minute numerical indicator for people with end-stage dementia. International Journal of Palliative Nursing. 10(1): 6–13. Abdulla, A., Bone, M., Adams, N., Elliott, A.M., Jones, D., Knaggs, R. et al. (2013) Evidencebased clinical practice guidelines on management of pain in older people. Age and Ageing. 42(2): 151–153. Achterberg, W.P., Gambassi, G., Finne-Soveri, H., Liperoti, R., Noro, A., Frijters, D.H. et al. (2010) Pain in European long-term care facilities: cross-national study in Finland, Italy and the Netherlands. Pain. 148(1): 70–74. Ahn, H. and Horgas, A. (2013) The relationship between pain and disruptive behaviors in nursing home residents with dementia. BMC Geriatrics. 13: 14. American Geriatrics Society (2002) The management of persistent pain in older persons. Journal of the American Geriatrics Society. 50(6 Suppl): S205–224. Blytt, K.M., Bjorvatn, B., Husebo, B. and Flo, E. (2017) Effects of pain treatment on sleep in nursing home patients with dementia and depression: a multicenter placebo-controlled randomized clinical trial. International Journal of Geriatric Psychiatry. doi: 10.1002/ gps.4839. (Epub ahead of print). Bonica, J.J. (1979) The need of a taxonomy. Pain. 6(3): 247–248. Chandler, R. and Bruneau, B. (2014) Barriers to the management of pain in dementia care. Nursing Times. 110(28): 4. Chandler, R.C., Zwakhalen, S.M.G., Docking, R., Bruneau, B. and Schofield P. (2017) Attitudinal and knowledge barriers towards effective pain assessment and management in dementia: a narrative synthesis. Current Alzheimer Research. 14(5): 523–537. Cipher, D.J., Clifford, A. and Roper, K.D. (2007) The effectiveness of geropsychological treatment in improving pain, depression, behavioral disturbances, functional disability, and health care utilization in long term care. Clinical Gerontologist. 30(3): 23–40. Closs, S.J., Dowding, D., Allcock, N., Hulme, C., Keady, J., Sampson, E.L. et al. (2016) Towards improved decision support in the assessment and management of pain for people with dementia in hospital: A systematic meta-review and observational study. Health Services and Delivery Research. 4(30). Cohen-Mansfield, J., Dakheel-Ali, M., Marx, M.S., Thein K. and Regier, N.G. (2015) Which unmet needs contribute to behavior problems in persons with advanced dementia? Psychiatry Research. 228(1): 59–64. Corbett, A., Husebo, B., Malcangio, M., Staniland, A., Cohen-Mansfield, J., Aarsland, D. et al. (2012) Assessment and treatment of pain in people with dementia. Nature Reviews Neurology. 8(5): 264–274. Corbett, A., Husebo, B.S., Achterberg, W.P., Aarsland, D., Erdal, A. and Flo, E. (2014) The importance of pain management in older people with dementia. British Medical Bulletin. 111(1): 139–148. Hadjistavropoulos, T., Herr, K., Prkachin, K.M., Craig, K.D., Gibson, S.J.., Lukas A. et al. (2014) Pain assessment in elderly adults with dementia. Lancet Neurology. 13(12): 1216–1227. Herr, K., Coyne, P.J., Key, T., Manworren, R., McCaffery, M., Merkel, S. et al. (2006) Pain assessment in the nonverbal patient: position statement with clinical practice recommendations. Pain Management in Nursing. 7(2): 44–52. Horgas, A.L., Nichols, A.L., Schapson, C.A. and Vietes, K. (2007) Assessing pain in persons with dementia: relationships among the non-communicative patient’s pain assessment instrument, self-report, and behavioral observations. Pain Management in Nursing. 8(2): 77–85.

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Husebo, B.S., Ballard, C., Sandvik, R., Nilsen, O.B. and Aarsland, D. (2011) Efficacy of treating pain to reduce behavioural disturbances in residents of nursing homes with dementia: cluster randomised clinical trial. British Medical Journal. 343: d4065. Jordan, A., Regnard, C., O’Brien, J.T. and Hughes, J.C. (2012) Pain and distress in advanced dementia: choosing the right tools for the job. Palliatiative Medicine. 26(7): 873–878. Kenefick, A. and Schulman-Green, D. (2004) Caring for cognitively impaired nursing home residents with pain. International Journal for Human Caring. 8(2): 32–40. Kraus, C.A., Seignourel, P., Balasubramanyam, V., Snow, A.L., Wilson, N.L., Kunik, M.E. et al. (2008) Cognitive-behavioral treatment for anxiety in patients with dementia: two case studies. Journal of Psychiatric Practice. 14(3): 186–192. Leong, I.Y. and Nuo, T.H. (2007) Prevalence of pain in nursing home residents with different cognitive and communicative abilities. Clinical Journal of Pain. 23(2): 119–127. Lichtner, V., Dowding, D., Allcock, N., Keady, J., Sampson, E.L., Briggs, M. et al. (2016) The assessment and management of pain in patients with dementia in hospital settings: a multi-case exploratory study from a decision making perspective. BMC Health Service Research. 16(1): 427. Lobbezoo, F., Weijenberg, R.A. and Scherder, E.J. (2011) Topical review: orofacial pain in dementia patients. A diagnostic challenge. Journal of Oral and Facial Pain and Headache. 25(1): 6–14. Lukas, A., Barber, J.B., Johnson, P. and Gibson, S.J. (2013) Observer-rated pain assessment instruments improve both the detection of pain and the evaluation of pain intensity in people with dementia. European Journal of Pain. 17(10): 1558–1568. McCaffery, M. and Beebe, A. (1989) Pain: Clinical Manual for Nursing Practice. St. Louis, CV: Mosby. McCormack, B. and McCance, T. (2010) Person-Centred Nursing: Theory and Practice. Oxford: Wiley Blackwell. Morrison, R.S. and Siu, A.L. (2000) A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture. Journal of Pain and Symptom Management. 19(4): 240–248. Oosterman, J.M., Zwakhalen, S., Sampson, E.L. and Kunz, M. (2016) The use of facial expressions for pain assessment purposes in dementia: a narrative review. Neurodegenerative Disorders Management. 6(2): 119–131. Orgeta, V., Orrell, M., Edwards, R.T., Hounsome, B., Woods, B. and Team, R. (2015) Selfand carer-rated pain in people with dementia: influences of pain in carers. Journal of Pain and Symptom Management. 49(6): 1042–1049. Royal College of Physicians (2007) The assessment of pain in older people. Clinical Medicine. 7: 496–500. www.clinmed.rcpjournal.org/content/7/5/496.full.pdf+html (Accessed 6 December 2018). Sampson, E.L., White, N., Lord, K., Leurent, B., Vickerstaff, V., Scott, S. and Jones, L. (2015) Pain, agitation, and behavioural problems in people with dementia admitted to general hospital wards: a longitudinal cohort study. Pain. 156(4): 675–683. Shega, J.W., Hougham, G.W., Stocking, C.B., Cox-Hayley, D. and Sachs, G.A. (2004) Pain in community-dwelling persons with dementia: frequency, intensity, and congruence between patient and caregiver report. Journal of Pain and Symptom Management. 28(6): 585–592. Tracy, B. and Morrison, S. (2013) Pain management in older adults. Clinical Therapeutics. 35(11): 1659–1668. Wells, N., Pasero, C. and McCaffrey, M. (2008) Improving the quality of care through pain assessment and management. In R.G. Hughes (ed.) Patient Safety and Quality: An Evidence-Based Handbook for Nurses. Rockville, MD: Agency for Healthcare Research and Quality.

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White, N., Leurent, B., Lord, K., Scott, S., Jones, L. and Sampson, E.L. (2016) The management of behavioural and psychological symptoms of dementia in the acute general medical hospital: a longitudinal cohort study. International Journal of Geriatric Psychiatry. 32(3): 297–305. Zwakhalen, S.M., Hamers, J.P. and Berger, M.P. (2006) The psychometric quality and clinical usefulness of three pain assessment tools for elderly people with dementia. Pain. 126(1–3): 210–220. Zwakhalen, S.M., Koopmans, R.T., Geels, P.J., Berger, M.P. and Hamers, J.P. (2009) The prevalence of pain in nursing home residents with dementia measured using an observational pain scale. European Journal of Pain. 13(1): 89–93.

Further reading and resources ‘See change, think pain’: a resource toolkit for pain in dementia. https://dementiaroadmap. info/wp-content/uploads/See-Change-Think-Pain-Napp-Report.pdf (Accessed 8 March 2019). SCIE (2014) Pain in advanced dementia: useful guidance in social care settings. www.scie. org.uk/dementia/advanced-dementia-and-end-of-life-care/end-of-life-care/pain.asp (Accessed 8 March 2019). Nursing Times (2015) pain management clinical archive. www.nursingtimes.net/clinicalarchive/pain-management (Accessed 8 March 2019).

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Chapter 20

Palliative and End-of-Life Care in Dementia Karen Harrison Dening

Learning objectives By the end of this chapter you will: • Understand dementia within the context of it being a life-limiting condition. • Have an understanding of the features and stages of dementia as the disease progresses. • Have an awareness of some of the tools and measures that can help us to approximate the stage or phase of a person’s dementia. • Have an understanding of the symptom burden of advanced dementia.

Introduction More people are living longer in old age with the numbers of those reaching the oldest ages increasing the fastest. In 2008 there were 1.3 million people in the UK aged 85 and over, with this expected to increase to 1.8 million by 2018 and to 3.3 million by 2033 (Stephan and Brayne 2008). These changes to the age structure of the population influence both the prevalence and incidence of age-related conditions such as dementia (Fratiglioni and Qiu 2013) (see Chapter 1). As life expectancy increases so people often develop a range of conditions and disabilities in the years before death (Matthews et al. 2013). People with dementia are one of the greatest users of health and social care as they move towards the end of their lives (Kulmala et al. 2014). Despite this, dementia 264

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is not always recognised as a terminal or life-limiting condition (Sampson and Harrison Dening, in press). In a seminal study surveying care staff and physicians, at nursing home admission, they perceived only just over 1 per cent of residents to have life expectancy of less than six months. However, just over 70 per cent of those residents actually died within that period of time (Mitchell, Kiely and Hamel 2004). Acute physical illness, such as pneumonia or urinary tract infection, may be an indicator of imminent death in people with advanced dementia (Mitchell et al. 2009; Morrison and Siu 2000; van der Steen 2010). Thus, dementia is a progressive, irreversible, neurodegenerative condition (Xie, Brayne and Matthews 2008), with a reported median survival time from symptom onset of dementia to death being 4.5 years. From a longitudinal cohort study, Xie et al. (2008) concluded that almost one in three people (30%) will die with or from dementia. Despite this there is still widespread evidence that people with dementia have inequitable access to good palliative and end-of-life care (Davies and Higginson 2004; Sampson et al. 2006; Lloyd-Williams, Mogan and Harrison Dening 2017). This may in part be due to a failure in recognising when a person stops living with dementia and starts to die with dementia.

Recognising when a person with dementia is dying One of the major barriers to providing good quality end-of-life care for people with dementia is uncertainty at the end of life and difficulty in identifying when someone is entering the final stages of their life (Goodman et al. 2015). Family carers of people with advanced dementia often describe feeling ill-prepared and unsupported at this time, which in part may be due to the difficulties around recognising when a person with dementia is actively dying (Sampson and Harrison Dening, in press). Similarly nursing staff may lack confidence in understanding of the nature and likely outcomes of dementia and in recognising when a person with dementia is nearing the end of life. A combination of such factors may add further barriers to nursing staff holding discussions with families who are struggling to accept that their relative may die soon (Hovland-Scafe and Kramer 2016) (see Chapter 14 on advance care planning). When entering the dying phase, physical, psychological and spiritual care needs of people with dementia and their families may change (Van Der Steen et al. 2017). A growing number of services use the Gold Standards Framework (GSF) (or an equivalent) for delivery of palliative and end-oflife care, with the well-used prompt of the ‘surprise question’: ‘Would you be surprised if (resident) were to die within the next six months or year?’ as a way of getting nursing and care staff to think about the person and their

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declining health. There are several tools that can assist nurses to understand the stage a person is at in their dementia and to anticipate changing needs. One of the most commonly used is the Functioning Assessment Staging Test (FAST) (Connolly et al. 2000) upon which the GSF prognostic indicator guide is partly based. The FAST tool indicates seven stages in the functional decline associated with dementia, from Stage 1, which reflects ‘normal ageing’, through to Stage 7, which describes the function of a person experiencing severe dementia (see Table 20.1). Table 20.1: The Functional Assessment Staging Test (FAST) (Connolly et al. 2000) Stage

Stage name

Characteristic

Mental age (years)

MMSE (score)

1

Normal ageing

No deficits whatsoever

Adult

29–30

2

Possible mild cognitive impairment

Subjective functional deficit

–

28–29

3

Mild cognitive impairment

Objective functional deficit interferes with a person’s most complex tasks

12+

24–28

4

Mild dementia

IADLs become affected, such as bill paying, cooking, cleaning, travelling

8–12

19–20

5

Moderate dementia

Needs help selecting proper attire

5–7

15

6a

Moderately severe dementia

Needs help putting on clothes

5

9

6b

Moderately severe dementia

Needs help bathing

4

8

6c

Moderately severe dementia

Needs help toileting

4

5

6d

Moderately severe dementia

Urinary incontinence

3–4

3

6e

Moderately severe dementia

Faecal incontinence

2–3

1

7a

Severe dementia

Speaks 5–6 words during day

1.25

0

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7b

Severe dementia

Speaks only 1 word clearly

1

0

7c

Severe dementia

Can no longer walk

1

0

7d

Severe dementia

Can no longer sit up

0.5–0.8

0

7e

Severe dementia

Can no longer smile

0.2–0.4

0

7f

Severe dementia

Can no longer hold up head

0–0.2

0

Note: IADLs = instrumental activities of daily living

CASE STUDY: RALPH Ralph is an 87-year-old man admitted to your elderly medical assessment ward. He has a known diagnosis of dementia of Alzheimer type. He has been successfully treated for his first episode of pneumonia and is now deemed fit for discharge but a best-interests decision has been made for his transfer to a care home. Up until this admission he was living alone, supported by an only son who lives over 40 miles from his father’s home and who has been under considerable stress in caring for him and managing his own home, family and work. Ralph needs help with his personal care (dressing, bathing and going to the toilet) and is incontinent of urine, despite frequent prompts and orientation to the toilet.

STOP AND REFLECT You are asked by the senior staff nurse on the ward to consider Ralph’s functional status using the FAST scale. Given the information you have about Ralph, what stage would you assess him to be? What characteristics of this stage does Ralph not experience currently? How might you use this tool to sensitively counsel Ralph’s son as to what further deterioration he might expect to see in his father’s condition?

Multi-morbidity and dementia Many people will also have other illnesses and disabilities in addition to their dementia. Multi-morbidity is defined as the coexistence of two or more chronic conditions, where one is not necessarily more central than the others (Boyd and Fortin 2010). Multi-morbidity correlates with

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age, representing the most common ‘disease pattern’ found among older people, and is characterised by complex interactions of coexisting diseases for which a medical approach focused on a single disease does not suffice. People with dementia and cognitive impairment show high levels of multimorbidity (Cigolle et al. 2007; Doraiswamy et al. 2002); common multimorbid conditions in advanced dementia include cancer, cardiovascular disease, diabetes and musculoskeletal disorders such as fractures. Tschanz et al. (2004) found that the presence of multi-morbid medical conditions were positive predictors of mortality in dementia, although dementia itself was the strongest predictor of mortality, with the risk being two to three times greater than those of other life-limiting illnesses. Multiple conditions not only have a cumulative effect but also interact with each other to have a greater impact than their sum total, and this is even more so in dementia. Melis et al. (2013) compared the trajectories of people with and without dementia and found that multi-morbidity was related to accelerated decline in people with dementia but not in those without dementia. Moreover, people with dementia are more likely to experience under-assessment and under-treatment of any multi-morbid condition than people with other long-term conditions (Davies and Higginson 2004).

Supportive and Palliative Care Tool (SPICT) Many people with dementia may die primarily of another condition before they ever reach the advanced stages of their dementia and so it can often be confusing for nursing staff how to identify the dying phase of this group of people. There is another tool called the Supportive and Palliative Care Indicators Tool (SPICT) (Highet et al. 2013), and this has recently been updated (SPICT-4ALL 2018) (see ‘Further reading and resources’ section). It is applicable for people with one or more health problems and provides a range of key questions to support an assessment of their needs, but presented in a language that makes sense to everyone. The SPICT-4ALL is a discussion tool that enables nurses and the care team to consider three key questions (with prompts under each). • Does this person have signs of poor or worsening health (e.g. unplanned (emergency) admission(s) to hospital)? • Does this person have any of these health problems: e.g. cancer, dementia, lung problems?

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• What can we do to help this person and their family? (For example, it is important to start talking with the person and their family about making plans for care.)

STOP AND REFLECT Think of a person with dementia in your care. Try to collect information from their records and what you know about them to enable you to answer these questions.

Being aware of the impact of acute illnesses on top of dementia should alert nurses to the possibility that a person with dementia may be nearing the end of life. For example, acute physical illness, such as pneumonia or urinary tract infection, may be an indicator of imminent death in people with advanced dementia (Mitchell et al. 2009; Morrison and Siu 2000; van der Steen et al. 2017). People with dementia also have a markedly increased mortality up to six months after hip fracture (55%) or pneumonia (53%) compared with 12 per cent and 13 per cent, respectively, in cognitively intact patients (Morrison and Siu 2000). Shorter-term mortality is also very poor, with 24 per cent of people with moderate or severe dementia dying after acute unplanned medical admissions compared with only 7.5 per cent of those who did not have dementia (Sampson et al. 2009). These illnesses and conditions, in addition to the dementia, often present generalist clinicians and family carers alike with practical problems in managing care and treatment or in understanding the prognosis of this mix of diseases. It is often when a multi-morbid condition threatens the life of the person with dementia that carers find decision making especially difficult, and such events can expose the fact that they may not fully understand the life-limiting nature of dementia.

Frailty and dementia Frailty and dementia are becoming a focus of interest and study (Rahman and Swaffer 2018; Rahman 2018) (see also Chapter 17); both are multifactorial in origin, and share some common aetiological pathways. Both dementia and frailty have an adverse effect on a range of outcomes at the end of life. People with dementia and frailty are at higher risk of acute hospital admission, falls and being placed in a care home (Mukadam and Sampson 2011; Rahman and Swaffer 2018).

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Phase of illness The third tool I wish to consider is the Palliative Care Phase (Phase) measure which is part of the Outcomes Assessment and Complexity Collaborative (OACC) Suite of Measures (Witt et al. 2013). As with FAST, the Phase tool describes the distinct period or stage of a person’s illness but more in terms of the care needs of the dying person and those of their family carers. It enables the nurse to reflect on and review the current care plan and provides an indication or measure of its suitability for the stage the person has reached. The phases are described as stable, unstable, deteriorating, dying and deceased. The matrix enables the carer staff to use the descriptions of the phase of illness and gain some indication of what might mark the end of this particular phase as they move into the next (see Table 20.2). Table 20.2: Phase of illness (Witt et al. 2013) Phase

This is the current phase if…

This phase ends when…

Stable

Patient’s problems and symptoms are adequately controlled by established plan of care; further interventions to maintain symptom control and quality of life have been planned; family/carer situation is relatively stable; and no new issues are apparent.

The needs of the patient and/ or family/carer increase, requiring changes to the existing plan of care.

Unstable

An urgent change in the plan of care or emergency treatment is required because the patient experiences a new problem that was not anticipated in the existing plan of care; and/ or the patient experiences a rapid increase in the severity of a current problem; and/or family’s/carer’s circumstances change suddenly, impacting on patient care.

The new plan of care is in place; it has been reviewed and no further changes to the care plan are required. This does not necessarily mean that the symptom/crisis has fully resolved but there is a clear diagnosis and plan of care (i.e. patient is stable or deteriorating) and/or death is likely within days (i.e. patient is now dying).

Palliative Care in Dementia

Deteriorating

The care plan is addressing anticipated needs, but requires periodic review, because the patient’s overall functional status is declining and the patient experiences new but anticipated problem(s); and/ or the family/carer experiences gradually worsening distress that impacts on the patient care.

Patient condition plateaus (i.e. patient is now stable); or there is an urgent change in the care plan or emergency treatment; and/or family/ carers experience a sudden change in their situation that impacts on patient care, and urgent intervention is required (i.e. patient is now unstable) or death is likely within days (i.e. patient is now dying).

Dying

Dying: death is likely within days.

Patient dies or patient condition changes and death is no longer likely within days (i.e. patient is now stable or deteriorating).

Deceased

The patient has died; bereavement support provided to family/carers is documented in the deceased patient’s clinical record.

Case is closed.

As with SPICT-4ALL, this tool aids care discussions and allows health and care staff to ask questions of families of people with dementia, not only to assess their care needs but also to enable discussions about the events and stages that may be experienced in the advanced stages of their illness, and also to facilitate discussions about advance care planning (see Chapter 14).

Symptoms in advanced dementia at end of life In contrast with the early and middle stages of dementia, the clinical features of the advanced stages of dementia are less well characterised and researched. People with advanced dementia have a range of symptoms similar to those found in the terminal stages of cancer, including pain and dyspnoea. Pressure sores, agitation, difficulty in swallowing and loss of appetite are very common in advanced dementia as the end of life approaches (Sampson and Harrison Dening, in press). Good symptom control is essential for anyone in the terminal stage of their illness or as death approaches and no less so than in people with dementia. Nurses must be confident that good symptom management and control, which is an essential part of palliative care, does not hasten death (Payne et al. 2009). Palliative care intends neither to hasten nor postpone death but ensure comfort as a person reaches the end of their life (WHO 2011).

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Pain Pain is common in people with advanced dementia and is often underdetected and under-treated (Scherder et al. 2009). Pain has been covered more extensively in Chapter 19.

Eating and swallowing People with advanced dementia often develop swallowing difficulties. Historically tube feeding may have been used. However, a Cochrane review (Sampson, Candy and Jones 2009) found inconclusive evidence that tube feeding provides any benefit for people with advanced dementia in terms of survival time, mortality risk, nutritional parameters and improvement in or reduced incidence of pressure ulcers. In contrast, tube feeding may increase pulmonary secretions, incontinence, mortality and morbidity. The decision to use tube feeding can be emotive and influenced by complex ethical issues, clinical need, local practice, clinician and carer preference, and whether there is an advance directive or advance care plan in place. Ethical considerations include whether life in advanced dementia should be artificially prolonged and what is considered to constitute ‘euthanasia’ (that is, that by withholding food and fluids, death will be hastened). It has been argued that the absence of evidence showing a benefit of tube feeding does not mean that it is inappropriate in all patients with advance dementia and that each individual deserves a holistic assessment by a specialist in swallowing, such as that which a speech and language therapist (SALT) can provide (Sampson et al. 2009). A decision to forgo artificial hydration and nutrition may be wrongly interpreted by family carers, resulting in concern that the patient is being ‘starved’. Palecek et al. (2010) argue that this might be overcome through the use of the term ‘comfort feeding’, which stresses the shift in a patient’s goals of care. Such comfort feeding is achieved through careful hand feeding.

Infections Pneumonia and other infections (such as of the urinary tract) are common in advanced dementia. Mitchell et al. (2009) found that over an 18-month period, over 50 per cent of nursing home residents with advanced dementia will have a febrile episode and over 40 per cent will have pneumonia. Furthermore, Van Der Steen (2010) argues that these conditions will be the immediate cause of death in the majority of cases. People with advanced dementia are often immobile; if bed bound they are at increased risk of aspiration and they may also have

Palliative Care in Dementia

impaired immunological function. The use of antibiotics to treat fevers and recurrent infections is one of the most controversial issues in this field. Fabiszewski, Volicer and Volicer (1990) found no difference in mortality between people receiving antibiotics and those receiving only palliative care. Van der Steen et al. (2009) found that pneumonia in people with dementia can cause discomfort with or without the use of antibiotics, and they go on to suggest that antibiotics may delay death but leave the patient exposed to the risk of further pain and suffering and prolonging the dying phase. In such situations, adequate symptomatic control through the use of analgesia may be more appropriate.

Psychosocial aspects of end-of-life care in dementia Communication Good communication is the bedrock of high-quality, person-centred care (see Chapter 7) and probably more so as the person with dementia deteriorates to the stages where communication becomes increasingly compromised. People with advanced dementia become very frail as the brain shuts down, leading to difficulties in their communication and interaction with others (Stacpoole et al. 2017), so the impetus is placed on the carer to make that important connection. Namaste is a care programme designed to support carers (both professional and family) to make vital connections and communicate with people with advanced dementia using all the senses (see Chapter 15). In many senses the Namaste Care programme contains many principles of coma care (Small, Froggatt and Downs 2007) by facilitating communication in situations where communication seems impossible, using multiple channels of communication including sight, hearing, sound, body sensation and touch. The underlying value is that whilst a person is breathing, there is consciousness, and love and connection can still be imparted and made (Small et al. 2007) (see also Chapter 15 on spirituality)

Environmental factors There is scant literature about what constitutes a suitable environment for people with advanced dementia at the end of their lives but there is little reason why much that we consider appropriate for our own needs at this time should not also apply. As with any environment to promote wellbeing in dementia, the heating, lighting, noise levels, colour and furniture layout (Lillyman 2017) all require equal attention at the end of life.

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Promoting a space that allows for dignity and privacy for the person with dementia and their family is important, and this can be achieved through simple measures, such as provision of a relative’s room (in institutional or communal living) if families choose to sleep/stay close in the last days of life, or placing a comfortable chair in the person with dementia’s bedroom if they wish to sleep near to them. It may be that the person’s wishes were for them to be freely and openly visited, for example, by fellow residents if in a care home, and that their bedroom door be left open to facilitate this. Many people nearing the end of life can experience breathlessness; some simple environmental measures can help, such as having a bed that allows you to raise the head of the bed, opening a window to allow fresh air (but avoid drafts), and using a dehumidifier or a fan in the room. However, people with dementia at the end of life may have difficulties in controlling their body temperature so watch for clues of discomfort, such as pulling bedcovers, shivering, spikes in temperature, etc. Control of noise is essential in the vicinity of the person’s room; whilst ‘life goes on’ in respect of vacuuming and cleaning, sudden or undue noise is to be avoided. It may be desirable to have music playing softly for periods, especially if part of a person’s own ‘playlist’. All such factors of preferences and wishes for end of life could be explored early on in the person’s advance care plan (see also Chapter 14 on advance care planning).

Conclusion Good person-centred care and good palliative care in dementia require a rounded approach, and delivering the best possible palliative and end-oflife care in dementia should be no different from how we might care for anyone who is dying. However, what is different is often that the person with dementia may have lost the ability to communicate how they feel and what they do or do not wish to happen to them. There are approaches to adopt, such as Namaste, that can offer much comfort to a person with dementia as they near the end of their lives. This chapter has outlined some of the main symptoms that may arise and practical ways to manage them; there are many useful resources available to guide the care of a person with dementia as they near death. The multiple morbidities experienced by some people with dementia mean that they will often require a multi-component intervention or care management that will require the engagement of a range of specialties. This can be co-ordinated to deliver high-quality palliative and end-of-life care, but first all clinicians need to understand that dementia is a life-limiting

Palliative Care in Dementia

condition and recognise the indicators for when goals of treatment should be refocused to one of palliation.

References Boyd, C.M. and Fortin, M. (2010) Future of multimorbidity research: how should understanding of multimorbidity inform health system design? Public Health Reviews. 32: 451–474. Cigolle, C.T., Langa, K.M., Kabeto, M.U., Tian, Z. and Blaum, C.S. (2007) Geriatric conditions and disability: the Health and Retirement Study. Annals of Internal Medicine. 147(3): 156–164. Connolly, D.M., Pedlar, D., MacKnight, C., Lewis, C. and Fisher, J. (2000) Guidelines for stage-based supports in Alzheimer’s care: the FAST-ACT. Functional Assessment Staging Tool – Action Checklist. Journal of Gerontological Nursing. 26(11): 34–45. Davies, E. and Higginson, I.J. (2004) Better Palliative Care for Older People: Report. Geneva: World Health Organization Europe. Doraiswamy, P.M., Leon, J., Cummings, J.L., Marin, D. and Neuman, P.J. (2002) Prevalence and impact of medical comorbidity in Alzheimer’s disease. Journals of Gerontology Series A: Biological Sciences and Medical Sciences. 57(3): M173–177. Fabiszewski, K.J., Volicer, B. and Volicer, L. (1990) Effect of antibiotic treatment on outcome of fevers in institutionalized Alzheimer patients. JAMA. 263(23): 3168–3172. Fratiglioni, L. and Qiu, C. (2013) Epidemiology of dementia. In T. Dening and A. Thomas (eds) Oxford Textbook of Old Age Psychiatry. Second edition. Oxford: Oxford University Press. Goodman, C., Froggatt, K., Amador, S., Mathie, E. and Mayrhofer, A. (2015) End-of-life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation. BMC Palliative Care. 14: 42. doi: 10.1186/s12904-015-0040-0. Highet, G., Crawford, D., Murray, S.A. and Boyd, K. (2013) Development and evaluation of the Supportive and Palliative Care Indicators Tool (SPICT): a mixed-methods study. BMJ Supportive and Palliative Care. 4(3): 285–290. doi: 10.1136/bmjspcare-2013-000488. Hovland-Scafe, C.A. and Kramer, B.J. (2016) Preparedness for death: how caregivers of elders with dementia define and perceive its value. Gerontologist. 10;57(6): 1093–1102. Kulmala, J., Nykanen, I., Manty, M. and Hartikainen, S. (2014) Association between frailty and dementia: a population-based study. Gerontology. 60 (1): 16–21. Lillyman, S. (2017) Adapting the home to enhance resident wellbeing. Nursing and Residential Care. 19(9): 499–501. Lloyd-Williams, M., Mogan, C. and Harrison Dening, K. (2017) Identifying palliative care needs in people with dementia. Current Opinion in Supportive and Palliative Care. doi: 10.1097/SPC.0000000000000295. (Epub ahead of print.) Matthews, F.E., Arthur, A., Barnes, L.E., Bond, J., Jagger, C., Robinson, L. et al. (2013) A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. The Lancet. 382 (9902): 1405–1412. Melis, R.J., Marengoni, A., Rizzuto, D., Teerenstra, S., Kivipelto, M., Angleman, S.B. et al. (2013) The influence of multimorbidity on clinical progression of dementia in a population-based cohort. PLoS ONE. 8(12): e84014. doi: 10.1371/journal.pone.0084014. Mitchell, S.L., Kiely, D.K. and Hamel, M.B. (2004) Dying with advanced dementia in the nursing home. Archives of Internal Medicine. 164(3): 321–326. Mitchell, S.L., Teno, J.M., Kiely, D.K., Shaffer, M.L., Jones, R.N., Prigerson, H.G. et al. (2009) The clinical course of dementia. New England Journal of Medicine. 361(16): 1529–1538.

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Morrison, R.S. and Siu, A.L. (2000) Survival in end-stage dementia following acute illness. Journal of the American Medical Association. 284(1): 47–52. Mukadam, N. and Sampson, E.L. (2011) A systematic review of the prevalence, associations and outcomes of dementia in older general hospital inpatients. International Psychogeriatrics. 23(3): 344–355. Palecek, E.J., Teno, J.M., Casarett, D.J., Hanson, L.C., Rhodes, R.L. and Mitchell, S.L. (2010) Comfort feeding only: a proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia. Journal of the American Geriatric Society. 58(3): 580–584. Radbrunch, L., Payne, S. and the Board of Directors of the EAPC. (2009) White Paper on standards and norms for hospice and palliative care in Europe: Part 1: Recommendations from the European Association for Palliative Care. European Journal of Palliative Care. 16(6): 278–289. Rahman, S. (2018) Frailty: From Assets and Deficits to Resilience. Oxon: Routledge. Rahman, S. and Swaffer, K. (2018) Assets-based approaches and dementia-friendly communities. Dementia. Jan. doi: 10.1177/1471301217751533. (Epub ahead of print.) Sampson, E.L. and Harrison Dening, K. (in press) Palliative care and end-of-life care. In T. Dening and A. Thomas (eds) Oxford Textbook of Old Age Psychiatry. Third edition. Oxford: Oxford University Press. Sampson, E.L. and Harrison Dening, K. (2011) Palliative care and end-of-life care. In T. Dening and A. Milne (eds) Mental Health and Care Homes. Oxford: Oxford University Press. Sampson, E.L., Gould, V., Lee, D. and Blanchard, M. (2006) Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age and Ageing. 35(2): 187–189. Sampson, E.L., Thune-Boyle, I., Kukkastenvehmas, R., Jones, L., Tookman, A., King, M. et al. (2008) Palliative care in advanced dementia: a mixed-methods approach for the development of a complex intervention. BMC Palliative Care. 7: 8. doi:10.1186/1472684x-7-8. Sampson, E.L., Candy, B. and Jones, L. (2009) Enteral tube feeding for older people with advanced dementia. Cochrane Database Systematic Review. 15(2): CD007209. doi: 10.1002/14651858.CD007209.pub2. Scherder, E., Herr, K., Pickering, G., Gibson, S., Benedetti, F. and Lautenbacher, S. (2009) Pain in dementia. Pain. 145(3): 276–278. Small, N., Froggatt, K. and Downs, M. (2007) Living and Dying with Dementia: Dialogues about Palliative Care. Oxford: Oxford University Press. SPICT-4ALL (2018) www.spict.org.uk/the-spict/spict-4all (Accessed 23 June 2017). Stacpoole, M., Hockley, J., Thompsell, A., Simard, J. and Volicer, L. (2017) Implementing the Namaste Care Program for residents with advanced dementia: exploring the perceptions of families and staff in UK care homes. Ann Palliat Med. 6(4): 327–339. Stephan, B. and Brayne, C. (2008) Prevalence and projections of dementia. In M. Downs and B. Bowers (eds) Excellence in Dementia Care: Research into Practice. Maidenhead: McGraw-Hill. Tschanz, J.T., Corcoran, C., Schooq, I., Khachaturian, A.S., Herrick, J., Hayden, K.M. et al. (2004) Dementia: the leading predictor of death in a defined elderly population: the Cache County Study. Neurology. 62(7): 1156–1162. van der Steen, J.T. (2010) Dying with dementia: what we know after more than a decade of research. Journal of Alzheimer’s Disease. 22(1): 37–55. van der Steen, J.T., Meuleman-Peperkamp, I. and Ribbe, M.W. (2009) Trends in treatment of pneumonia among Dutch nursing home patients with dementia. Journal of Palliative Medicine. 12(9): 789–795.

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van der Steen, J.T., Lane, P., Kowall, N.W., Knol, D.L. and Volicer, L. (2012) Antibiotics and mortality in patients with lower respiratory infection and advanced dementia. Journal of the American Medical Directors Association. 13(2): 156–161. van der Steen, J.T., Lemos Dekker, N., Gisberts, M.H.E., Vermeulen, L.H. and Mahler, M.M. (2017) Palliative care for people with dementia in the terminal phase: a mixed methods qualitative study to inform service development. BMC Palliative Care. 16(1): 28. doi: 10.1186/s12904-017-0201-4. WHO (2011) Definition of Palliative Care. Geneva: World Health Organization. Witt, J., Murtagh, F.E.M., de Wolf-Linder, S., Higginson, I.J. and Daveson, B.A. (2013) Introducing the Outcome Assessment and Complexity Collaborative (OACC) Suite of Measures: A Brief Introduction. London: King’s College London, University of London. www.kcl.ac.uk/lsm/research/divisions/cicelysaunders/attachments/Studie-OACCBrief-Introduction-Booklet.pdf (Accessed 20 Jan 2018). Xie, J., Brayne, C. and Matthews, F.E. (2008) Survival times in people with dementia: analysis from population-based cohort study with 14 year follow-up. British Medical Journal. 336(7638): 258–262.

Further reading and resources Pace, V., Treloar, A. and Scott, S. (eds) (2011) Dementia: From Advanced Disease to Bereavement. Oxford: Oxford University Press. Social Care Institute for Excellence (SCIE) (2018) Dementia Gateway: end-of-life care in dementia. www.scie.org.uk/dementia/advanced-dementia-and-end-of-life-care/endof-life-care (Accessed 20 Jan 2018). Van Der Steen et al. (2013) White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine. 28(3): 197–209. www.eapcnet.eu/Portals/0/ Clinical/Dementia/DementiaWP_PM2014 per cent2C28 per cent283 per cent29.pdf (Accessed 20 Jan 2018).

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Chapter 21

Care of People with Dementia in the Community Jo Moriarty

Learning objectives By the end of this chapter you will be able to: • Recognise the importance of community support in the ‘journey’ following the diagnosis of dementia. • Understand some of the benefits and barriers to providing effective social care services for people with dementia living at home. • Improve your awareness of recent developments aimed at providing more personalised support to people with dementia living at home. • Appreciate the different circumstances in which one type of support might be more suitable than another.

Introduction When asked to imagine a person living with dementia, many people’s first thought is of somebody living in a care home. However, this only applies to 311,730 of the estimated 815,827 people with dementia in the UK (Prince et al. 2014). Most people with dementia would prefer to continue to live at home with support, moving into a care home only in the later stages, if at all. Despite this, progress in ensuring that a range of community services exists – spanning advice and help for those who have recently received a diagnosis to end-of-life care – has been uneven. This chapter discusses some of the main social care services supporting people with dementia living at home. Social care is the generic term used in the UK covering practical or emotional support to lead an active life and do taken-for-granted activities, such as washing and dressing and joining in social activities designed to prevent loneliness and improve wellbeing. 278

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Few people living with dementia in the community would be offered everything described in this chapter. Instead, help is overwhelmingly provided by unpaid carers, usually family members or close friends. This is often described as ‘informal care’, a phrase that completely fails to convey the number of hours of support and the level of skills and understanding needed to deliver them (see Chapter 16). There are estimated to be around 670,000 people in the UK acting as primary, unpaid carers for a person with dementia (Alzheimer’s Society 2018) so care for people with dementia in the community also involves supporting family carers. At the same time, there is a smaller number of people with dementia who live alone at home with minimal or no support from a family carer. This group is often over-represented among people living in care homes because of the high costs of enabling them to live at home as their dementia progresses.

Arranging social care services Historically, expenditure on social care services per head of the population is highest in Scotland (£435) and lowest in England (£295), with Wales and Northern Ireland both spending approximately £400 per head (Health Foundation 2018). We do not know how much is spent specifically on supporting people with dementia or how these amounts are split between community support and residential care. In addition, some services are jointly commissioned with local clinical commissioning groups (or Health Boards in Scotland, Wales and Northern Ireland). These could include memory cafés, end-of-life care, or services designed to give family carers a break. Arrangements for applying for, and receiving, social care services also differ across the UK. Unlike the National Health Service, social care services are not free. England, Wales, Scotland and Northern Ireland vary in the way that they assess eligibility for social care services and in how much they require people to pay for these services. Carers have the legal right to ask for support in all four UK countries, although the legislative position in each country is slightly different. We know very little about self-funders. These are people who arrange and fund their own social care or who are supported by a family member or friend to arrange it. This is because they do not appear in official data sources.

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Personal budgets Following an assessment of a person’s care and support needs and their financial situation, local councils (and other funding streams) allocate a personal budget (an agreed amount of money) to those who meet the eligibility criteria for social care support. In Scotland, personal budgets are referred to as self-direct support. People can agree to the council managing these funds and arranging support for them. However, the policy preference is for people eligible for a personal budget to take it in the form of a direct payment. This means they receive a cash payment to be spent on arranging and paying for their social care support. Successive governments have argued that this is the way to maximise people’s control over the support they receive. For many people direct payments help avoid problems such as not being able to choose the time of a visit from a home care worker. However, where a person lacks capacity to consent to having a personal budget, then a ‘suitable person’ has to agree to manage it on his or her behalf (Laybourne et al. 2014). In practice, the majority of people living at home with dementia rely on support from family carers to manage their personal budget. Carers also have the right to apply for a personal budget to help them sustain their role as carer and maintain their health and wellbeing. Many carers think the advantages of having a direct payment more than outweighs the extra responsibility for it (which includes acting as employer); others find the process burdensome (Brooks, Mitchell and Glendinning 2016). Additional work for the carer can be avoided if the budget is managed by a brokerage or advocacy service on behalf of the person with dementia or managed by the service provider through an Individual Service Fund (ISF) but such arrangements are the exception, rather than the norm. The government has announced plans to extend the use of personal health budgets which may increase the number of people with dementia receiving this type of support (Department of Health and Social Care 2018). As well as making sure carers are not over-burdened by managing direct payments, practitioners need to be aware of the safeguarding risks of financial abuse stemming from the receipt of personal budgets (Manthorpe and Samsi 2013) (see Chapter 11).

Making direct payments work The following case study shows how direct payments can work.

Dementia in the Community

CASE STUDY: EDWARD AND EDNA Edward and Edna Johnson have been married for 60 years. Edna was diagnosed with Alzheimer’s disease four years ago. Following admission to hospital after a fall, Edna was assessed under the Care Act 2014. She now receives a direct payment of £300 per month. Edward and Edna were already attending an Age UK reminiscence group. Edward recruited Sally through a fellow member of the group whose mother had recently moved into a care home. Sally comes five mornings a week to help Edna get up. One evening a month, she keeps Edna company while Edward goes to his local history group. Edward says that Sally gets on very well with Edna. Edward and Edna had tried a home care agency in the past but Edward cancelled this service shortly before Edna’s admission to hospital because, in his words, ‘They never saw the same person twice’ and the care workers could arrive ‘any time from 6 to10 in the morning’. Edward uses the remainder of the direct payment to pay a neighbour, Joyce. Joyce and Edna have lunch in a local garden centre once a week and admire the plants on sale. Joyce’s only income is her state retirement pension. Edward wants to ensure that Joyce is not out of pocket on these visits and the money covers their refreshments and travel costs. He says he is lucky that his daughter Anne is an accountant and helps him manage the financial aspects of the direct payment.

Home care Home care involves providing practical assistance, such as personal care, medication management, and domestic tasks such as cleaning and cooking. It is the main community care service supporting people with dementia living at home. It helps delay entry into long-term care for people with dementia (Andrew et al. 2000), and home care users experience better quality of life than those living in care homes (Nikmat, Hawthorne and Al-Mashoor 2013). Unfortunately, there is also plenty of evidence that much home care provision is of poor quality and does not meet the needs of people with dementia. A good example of this is the practice of commissioning very short visits, sometimes as short as 15 minutes. Many people with dementia can continue to get up or prepare meals if they are given extra time and encouragement. However, this is not possible when workers need to leave quickly for their next visit. The end result is that workers may try to save time by, for example, dressing a person with dementia rather than encouraging him or her to do it independently.

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Many home care workers have limited training and may have limited knowledge about dementia. Recruitment and retention problems are longstanding (Moriarty, Manthorpe and Harris 2018), which means people with dementia do not always benefit from having regular workers, even though continuity of care is especially important for them. Finally, almost all home care is commercially provided, and changes in ownership can mean that an agency which formerly provided reliable, well-trained workers no longer does so. A solution to these problems has been to set up specialist dementia home care agencies but these are not always available everywhere. Self-funders may have advantages over those receiving publicly funded home care in that they generally have greater control over the timing and length of visits but they may still need information about finding out what help is available and choosing a provider.

Day services Day services are a long-established way of providing social activities for people with dementia at the same time as giving their family carers a break. They are taken up when it becomes impractical to use communal social spaces without dedicated transport and meeting other support needs. They may supplement or replace social opportunities for people who are otherwise restricted in terms of their social lives. Indeed, for some isolated individuals, day services staff, volunteers and fellow attenders often become their main source of social contact (Orellana 2018). However, their popularity in the UK has waned. They are often presented as dull places, little more than ‘warehouses’ for those attending them and unpopular with service users, even when those making these assertions offer very little evidence that they are reflecting the opinions of people who have actually experienced using day services (Needham 2013). By contrast, people with dementia and their family carers often speak favourably about the benefits of day care, especially in terms of increased social contact, even though some people with dementia may have been initially reluctant to attend (for example, see Rokstad et al. 2017). Research from the US has suggested that day services can benefit people with dementia in terms of their quality of life and in reducing distressing behaviours, such as feeling agitated (Gaugler and Zarit 2001).

Dementia in the Community

Other options There is no doubt that day services will not suit everybody with dementia. For example, people with young onset dementia are very conscious of the large age gap between themselves and the majority of attenders. However, most people with dementia still want to take part in social and recreational activities, even if they reject a traditional day service. This has led to the development of alternatives. These include: • Outdoor activities such as Dementia Adventure (2018), ‘green farms’ (de Bruin et al. 2010), and ‘Walk and Talk’ groups (London Borough of Redbridge 2018), where the emphasis is on social settings that take place outside. • Social activities that people with dementia can take part in alongside carers and other family members and friends, such as ‘Singing for the Brain’ (Osman, Tischler and Schneider 2014) or memory cafés (Halley et al. 2005). • Creative and cultural activities in museums and other venues (Evans, Garabedian and Bray 2017; Roe et al. 2014). These shared activities also offer opportunities for peer support in a way that one-to-one services such as home care do not. For people with dementia who have a family carer, they can be a way of doing something together. This is appreciated by many carers who find it difficult being in situations in which they are the only person who can provide support to the person for whom they care in public. However, other carers find these situations stressful and would prefer to have a break from caring instead (Melunsky et al. 2013). With ‘Shared Lives’, a person needing accommodation and support moves in with an approved ‘Shared Lives’ carer during the day or overnight. People with dementia and their carers often prefer this type of break as an alternative to moving into a care home temporarily. But, the number of people with dementia using ‘Shared Lives’ is still very low, although efforts are being made to increase this (Shared Lives 2017).

Befriending Befriending is another well-established type of community support in which volunteers are matched with people who would otherwise be at risk of becoming socially isolated. There are generic (for example, Contact the

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Elderly) and specialist dementia befriending schemes (Life Changes Trust 2015a) but both types frequently experience problems with recruiting and retaining volunteers so waiting lists for befriending services are common. Befriending services have traditionally focused on people with dementia living alone and, in particular, those lacking support from family members or friends. Carers of people with dementia may also experience loneliness and isolation so some befriending services support them as well. However, not all carers want ‘to be befriended’ and a trial of a befriending service for carers was not able to demonstrate improvements in carers’ psychological wellbeing (Charlesworth et al. 2008). This is not particularly surprising as, with visits generally taking place once a week or fortnight, the intensity of most befriending services is probably insufficient to make a difference to carers who already feel overloaded by their caring responsibilities. Some schemes for peer befriending have been established in which emphasis is on friendship, as compared with traditional befriending services, and which focus on maintaining skills and hobbies as well as companionship (Life Changes Trust 2015b). While befriending services have traditionally been provided in people’s own homes, newer models focus on activities undertaken outside the home (Phillips and Evans 2016), highlighting the way in which traditional definitions of a particular service can become blurred.

Good matching in befriending services CASE STUDY: BARRY Barry worked in a shipyard as a fitter. He now lives on his own following the death of his wife two years ago. Six months ago, he was given a diagnosis of Lewy body dementia. Barry was referred for a community care assessment as part of his post-diagnostic support. Barry told the social worker that he felt very lonely. She referred him to a befriending service. Barry did not get on with the first volunteer who visited him but was eventually matched with Alan, a retired carpenter. Alan and Barry meet once a week, sometimes in Barry’s flat and sometimes in a local pub. A highlight for Barry and Alan was a visit to the National Maritime Museum in Greenwich. Barry took a photograph of them both standing in front of the Ship in a Bottle, a scaled model of Nelson’s Victory. A copy of this photograph has pride of place on both men’s mantelpieces.

Dementia in the Community

Assistive technology and telecare Assistive technology and telecare devices for people with dementia include a wide range of products, ranging from simple electronic calendars to help people with dementia remain oriented in time, to sensors and fall detectors which transmit information that a person has got out of bed or fallen, to automated shut-off devices which can turn off cookers or taps should they have been left on inadvertently (Woolham et al. 2018). A number of websites exist offering advice on assistive technology and telecare. However, given that many people with dementia and family members use their own financial resources or direct payments to purchase products, it is important that they are informed that some websites have a financial interest in selling the products they describe. In addition, some people with dementia and their carers use conventional technology, such as smart phones, to help increase their safety (Mitchell 2017). Evidence on the effectiveness of assistive technology and telecare for people with dementia is equivocal, with some manufacturers overclaiming about the difference their products can make to help people with dementia to remain at home (Fleming and Sum 2014). At the same time, better assessments and training may help avoid situations in which expensive telecare solutions prove to be unsuitable and unsustainable (Woolham et al. 2018).

Housing Housing has often been treated as a separate topic from care, to the detriment of finding ways of enabling people with dementia to remain living in their own homes for longer. Options include handyperson schemes which can help with safety aspects such as fitting locks and alarms (Moriarty and Manthorpe 2013); Homeshare (2017) in which a person pays reduced rent in return for assistance with tasks such as cooking and cleaning; and extra care housing which combines accessible housing with access to care delivered in people’s own homes. Extra care housing potentially offers the ability to increase support while enabling the person with dementia to live at home. It is seen as offering greater choice and less stigma than living in a care home but, as the availability of extra care housing varies across different parts of the UK, not everybody who would like this option is able to choose it (Moriarty 2016).

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Conclusion The services described in this chapter offer a practical way of providing additional support to people as their dementia progresses, in a way which compensates for the specific difficulties they face while enabling people to continue to do the activities that are important to them, or even to learn new ones (for example, Hicks et al. 2017). Over the years, there has been a shift towards making these services more personalised, either through direct payments or through tailoring support more closely to people’s own interests and priorities. However, access to this type of support remains variable and is often only offered on a temporary basis, which does not reflect the length of time for which some people remain living at home after developing dementia. In addition, family carers are also likely to need community services in their own right, such as a chance to have a regular break from caring.

STOP AND REFLECT Can you think of three benefits and three potential barriers to using a direct payment for a person with dementia? What is the value of knowing about a person with dementia’s past life and interests when finding a service that they would enjoy? What would you say to a carer who wanted a break from caring but was worried that the person for whom they cared would refuse to try any of the services that they were offered?

References Alzheimer’s Society (2018) Carer Support. London: Alzheimer’s Society. www.alzheimers. org.uk/info/20091/what_we_think/86/carer_support (Accessed 17 April 2018). Andrew, T., Moriarty, J., Levin, E. and Webb, S. (2000) Outcome of referral to social services departments for people with cognitive impairment. International Journal of Geriatric Psychiatry. 15(5): 406–414. Brooks, J., Mitchell, W. and Glendinning, C. (2016) Personalisation, personal budgets and family carers. Whose assessment? Whose budget? Journal of Social Work. 17(2): 147–166. Charlesworth, G., Shepstone, L., Wilson, E., Reynolds, S., Mugford, M., Price, D. et al. (2008) Befriending carers of people with dementia: randomised controlled trial. British Medical Journal. 336(7656): 1295–1297. Contact the Elderly (n.d.) Become a volunteer. www.contact-the-elderly.org.uk/become-avolunteer (Accessed 25 April 2018). de Bruin, S., Oosting, S., van der Zijpp, A., Enders-Slegers, M.-J. and Schols, J. (2010) The concept of green care farms for older people with dementia: an integrative framework. Dementia. 9(1): 79–128.

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Dementia Adventure (2018) Retaining adventures. https://dementiaadventure.co.uk (Accessed 25 April 2018). Department of Health and Social Care (2018) A Consultation on Extending Legal Rights to Have for Personal Health Budgets and Integrated Personal Budgets. Prepared by the Department of Health and Social Care and NHS England. London: Department of Health and Social Care. Evans, S.C., Garabedian, C. and Bray, J. (2017) ‘Now he sings’: the My Musical Memories Reminiscence Programme: personalised interactive reminiscence sessions for people living with dementia. Dementia. http://dx.doi.org/10.1177/1471301217710531 (Accessed 30 April 2018). Fleming, R. and Sum, S. (2014) Empirical studies on the effectiveness of assistive technology in the care of people with dementia: a systematic review. Journal of Assistive Technologies. 8(1): 14–34. Gaugler, J.E. and Zarit, S.H. (2001) The effectiveness of adult day services for disabled older people. Journal of Aging and Social Policy. 12(2): 23–47. Halley, E., Boulton, R., McFadzean, D. and Moriarty, J. (2005) The Poppy Café: a multiagency approach to developing an Alzheimer café. Dementia. 4(4): 592–594. Health Foundation (2018) The nation’s health as an asset. www.health.org.uk/publications/ the-nation-health-as-an-asset (Accessed 30 April 2018). Hicks, B., Carroll, D., Shanker, S. and El-Zeind, A. (2017) ‘Well I’m still the Diva!’ Enabling people with dementia to express their identity through graffiti arts: innovative practice. Dementia. http://dx.doi/org.10.1177/1471301217722421 (Accessed 26 April 2018). Homeshare UK (2017) Sector Report 2017. Liverpool: Shared Lives Plus. Laybourne, A.H., Jepson, M.J., Williamson, T., Robotham, D., Cyhlarova, E. and Williams, V. (2014) Beginning to explore the experience of managing a direct payment for someone with dementia: the perspectives of suitable people and adult social care practitioners. Dementia. 15(1): 125–140. Life Changes Trust (2015a) Media Release: Dementia befriending service in Lanarkshire awarded £93,000 funding boost. Glasgow: Life Changes Trust. Life Changes Trust (2015b) Media Release: £84,000 windfall for Stirling dementia befriending service. Glasgow: Life Changes Trust. London Borough of Redbridge (2018) Dementia Walk and Talk. www.redbridge.gov.uk/ redbridge-events/dementia-walk-and-talk (Accessed 30 April 2018). Manthorpe, J. and Samsi, K. (2013) ‘Inherently risky?’ Personal budgets for people with dementia and the risks of financial abuse: findings from an interview-based study with adult safeguarding coordinators. British Journal of Social Work. 43(5): 889–903. Melunsky, N., Crellin, N., Dudzinski, E., Orrell, M., Wenborn, J., Poland, F., et al. (2013 The experience of family carers attending a joint reminiscence group with people with dementia: a thematic analysis. Dementia. 14(6): 842–859. Mitchell, W. (2017) Medical emergency bit on iphone… https://whichmeamitoday.wordpress. com/2017/02/16/medical-emergency-bit-on-iphone (Accessed 17 March 2018). Moriarty, J. (2016) The Death of Heather Pritchard: an everyday story of inadequate social care. In C. Courage, N. Headlam and P. Matthews (eds) The Archers in Fact and Fiction: Academic Analyses of Life in Rural Borsetshire. Bern: Peter Lang Publishing Group. Moriarty, J. and Manthorpe, J. (2013) Handyperson schemes and the Equality Act 2010. Housing, Care and Support. 16(3/4): 114–125. Moriarty, J., Manthorpe, J. and Harris, J. (2018) Recruitment and Retention in Adult Social Care Services. London: King’s College London, Social Care Workforce Research Unit. Needham, C. (2013) Personalized commissioning, public spaces: the limits of the market in English social care services. BMC Health Services Research. 13(1): S5.

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Nikmat, A.W., Hawthorne, G. and Al-Mashoor, S.H. (2013) The comparison of quality of life among people with mild dementia in nursing home and home care – a preliminary report. Dementia. 14(1): 114–125. Orellana, K. (2018) Day centres are important to older people – lack of money shouldn’t jeopardise this. Community Care. 4 January. www.communitycare.co.uk/2018/01/04/ day-centres-important-older-people-lack-money-shouldnt-jeopardise (Accessed 1 May 2018). Osman, S.E., Tischler, V. and Schneider, J. (2014) ‘Singing for the Brain’: a qualitative study exploring the health and well-being benefits of singing for people with dementia and their carers. Dementia. 15(6): 1326–1339. Phillips, R. and Evans, B. (2016) Friendship, curiosity and the city: dementia friends and memory walks in Liverpool. Urban Studies. 55(3): 639–654. Prince, M., Knapp, M., Guerchet, M., McCrone, P., Prina, M., Comas-Herrera, A. et al. (2014) Dementia UK Update. London: Alzheimer’s Society. Roe, B., McCormick, S., Lucas, T., Gallagher, W., Winn, A. and Elkin, S. (2014) Coffee, cake and culture: evaluation of an art for health programme for older people in the community. Dementia. 15(4): 539–559. Rokstad, A.M.M., McCabe, L., Robertson, J.M., Strandenæs, M.G., Tretteteig, S. and Vatne, S. (2017) Day care for people with dementia: a qualitative study comparing experiences from Norway and Scotland. Dementia. http://dx.doi.org/10.1177/1471301217712796 (Accessed 24 April 2018). Shared Lives (2017) The State of Shared Lives in England, Report 2017. Liverpool: Shared Lives Plus. Woolham, J.G., Steils, N., Fisk, M., Porteus, J. and Forsyth, K. (2018) The UTOPIA Project: using telecare for older people in adult social care. The findings of a 2016–17 national survey of local authority telecare provision for older people in England. London: King’s College London, Social Care Workforce Research Unit.

Chapter 22

Care of People with Dementia in a Primary Care Setting Steve Iliffe

Learning objectives By the end of this chapter you will: • Understand and discuss the varied ways in which dementia emerges, and give examples from your own practical or personal experience. • Be able to describe the interactions between cognitive decline and other morbidities, and the implications of these interactions for clinical work. • Be able to plan responses to people with dementia who develop challenging behaviours and symptoms.

Introduction Few nurses have no contact with people with dementia symptoms, but the encounters nurses have will vary depending on where they work. For nurses employed by mental health services or as Admiral Nurses, working with people affected by dementia is an everyday task. This makes them a resource of expertise in the community, but other types of communitybased nurses also engage with people with dementia and their families. This chapter explores the significance of dementia for three types of nurse in the primary care setting: the practice nurse, who encounters dementia as an emerging disability; the district or community nurse. whose clientele may have dementia overshadowed by important long-term conditions; and the nurse working in a care home (see also Chapter 24), who solves problems caused by dementia symptoms every working day. Because dementia is largely associated with later life this chapter focuses on older people. 289

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Practice nurses: an emerging disability A large part of practice nurse work is about monitoring long-term conditions in older people, which puts nurses in a position where they may see the emergence of cognitive impairment, even if they do not at first register the significance of it. The conversations that practice nurses have with their older patients whilst checking blood pressure, weight, glucose levels or lung function can contain clues about worsening cognitive function. Practice nurses may see these clues before doctors do, so an awareness of what changes occur at the beginning of the dementia process is important. The public and many professionals associate dementia with loss of memory, but this is most typical of Alzheimer’s disease (not the other forms of dementia). Even in Alzheimer’s disease other problems with cognitive functioning (like the ability to plan, or carry out once-easy tasks), or changes in personality, may be more prominent. These clues are important to listen for because they are the types of change that are attributable to a range of other events in a person’s life (like bereavement, moving house and family change). Table 22.1 shows some of the small changes, which, added together, suggest cognitive impairment. Table 22.1: Early features of dementia Normal cognition

Early dementia

Memory

Occasional lapses

Loss of memory for recent events

Orientation

Full in time, space and person

Variable disorientation in time and place

Judgement and problem-solving

Solves everyday problems

Some difficulty with complex problems

Outside home

Independent functioning

Engaged in some activities but not independently; may appear ‘normal self ’

At home

Activities and interests maintained

More difficult tasks and hobbies abandoned

Personal care

Fully capable

Needs some prompting

Based on the Clinical Dementia Rating scale (CDR) (Hughes et al. 1982)

Loss of memory for recent events – like a hospital appointment, or a pleasurable family gathering – may become apparent in conversation. A family member may report an episode of confusion about dates and times, or about where they were, that faded away after a while. Some difficulty with complex problems may be revealed by the list of questions and tasks that the individual brings to the consultation, or specific changes may be

Dementia in a Primary Care Setting

reported by a friend or family member – like uncertainty about operating the washing machine, or struggling with the TV’s remote control. Often the individual with cognitive impairment appears to be their normal self, and their impairment is only revealed by chance, when they seek help from a family member to answer a question. This ‘normalisation’ is not restricted to relatives and friends: see the case study of practice nurses, in which nurses compensate for their clients’ forgetfulness. Loss of interest in hobbies can come up in conversations, and needing some prompting about clothing – appropriateness for the weather, cleanliness – may be mentioned by family members or friends. Emotional changes can be attributed by well-meaning family or friends to external causes (e.g. conflicts with neighbours, recovering from illness) or framed as ‘somebody’s fault’: ‘My mother was upset by my brother’s divorce and this has caused her distress’, ‘The cleaner must be up to something because my aunt is so suspicious of her’, and so on. Growing public awareness of dementia means that many older people with memory difficulties wonder if they have it. Their suspicion that they may have dementia may encourage them to try to cover problems up at first, before revealing their worries. We fear dementia more than any other condition now. David Cameron, as Prime Minister, supported the evolution of a dementia strategy for the NHS, backed by Alzheimer’s Society. Despite Alzheimer’s Society’s efforts to help people with dementia to live well with the condition, he expressed a negative, frightening and commonplace view of dementia: Former Prime Minister David Cameron described dementia as a ‘world of darkness’ – and recalled visiting people in care homes in his Oxfordshire constituency while still an MP. ‘They were completely disconnected from their surroundings, their relatives, their friends and their lives,’ he said. (BBC News online, 2 December 2017)

Practice nurses need to counter this tendency to catastrophise, in themselves and in others. In the early stages of dementia people’s attitudes to seeking help vary (Pinner and Bouman 2003), and those already seeing practice nurses regularly may ask if their concern needs to be taken further. This is a pivotal moment. Current guidance (NICE 2006) advises that people should not be offered false reassurance (‘I am sure there is nothing to worry about’). Their worries should not be put down to the ageing process (‘We all get a bit forgetful as we get older’), but nor should they be responded to as a crisis or in a way that pathologises the individual. At the same time, the person concerned and their family need to know the differences between subjective memory loss, which increases with age

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but is only weakly predictive of dementia, and mild cognitive impairment, where there is measurable loss of memory functions and thinking abilities, but limited impairment in everyday life and a stronger (but by no means inevitable) link to dementia. Encouraging the patient to make an appointment with their general practitioner is the first step in sorting out their situation, as is asking permission to mention to their doctor the concerns they have raised.

CASE STUDY: PRACTICE NURSES REMINDING FORGETFUL PATIENTS Three practice nurses working in a large city practice described (during an educational meeting in the practice) how they had a list of patients who they phoned before every planned review appointment, to remind them to come. They had adopted this policy to reduce missed appointments, but had not told the GPs, who were surprised because the patients named by the nurses were not people they had concerns about.

There may be situations when the practice nurse seems to be alone in identifying changes. The older person themselves may not recognise the extent of change or accepts ‘muddle’, ‘dithering’ or ‘pottering along’ as part of ageing. Memory loss – which most professionals and members of the public alike think is the defining symptom of dementia – may not be the dominant change in thinking. Family members may have no anxiety about the muddled person or they may ascribe changes to an external factor, but the nurse might be left feeling that these explanations do not fully fit the picture of change. Practice nurses may feel that there is a risk of harm if they raise their concerns with the individual or with their family. This concern is realistic because there are risks to receiving a diagnosis of dementia (Bamford et al. 2004; Iliffe and Manthorpe 2004). These include the potential for stigma and negative stereotyping that can jeopardise existing social support, or prompt well-meaning but overprotective measures that infantilise the older person. The effects of receiving a diagnosis of and label of dementia can be profound. It may affect the individual’s confidence or self-esteem, as well as sowing seeds of doubt among family members or professionals about whether it is worth establishing support for a person in their own home, and manage the risks that this might entail. However, good practice requires at least a discussion with the family’s doctor, plus documentation of what they have observed.

Dementia in a Primary Care Setting

STOP AND REFLECT What words should you listen for when working with older patients that might make you wonder about possible early dementia?

District and community nurses: dementia and multi-morbidity District nurses have a case mix dominated by diabetes, cardiovascular disease, cerebrovascular disease (especially stroke), frailty, arthritis in all its forms, wound care and palliative care (Olver and Buckingham 1997). The first four in particular are strongly associated with cognitive impairment, but dementia may be overshadowed by the severity of these conditions. Such overshadowing matters because district nurses are mainly demand-led and therefore reactive care providers (Stuart et al. 2008) who work with large case-loads. Seeing hidden dementia may be difficult because other problems – the leg ulcer that will not heal, disabling chronic obstructive pulmonary disease, poorly controlled urinary incontinence – are more visible, disabling and demanding. Overshadowing may make sense. From the person’s point of view their painful swollen leg, their shortness of breath on slight exertion, or their continuous need to manage their incontinence may be much more significant than their memory loss, muddled thinking or inability to work the TV remote control. Nevertheless district nurses need to look for the overshadowing of dementia, if only because cognitive impairment can reduce concordance with treatments and disrupt care plans.

CASE STUDY: COMMUNICATION AND NEGLECT The district nurse who visited a woman in her early nineties to dress her leg ulcer was shocked by the woman’s living conditions and behaviour. Her flat was occupied by lots of cats, and there were plates of cat food scattered about, which attracted flies. She pushed the handle end of a fork inside her ulcer dressings because the ulcer was so irritating, which enabled the flies to lay their eggs in the wound. The woman had been a wartime refugee, her English was heavily accented and she often reverted to her first language. She was difficult to understand, which masked her confusion and delayed the involvement of mental health services in her care.

District nurses have longer consultations than many other NHS professionals, develop a deeper knowledge of their clients (and their

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families), and are more likely to represent their workload as a process of assessing risk and responding to clients’ needs, as opposed to defining clients by their medical diagnoses (Stuart et al. 2008). The nursing focus on meeting needs rather than working with diagnoses makes sense in dementia, which is so often mixed up with other conditions even when it is not overshadowed by them. For example, depression and dementia can be difficult to distinguish, possibly because they are not as different as we have come to think (see Chapter 3). Both conditions show similar neurobiological changes, particularly white matter disease in the brain, indicating that depression and dementia might share risk factors, or possibly that they share a common pattern of neuronal damage (Bennett and Thomas 2014). In addition to the overlaps between diabetes, heart disease and dementia, some clinicians increasingly think that dementia may be part of a triad of impairments: cognitive (dementia), emotional (depression) and physical (disability and frailty) (Chapko et al. 2016). This clustering of conditions in the population is now called a ‘syndemic’ (synergisticendemic) disorder (Singer et al. 2017) because the conditions are common (endemic) and exacerbate each other (synergistic). The clinical relevance for district nurses is that improving one condition – perhaps by increasing movement and reducing frailty – may have beneficial effects on the others. Conversely a worsening of dementia, as occurs in the step-wise changes in vascular dementia, may be followed by a worsening of physical frailty, or of depression. Syndemic disorders are difficult to untangle and manage; dialogue between district nurses and community mental health teams should be routine.

STOP AND REFLECT Thinking about the most complex people on your case-load, which do you think might have dementia even though they have not got a diagnosis in their records, and why do you think this?

Care home nurses: behavioural and psychological symptoms of dementia Two in every three residents in care homes have cognitive impairment, even if they do not have a formal diagnosis of Alzheimer’s disease or other dementia type. Nurses employed by care homes become experts in dementia through experience in working with people who have symptoms attributable to dementia (see Chapter 24). Such symptoms can be the

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first indication of dementia, so their appearance in a resident who is not thought to have cognitive impairment should alert the care home nurses to the possibility of dementia. Symptoms include depression, psychosis, aggression, wandering, agitation, apathy and emotional distress. These can affect the ability of the individual to sustain everyday activities, and reduce quality of life for all those affected – both the person with dementia and their carers. They can cause or exacerbate sleep deprivation, fatigue and eating problems. These symptoms typically emerge in three phases as the dementia develops: (1) irritability, depression and night-time behaviour changes; (2) anxiety, appetite changes, agitation and apathy; and (3) elation, motor disturbances, hallucinations, delusions and disinhibition (Masters et al. 2015). These symptoms have acquired different names: ‘neuropsychiatric symptoms’ (NPS – used by doctors), ‘behavioural and psychological symptoms of dementia’ (BPSD – also medical) and ‘challenging behaviour’ or ‘behaviour that challenges’ (more social than medical). There is a tendency to use these terms interchangeably, but they are different in origins and meaning. The terms ‘NPS’ and ‘BPSD’ describe a range of challenging symptoms that may be hard to manage for family carers and practitioners alike (Kales, Gitlin and Lyketsos 2015). ‘Challenging behaviour’ is a term that has been adapted from the field of learning disability, and incorporates other terms used previously such as ‘behavioural disturbance’, ‘problematic behaviours’, ‘behavioural problems’ and ‘difficult behaviour’ (Krishnamoorthy and Anderson 2011). The term ‘BPSD’ has the advantage of including symptoms and behaviours that do not challenge, like apathy. The apathetic person affected by dementia sits quietly and only challenges those who would like them to take part in activities, or to respond to communication. The concept of challenging behaviour has advantages over the term ‘BPSD’ because it takes into account the intrinsic and extrinsic factors involved in the origins of the behaviour. For example, agitation may be due to pain that the individual cannot express in words, or even localise to any part of the body; or it may be triggered by the unintentional actions of staff. A quick way to gauge whether intrinsic or extrinsic factors are creating challenging behaviour is to apply the ‘rule of thumb’ PAID: P – Physical problems, e.g. infection, pain A – Activity-related, e.g. dressing, washing I – Intrinsic to dementia, e.g. ‘wandering’ D – Depression and delusions

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Antipsychotic medications have been used to manage behavioural and psychological symptoms of dementia (BPSD) but the potential risks of stroke associated with these medicines make non-pharmacological interventions (NPIs) preferable (see Chapter 3). There is evidence of efficacy (with few adverse effects) for non-pharmacological treatments like exercise and cognitive behaviour therapy, but their provision and uptake remain inadequate in real-world settings (Kales et al. 2014). Ethnographic case studies suggest that NPIs are used in many care homes but predominantly as activities to improve the quality of life of all residents and not specifically as therapies to prevent or manage specific behaviours in individuals. If NPIs are to become viable alternatives to antipsychotic medications in care homes, further work on a research and development agenda is needed to embed them into usual care practices and routines (Backhouse et al. 2016). Care home nurses therefore currently find themselves in a predicament when managing these difficult symptoms, with staff and other residents seeking an end to challenging behaviour and sometimes favouring sedation, whilst medical advice urges non-medical responses. Challenging behaviour may respond to intense staff support for the resident, but what if there are no staff available? Solutions have to be found on a case-by-case basis, which means that care home nurses need to develop good working relationships with pharmacists, GPs, community geriatricians, and old age psychiatrists and psychologists, in order to draw upon their individual and collective expertise.

CASE STUDY: ANNA A care home worker reports that Anna, an 84-year-old woman with known Alzheimer’s disease, lashes out whenever she tries to help her have her daily bath. The care home nurse uses the DICE analytic tool (Kales et al. 2014) to develop a response, where D refers to describing the challenging behaviour in detail (as if in a movie), I refers to investigating causes (PAID can be used here), C refers to creating solutions, and E reminds the staff of the need to evaluate outcomes. In this case study the carer’s report about ‘lashing out’ describes verbal and physical aggression, which the staff member thinks is deliberate and personal, whilst Anna talks of ‘pain’. Anna is known to have osteoarthritis, but takes little medication for it. The carer gets frustrated when her intention to help Anna with bathing is resisted. There are several possible solutions to the aggressive behaviour in this case, including interventions to reduce pain (paracetamol, and

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possibly physiotherapy), carer education about the impersonality of the challenging behaviours, and reducing the frequency of bathing. The care home nurse reviews the situation with the carer and Anna to see which responses were most effective and helpful.

STOP AND REFLECT Think of the most recent problem of challenging behaviour that you have encountered – not necessarily in your work, quite possibly in your family or social network. What were the causes of the challenging behaviour? How did you respond to it? What might you do differently if you encountered it again?

Conclusion The common thread across all three working environments is the need for inter-disciplinary discussions in which the perceptions of nurses can be compared with other views, to guide actions. The practice nurse is not a diagnostician, but can see patterns of behaviour that may warrant further analysis by such a practitioner. The district nurse understands the layers of morbidity that her clients often have, and that so often overshadow failing cognition, but other views may be needed to confirm her suspicions and to separate syndemic clusters into their component conditions. The care home nurse tries to apply a biological, social and psychological understanding to challenging behaviours, but this too may need to be cross-checked with other understandings before optimal solutions can be tried. None of these tasks is easy, but they are easier in situations of professional interconnectedness.

References Backhouse, T., Killett, A., Penhale, B. and Gray, R. (2016) The use of non-pharmacological interventions for dementia behaviours in care homes: findings from four in-depth, ethnographic case studies. Age and Ageing. 45(6): 856–863. Bamford, C., Lamont, S., Eccles, M. et al. (2004) Disclosing a diagnosis of dementia: a systematic review. International Journal of Geriatric Psychiatry. 19: 151–169. Bennett, S. and Thomas, A.J. (2014) Depression and dementia: cause, consequence or coincidence? Maturitas. 79(2): 184–190. Chapko, D., Staff, R.T., McNeil, C.J., Whalley, L.J., Black, C. and Murray, A.D. (2016) Latelife deficits in cognitive, physical and emotional functions. Age and Ageing. 45: 486–493.

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Hughes, C.P., Berg. L., Danziger, W.L., Coben, L.A. and Martin, R.L. (1982) A new clinical scale for the staging of dementia. British Journal of Psychiatry. 140: 566–572. Iliffe, S. and Manthorpe, J. (2004) The hazards of early recognition of dementia: a risk assessment. Aging and Mental Health. 8(2): 99–105. Kales, H.C., Gitlin, L.N., Constantine, G. and Lyketsos, C.G., for the Detroit Expert Panel on the Assessment and Management of the Neuropsychiatric Symptoms of Dementia (2014) Management of neuropsychiatric symptoms of dementia in clinical settings: recommendations from a multidisciplinary expert panel. Journal of the American Geriatric Society. 62: 762–769. Kales, H.C., Gitlin, L.N. and Lyketsos, C.G. (2015) Assessment and management of behavioral and psychological symptoms of dementia. British Medical Journal. 350:h369. Krishnamoorthy, A. and Anderson, D. (2011) Managing challenging behaviour in older adults with dementia. Progress in Neurology and Psychiatry. 15(3): 20–27. Masters, M.C., Morris, J.C. and Roe, C.M. (2015) ‘Noncognitive’ symptoms of early Alzheimer disease: a longitudinal analysis. Neurology. 84: 1–6. NICE (National Institute for Health and Clinical Excellence) (2006) Dementia: Supporting people with dementia and their carers in health and social care. Clinical Guideline 42. www.nice.org.uk/guidance/cg42 (Accessed 14 Dec 2017). Olver, L. and Buckingham, K. (1997) Analysis of district nurse workload in the community. British Journal of Community Health Nursing. https://doi.org/10.12968/ bjch.1997.2.3.127 (Accessed 14 Dec 2017). Pinner, G. and Bouman, W.P. (2003) Attitudes of patients with mild dementia and their carers towards disclosure of the diagnosis. International Psychogeriatrics. 15: 279–288. Singer, M., Bulled, N., Ostrach, B. and Mendenhall, E. (2017) Syndemics and the biosocial conception of health. The Lancet. 389: 941–950. Stuart, E.H., Jarvis, A. and Daniel, K. (2008) A ward without walls? District nurses’ perceptions of their workload management priorities and job satisfaction. Journal of Clinical Nursing. doi: 10.1111/j.1365-2702.2008.02316.x (Accessed 14 Dec 2017).

Further reading Katsuno, T. (2005) Dementia from the inside: how people with early-stage dementia evaluate their quality of life. Ageing and Society. 25: 197–214.

Chapter 23

Care of People with Dementia in an Acute Hospital Setting Katie Featherstone and Andy Northcott

Learning objectives By the end of this chapter you will: • Recognise that people living with dementia form a significant population within the acute hospital setting. • Understand why people living with dementia may resist and refuse everyday care, such as at mealtimes and medication rounds, when admitted to the acute setting. • Be able to demonstrate ways to minimise the risk of resistance and refusal of care, to improve patient and staff experiences of care.

Introduction The acute hospital setting has become a key site of care for people living with dementia. The Royal College of Psychiatrists (2006) found that as many as one in four acute hospital beds were occupied by a person living with dementia at any one time, however Alzheimer’s Society (2016) estimates this number to be as high as one in two in some areas. Our own research supports this, suggesting that it is not unusual for a third of acute care beds to be occupied by either people living with dementia, or significant numbers of patients who nursing staff suspect may be living with dementia, but have yet to receive formal diagnosis (Goldberg et al. 2012; Sampson et al. 2009; Russ et al. 2012). Research has made clear that an admission to an acute setting has negative outcomes for people living with dementia. Both cognitive and functional decline are common (Goldberg et al. 2012; Creditor 1993; Sager, Franke and Inouye 1996), with a high risk of malnutrition and

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the development of incontinence (Phelan et al. 2012). These factors are linked to difficulties articulating pain for people living with dementia (see Chapter 19), contributing to a significant under-prescription of painkilling medication compared to the general patient population (Morrison and Siu 2000; Banicek 2010; Rantala et al. 2014). For a person living with dementia an admission to an acute ward for a relatively minor complaint can quickly escalate, resulting in further dependency, institutionalisation and even death (Thornlow, Anderson and Oddone 2009; George, Long and Vincent 2013). Anecdotal evidence we have gathered from carers’ groups make it clear that, for the families and loved ones of a person living with dementia, an acute hospital admission is something to dread. That action is required to improve acute services for people living with dementia, and their families, is becoming increasingly recognised at a policy level (NICE/SCIE 2006; RCPsych 2006; NAO 2007; House of Commons 2008; Department of Health 2009, 2013; Health Foundation 2011; Francis Report 2013; CQC 2014a; 2014b). Despite this, Alzheimer’s Society (2016) continues to report widespread poor care, with significant variation in care quality between hospitals. Similarly, the Care Quality Commission (CQC) (2014a) recognises that people living with dementia are still ‘likely to experience poor care at some point along their care pathway’ (p.9). Although there is recognition that many hospitals have initiatives to improve the environment and support they provide for people living with dementia (Deloitte UK 2014), there is an acknowledgement that hospitals are still struggling to respond to the needs of an ageing population (CQC 2014b). In response, recent reviews (Elliott et al. 2012; Moyle et al. 2008) suggest that, prior to developing interventions and implementing policy solutions, first detailed research is required to understand the role and needs of healthcare staff caring for this patient population (Elliott et al. 2012) and to explore what constitutes ‘good care’ within the acute setting (Moyle et al. 2008). Too much of what is considered good care or best practice for people living with dementia in the acute setting is drawn from longterm specialist facilities (Moyle et al. 2008). This overlooks that an acute hospital ward has markedly different organisational structures, cultures and goals. Studies have highlighted the difficulties of caring for people living with dementia within the acute hospital setting (Tadd et al. 2011; Dewing and Dijk 2014), and how the setting itself – where staff have little time to familiarise themselves with patients as individuals, where lights and noise are round-the-clock constants and where people are constantly coming and going – can be distressing and disorientating.

Dementia in an Acute Hospital Setting

Our research (drawn from 150 days of research observation on ten acute wards across England and Wales, and interviews with over 400 nurses, health care assistants (HCAs), patients and family carers) confirmed that at present an acute admission remains challenging for patients, for their families and for the staff responsible for their care. However, we were also able to identify several areas where small changes to practice and expectations may improve the experience of both delivering and receiving care for people living with dementia in the acute setting, which this chapter will detail.

Recognition that people living with dementia are a core population The porters and nurses at the station keep asking me (researcher) why I am watching this ward (Medical Assessment Unit); they each tell me that the ward on the fourth floor is the one I should be observing to see dementia and challenging behaviours. The porter tells me that he took a patient I had been observing the night before up there earlier, that you feel sorry for the quiet ones up there, that they just want to go home. (Night staff).

While significant numbers of people living with dementia are admitted to acute settings, their presence is not recognised as a core population. At both the organisational and ground level of the wards there is a reluctance to accept that people living with dementia are a core cohort within the daily admissions. Misconceptions abound. At an organisational level, it is presumed that people living with dementia are not admitted to acute wards, and instead are admitted or transferred straight to psychiatric or older people’s medicine wards, guided from a perception that this is where people living with dementia belong. People living with dementia simply were not understood to form any kind of significant population in the acute ward. They may be admitted there, but would only be a transitionary presence before their transfer to the ‘right’ area. This is problematic not only in terms of belonging, but also in distributing resources. Specialist dementia services are concentrated on the ‘right’ wards, not the acute wards where people living with dementia can be found. On the acute ward itself, it was accepted that people living with dementia are regularly admitted, but it was still common to question why they were there or what staff could do for them. Staff recognised that they cared for people living with dementia, but also accepted that they lacked the training and resources to do so effectively. As a result, they often held

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preconceptions that there must be a specialist ward within that hospital where most people living with dementia were or should be admitted to and cared for there. Despite such a ward not existing, the admission of a patient with a diagnosis (or suspected diagnosis) of dementia to the acute ward was always viewed as a temporary aberration by staff. A first step to improving care in the acute setting is to increase the recognition and awareness amongst all ward staff that people living with dementia who are admitted with an acute condition are in the right place. There should be an acknowledgement throughout the hospital, from staff on the ward through to Trust management, that patients living with dementia are not a temporary population who belong within another location, but belong and need to be cared for in their acute ward. This is the first step in staff recognising that they must develop appropriate skills and expertise in dementia (and for hospitals to support the development of such skills). Staff need to be equipped to provide high-quality and appropriate care for every person in their ward. The development of staff skills in the acute ward can conflict with this. Hospital systems are designed to care for patients with one clinical problem. This typically leads to the treatment of the patient’s acute admitting condition being prioritised, with the care of their additional dementia diagnosis not recognised by clinical staff as a priority (Tolson, Smith and Knight 1999; Rockwood and Hubbard 2004), or belonging to another specialist member of staff. When acute staff dismiss conditions they see as outside of their specialism, it can be particularly problematic for people living with dementia. First, in many acute settings the dementia specialist simply doesn’t exist, so they find themselves falling between the cracks of older people’s medicine and psychiatric care. Second, people living with dementia do not recognise clinical specialisms, but they do recognise when a member of nursing staff blanks them, or passes on their calls for care, causing confusion and distress.

CASE STUDY: JANE Jane is in her eighties, has a diagnosis of dementia and lives in a residential care home. She has been admitted to the acute hospital with a ‘reduced intake’ but is shown to have no medical issues. She was observed requesting a fresh continence pad. Four doctors from a clinical team are gathered at the nurse’s station directly in front of her bed, but do not respond to her loud calls for their attention. They are not ignoring her it is beyond that, and manifests as a total

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absence of acknowledgement of her presence within the ward. This continues for over 15 minutes, her requests escalating from polite requests to pleading shouts. This is distressing to hear and affects nearby patients. Jane eventually gets the attention of a passing nurse, Rob, but he turns to her and apologetically says that he does not work on this ward, before leaving the foot of her bed and the ward. He does not report her request to another member of the nursing team. After 30 minutes, Jane is admonished by the nurse responsible for her bay as Jane has removed her existing continence pad herself and thrown it onto the floor. The nurse hands her a brown card bedpan and returns to the other end of the bay where she is occupied with another patient. In doing so she misses Jane asking her what it is that she has been given (Jane does not recognise it or its use). Ten minutes later Jane is approached by an HCA, who reacts negatively when she sees that Jane has wet the bed and is trying to stand up from it. Despite having no medical issues, Jane has not been seen by adult services or any of the dementia care specialist team, and instead has been left waiting on a large noisy ward in which she has no clinical need to remain.

Often the current system of ‘compartmentalisation’ of patients based upon their primary condition leaves people like Jane ‘invisible’ to the purpose of the ward. Similarly this ‘blinkered’ approach also affects the ward staff through the narrowing of their remit and roles. There is an urgent need for organisations and ward staff to develop specific care practices that bring together the care of a person’s dementia diagnosis with their acute admitting condition (Hart et al. 2002), and any other multi-morbidities that people living with dementia often have. In current acute hospital practice, specialist nurses and clinical teams will only see or attend to patients on their lists. The reaction of Rob to Jane’s request may represent his way of managing his own case load due to constraints on his practice location, general staffing and time, but can often result in staff ignoring relatively mundane requests from other patients who often may have a diagnosis of dementia. Jane was not aware that he did not work on her ward but this response can typically result in the person’s request escalating into them experiencing agitation, anxiety and aggression or even attempts to leave the ward.

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STOP AND REFLECT Imagine what it would feel like if you were admitted to hospital and didn’t know why. How would you attract the attention of the busy ward staff to explain your feelings and fears, when they seem to fail to acknowledge your distress? Now reflect, as a nurse, how you might reassure a person in this situation, having now placed yourself in their position.

Actions for change Supporting each other: • If you spot a difficult interaction go and support your colleague in trying to communicate with the person with dementia. • Share techniques and approaches that have worked for you if you or a colleague have developed a good relationship with a patient; try to organise care so that you can be consistent in which member of staff attends to each person with dementia. • Recognise and support fear and uncertainty among staff in caring for a person with dementia. • If a patient asks you for something, however mundane, stop to help them. If you do not have time, clearly explain that you will ask somebody to come and help them (and then do this). • Always acknowledge a person with dementia if they call for you, try to meet their need or enquiry with as much immediacy as possible.

The impact of fixed timetables of care Acute hospital wards are busy places with a myriad of micro-activities requiring scheduling each day. Working in a synchronised fashion, ‘like a well-oiled machine’, is perceived by some staff as the only way to get through the work. Patients washed out of bed and dressed, meals distributed, areas cleaned, medical rounds conducted, discharge plans made, therapy assessments completed, bloods taken, medications distributed, transfers signed off and new patients admitted etc. However, stress occurs when there is ‘no slack in the system’, and carefully timetabled routines break down.

Dementia in an Acute Hospital Setting

The timetables and routines of acute wards rarely fit the needs of people living with dementia (Tolson et al. 1999; Pinkert and Holle 2012). A ward that overly focuses on fitting the care of patients into fixed timetables can have adverse consequences for this population, and in turn, their response to such routines can have significant consequences on the ward timetables. When people living with dementia do not fit into fixed ward routines, there is often the perception that it is the person at fault rather than the environment (Kitwood 1993; Borbasi et al. 2006). Such patients are often then labelled ‘difficult’ (Moyle et al. 2008) or ‘demanding’ (Maben et al. 2012) by staff, preventing the delivery of personalised physical, psychological and emotional care (Cornwell 2012) that people living with dementia require (Maben et al. 2012). There are observable potential ‘breaking points’ in the timetable of each ward, which can be particularly affected by people living with dementia. These points are notable for being relatively mundane. These fragile points are largely centred on the tightly scheduled everyday care delivered by nurses and HCAs; however, it is crucial care that may be dismissed as low status (Twigg 2000; Wolkowitz 2006; Simpson et al., 2012) despite the expertise required to carry them out. The following case study looks at a notable example of this: mealtimes.

CASE STUDY: LOUISE Louise is in her late seventies. She lives independently at home, but has been admitted to the acute ward following a fall. Her cognitive abilities seem high, and she spends most of her admission reading her newspaper and chatting to staff. However, at mealtimes she has what the staff label as ‘strops’. She refuses to eat, becomes agitated and has on one occasion become violent towards staff. It is only once a family member visits that nurses learn she retains her independence through maintaining her own very strict routines. She never eats until she has been to the toilet and taken her tablets. On this ward, the medication round is scheduled for after meals, which is confusing Louise. Her family are worried that this information will not be passed on to nurses on other shifts and that Louise will become labelled as difficult.

Mealtimes are perhaps the most rigid of the ward’s timetabled routines: served at set times each day, against the clock in getting the meals onto the ward, distributed to bedsides and then cleared away. Such daily activities

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are crucial to the timetabling of clinical routines, such as the distribution of medication and medical team rounds. Unfortunately, there are often no alternatives considered for the person living with dementia who does not want to eat at these set times, whose waking patterns do not fit these routines, who does not have the cognition to adapt to this different pattern of life, or who will refuse care from the staff only available at rigid time frames. This in turn disrupts the timetable of the ward, throwing the day’s routine out of sync, with a visibly negative impact on ward staff for the rest of their shift – possibly leaving them flustered, frustrated and fearing reproach.

Chain of events For the person living with dementia an inability to recognise the timetable of care can have a significant impact on a chain of events. Every day on any ward, it is possible to observe a person living with dementia turn down or interrupt a meal (or medication, or test) because they do not understand or recognise the importance placed upon the meal’s ‘window of time’. This can lead to ward staff recording that the person is ‘refusing care’, which the discharge team may see out of context many hours later, which in turn can have an impact on decisions about the appropriateness and place of discharge. This has significant implications for the person, their family and their carer, but also the ward and the hospital – which relies on the timetabled flow of patients – leading to a series of negative impacts invisible to each of the actors involved.

STOP AND REFLECT The timetables and routines of care within wards are key opportunities to listen to and see the person (not their diagnosis of dementia), with additional benefits for staff via improved communication, lessened conflict between patients and staff, and reduced potential for staff burnout. Can you identify parts of your working day where you could be more flexible to better facilitate care for a person living with dementia?

Action for change • Do not force the ward routines and rounds on patients with dementia: the routines should fit the patient.

Dementia in an Acute Hospital Setting

• Mealtimes and the delivery of personal care, such as washing and bathing, should be flexible to fit the patient’s needs and preferences. For example, don’t expect a person with dementia to be washed, receive care or eat a meal immediately after you have woken them from sleep. • If a patient with dementia requests or signals for something outside of the routine of delivery on a ward, try to meet that request. Five minutes of care here could save hours of work later.

Refusal and resistance of care in the acute setting Refusal and resistance of care by people living with dementia is a wellrecognised phenomenon within ward life. During our observations every person with dementia rejected care at some point of their admission. A fundamental step for nursing is to recognise that refusal of care is not a feature of a dementia diagnosis, but often a response to the way care is being delivered, or expression of need or lack of need. Ward staff often assume that refusal of care demonstrates a patient’s lack of capacity to make decisions. Research suggests that, conversely, refusal of care demonstrates agency. Many features of the acute ward can be frustrating or threatening for people living with dementia (Moyle et al. 2008; Dewing and Dijk 2014; Pizzacalla et al. 2015), and as such is a rational response to how and where care is being delivered. Ward staff must recognise and, importantly, be enabled and given opportunities to listen to the person living with dementia, and to recognise that when they are saying ‘no’, there is often an underlying reason. They are trying to express a need or to express their autonomy. A key role for nurses and HCAs is to identify what that underlying need is: underlying pain, a care need, continence needs, anxiety about home, possessions or loved ones, or simply wanting to go home (see Chapter 7). By investigating the causes of resistance and refusal it may be possible to avoid the traditional responses towards it: restraint, sedation, securitisation and deprivation of liberty (Sangars, Taylor and Sangars 2014; Pizzacalla et al. 2015). Resistance and refusal to everyday care takes many forms. In staff rooms nurses and HCAs may exchange ‘war stories’ about being sworn at, spat at, bitten, pushed, punched and kicked by people living with dementia. During our observations, we saw all these things happen. For some staff these events may be frightening, distressing and unpleasant; however, such events are not everyday occurrences. Refusal is often passive, but is occurring constantly – the pushing-away of a tray table,

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the pulling-out of an IV cannula, the refusal to open a mouth or swallow, the swearing and the ‘go-away’s. What we were also able to see from the researchers’ privileged position of observing (rather than delivering), care, was that often such behaviour was rational and a response to the patient’s own reality. To the nurse or HCA in the moment, rejection may be seen or felt as personal, but what they did not see was the cup of tea promised but never delivered, the admonishment for standing up from a chair, the disappointment that a visitor has left without them, the toilet trip that never occurred, or the discomfort of another sleepless night on the ward. And while it would be impossible for a member of staff to know all of these things as they follow their busy routines, it is important to the delivery of care to realise that often refusal of care does not happen in isolation, and can be understood.

STOP AND REFLECT Do you see mealtimes and medications rounds as a challenge when caring for people with dementia? Could you re-conceptualise this and see them as opportunities to tailor the support and communication with your patient?

Action for change • As difficult as it may be, do not take refusal or rejection of care personally. • If you give instructions, do not expect them to be followed instantly, or closely. Be flexible and fit in with the patient. • Try to avoid interruptions when delivering care. If you say you will do something for a patient, try to do it. • Try to find the underlying cause of any resistance to care presented by a patient; this is as an opportunity for communication.

Discussion An individual nurse or HCA may believe they lack the power or influence to make significant changes to the timetables embedded in the structural organisation of the hospital, but they can improve care within their ward by making small changes that do not require ‘permission’, cost money or

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demand involvement of the hospital management. These changes may have significant impact on the culture of the ward and improve both the quality and humanity of care for people living with dementia and improve the climate of care for the ward team. It is possible to change routines and challenge negative assumptions on a ward. We must all see the person first before we see their diagnosis of dementia. Rather than viewing a patient as a ‘wanderer’ and making them sit in a chair we should aim to understand what they are seeking, and take their hand as they go for a walk. There is the OT who reminds the team that ‘The lady in bed six can get up and needs to move around.’ There is the nurse who chats about the football results, positions the TV better, changes the channel and brings that cup of tea. And these are often the staff who don’t end the day physically and emotionally exhausted because they have spent the shift in a drawn-out battle with a patient (who wants to leave the bedside and walk around the ward) – repeatedly taking them back to their beds every ten minutes for 12 hours, when all they wanted was to stretch their legs.

References Alzheimer’s Society (2009) Counting the Cost of Care: Caring for People with Dementia on Hospital Wards. London: Alzheimer’s Society. Alzheimer’s Society (2016) Fix Dementia Care: Hospitals. London: Alzheimer’s Society. Banicek, J. (2010) How to ensure acute pain in older people is appropriately assessed and managed. Nursing Times. 6(29): 14–17. Borbasi, S., Jones, J., Lockwood, C. and Emden, C. (2006) Health professionals’ perspectives of providing care to people with dementia in the acute setting: toward better practice. Geriatric Nursing. 27(5): 300–308. Cornwell, J. (2012) The Care of Frail Older People with Complex Needs: Time for a Revolution. London: King’s Fund. CQC (2014a) The State of Health Care and Adult Social Care in England in 2013/14 (Vol. 763). London: Care Quality Commission. CQC (2014b) Cracks in the pathway: People’s experience of dementia care as they move between care homes and hospital. London: Care Quality Commission. Creditor, M.C. (1993) Hazards of hospitalization of the elderly. Annals of Internal Medicine. 118(3): 219–223. Deloitte UK (2014) Dementia Today and Tomorrow: A New Deal for People with Dementia and their Carers. London: Alzheimer’s Society. Department of Health (2009) Living Well with Dementia: A National Dementia Strategy. London: Department of Health. Department of Health (2013) Dementia: A State of the Nation Report on Dementia Care and Support in England. London: Department of Health. Dewing, J. and Dijk, S. (2014) What is the current state of care for older people with dementia in general hospitals? A literature review. Dementia. 15(1): 106–124. Elliott, K.E., Scott, J.L., Stirling, C., Martin, A.J. and Robinson, A. (2012) Building capacity and resilience in the dementia care workforce: a systematic review of interventions targeting worker and organizational outcomes. International Psychogeriatrics. 24(6): 882–894.

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Francis, R. (2013) Report of the Mid-Staffordshire NHS Foundation Trust Public Inquiry: Executive Summary Vol. 947. London: Stationery Office. George, J., Long, S. and Vincent, C. (2013) How can we keep patients with dementia safe in our acute hospitals? A review of challenges and solutions. Journal of the Royal Society of Medicine. 106(9): 355–361. Goldberg, S.E., Whittamore, K.H., Harwood, R.H., Bradshaw, L.E., Gladman, J.R. and Jones, R.G. (2012) The prevalence of mental health problems among older adults admitted as an emergency to a general hospital. Age and Ageing. 41(1): 80–86. Hart, B.D., Birkas, J., Lachmann, M. and Saunders, L. (2002) Promoting positive outcomes for elderly persons in the hospital: prevention and risk factor modification. American Association of Critical-Care Nurses: Clinical Issues. 13(1): 22–33. Health Foundation (2011) Spotlight on Dementia Care: A Health Foundation Improvement Report. London: Health Foundation. House of Commons Public Accounts Committee (2008) Sixth Report of Session 2007–8: Improving Services and Support for People with Dementia. London: Stationery Office. Kitwood, T. (1993) Towards a theory of dementia care: the inter-personal process. Ageing and Society. 1: 51–67. Maben, J., Peccei, R., Adams, M., Robert, G., Richardson, A. and Murrells, T. (2012) Exploring the relationship between patients’ experiences of care and the influence of staff motivation, affect and wellbeing. NIHR Service Delivery and Organisation programme. Morrison, R.S. and Siu, A.L. (2000) A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture. Journal of Pain and Symptom Management. 19(4): 240–248. Moyle, W., Olorenshaw, R., Wallis, M. and Borbasi, S. (2008) Best practice for the management of older people living with dementia in the acute care setting: a review of the literature. International Journal of Older People Nursing. 3(2): 121–130. NAO (2007) Improving Services and Support for People Living with Dementia. London: National Audit Office. NICE/SCIE (2006) Dementia: Supporting People with Dementia and their Carers in Health and Social Care. London: Stationery Office. Phelan, E.A., Borson, S., Grothaus, L., Balch, S. and Larson, E.B. (2012) Association of incident dementia with hospitalizations.  Journal of the American Medical Association. 307(2): 165–172. Pinkert, C. and Holle, B. (2012) People with dementia in acute hospitals: literature review of prevalence and reasons for hospital admission. Zeitschrift für Gerontologie und Geriatrie. 45(8): 728–734. Pizzacalla, A., Montemuro, M., Coker, E., Schindel, M.L., Gillies, L. and Robinson K. et al. (2015) Gentle persuasive approaches: introducing an educational program on an orthopaedic unit for staff caring for patients with dementia and delirium. Orthopaedic Nursing. 34(2): 101–107. Rantala, M., Kankkunen, P., Kvist, T. and Hartikainen, S. (2014) Barriers to postoperative pain management in hip fracture patients with dementia as evaluated by nursing staff. Pain Management Nursing. 15(1): 208–219. RCPsych (2006) Who Cares Wins: Improving the Outcome for Older People Admitted to the General Hospital. London: Royal College of Psychiatrists. Rockwood, K. and Hubbard, R. (2004) Frailty and the geriatrician. Age and Ageing. 33(5): 429–430. Russ, C.T., Shenkin, S.D., Reynish, E., Ryan, T., Anderson, D. and MacLullich, A.M.J. (2012) Dementia in acute hospital inpatients: the role of the geriatrician. Age and Ageing. 41(3): 282–284. Sager, M.A., Franke, T. and Inouye, S.K. (1996) Functional outcomes of acute medical illness and hospitalization in older persons. Archives of Internal Medicine. 156(6): 645–652.

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Sampson, E.L., Blanchard, M.R., Jones, L., Tookman, A. and King, M. (2009) Dementia in the acute hospital: prospective cohort study of prevalence and mortality. British Journal of Psychiatry. 195(1): 61–66. Sangars, D., Taylor, M. and Sangars, B. (2014) Inside the DoLS house: a freedom of information act survey of variations in the use of DoLS in England. Age and Ageing. 43(2): (Issue Supplement) 10. Simpson, R., Slutskaya, N. and Hughes, J. (2012) Gendering and embodying dirty work: men managing taint in the context of nursing care. In R. Simpson, N. Slutskaya, P. Lewis and H. Höpfl (eds) Dirty Work. London: Palgrave Macmillan. Tadd, W., Hillman, A., Calnan, S., Calnan, M., Bayer, T. and Read, S. (2011) Right place – wrong person: dignity in the acute care of older people. Quality in Ageing and Older Adults. 12(1): 33–43. Thornlow, D.K., Anderson, R. and Oddone, E. (2009) Cascade iatrogenesis: factors leading to the development of adverse events in hospitalized older adults. International Journal of Nursing Studies. 46(11): 1528–1535. Tolson, D., Smith, M. and Knight, P. (1999) An investigation of the components of best nursing practice in the care of acutely ill hospitalized older patients with coincidental dementia: a multi-method design. Journal of Advanced Nursing. 30(5): 1127–1136. Twigg, J. (2000) Carework as a form of bodywork. Ageing and Society. 20(4): 389–412. Wolkowitz, C. (2006) Bodies at Work. London: Sage.

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Chapter 24

Care of People with Dementia in a Care Home Setting Caroline Baker

Learning objectives By the end of this chapter you will: • Understand the context of the care home setting for people living with dementia and their carers. • Gain an understanding of the essentials of providing personcentred dementia care within a care home setting. • Appreciate the importance of life story and how such knowledge can enhance communication and interactions. • Understand behaviours of a person living with dementia to improve well-being. • Appreciate how we can support family carers to continue to be involved in the care of the person with dementia.

Introduction There has been great emphasis over recent years on the need to improve dementia care in all care settings. In his report, John Kennedy (2016) stated that we should address the underlying problems within the care sector and that if we at least start to face up to admitting the challenges, we have some chance of getting to some solutions. Similarly, the Care Quality Commission (CQC) recognise that all health and care staff and the services within which they work are under huge pressure, stating that the combination of increased demand and unfilled vacancies means that staff are working ever harder to deliver the quality of care that people have a right to expect (CQC 2017). Equally, and despite this, the majority of

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staff working in dementia care want to learn and to excel at what they do, providing the very best dementia care for our residents. Care homes in England are currently inspected by the CQC and assessed and rated under five domains: are they safe, effective, caring, responsive and well-led? This in turn will then lead to an overall rating of ‘inadequate’, ‘requires improvement’, ‘good’ or ‘outstanding’ (CQC 2018a). The frequency of inspections (which are unannounced) vary by region and may be dependent upon the care home’s previous overall rating. For example, a care home that was rated as good might not be inspected for a further two years, whereas a care home that has been rated as inadequate may be revisited within a six-month period to measure its progress. Of 646 care homes inspected, less than 1 per cent received an overall rating of outstanding and 46 per cent were rated as inadequate or requires improvement (see Table 24.1). Table 24.1: Most recent CQC inspections (CQC 2018b) Number of homes

CQC rating

6

Outstanding

342

Good

238

Requires improvement

60

Inadequate

Communities or part of the community? Care homes can be one of the most energising and inspirational places to provide nursing care, and good care homes can exude a real team spirit whereby roles sometimes blend into each other and staff and residents (and their relatives or friends) become part of a real ‘family’ community. I met a cousin recently who qualified as a nurse a few years ago. She was telling me how frustrated she was with her place of work – the local hospital – with the constant turnover of staff and general lack of resources. I asked her if she had ever considered working in a care home and she replied that she was worried that in doing so she would ‘lose her skills’. I obviously spent the next half an hour putting her right! Unfortunately care homes have received a really bad press over the years with several newspaper reports and TV documentaries showing undercover horror stories of poor care. In a recent media report it was stated that over half the care homes in some parts of the country were rated either poor or inadequate following inspection (Government

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Business 2017). However, we often don’t hear about the other half of care homes that are delivering good care and rated outstanding or excellent by the care home regulatory bodies. (Regulations and ratings vary throughout the UK depending upon the regulatory body.) This negative perception may also be endorsed by the views of some people living with the diagnosis of dementia though not actually resident within a home themselves. Swaffer (2016) argues that residential care facilities talk about, but do not yet deliver, person-centred care as the norm. She proposes that many people in residential care facilities feel as if they have been locked in prison despite reassurances to the contrary. However, she also recognises that the aged care sector in general is making a huge effort to embrace change and provide better care.

The ‘10-60-06’ programme to enhance dementia care Currently there are 14,479 care homes registered with the CQC in England (CQC 2018b), of which the largest proportion (74%) are categorised as Residential Homes and as such do not require 24-hour nursing supervision. Whilst there are other large corporate providers, such as Barchester Healthcare,1 the majority of homes are independently owned. It is highly possible that many of the staff within such homes have not been exposed to (or offered) any significant training in dementia care or perhaps introduced to latest evidence and research-based practice in dementia care. For the past two years, Barchester Healthcare have been piloting a programme to enhance dementia care across 12 of its homes. The programme facilitates the care team to focus on a 76-point set of criteria that is evidence based (Baker 2017). Results of an initial pilot of the programme revealed some significant positive outcomes for the residents, such as weight gain, a reduction in levels of distress and improvement in levels of well-being (see Box 24.1). Box 24.1 – Outcomes of the initial pilot of 10-60-06 • 11% reduction in falls across the pilot homes • 22% reduction in recorded distress reactions • 17% reduction in the use of anti-psychotic medications

1 See www.barchester.com/company-profile.

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• 79% reduction in the use of anxiolytic medications • 29% reduction in the use of night sedations • 38% of residents have gained weight since being on the programme • 43% of residents have experienced an improvement in their well-being scores.

In some respects, I am not entirely sure that it is the application of the criteria themselves that has influenced the changes; rather it may be more to do with giving care staff the opportunity to explore their own solutions to issues and enhance aspects of care that are covered within the criteria. In addition the staff receive four levels of training in dementia care as they progress through the programme; this supports staff to reflect on their approach to care and whether or not it aligns with evidence-based practice.

Fundamental care This may seem obvious, and these may be elements of care that perhaps shouldn’t need highlighting, but if we are caring for people with a cognitive impairment, it may not be immediately obvious what the person needs; we therefore have to be pro-active as well as responsive in our approach. Thinking about ourselves, if we do not drink enough, we may get a headache, feel a bit miserable or, at its extreme, become confused. If we are hungry, we may feel tired or a bit irritable. How many of us have sat in an uncomfortable chair during a conference, lecture or meeting wishing that it would hurry up and end because we just want to get up to stretch our legs or ease our back? If we add in to the mix that we also need to use the toilet, we may start to become really fidgety or irritable. People living with dementia are no different from us, except that for many they may not be able to make their needs known, and rely on us to recognise the signs and ask if they need assistance, or provide them with what they may need.

CASE STUDY: JOHN Whilst observing John within a communal lounge, I initially recorded that he appeared to be happily engaged watching the television. John was actually so focused on the TV that when somebody tried to talk to him, his gaze remained fixed on the screen (a wildlife programme showing brightly coloured birds). After about 20 minutes, John started

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to become a little restless, moving around in his chair. After a further five minutes, John attempted to get up out of his chair but a passing carer called out ‘Sit down, John’ which he promptly did. However, he continued to appear restless and his levels of well-being began to decline. Ten minutes later, another carer was walking towards John and, seeing that he looked uncomfortable, asked if he needed anything. John was not able to articulate what he needed and so she asked if he wanted to go somewhere. John nodded and she assisted him to stand and accompanied him out of the communal lounge. When the observation results were fed back to staff, they agreed that the first carer, although perhaps trying to prevent John from falling, should not have told him to sit down and that it was essentially a form of psychological restraint and in terms of Malignant Social Psychology (MSP), a disempowering action. The staff also discussed and agreed that the second carer had been pro-active and had used Positive Person Work (PPW) in terms of recognition and facilitation of John’s needs.

I have explained this case study in terms of Kitwood’s work around MSP and PPW (Kitwood 1997) (see Chapter 6) as most people are familiar with his work, but within the observational tool we have developed, we frame any emotional losses or gains around the seven domains of wellbeing (Powers 2014). In the frame where we observed the carer telling John to sit down, this would be recorded as a loss of autonomy and a gain in connectedness and autonomy. When we begin to compartmentalise our actions, it can help us to work together to see how, with the right approach, we can maintain or improve well-being levels.

Life Story Work As discussed in Chapter 6, knowing more about the people that we care for is absolutely critical in helping us to provide the very best person-centred dementia care, particularly if the person is no longer able to articulate or express their needs or wishes. Knowing a person’s previous life choices, their favourite things and, equally as importantly, the things that may cause them anxiety or distress can be highly beneficial when delivering care that is truly person-centred. Life Story Work is now a well-established psychosocial intervention within the care home setting and there are many life story templates that can now be downloaded from the internet (Thompson 2011). A person’s life story and memories can be captured through many media formats: life story portraits, books, portable memory

Dementia in a Care Home Setting

boxes and more recently the use of technology – recording photographs, stories and even voices onto an electronic tablet. As I visit care homes in my role as Director of Dementia Care at Barchester Healthcare, it would be impossible for me to know every resident. However, I try to get a sense of their life story before I approach them so that if the person is unable (or initially unwilling) to communicate with me, I can offer conversation that focuses on the things that I have learned about them. I have had some wonderful conversations with residents, often with knowing one simple piece of life story knowledge as the catalyst.

CASE STUDY: GEORGE I was asked to visit a care home and advise on the care of George, who was frequently distressed, not wanting care staff to enter his room but also not liking leaving his room either. He had only resided in the care home for a few weeks following a stay in a hospital admission/ assessment ward. I knew that George had been a head teacher in his working life. I knocked on his bedroom door which he seemed to open with some trepidation. I introduced myself and, in opening, said ‘I understand that you were a head teacher; I am doing a course at university at the moment and wondered if we could chat.’ This initial introduction culminated in a 90-minute conversation with him perched on the edge of his bed and me in his bedside chair (at his insistence!) whilst we talked about his work, my course, our shared love of reading and our favourite authors; but in between, he told me of his despair around his diagnosis and his feelings of loss, enabling us to talk together about the impact that his dementia had had upon him. As a result of this conversation, I was able to work with the nurses to develop a new care plan that highlighted George’s concerns and how we might help to support and reassure him. However, from that one conversation I was also able to gain some little ‘nuggets’ of information that helped to lift his spirits and share laughter as we exchanged stories about the Two Ronnies and Morecambe and Wise, and our favourite sketches!

Reducing distress There are many reasons why a resident might become distressed in the care home environment and this requires care home staff to be ‘pro-active

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practitioners’, for the most part trying to pre-empt and prevent distress occurring as well as managing it effectively when already present. The impact of the diagnosis of dementia itself may cause fear or anxiety, as with George, requiring us to allow the resident to talk through their fears and offer support, reassurance or validation of their feelings and concerns (Feil 2015). Sometimes, residents may become frightened; they may not recognise their surroundings, where to find their own room or who the strangers (other residents) are around them. Sometimes residents might simply need a hug.

Environment Starting with the environment, we need to ensure, wherever possible, that the resident is able to independently find places of interest to them by using good signage with pictures and words, highlighting key areas through the use of colours or themes, and using contrast where applicable to aid perceptual difficulties or vision. Trying to strike the right balance between keeping a care home ‘homely’ and providing cues, stimulation or relaxation can be incredibly difficult! Our main priority is to help the residents to establish where they are at any given time and help them, wherever possible, to orientate themselves to the place that they need to get to, for example, the toilet, their bedroom or the dining room. A really helpful tool to evaluate your environment is the King’s Fund Environmental Tool (King’s Fund 2014) (see ‘Further reading and resources’ section).

Pain and discomfort Unrecognised pain can be a real cause of distress and this is always my first question if I am asked to assess someone who is repeatedly presenting in a distressed state but unable to communicate verbally. A behavioural pain assessment scale such as the Pain AD (Pain for Advanced Dementia) scale is valid, reliable with clinical utility (Aasmul et al. 2016) and can be carried out in less than a minute to establish if a resident is experiencing pain. Of course the tool will only help to highlight that there may be pain present, not actually where it might be, but it gives us the opportunity to communicate with the resident’s GP about a possible prescription of pain relief (see Chapter 19).

Dementia in a Care Home Setting

Personal care Personal care can also be a huge source of distress for residents as they may feel embarrassed or undignified, have no understanding of their need for help with this or what you are trying to do, or simply be frustrated at their loss of independence. It is really important for us to include the resident in discussions about their personal care needs. Wherever possible, care staff must facilitate and enable residents to undertake their own personal care for themselves to reduce their feelings of frustration or embarrassment. Ensure that the resident’s dignity is maintained, for example using towels to cover body parts (or sheets if they are in bed), offering frequent explanations of what is happening and what you intend to do, and ‘checking in’ that the resident is happy with the care you are providing. Experience has shown me that gently playing the resident’s favourite music in the background can help whilst personal care is being carried out. Sometimes we may be in danger of providing too many staff to carry out personal care. A situation may call for two care staff to safely mobilise or transfer the resident; however, do the same two staff need to remain to carry out the personal care? Do we need two staff in the room or is it more fitting that one person provides the intimate care until the resident requires another manoeuvre and the second care staff return later?

Medications The use of medication to reduce distress should always be a last resort as certain medications may cause further confusion and/or anxiety (see Chapter 3). A significant outcome of our programme to enhance dementia care is that there has been a significant reduction in the use of anti-psychotic and hypnotic medications. Sometimes the reason for distress has been found, such as pain causing the person to lash out during personal care, and medication is provided to enable pain relief. There may be other instances where anti-psychotic medications were prescribed during periods of high distress, where a non-pharmacological intervention could have been employed, such as the use of empathy dolls (Mitchell 2016), or Namaste Care (Simard 2013) (see also Chapter 15).

Meaningful activity During one of our training sessions we ask the staff to stare at the PowerPoint slide for a few minutes without doing anything else. It is only

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a few minutes and yet most of the staff believe that they have been sitting there for a considerably longer time. Following this brief exercise, staff are asked to reflect on how it made them feel and to compare this with how it may feel for a resident who is sitting in a chair with little to occupy them for perhaps an hour or more. Phair (2017) points out that meaningful activity does not involve simply filling the day with tasks. Whilst she is correct in her statement, it is also worth highlighting that meaningful activity is also not always about holding big group activities all of the time. We are each unique individuals with varying wishes and ideas about how our lives should be fulfilled; does that change if a person develops a diagnosis of dementia? Our abilities may change as we get older due to either some physical or cognitive limitations. Similarly, our wishes and preferences may change over time, but the key is – what does the individual want to do, or not!? Life Story Work can have a huge influence in helping us to consider what might be a meaningful activity for a resident. A person who has led quite a solitary life, happy in their own company for the most part, may gain more enjoyment from remaining in their room listening to their favourite music than participating in a group activity. For others, who have remained socially active for the majority of their lives, group activities and trips may be just the thing to maintain or improve their well-being. However, it is really important for residents to continue to be part of ‘daily life’ wherever possible, if this is what they choose to do. We are in danger of taking away former roles and de-skilling our residents when they come into a care home. Prior to their admission the resident may have tidied up their own home on a daily basis, washed the dishes, made their bed or prepared meals. Often staff can unwittingly ‘take over’ either because of a perceived risk, such as ‘health and safety’ when washing pots, or simply because care staff feel the resident is there to be ‘cared for’. Bryden (2005), who is living with dementia, reaffirms this for us by stating that the most important factor for improving care is an environment that can both enhance the person’s sense of safety, value and well-being, and facilitate the person’s actions, celebrate the person’s abilities and provide sensory pleasures.

CASE STUDY: GLORIA I remember being asked to try to establish why a resident, Gloria, kept ‘throwing herself’ onto the floor. The care staff bemoaned that they would constantly have to pick Gloria up from the floor and place her back into her chair, only for them to return later to find Gloria

Dementia in a Care Home Setting

on the floor again, despite their efforts. They saw this as deliberate behaviour that was to be stopped rather than understood. I spent a couple of hours observing Gloria. She would place herself on the floor (rather than throwing herself as the staff perceived) and then proceed to pick at the ‘bits’ on the carpet. The ‘bits’ were part of the pattern of the carpet but Gloria had perceived them to be crumbs or something similar. When I fed this back to the staff, they were quite astonished, and I asked them for suggestions as to how Gloria’s actions might be viewed in a different light. The care staff became quite imaginative and suggested the idea of getting her a duster to keep by her side in her chair so that she could ‘polish’ the arms of her chair and her side table, and so encourage her to sit in her chair a bit longer. They later also gave her a small bowl of warm soapy water and some bits and pieces to wash up and a tea towel to dry them.

Activity can mean very different things to different people. Engagement might mean a preference for some to watch the activity of others, and for some to participate themselves.

Involving relatives and friends For most, relatives and friends have played a huge part in caring for the person with dementia we are now looking after and perhaps over a long period of time. To suddenly cease this caring role can often be as traumatic as the person with dementia actually moving away from them. However, for some it is a welcome relief as they have struggled to maintain their relationship because of the complexities that a diagnosis of dementia can bring. One of the key parts of our admission process is to try to establish the level of involvement that the relative or friend would like – if they wish to continue with a caring role in part and how we can facilitate that. A few weeks ago I spent a couple of days interviewing a number of relatives about their experiences of one of our care homes to establish why they felt it was outstanding from a relative’s viewpoint. My first question, as part of the interview, is to establish why they had chosen to place their relative in the care home or the person themselves chose to do so. Some of their stories can be harrowing. The overriding reason was because the relative was at breaking point, exhausted by caring, and in fear of their own safety or the safety of those they cared for. A daughter of one resident talked about how she had become estranged from her father because they conflicted about how her mother should be cared for. Her father was in

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denial and wouldn’t accept that his wife had a diagnosis of dementia, and would try to ‘correct her’, leading to distress and frustration. However, most of the relatives I spoke to wished to continue to be involved in the care of their loved one both in practical ways but also at the planning level. All the relatives talked about being ‘part of the family’ at the care home, with some spending many hours at a time with their relative, not because they felt that they had to but because it enabled them to carry on in the enjoyable and fulfilling aspects of their role for as long as they were able to. What came through the interviews in abundance was the appreciation of the level not only of support and care for the residents themselves but also of the support and care that was afforded them (Baker 2017).

Summary Providing care in a care home may never be the same as receiving care within your own home, however hard we try, but it can be a really good experience for most. My nan for example, who had lived on her own for a number of years following the death of my grandad, took on a new lease of life when she moved into a care home, forming new friendships and trying different things. Every day, I see and hear of the most incredible care for people living with dementia within our homes. As I mentioned in the introduction, care homes can give us a real opportunity to make a difference and deliver truly person-centred care, to embrace dementia care as a real specialism, and sometimes reach beyond boundaries to enhance the lives of those we care for.

STOP AND REFLECT Reflecting on this chapter and your own area of practice, what are the opportunities to enhance dementia care provision? How might you approach this? What are your own thoughts on Life Story Work? Think of the ten most important things to you that care staff should be aware of if you became a resident in a care home. What level of involvement do your residents and their relatives currently have in their own care in your care setting? Can further opportunities be created to involve residents and their relatives?

Dementia in a Care Home Setting

References Aasmul, I., Husebo, B.S. and Flo, E. (2016) Staff distress improves by treating pain in nursing home patients with dementia: results from a cluster-randomized controlled trial. Journal of Pain and Symptom Management. 52(6): 795–805. Baker, C. (2017) Enhancing wellbeing of residents with dementia in care homes. Nursing Times. 113(12): 31–34. Bryden, C. (2005) Dancing with Dementia. London: Jessica Kingsley Publishers. CQC (2017) The State of Health Care and Adult Social Care in England 2016/2017. London: Care Quality Commission. CQC (2018a) CQC – Services we regulate – Care Homes. www.cqc.org.uk/what-we-do/ services-we-regulate/care-homes (Accessed 23 Jan 2018). CQC (2018b) CQC Latest Checks on Care Homes. www.cqc.org.uk (Accessed 25 Jan 2018). Feil, N. (2015) V/F Validation: The Feil Method (Third Edition): How to Help Disoriented Old-Old. Cleveland, OH: Edward Feil Productions. Government Business (2017) Half of Care Homes in England Failing. https:// governmentbusiness.co.uk/news/29112017/half-care-homes-england-failing (Accessed 6 Dec 2017). Kennedy, J. (2016) John Kennedy’s Care Home Enquiry. York: Joseph Rowntree Foundation. www.jrf.org.uk/report/john-kennedys-care-home-inquiry (Accessed 30 Jan 2018). King’s Fund (2014) Is Your Care Home Dementia Friendly? EHE Environmental Assessment Tool. Second edition. London: King’s Fund. www.kingsfund.org.uk/sites/default/files/ field/field_pdf/is-your-care-home-dementia-friendly-ehe-tool-kingsfund-mar13.pdf (Accessed 25 Jan 2018). Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press. Mitchell, G. (2016) Doll Therapy in Dementia Care: Evidence and Practice. London: Jessica Kingsley Publishers. Phair, L. (2017) How do I make residents’ activities meaningful in my care home? Nursing Older People. 29(8): 19. Powers, G.A. (2014) Dementia Beyond Disease: Enhancing Well-Being. Baltimore: Health Professions Press. Simard, J. (2013) The End of Life Namaste Care Programme: Programme for People with Dementia. Second edition. Maryland: Health Professional Press. Swaffer, K. (2016) What the Hell Happened to My Brain? Living Beyond Dementia. London: Jessica Kingsley Publishers. Thompson, R. (2011) Using life story work to enhance care. Nursing Older People. 23(8): 16–21.

Further reading and resources Baker, C. (2015) Developing Excellent Care for People Living with Dementia in Care Homes. (University of Bradford Dementia Good Practice Guides.) London: Jessica Kingsley Publishers. Baker, C. and Corrigan Charlesworth, J. (2017) Visiting the Memory Café and Other Dementia Care Activities: Evidence-Based Interventions for Care Homes. London: Jessica Kingsley Publishers. King’s Fund (2014) The King’s Fund environmental assessment tools. www.worcester. ac.uk/about/academic-schools/school-of-allied-health-and-community/alliedhealth-research/association-for-dementia-studies/ads-consultancy/the-kings-fundenvironmental-assessment-tools/home (Accessed 8 March 2019).

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Chapter 25

Care of Families Affected by Dementia in a Hospice Setting Sharron Tolman

Learning objectives • To understand the potential for hospice care for families affected by dementia. • To consider palliative care across the various stages of dementia. • To have an understanding of the impact on family members of caring for someone with dementia at the end of life.

Introduction One in three people will die with or from dementia. Dementia is a life-limiting condition with an average life expectancy of 4.5 years after diagnosis (Xie, Brayne and Matthews 2008), as we have learnt in Chapter  20. Nevertheless, the number of people accessing specialist palliative care services remains low, with only 1 per cent of people with dementia dying in a hospice and fewer than 10 per cent dying in their own home (Sampson and Harrison Dening 2013). Dementia care is not exclusive to any specific health or social care sector; it is everybody’s business now and all services where people with dementia find themselves are required to share practice and learn from each other (Harrison Dening and Cooper 2016). Palliative care is defined as the active, total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount (World Health Organization 2011). It is a ‘whole person’ approach, with an emphasis also on the needs of those who matter to the person with dementia: their families, carers and friends. Palliative care isn’t simply about end of life, and hospices can be an ideal service to offer care for 324

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people with dementia in the early and moderate as well as advanced stages of the disease. A sense of belonging, significance, security, community, purpose and achievement, especially at the end of life, is important for all of us (Nolan et al. 2006) irrespective of the illness we experience. Although dementia has been identified as the leading cause of death in England (ONS 2016), exact numbers of deaths where dementia is a primary or secondary cause may still remain uncertain due to underreporting on death certificates (Martyn and Pippard 1998; Perera et al. 2016). Despite this there is still widespread evidence that people with dementia have inequitable access to good palliative, end-of-life (Davies and Higginson 2004; Sampson and Harrison Dening 2013) and hospice care (Harrison Dening, Crowther and Tolman 2017).

Hospice-enabled dementia care Dementia care is an increasingly important strategic consideration for hospices in the UK. In 2014 Hospice UK embarked upon a yearlong project to consider the role of hospices in supporting people with dementia to live and die as well as possible. A large element of this work focused on supporting people with dementia to die at home in familiar surroundings with familiar people around them. The project was steered by nationally recognised experts in the fields of dementia, palliative and end-of-life care, including membership of people living with dementia and their family carers. The project explored the current position of dementia care provision in UK hospices and their thinking and planning in relation to extending their reach to include those living and dying with dementia and their carers as part of their everyday practice and service delivery. The findings revealed a small number of UK hospices that were already embracing dementia in creative ways. However, it revealed a higher number of UK hospices who felt that dementia was not within their remit, who did not consider dementia to be a life-limiting illness, or who had no plans or intentions to include dementia in future service development or strategic planning. During the project, the question of how hospices can be best supported to include dementia in their everyday practice began to emerge and, more specifically, how Hospice UK could support this. In an attempt to answer this question, guidance for hospices was developed (Hospice UK 2015) to take hospices from the very first steps, of auditing and reviewing their current position, to implementing creative dementia-friendly services. In part, the guidance set out how to do this within existing resources but also how to explore new funding sources and manage sustainability.

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This guidance is now a very familiar sight in UK hospices. A growing number of hospices have used this guidance to support their strategic planning and the development and implementation of dementia-specific services. As part of their dementia strategies a growing number of hospices are employing Admiral Nurses to offer families affected by dementia a bespoke hospice service.

The meeting of specialties – dementia and hospice St Cuthbert’s Hospice1 was the first hospice in the UK to appoint an Admiral Nurse (see Box 25.1), in 2014. The hospice strategy and vision identified the need to develop services to embrace people affected by dementia, and decided to implement dementia case management by recruiting an Admiral Nurse. Box 25.1: The Admiral Nurse approach (Rahman and Harrison Dening 2016) Admiral Nurses focus on the needs of the whole family affected by dementia, including psychological support to help the person with dementia and family carers to understand and deal with their thoughts, feelings and behaviour, and to adapt to the changing situation. Admiral Nurses use a range of evidence-based interventions that help people live as well as possible with the condition and develop skills to improve communication and maintain their relationships. Admiral Nurses work with families throughout the illness but particularly at points of difficulty, including diagnosis, as the condition progresses, or when tough decisions need to be made, such as moving a family member into residential care. Anticipated problems might be: missed or delayed diagnosis, lack of information (which may increase risk of inappropriate management), crises, poor psychological adjustment to the diagnosis, and reduced coping capacity and ability to forward plan. Admiral Nurses help families cope with feelings of loss and bereavement as the condition progresses. Families affected by dementia require support throughout the illness and into bereavement. For family carers, the more social support that is

1 See www.stcuthbertshospice.com/215/2/St-Cuthberts-Hospice-Dementia-Support.

Dementia in a Hospice Setting

received during the years of caregiving, the easier it is to adjust and adapt following bereavement. Admiral Nurses provide case management to ensure all appropriate services and care are available to a family, including liaison with other professionals on behalf of the family.

There are widely held negative beliefs about palliative care (McIlfatrick et al. 2013) and perceptions that hospices only care for people at the very end of their lives or that they are places of death. However, the modern hospice movement offers many and varied therapeutic interventions and activities in a range of care settings and locations, not just within the confines of the hospice itself. The St Cuthbert’s Admiral Nurse provides care as outlined in other chapters in this book (namely, 15, 18, 19 and 20) but this chapter will specifically describe some of the innovative hospicebased interventions in dementia.

Supporting family carers Carers are a vital component in supporting family members as they reach the end of life (Rowland et al. 2017), but especially so in supporting a person with dementia (Harrison Dening et al. 2017). Cantwell et al. (2000) found that carers of patients with cancer are important in enabling them to die at home. However, in dementia populations over several decades there has been a large shift away from deaths at home to deaths in hospitals and care facilities. For example, in the UK, between 1974 and 2003 the proportion of home deaths for this group fell from 31 per cent to 18 per cent overall (Gomes and Higginson 2008). Concurrently, the proportion of older people with dementia dying in long-term care facilities such as residential and nursing homes has increased across Europe and the US, where almost 40 per cent of deaths occur in long-term care facilities. In the UK there has been a trend towards decreased deaths in hospitals and increasing numbers of deaths in care homes for people with dementia (Sleeman et al. 2014). This, in part, can be seen as a result of initiatives that directly support the needs of family carers. But there is still a way to go to enable more people with dementia to live and die in their own homes or preferred place of death. At St Cuthbert’s, people in the earlier stages of dementia, with their family carers, can engage with hospice activities that promote an understanding of dementia and adaptation to diagnosis, through positive communication and building their confidence to take the next steps and

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start to plan ahead. The hospice is well placed to deliver interventions throughout the stages of dementia, from early on after the diagnosis is made, through to providing evidence-based interventions, for example, cognitive stimulation therapy (CST) (Spector, Orrell and Woods 2010), physical activities (Dawson, Gerhart and Judge 2017) and creativity and art-based therapies (Humphrey et al. 2017; Windle et al. 2017) that can be utilised within the rehabilitative and enabling model of hospice care. This is an inclusive approach which enables people to access care early and engage in a ‘step in and step out’ model of care, so empowering families to seek help and support in anticipation of need. Such a model reduces the fear of hospices, so dispelling myths that they are only places of death, and enabling earlier access and opportunities for important conversations about their wishes for now and the future, whilst the person with dementia still has capacity to do so.

CASE STUDY: CLARA Clara is a 79-year-old lady diagnosed with Alzheimer’s disease. She was feeling increasingly frustrated and isolated since her diagnosis of dementia as she now lacked confidence and found mixing with other people difficult. Her husband (and main carer), Ted, was keen for her to remain stimulated and active for as long as possible, which is important to many family carers. They were referred to the hospice by Clara’s GP as he knew they provided one-to-one cognitive stimulation therapy (CST) for people with dementia. When the hospice worker visited Clara she noted that Ted seemed very low and tearful when responding to questions during her assessment of the needs of the couple. St Cuthbert’s is quite innovative in that it is one of the very few hospices to provide a course of CST, in this case tailored to meet Clara’s needs. CST is a brief treatment intervention for people with mild to moderate dementia, aiming to stimulate and engage, whilst providing an optimal learning environment and the social benefits that are traditionally provided within memory assessment services. Whilst it took a lot of encouragement to get Clara to attend the CST group, after only the first two sessions Clara’s confidence started to increase as she saw she was able to continue to undertake tasks and activities as she did previously and, indeed, regained some she had lost.

Dementia in a Hospice Setting

However, what transpired from the hospice’s contact with Clara was that her husband, Ted, was experiencing severe feelings of loss and grief due to the changes in his wife over time and also the changes in their relationship, and that he had difficulty adjusting, to the point where he was becoming clinically depressed (Chan et al. 2013) and felt that he could not effectively continue to care for his wife. Ted was referred to the Admiral Nurse for assessment and support of his own needs as a carer. Whilst Clara received her CST sessions, Ted had regular sessions with the Admiral Nurse who counselled him in his own understanding and adjustment to Clara’s diagnosis and his sense of loss for the person and relationship they had. Ted also invited their daughter to a few of these sessions as the sense of loss, though varying across Clara’s family members, was none the less strongly felt (Ott, Sanders and Kelber 2007; Wilson et al. 2017). The issues explored in these meetings are common to many family carers. Learning new ways of engaging with each other, maintaining hope, reaching positive solutions to daily challenges, maximising independence and safety within the home, and having an opportunity for their perspective to be heard and understood (for us to understand how dementia impacts on them, as a family carer) were all aspects of the bespoke psychosocial approach the Admiral Nurse took with Ted (Newbronner et al. 2013). At the end of the CST sessions Clara’s confidence to again venture out of the home and meet others grew. The Admiral Nurse maximised on this positive outcome of the CST intervention and her counselling of Ted, and introduced Clara and Ted to a group aimed at supporting families to begin thinking about advance care planning (see Chapter 14). At St Cuthbert’s Hospice the Everything in Place project (see Box 25.2) is designed to support families to plan ahead over a series of six weekly sessions.

Advance care planning can be a difficult concept for people to understand, – to know what this actually means and involves in practice, as well as where to begin. The Everything in Place project aims to break the taboo that surrounds death and dying, and enable people to talk about the broader issues, such as the physical, emotional, spiritual and practical aspects of palliative and end-of-life care, advance care planning, Lasting Power of Attorney and wills.

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Box 25.2: Everything in Place – St Cuthbert’s Hospice

Session 1: Where there’s a will there’s a way – discusses the importance of leaving a will. Session 2: Lasting Power of Attorney – making decisions on your behalf. Session 3: The care conundrum – understanding the care system. Session 4: Funeral planning – lifting the lid on funerals. Session 5: Your heart and soul – conversations on organ donation. Session 6: Difficult conversations.

Outcomes of the initiative are to enable families to think about the future, and to understand that there are some things they can plan or prepare for, despite the unpredictability of dementia, so ‘planning for the worst but hoping for the best’. Being amongst others in a similar position also helps to reduce the stigma of dementia and encourage all to see death as part of life. Clara and Ted attended all the sessions and, as a consequence, each developed their own advance care plan to include Lasting Power of Attorney, both Personal Welfare and Property and Finance. However, more importantly perhaps, from this moment on they became strong and confident members of a dementia peer support group.

STOP AND REFLECT In what other ways do you think a hospice could provide support to families affected by dementia? Why is it important to consider a palliative approach to dementia care? What might be the psychological impact of caring for a person with dementia at the end of life? Thinking about the information in Chapter 16 on supporting family carers, how might you adapt approaches to end-of-life care?

Dementia in a Hospice Setting

Admiral Nurses – hospice in the community for people affected by dementia Palliative care is an important consideration in any life-limiting condition, but especially in dementia, as the person may live for a number of years after the initial diagnosis (van der Steen et al. 2014). However, identifying when someone with dementia is in the last year of life can help the person with dementia and their family to prepare for the shifting goals of care and to avoid futile or over-burdensome treatments and unnecessary admissions to hospital. This can give families an increased understanding of what is happening and a greater sense of control. Family carers may need help to understand what changes to health they might expect, such as a reduction in mobility, changes to eating and drinking, withdrawal behaviours, changes to their skin, incontinence, and recurrent infections that are not responding to treatment; these may be an indication that the person with dementia is in the last six months to a year of life. Pressure on health and social care services, and limited support services for families affected by dementia, leave family carers providing care at home that potentially requires a high level of knowledge and skill, such as skin and pressure area care, moving and handling, managing food and fluid intake where there are swallowing difficulties, and incontinence and bowel management. They are often inexperienced and untrained to do this, which results in high levels of anxiety, exhaustion and perceived carer burden.

CASE STUDY: BILL (PART 1) Bill is an 85-year-old man with advanced Alzheimer’s disease. His wife, Barbara, cares for him at home. They are a very private couple and the thought of strangers coming into their home to provide care is difficult for Barbara to accept as it makes her feel she had failed Bill. Bill is mostly cared for in bed as Barbara struggles physically with moving him. Practical aids and equipment can help but families also need workable solutions for their home circumstance and space. As Bill eats less, Barbara finds this the most distressing of his care aspects, sometimes spending hours encouraging him to eat. Being unable to sustain life, to nurture and feed the people we love, is highly emotive for family carers. Barbara feels guilty, and worries she is ‘starving’ Bill. She needed help to understand that Bill’s reduced intake was indicative of the dementia progressing further and not because of something she was doing wrong.

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Bill lost his ability to verbally communicate with her so she began to feel more distressed, yet finding a way to express love for Bill remained important to her. We introduced a programme of Namaste Care for them. As Bill had lost the ability to communicate anything about himself we built a picture of his personal history through a life story session with Barbara and their son to capture the essence of Bill. Sensory-based interventions were developed from this. Bill’s love of nature and animals helped the Namaste volunteers (see Box 25.3) understand what Bill had previously enjoyed, from which they could deliver a personalised, sensory-based programme of care (see Chapter 15). The Namaste volunteer read to Bill and massaged his hands and feet with aromatherapy-based creams whilst demonstrating to Barbara and their son some of the ways they could remain connected with Bill.

Families affected by dementia value support in enabling them to remain connected to the person they care for, especially in the advanced stages of dementia when verbal communication may be limited. The notion of hope and that families can still do something practical to improve quality of life of the person with dementia is very important to them. Volunteers carrying out the Namaste Care intervention (see Box 25.3) help to build a more compassionate and caring community with less stigma and more understanding of what dementia means for a family. This in turn helps build resilience in family carers and encourages a relationship-centred approach to care. Box 25.3: The Namaste Volunteer programme Namaste Care (Simard 2013) is a person-centred approach which is composed of several core elements including: life story, comfort and pain management, creating a calm atmosphere, sensory stimulation, food treats, hydration and loving touch (see Chapter 15). In January 2017, St Cuthbert’s Hospice launched their community Namaste Care project,2 based on a model pioneered by St Joseph’s Hospice and Hope for Home.3 Volunteers are trained to provide Namaste Care to people with advanced dementia living with a family carer in their own home. Hand/foot massage and individualised sensory-based interactions are provided. Family carers enjoy regular visits from the volunteers, often learning new ways of 2 See www.stcuthbertshospice.com/2303/3/Namaste-Care. 3 See www.stjh.org.uk/our-services/community-services/namaste.

Dementia in a Hospice Setting

remaining connected with the person they are caring for, particularly when verbal communication with the person with dementia is compromised. Family carers become more able to connect with the emotional responses in the person they care for. The volunteers report significant satisfaction, developing relationships with the people they visit, and some positive friendships have continued beyond the project. The Namaste Care project is currently being evaluated by Dr Sonia Dalkin of Northumbria University. An unintended outcome of the project is volunteers noticing and reporting changes which the team can respond to, taking hospice care out into the community. This reduces feelings of isolation and uncertainty of how to cope with changes, and supports the team to help prepare families about what to expect as dementia progresses.

CASE STUDY: BILL (PART 2) Barbara did not want Bill to go to hospital but feared how she would cope alone with him dying at home. It was important to have discussions with her and consider emergency healthcare planning at this point so that key professionals involved knew Bill and Barbara’s wishes. The Admiral Nurse explained the changes to expect when someone is dying and offered the option of hospice in-patient care at this time; Barbara was pleased to have this option as a ‘back-up’ but with the support of the Admiral Nurse, Marie Curie Nurses at night and Macmillan carers in the last few days, Bill died peacefully at home. Barbara felt well prepared and was pleased Bill had the dignified death she thought he would have wanted in his own home.

STOP AND REFLECT What may help you identify when a person with dementia may be in the last year or so of life and why is this important to families? How might you guide a family carer to manage the changes as dementia progresses? Consider what might be important to the person with dementia and their family as end of life approaches.

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Conclusion Hospices are ideally placed to support people with dementia and their families. They are well placed to support advance care planning at the point of diagnosis and then offer palliative support as appropriate to the individual as they near the end of life. Support with anticipatory grief and bereavement is integral to their care, with staff specifically trained in this area, and hospices have the expertise to support people living with a life-limiting condition, with a focus on reducing distress and maximising comfort. However, another strength is the wealth of experience they have in complementary care, such as creative writing, reiki, massage and mindfulness, which may also benefit the person with dementia and family carers.

References Cantwell, P., Turco, S., Brenneis, C., Hanson, J., Neumann, C.M. and Bruera, E. (2000) Predictors of home death in palliative care cancer patients. Journal of Palliative Care. 16(1): 23–28. Chan, D., Livingston, G., Jones, L. and Sampson, E.L. (2013) Grief reactions in dementia carers: a systematic review. International Journal of Geriatric Psychiatry. 28(1): 1–17. Davies, E. and Higginson, I.J. (2004) Better Palliative Care for Older People: Report. Geneva: World Health Organization Europe. Dawson, N., Gerhart, H. and Judge, K.S. (2017) Findings from a strength-based moderateintensity exercise interventions for individuals with dementia (innovative practice). Dementia. Jan 1. doi: 10.1177/1471301217730951. (Epub ahead of print.) Gomes, B. and Higginson, I.J. (2008) Where people die (1974–2030): past trends, future projections and implications for care. Palliative Medicine. 22: 33–41. Gomes, B., Higginson, I.J., Calazani, N., Cohen, J., Deliens, L., Daveson, B.A. et al. (2012) Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Annals of Oncology. 23(8): 2006–2015. Harrison Dening, K. and Cooper, M. (2016) Dementia special interest group: shared learning across dementia, palliative and end-of-life care domains. EoL Journal BMJ. 6: 1 e000018. Harrison Dening, K., Crowther, J. and Tolman, S. (2017) Admiral Nursing: combining specialist dementia and hospice care. Nursing and Palliative Care. 2(3). doi: 10.15761/ NPC.1000151. Hospice UK (2015) Hospice Enabled Dementia Care: The first steps, a guide to help hospices establish care for people with dementia and their families. London: Hospice UK. Humphrey, J., Montemuro, M., Coker, E., Kilgour-Walsh, L., Moros, K., Murray, C. et al. (2017) Artful Moments: a framework for successful engagement in an arts-based programme for persons in the middle to late stages of dementia. Dementia. Jan 1. doi: 10.1177/1471301217744025. (Epub ahead of print.) Jones, S., Howard, L. and Thornicroft, G. (2008) Diagnostic overshadowing: worse physical health care for people with mental illness. Acta Psychiatrica Scandinavica. 118(3): 169– 171. Lamahewa, K., Mathew, R., Iliffe, S., Wilcock, J., Manthorpe, J., Sampson, E.L. et al. (2018) A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health Expectations 21(1): 118–127.

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McIlfatrick, S., Hasson, F., McLaughlin, D., Johnston, G., Roulston, A., Rutherford, L. et al. (2013) Public awareness and attitudes toward palliative care in Northern Ireland. BMC Palliative Care. 12(1): 34. doi: 10.1186/1472-684X-12-34. Martyn, C.N. and Pippard, E.C. (1998) Usefulness of mortality data in determining the geography and time trends of dementia. Journal of Epidemiology and Community Health. 42: 134–137. Newbronner, L., Chamberlain, R., Borthwick, R., Baxter, M. and Glendinning, C. (2013) A Road Less Rocky: Supporting Carers of People with Dementia. London: Carers Trust. Nolan, M.R., Brown, J., Davies, S., Nolan, J. and Keady, J. (2006) The Senses Framework: improving care for older people through a relationship-centred approach. Getting Research into Practice (GRiP) Report No 2. Project Report. University of Sheffield. ONS (2016) Death registered in England and Wales (Series DR): 2015. www.ons/gov. uk/peoplepopulationandcommunity/birthsdeathsmarriages/deaths/bulletins/ deathregisteredinengland (Accessed 31 Jan 2018). Ott, C.H., Sanders, S. and Kelber, S.T. (2007) Grief and personal growth experience of spouses and adult-child caregivers of individuals with Alzheimer’s disease and related dementias. Gerontologist. 47(6): 798–809. Perera, G., Stewart, R., Higginson, I.J. and Sleeman, K.E. (2016) Reporting of clinically diagnosed dementia on death certificates: retrospective cohort study. Age and Ageing. 45(5): 668–673. Rahman, S. and Harrison Dening, K. (2016) The need for specialist nurses in dementia care. Nursing Times. 112(16): 14–17. Rowland, C., Hanratty, B., Pilling, M., van den Berg, B. and Grande, G. (2017) The contribution of family care-givers at end of life: a national post-bereavement census survey of cancer carers’ hours of care and expenditures. Palliative Medicine. 31(4): 346–355. Sampson, E.L. and Harrison Dening, K. (2013) Palliative care and end-of-life care. In T. Dening and A. Thomas (eds) Oxford Textbook of Old Age Psychiatry. Second edition. Oxford: Oxford University Press. Simard, J. (2013) The End-of-Life Namaste Care™ Program for People with Dementia. Second edition. Baltimore: Health Professions Press. Sleeman, K.E., Ho, Y.K., Verne, J., Gao, W., Higginson, I.J. et al. (2014) Reversal of English trend towards hospital death in dementia: a population-based study of place of death and associated individual and regional factors, 2001–2010. BMC Neurology. 14: 59. Spector, A., Orrell, M. and Woods, B. (2010) Cognitive Stimulation Therapy (CST): effects on different areas of cognitive function for people with dementia. International Journal of Geriatric Psychiatry. 25(12): 1253–1258. van der Steen, J.T., Radbruch, L., Hertogh, C.M., de Boer, M.E., Hughes, J.C., Larkin, P. et al. (2014) White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care (EAPC). Palliative Medicine. 28(3): 197–209. Wilson, S., Toye, C., Aoun, S., Slatyer, S., Moyle, W. and Beattie, E. (2017) Effectiveness of psychosocial interventions in reducing grief experienced by family carers of people with dementia: a systematic review. JBI Database of Systematic Reviews and Implementation Reports. 15(3): 809–839. Windle, G., Gregory, S., Howson-Griffiths, T., Newman, A., O’Brien, D., and Goulding, A. (2017) Exploring the theoretical foundations of visual art programmes for people living with dementia. Dementia. Jan 1. doi: 10.1177/1471301217726613. (Epub ahead of print.) World Health Organization (2011) WHO Definition of Palliative Care. Geneva: WHO. www. who.int/cancer/palliative/definition/en (Accessed 31 Jan 2018).

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Xie, J., Brayne, C. and Matthews, F.E. (2008) Survival times in people with dementia: analysis from population-based cohort study with 14 year follow-up. British Medical Journal. 336(7638): 258–262.

Further reading and resources Hospice UK (2015) Hospice Enabled Dementia Care. London: Hospice UK. www.hospiceuk. org/docs/default-source/What-We-Offer/Care-Support-Programmes/dementianetwork/hospice-enabled-dementia-care---the-first-steps.pdf?sfvrsn=0 (Accessed 8 March 2019) NCPC (2015) What to expect when someone close to you is dying. London: NCPC. www. ncpc.org.uk/sites/default/files/What_to_Expect_FINAL_WEB.pdf (Accessed 8 March 2019) Addington-Hall, J. and Higginson, I. (2011) Palliative Care for Non-cancer Patients. Oxford Scholarship Online: doi:10.1093/acprof:oso/9780192629609.001.0001 (Accessed 8 March 2019) Symard, J. (2007) The End-of-Life Namaste Care Program for People with Dementia. London: Health Professions Press.

The Contributors

Zena Aldridge Zena has worked in health and social care in a variety of roles for over 22 years, spending much of this time working with families affected by dementia. She qualified as a Registered Mental Health Nurse in 2003, before completing a Master’s degree in Mental Health at the University of East Anglia in 2013, and commences doctoral studies this year. Zena joined Dementia UK in 2016 and is now a Senior Consultant Admiral Nurse.

Caroline Baker Caroline has been a Mental Health Nurse for over 30 years and is the director of Dementia Care at Barchester Healthcare. She has written several publications and won the ‘Lifetime Achievement in Dementia Care’ award in 2014 (UKDC).

Aileen Beatty Aileen is a mental health nurse with a special interest in dementia care. She has an MSc in Dementia Studies from the University of Bradford and has worked in a variety of roles developing and managing services for people living with dementia in the NHS and voluntary sector. She currently works as an inspector with the Care Quality Commission and is based in Northumberland.

Frances Bunn Frances is a health services researcher with a particular interest in the management of co-morbid health conditions, such as diabetes, in people with dementia and the support for people with dementia and their family carers.

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Evidence-Based Practice in Dementia for Nurses and Nursing Students

Charlotte Clarke Charlotte is Head of the School of Health in Social Science, University of Edinburgh. She qualified as a nurse in 1986 from what was then called Glasgow College of Technology and worked clinically for a number of years before moving into roles that were more focused on education and research. Charlotte also works with the National Institute for Health Research as Chair of the NE Research for Patient Benefit Committee.

Tom Dening Tom is Professor of Dementia Research at the Institute of Mental Health, University of Nottingham, and Honorary Consultant in Old Age Psychiatry, Nottinghamshire Healthcare NHS Trust. His interests include the epidemiology of mental disorders in older people; treatment of dementia and depression in older people; psychiatric services, dementia and technology; care homes; and other clinical topics. He is one of the editors of the Oxford Textbook of Old Age Psychiatry, the leading international work in this field.

Katie Featherstone Katie is a Reader in Sociology and Medicine, School of Healthcare Sciences, Cardiff University. Her research programme (www.storiesofdementia. com) uses sociology to improve the quality and humanity of care that people living with dementia receive in hospital.

Claire Goodman Claire is a district nurse by background and a Fellow of the Queen’s Nursing Institute. She is a Deputy Director of the NIHR CLAHRC (Collaboration for Leadership in Applied Health Research and Care) East of England. Her research focuses on the health and social care needs of the oldest old, including those affected by dementia and living in long term care.

Karen Harrison Dening Karen is Head of Research and Publications for Dementia UK, the charity that is the ‘home of Admiral Nursing’. She completed doctoral studies in advance care planning in dementia at University College London and her research interests include advance care planning, palliative and end-of-life care and case management in dementia.

The Contributors

Hilda Hayo Hilda has been the Chief Admiral Nurse/CEO for Dementia UK since 2013. She is a dual registered nurse with over 38 years’ experience who has held senior positions in clinical services, hospital management and higher education.

Cheryl Holman Cheryl is a nurse academic and the Associate Dean of School for Academic Quality for the School of Health and Social Work at the University of Hertfordshire. She has taught subjects related to psychosocial care for older people for much of her career. Her PhD studies explored the practices of staff delivering continuing care for dependent older people and their experiences of loss and bereavement.

Julian C. Hughes Julian is Research Institute for the Care of Older People (RICE) Professor of Old Age Psychiatry at the University of Bristol. His clinical work is in the mental-health old age liaison team in the Royal United Hospital in Bath and in the memory clinic at RICE. He studied Philosophy both before and after studying Medicine. He is currently Deputy Chair of the Nuffield Council on Bioethics.

Steve Iliffe Steve is a retired academic general practitioner who worked in a large socially diverse inner-city group practice in North West London for 30 years. His research interests are in health promotion in later life and in mental health, particularly dementia syndrome. He was Chief Investigator of the EVIDEM programme, a five-year multicentre package of projects funded by the National Health Service’s research foundation, on community-based interventions for dementia.

Chris Knifton Chris is Dementia Lead for the Faculty of Health and Life Sciences and Senior Lecturer in dementia at De Montfort University, Leicester. He is dual qualified as both a learning disability nurse and social worker, and he has just completed his professional doctorate on the conceptualisation and genealogy of dementia in Western societies. His research interests include learning disability and dementia; the sociology of dementia;

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dementia and the law; the history of dementia; dementia education; and rementia.

Jan Leeks Jan’s 30-year career as a mental health nurse has been spent working with people living with dementia. She has written a substantial amount of training materials for the care sector aimed at promoting a personcentred culture. Latterly she worked as a Consultant Nurse in dementia care, though she is presently employed as a Senior Lecturer in Mental Health at the University of Hertfordshire.

Jill Manthorpe Jill is Professor of Social Work and Director of the Social Care Workforce Research Unit at King’s College London. She has long-standing research and policy interests in dementia care services and family support.

Stephen Martineau Stephen is Research Associate at the Social Care Workforce Research Unit, King’s College London. His interests include adult safeguarding and social care law, and he has worked on a number of articles with Jill Manthorpe on adult Serious Case Reviews/Safeguarding Adults Reviews.

Esme Moniz-Cook Esme has been a practising clinician since 1980, specialising in dementia care since 1987. She is Professor of Clinical Psychology, Ageing and Dementia Care at the University of Hull; and founder chair (1999), now co-chair, of INTERDEM, a pan-European interdisciplinary applied research network. Esme’s interdisciplinary clinical research programme covers psychosocial interventions in memory clinics, staff training and interventions for challenging behaviour in the community and care homes.

Angela Moore Angela has been a nurse for over 40 years and is now an Admiral Nurse working with Rutland County Council. She is an associate lecturer at Anglia Ruskin University and has a special interest in the diagnosis and

The Contributors

management of delirium in people living with dementia. Other interests include palliative care and advance care planning.

Jo Moriarty Jo joined King’s College in 2002 from the National Institute of Social Work. Her research activities span a number of areas. These include social work education and training, support for family carers, dementia, service user involvement, ethnicity and ageing.

Andy Northcott Andy is a lecturer at De Montfort University in Leicester. His research has used qualitative approaches to explore relationships of power in a range of clinical settings. His current programme of research uses ethnographic methods to explore ways to improve the experiences of care for people living with dementia in acute hospital settings.

Sarah Rhynas Sarah is a Teaching Fellow in the Nursing Studies Department, School of Health in Social Science at the University of Edinburgh. Her research and teaching focuses on the nursing care of older people and those living with dementia. Sarah’s current research interests include the maintenance of personal identity while in hospital and discharge from the acute hospital to care home.

Elizabeth Sampson Liz is a clinical Reader, Division of Psychiatry at UCL, her post is supported by the Marie Curie Palliative Care Research Department. She studied medicine at the University of Birmingham and gained her MD from the Institute of Neurology at UCL. She works as a consultant in Liaison Psychiatry (lead for older people). Her research focuses on improving care for frail older people, particularly those with dementia who may be reaching the end of their lives.

Malarvizhi Babu Sandilyan Malarvizhi is a consultant old age psychiatrist at Berkshire Healthcare NHS Foundation Trust. She is experienced in working with people with

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dementia and has delivered teaching on postgraduate dementia modules aimed at nursing and allied healthcare professionals. She has co-edited a textbook (MRCPsych: Passing the CASC Exam) and written chapters in MRCPsych exam books for trainees.

Helen Scott Helen is a Practice Development Clinical Nurse Specialist in the Care Home Project Team at St Christopher’s Hospice, London, supporting care homes to implement end-of-life care programmes. With a clinical background in specialist palliative care nursing and a special interest in dementia care and training, Helen is co-founder of a theatre-in-education group which provides communication skills training for people working in palliative, end-of-life and dementia care.

Sharron Tolman Sharron began her nursing career over 30 years ago. She has 25 years’ experience of working with people with dementia and their families. After completing an MSc in Dementia Studies (Stirling University) in 2014, she became the first Admiral Nurse to be appointed by a hospice in the UK and was responsible for setting up St Cuthbert’s Hospice dementia service. She joined Dementia UK in 2018 as a Consultant Admiral Nurse.

Jane Youell Jane is a freelance Chartered Psychologist, dementia specialist and Churchill Fellow. Her interests include relational wellbeing, capacity and consent, aged care and sexual health, and diverse populations living with dementia. She is a passionate advocate for person-centred, holistic care.

Subject Index

‘10-60-06’ programme 314-5 ABC chart 111 abuse see safeguarding acetaminophen 258 acetylcholinesterase inhibitors (AChEIs) 43-4 acute pain 250 acute setting see hospital setting (acute) Addenbrooke’s Cognitive Examination – Revised (ACE-R) 29 Admiral Nursing model 77, 326-7, 329 advance care planning balancing different needs 190-1 barriers to 182-3 communication about 186-8 enabling 184 overview 181-2 setting care goals 184 timing of 185-6 see also decision making (supporting) AFIRM approach 188-9 age (risk factor) 16-7 aggression 48-50 agitation 21, 48-50 agnosia 18 alcohol-related dementia 17 amitriptyline 258 amyloid scan 31 analysis, functional 110-3 anterograde amnesia 18 antidepressants 4, 258 antipsychotic drugs 45-6 anxiety symptoms 20 apathy 20-1 aphasia 18 appetite changes 47-8 apraxia 18 assistive technology 285

attorneys 175 autonomy 184-5 befriending 283-4 behavioural and psychological symptoms of dementia (BPSD) 19, 295-6 blood tests 29-30 BME-LGBTI population 162 Bristol ADL Scale (BADLS) 29 Brooker, Dawn 88-9 Bryden, Christine 87-8 Care Act (2014) 148-51 care home setting ‘10-60-06’ programme 314-5 environment 318 fundamental care issues 315-6 involving family and friends 321-2 King’s Fund Environmental Tool 318 managing challenging behaviour in 114-5 meaningful activity in 319-21 moving to (decision) 178-9 negative perceptions of 313-4 nurses 294-7 overview 312-3 personal care 319 carers definition of 214 see also family/carer support casuistry 124-5 causes of dementia Alzheimer’s disease 13 corticobasal degeneration 15 Creutzfeldt–Jakob disease 15 dementia with Lewy bodies 14 frontotemporal dementia 14-5 HIV 16 Huntington’s disease 15

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causes of dementia cont. hydrocephalus 16 mixed dementias 15 multiple sclerosis 15-6 vascular dementia 14 challenging behaviour in care homes 114-5 functional analysis of 110-3 management plan 108-9 overview 105-7 chronic pain 250 cognitive stimulation therapy (CST) 328 ‘comfort feeding’ 272 communication AFIRM approach 188-9 dilemmas of 99-103 in palliative/end-of-life care 273 using enriched model 94-103 see also language community nurses 293-4 comorbidity see complex health needs complex health needs access to care 225-6 continuity of care 226-7 diabetes 17, 228-9 family/carer support 230-1 frailty 224, 269 hospital care 231-3 managing medication 229-30 overview 52-3, 223-4, 267-9 self-management of care 227 confabulations 20 Confusion Assessment Method diagnostic algorithm 241-2 consequentialism 122-3 continuity of care 226-7 corticobasal degeneration 15 costs of dementia 13 covert medication 128-9, 257 Creutzfeldt–Jakob disease 15 CT scan 30 DAT scan 31 day services 282 death dying phase 265-7, 270-1 place of 327-8 decision making (supporting) attorneys 175 deputies 175 legislation 173-6

Making Decisions and Managing Difficult Situations factsheet 171, 172 Mental Capacity Act (2005) 174-6 moving to care home 178-9 overview 169-70 proxy decision making 176-7, 189-90 see also advance care planning delirium 3 Ds (delirium, dementia and depression) 239-41 causes of 238 definition 238 diagnosing 239, 241-3 differential diagnosis of 31 hyperactive delirium 245-6 hypoactive delirium 243-5 medication for 246 overview 237 dementia prognosis of 32-3 see also causes of dementia Dementia Care Mapping (DCM) 86-7 dementia with Lewy bodies diagnosis of 35 overview 14 deontology 123 depression 3 Ds (delirium, dementia and depression) 239-41 differential diagnosis of 31 history of 20 medical treatment 46-7 as risk factor 17 deputies 175 diabetes 17, 228-9 diagnosis Alzheimer’s disease 34-5 cognitive testing 28-9 criteria for 33-6 differential 31 functional neuroimaging 30-1 ICD-10 criteria 34 of Lewy body disease 35 NIA/Alzheimer Association group criteria 35 NINCDS-ADRDA criteria 34 sharing with patient/carers 31-2 structural neuroimaging 30 see also tests direct payments 280-1

Subject Index

discomfort 255-6 see also pain district nurses 293-4 donepezil 43-4 Down’s syndrome 72-9 driving 173-4 drugs see medical treatment dying phase 265-7, 270-1 dysexecutive syndrome 19 eating/swallowing difficulties 272 educational level 17 elder abuse, see also safeguarding emotionalism 47 end-of-life care see palliative/end-of-life care enriched model of dementia care 94-103 epilepsy 73 ethical issues covert medication 128-9, 257 distracting 100, 127 end of life care 131 forced care 127-8 ignoring 100 lying 100 moral theories 122-5 overview 121-2 sexuality 130 truth-telling 99, 126-7, 171-2 withholding food/fluids 272 Everything in Place project 329-30 family/carer support assessing carer needs 216 ‘carer’ definition 214 ‘family’ definition 214 impact of caring 214-6 overview 212-4 when complex health needs 230-1 feminist ethics 124 forced care 127-8 formulation 108-9, 111 frailty 224, 269 frontotemporal dementia, overview 14-5 functional analysis 110-3 Functional Assessment Staging Test (FAST) 266-7 gabapentin 258 galantamine 43-4 genetic factors 17

hallucinations (visual) 20, 45 health see complex health needs health promotion 233-4 hearing loss (risk factor) 17-8 heart conditions 17 history of care approaches 83-5 HIV 16 home care 32, 281-2 hospice setting 325-30 see also palliative/end-of-life care hospital setting (acute) ‘compartmentalisation’ of patients 302-3 complex health needs in 231-3 core population (dementia patients) 301-2 mealtimes 305-6 overview of situation 299-301 person-centred care in 139-41 refusal/resistance of care 307-8 timetables/routines in 304-7 housing 285 Huntington’s disease 15 hydrocephalus 16 hyperactive delirium 245-6 hypersexuality 160 hypertension 17 hypoactive delirium 243-5 identity, personal 139, 196 ‘informal care’ concept 279 intimacy 158-61 see also sexuality IQ score 29, 71 King’s Fund Environmental Tool 318 Kitwood, Tom 86-7 labelling 96-9, 292 language impact of 95 labelling 96-9, 292 terminology 37-8 see also communication Lasting Power of Attorney 175 learning disability assessment of dementia 73-9 baseline assessment 74, 75 definition 70-2 Down’s syndrome 72-9 epilepsy onset 73

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learning disability cont. prevalence of dementia 72 sharing diagnosis 78 signs/symptoms of dementia 73 specific dementia associations 72-3 support needs 78 legislation decision-making (supported) 173-6 safeguarding 148-51 Lewy bodies see dementia with Lewy bodies LGBTI population 161-2 life-history work 202, 316 malignant social psychology (MSP) 867, 96, 316 masturbation 164 medical treatment acetaminophen 258 acetylcholinesterase inhibitors (AChEIs) 43-4 amitriptyline 258 antidepressants 47, 258 antipsychotics 45-6 appetite changes 47-8 behavioural disturbances 48-50 cognitive disorder 43-4 covert medication 128-9, 257 delirium 246 depression 46-7 early dementia 42-3 gabapentin 258 immunotherapies 44 managing medication 229-30 memantine 43-4 mood-stabilising drugs 46 non-cognitive symptoms 45 nortriptyline 258 opioids 258 pain 256-9 paracetamol 258 pregabalin 258 principles of 41-2 psychosis 45 rivastigmine 43-4 side effects 44, 45, 46 sleep disorders 47 taking medication 52 see also complex health needs

memantine 43-4 memory assessment service 28 Mental Capacity Act (2005) 174-6 mild cognitive impairment (MCI) 36-7 mild dementia 32-3 Mini Mental State Examination (MMSE) 28 mixed dementias 15 moderate dementia 32-3 Montreal Cognitive Assessment (MoCA) 28 mood-stabilising drugs 46 moral issues see ethical issues MRI scan 30 multiple sclerosis 15-6 music therapy 204-5 Namaste Care 204, 273, 332-3 narrative ethics 124 neglect see safeguarding Neurocognitive Disorder (NCD) 37-8 neuropathic pain 251, 258-9 Neuropsychiatric Inventory 29 nociceptive pain 250 non-steroidal anti-inflammatory drugs (NSAIDs) 258 ‘normalisation’ of patient 291 nortriptyline 258 Office of the Public Guardian 151, 175 opioids 258 pain behavioural indicators of 254-5 definitions of 249-50 detecting 252-5 impact of 251-2 management of 256-9 multidisciplinary approach 256 neuropathic 251, 258-9 nociceptive 250 non-pharmacological treatment 256 non-steroidal anti-inflammatory drugs (NSAIDs) 258 pharmacological treatment 256-9 ‘picture of pain’ 259-60 prevalence 251 PRN medication 257 self-report of 253-4

Subject Index

three dimensions of 253 types of 250-1 under-reporting of 250 vs. discomfort 255-6 palliative/end-of-life care Admiral Nurse approach 77, 326-7, 329 communication 273 definition of 324 eating/swallowing difficulties 272 environmental factors 273-4 Everything in Place project 329-30 family carers 274, 327-8 Functional Assessment Staging Test (FAST) 266-7 hospice setting 325-30 infections 272-3 negative beliefs about 327 Palliative Care Phase (Phase) measure 270-1 place of death 327-8 recognising dying phase 265-7, 270-1 Supportive and Palliative Care Tool (SPICT) 268-9 symptoms in advanced dementia 271-3 paracetamol 258 person-centred care Al Powers 89 Christine Bryden 87-8 Dawn Brooker 88-9 Dementia Care Mapping (DCM) 86-7 history of care approaches 83-5 in practice 90-1 risk management 135-41 Tom Kitwood 86-7 unfamiliar places 139-41 personal budgets 280-1 personal care 319 personal detractor (PD) interactions 96, 99-100 personal enhancer (PE) interactions 96 personal identity 139, 196 personality traits 94 personhood 184-5 PET scan 30 planning see advance care planning positive person work (PPW) 86-7, 316 Power of Attorney 175 Powers, Al 89

practice nurses 290-3 pregabalin 258 prevalence of dementia 12-3 primary care settings care home nurses 294-7 community nurses 293-4 district nurses 293-4 practice nurses 290-3 principlism 123-4 privacy, lack of 164 prognosis of dementia 32-3 prosopagnosia 19 psychotic symptoms 20, 45 questions, responding to 99-103 refusal/resistance 307-8 religion see spirituality REM sleep behaviour disorder 21 reminiscence therapy 202 retrograde amnesia 18 risk factors for dementia 16-8 risk management ‘at risk’ label 134 overview 133-5 person-centred approach to 135-41 unfamiliar places 139-41 see also safeguarding rivastigmine 43-4 routines/timetables 304-7 safeguarding coercive behaviour 146 dementia-specific risks 146-7 elder abuse 145-6 legislation 148-51 Office of the Public Guardian 151, 175 overview 144-6 prevalence of abuse 146 prevention of abuse 152-3 Safeguarding Adults Boards 150 Safeguarding Adults Reviews 150-1 see also risk management St Cuthbert’s Hospice 326-30 self-management of care 227 sensory stimulation 204 severe dementia 32-3 sexuality attitude to 157 definitions of 157-8

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Evidence-Based Practice in Dementia for Nurses and Nursing Students

sexuality cont. diversity of 161 ethical issues around 130 hypersexuality 160 inappropriate sexual behaviour (ISB) 51, 160-1 intimacy 158-61 LGBTI population 161-2 masturbation 164 policies concerning 165 supporting relationships 162-5 sleep disorders medical treatment 47 overview 21 smoking 17 social care arranging services 279 befriending 283-4 day services 282 direct payments 280-1 home care 281-2 ‘informal care’ concept 279 outdoor activities 283 personal budgets 280-1 SPECT scan 30 spirituality distress (spiritual) 196-9 Namaste Care 204, 273, 332-3 overview of concept 194-7 promoting spiritual wellbeing 202-6 providing spiritual care 199-201 reminiscence work 202-3 stigma 93, 291, 292 stroke 17 Supportive and Palliative Care Tool (SPICT) 268-9 ‘surprise question’ 265 swallowing/eating difficulties 272 symptoms cognitive 18-9 non-cognitive 19-22 syndemic disorders 294 telecare 285 terminal condition (dementia as) 265 terminology 37-8 see also language Test Your Memory (TYM) 28

tests Addenbrooke’s Cognitive Examination – Revised (ACE-R) 29 blood tests 29-30 Bristol ADL Scale (BADLS) 29 Confusion Assessment Method diagnostic algorithm 241-2 CT scan 30 Functional Assessment Staging Test (FAST) 266-7 limitations of 29 Mini Mental State Examination (MMSE) 28 Montreal Cognitive Assessment (MoCA) 28 MRI scan 30 Neuropsychiatric Inventory 29 PET scan 30 SPECT scan 30 Test Your Memory (TYM) 28 see also diagnosis timetables/routines 304-7 Triangle of Care model 216, 230-1 truth-telling 99, 126-7, 171-2 tube feeding 272 unfamiliar places complex health needs and 231-3 person-centred care in 139-41 utilitarianism 122-3 vascular dementia, overview 14 VIPS model 88-9 virtue ethics 123 visual agnosia 18-9 visual hallucinations 20, 45 vocalisation, abnormal 21, 51 wandering 21, 50-1 wellbeing promoting spiritual 202-6 seven domains of 89-90, 316 young onset diagnosis delays in 59-61 impact of 62-3 overview 57-9 prevalence 58 support needs 64-6

Author Index

Aarsland, D. 14 Aasmul, I. 257, 318 Abbey, J. 255 Abdulla, A. 250, 256, 258 Abraha, I. 112 Abudy, A. 15 Achterberg, W.P. 245 Action on Elder Abuse 145 Addington-Hall, J. 195 Agar, S. 115 Agli, O. 194, 196 Agrawal, N. 63 Ahlskog, J.E. 16 Ahn, H. 251 Aitken, S. 76 Al-Mashoor, S.H. 281 Albert, M.S. 35 Allen, J. 59, 62, 63 Allen, R.S. 161 Alzheimer’s Disease International 12, 13, 157 Alzheimer’s Research UK 212, 215 Alzheimer’s Scotland 171 Alzheimer’s Society 13, 57, 163, 164, 171, 172, 173, 174, 175, 185, 197, 199, 202, 203, 204, 279, 299 American Geriatrics Society 254 American Psychiatric Association (APA) 37, 70 Anckaert, L. 164 Anderson, D. 295 Anderson, R. 300 Andersson, L. 141 Andrew, T. 281 Arai, A. 63 Arasaratnam, C. 112 Armari, E. 58, 65 Armstrong, M. 63

Ashcroft, R.E. 123 Ashcroft-Simpson, S. 198, 206 Attems, J. 13, 14 Backhouse, T. 296 Bailly, N. 194 Baker, A. 145 Baker, C. 89, 314, 322 Ball, S.L. 73 Ballard, C.G. 20 Bamford, C. 292 Banerjee, S. 45, 47 Banicek, J. 300 Barbagallo, M. 157, 160, 164 Barnett, K. 223 Barrett, C. 162 Barron, S. 70 Bartlett, R. 66 Bauer, M. 157, 158 BBC News online 291 Beattie, A. 62, 63, 66 Beauchamp, T.L. 123, 185 Beck, C. 196, 197, 198, 201 Beebe, A. 249 Bell, V. 199, 203 Benbow, S.M. 51 Benedict, R.H. 16 Bennett, G.C.J. 145 Bennett, S. 294 Berger, M.P. 251 Berrio, M. 182 Betteley, A. 182 Beuscher, L. 196, 197, 198, 201 Bird, M. 112, 116 Bisson, J.I. 182 Black, B. 160 Blackburn, E. 204 Blackhouse, A. 227 349

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Blackman, N. 78 Blytt, K.M. 257 Boddington, S. 194 Boeve, B.F. 59 Bonica, J.J. 249 Borbasi, S. 305 Bouman, W.P. 291 Boyd, C.M. 224, 267 Bradley, P. 62 Bramble, M. 61 Bray, J. 283 Brayne, C. 13, 15, 264, 265, 324 Bredin, K. 198 Breland, G.L. 161 British Psychological Society (BPS) 106, 107, 109, 115, 116 Brodarty, H. 215 Brodaty, H. 112 Brohm, R. 196 Brooker, D. 41, 86, 88, 96, 135 Brooks, J. 280 Brown, J. 28 Bruneau, B. 260 Bryden, C. 87, 196, 202, 320 Buchanan, K. 157, 158 Buckingham, K. 293 Bucks, R.S. 29 Buettner, L.L. 202 Bunn, F. 223, 225, 226, 227, 229, 230, 232 Burns, A. 21, 51 Burns, K. 160 Bursell, J. 194, 205 Burston, G.R. 145 Byers, S. 139 Cabote, C.J. 61, 66 Callaghan, J. 157, 158 Callahan, C.M. 141 Cameron, D.H. 173 Campbell, S. 140 Candy, B. 272 Cantwell, P. 327 Capstick, A. 62 Care Quality Commission 135, 300, 312, 313, 314 Carers Trust 214, 216 Carers UK 13 Carr, J. 74

Carr, T.J. 195, 205, 206 Carter, J. 44, 58, 65, 66 Castellano, J.M. 17 Cations, M. 65 Cavanagh, C. 111 Cerejeira, J. 105 Chan, D. 329 Chandler, R. 259, 260 Chapko, D. 294 Charalambous, A. 199 Charlesworth, G. 284 Chen, P. 106 Childress, J.F. 123, 185 Chow, T.W. 61 Christmas, M. 74, 78 Cigolle, C.T. 268 Cipher, D.J. 256 Citizens Advice 171 Clarke, A. 146 Clarke, C.L. 134, 140 Clegg, A. 224 Clemerson, G. 62 Clifford, A. 256 Clissett, P. 139, 140 Closs, S.J. 245, 255 Cochrane Clinical Answers 112 Cohen-Mansfield, J. 112, 115, 204, 251 Cole, L. 178 Coleman, P.G. 195 Colombo, F. 214 Connolly, D.M. 266 Cooper, M. 324 Cooper, S.A. 72, 76 Coppus, A. 17, 72 Corbett, A. 250, 252, 259 Cornwell, J. 305 Costa, N. 106 Creditor, M.C. 299 Crowther, J. 157, 325 Cummings, J.L. 29, 115 Cuthill, F.M. 76 Dalby, P. 194, 196, 197, 198, 199, 202, 205, 206 Dalton, A.J. 70 Daly, L. 61, 195, 196, 200 Davidson, G. 160 Davies, E. 265, 268, 325 Davies, H.D. 161, 165

Author Index

Davis, D.H. 238 Davis, S. 139 Dawson, N. 328 Day, J. 245 Daykin, N. 204 de Bruin, S. 283 de Graaff, F. 177 De Klerk-Rubin, V. 113, 204 De Vries, B. 203 Deb, S. 75 Defrancesco, M. 47 Deloitte UK 300 Demarco, J.P. 185 Dementia Action Alliance (DAA) 213 Dementia Adventure 283 Dening, T. 47, 157 Department for Constitutional Affairs 179 Department of Health 27, 70, 76, 93, 135, 146, 148, 149, 150, 181, 184, 280, 300 Desai, A.K. 21 Detering, K.M. 182 Dewing, J. 300, 307 Di Napoli, E.A. 161, 165 Diehl-Schmid, J. 65 Dijk, S. 300, 307 Division of Clinical Psychology (DCP) 107, 115 Dodd, K. 74, 78 Doherty, D. 66 Doll, G.M. 161, 165 Dominguez, L.J. 157, 160, 164 Donkin, M. 215 Doraiswamy, P.M. 268 Dourado, M. 158 Downs, M. 140, 273 Dubois, B. 34, 36, 43 Ducharme, F. 57, 58, 59, 62, 65 Dudas, R. 46 Duffy, F. 162 Dyer, S.M. 112, 204 Edelstein, B. 112 Edvardsson, D. 140 Ekdahl, A.W. 141 Elias, J. 163 Elliott, K.E. 196, 199, 202, 205, 300 Ely, R. 78

Emre, M. 36, 43 Engedal, K. 63 Ennis, E.M. 199, 205 Espie, C.A. 76 Etters, L. 204 Eurlings, H.A.L. 75 Evans, B. 284 Evans, S.C. 283 Evenhuis, H.H. 75 Everett, D. 195, 202, 203 Fabiszewski, K.J. 273 Fabà, J. 160, 161 Fahey-McCarthy, E. 195, 200 Fakhoury, N. 204 Fanjiang, G. 75 Fargeau, M.N. 198 Feast, A. 107 Feil, N. 102, 204, 318 Feinstein, A.R. 224 Fenge, L.-A. 161 Ferrand, C. 194 Fetherstonhaugh, D. 157, 158 Fick, D.M. 237 Finlay, M.R. 195, 199, 200, 204 Finnema, E. 113 Fleming, R. 285 Flo, E. 257 Folstein, M.F. 75 Folstein, S.E. 75 Fong, T.G. 239 Fortin, M. 224, 267 Fortinsky, R.H. 65 Foss, C. 141 Foster, C. 130 Francis, R. 300 Franco, J.B. 243 Franke, T. 299 Frankl, V. 195 Fratiglioni, L. 17, 185, 264 Freeman, G.K. 226 Friedrichsen, M. 141 Froggatt, K. 140, 181, 182, 273 Garabedian, C. 283 Gardiner, S. 134, 140 Garrido, S. 204 Gastmans, C. 164 Gatz, M. 17

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Gaugler, J.E. 282 Gavendo, R. 204 Gedye, A. 75 George, J. 300 Gerhart, H. 328 Gilhooly, M. 198 Gitlin, L.N. 109, 295 Glasziou, P. 224 Glendinning, C. 280 Goffman, E. 140 Golander, H. 204 Goldberg, S.E. 233, 299 Gomes, B. 327 González, M. 239 Goodall, D. 204 Goodall, M.A. 196, 199, 206 Goodman, C. 232, 265 Gott, M. 157 Government Business 314 Goyder, J. 107 Graham, A. 15 Graham, K. 150 Grando, V.T. 197 Green, T. 57 Greenwood, N. 214 Grennan, S. 204 Griffin, J. 59 Grigorovich, A. 158 Grijalvo-Perez, A.M. 15 Groen-van de Ven, L. 177 Grossberg, G.T. 21 Grudzinskas, A.J. 157 Guthrie, B. 223, 224, 226 Haddad, P.M. 51 Hadjistavropoulos, T. 255 Haesler, E. 157, 161, 163 Haggerty, J.L. 226 Hall, R.J. 241 Halley, E. 283 Hamel, M.B. 265 Hamers, J.P. 241 Handley, M. 232, 233 Hannan, R. 230 Harding, R. 66 Harris, J. 282 Harris, M. 239 Harris, P.B. 62, 66 Harrison Dening, K. 157, 184, 190, 265, 271, 324, 325, 326, 327

Harrison, J.K. 138 Hart, B.D. 303 Harvey, R.J. 13 Hawthorne, G. 281 Hayo, H. 59, 62 Health Foundation 135, 279, 300 Healy, J.P. 162 Hellstrom, I. 66 Henry, C. 181 Hermans, K. 200 Herr, K. 253 Herrmann, N. 105 Heyman, B. 133 Hicks, B. 286 Hicks-Moore, S. 195 Higgins, I. 245 Higgins, P. 205 Higginson, I.J. 195, 265, 268, 325, 327 Highet, G. 268 Hill, J. 225 Hirschman, K.B. 190 HMSO 181 Hochschild, A. 158 Hoffmann, T. 224 Hofoss, D. 141 Hogg, J. 237, 245, 246 Høgsnes, L. 200 Holland, A.J. 72, 78 Holle, B. 305 Holle, D. 109 Hollins, S. 78 Holmes, J. 233 Holtzmann, D.M. 17 Home Office 146 Homeshare UK 285 Hope, T. 51 Horgas, A.L. 251 Hosker, C. 243, 244 Hospice UK 325 House of Commons 300 House of Commons Joint Committee on Human Rights 145 House of Lords 145 Hovland-Scafe, C.A. 265 Howard, A. 182 Howard, R. 44, 239 HSE 188 Hsieh, S. 29, 75 Hubbard, R. 302 Huey, E.D. 61

Author Index

Hughes, C.P. 290 Hughes, J. 125 Hughes, K. 176 Humphrey, J. 328 Husebo, B.S. 257 Hutchinson, K. 62 Hyman, B.T. 35 Iliffe, S. 65, 227, 292 Inouye, S.K. 241, 242, 299 Irish Hospice Foundation 186 Isaac, C. 62 Jack, C.R. 36 Jackson, K. 14 Jackson, T.A. 231, 243 Jacoby, R. 21, 51 Janicki, M.P. 70 Jansen, J. 224 Jarmolowicz, A. 58 Jefferies, K. 63 Jellinger, A.K. 13, 14 Jeste, D.V. 20 Johannessen, A. 58, 59, 61, 65, 66 Johansson, L. 17 Johnson, G.E. 199, 200 Johnson, R.H. 199, 200 Joller, P. 160, 164 Jolley, D. 194, 196, 199 Jones, K. 161 Jones, L. 184, 272 Jordan, A. 256 Josephs, K.A. 59 Judge, K.S. 328 Juven-Wetzler, A. 15 Kaiser, S. 65 Kales, H.C. 109, 295, 296 Kalman, M. 239 Kapo, J.M. 190 Karlawish, J.H.T. 190 Kazer, M.W. 199, 205 Keady, J. 62, 66 Kearney, M. 197 Keast, K. 196, 199, 202, 205 Keatinge, D. 245 Kelber, S.T. 329 Kelley, B.J. 59 Kenefick, A. 260 Kengen, M.M.F. 75

Kennedy, J. 312 Kerr, D. 78 Kessing, L.V. 17 Kiely, D.K. 165 King, M. 195 King’s Fund 318 Kirtley, A. 127 Kitwood, T. 86, 93, 94, 96, 100, 135, 184, 198, 199, 206, 305, 316 Klassen, B.T. 16 Klein, D. 21 Kleissen, T. 57 Kneisl, C. 95 Knight, P. 302 Koch, T. 65 Koenig, H.G. 194, 196 Kontos, P.C 140, 158, 200 Koo, M. 203 Koopmans, R.T.C.M. 58 Kopelman, M.D. 20 Korczyn, A.D. 61 Kramer, B.J. 265 Kraus, C.A. 256 Krishnamoorthy, A. 295 Kroll, T. 139 Kulmala, J. 264 Kuruppu, D.K. 59, 61 La Fontaine, J. 66 Lagarto, L. 105 Langer, N. 195 Latham, I. 41 Launer, L.J. 16 Lawrence, R.M. 199, 206 Laybourne, A.H. 280 Lee, H.B. 20 Leigh Day 145 Lennox, R. 160 Leong, I.Y. 252 Leskovar, C. 196 Levesque, M. 182 Levy, R. 21, 51 Lichtner, V. 259 Life Changes Trust 284 Lillyman, S. 273 Lin, F.R. 18 Lipman, V. 152 Lipuma, S.H. 185 Litherland, R. 62 Litvan, I. 15

353

354

Evidence-Based Practice in Dementia for Nurses and Nursing Students

Livingston, G. 176, 177, 190 Lloyd-Williams, M. 157, 265 Lobbezoo, F. 245 Lockeridge, S. 59, 61, 62, 65, 66 London Borough of Redbridge 283 Long, S. 300 Lott, I.T. 73 Lukas, A. 255 Lyketsos, C.G. 20, 109, 295 Maben, J. 305 McAuliffe, L. 157 McBrien, J. 74, 75 McCabe, M.P. 107 McCaffrey, M. 249, 256 McCance, T. 135, 260 McCann, D. 61 McConkey, R. 70 McCormack, B. 135, 260 McDowell, M.E. 177 McIlfatrick, S. 327 McKeith, I.G. 14, 35, 36, 43 McKhann, G.M. 34, 35 MacKinlay, E.B. 194, 195, 196, 198, 199, 201, 202, 203, 204, 206 MacLullich, A.M. 241 McSherry, W. 195 Mahieu, L. 164 Malouf, R. 47 Mandebuvu, F. 239 Manoochehri, M. 61 Manthorpe, J. 115, 149, 152, 178, 280, 282, 285, 292 Marar, Z. 158 Martyn, C.N. 325 Maslow, A. 161 Masters, M.C. 295 Mathews, D.R. 76 Matsui, Y. 14 Matthews, B.R. 59, 61 Matthews, F.E. 13, 234, 264, 265, 324 Maugans, T.A. 201 Mayers, C.A. 194, 205 Mayrhofer, A. 66 Medway, C. 17 Meeussen, K. 196 Mega, M.S. 20 Melis, R.J. 268 Melunsky, N. 283

Menendez, M. 73 Mental Capacity Act 164 Mental Health Foundation 170, 171 Millar, S. 76 Miller, B.L. 61 Milne, A. 157 Milwain, E. 94 Mitchell, G. 319 Mitchell, S.L. 265, 269, 272 Mitchell, W. 280, 285 Mitniski, A. 224 Mitty, E. 197, 202 Mjørud, M. 63 Mogan, C. 265 Moller, A. 58, 59, 61, 65, 66 Moniz-Cook, E.D. 109, 110, 111, 112, 115, 116 Montgomery, P. 195 Mooney, S.F. 199, 205 Morandi, A. 239 Morgan, K. 17 Moriarty, J. 282, 285 Morris, S. 105, 252 Morrison, R.S. 250, 265, 269, 300 Morrison, S. 252 Moyle, W. 300, 305, 307 Mukadam, N. 231, 269 Mukaetova-Ladinska, E.B. 105 Mulvany, F. 70 Muralee, S. 160 Nance, M. 15 NAO 300 Nasreddine, Z.S. 28 National Council for Palliative Care and Dying Matters Coalition 196 Naue, U. 139 Nay, R. 66, 140, 157, 161 Neary, D. 36 Needham, C. 282 Newbronner, L. 216, 329 Newman, A.B. 17 NICE 42, 106, 112, 113, 194, 230, 232, 233, 237, 238, 245, 246, 291 NICE/SCIE 111, 300 Nicholls, D. 204 Nicolaou, P. 58, 65 Nikmat, A.W. 281 Nolan, M.R. 185, 325

Author Index

Nooyens, A.C. 17 Nuffield Council on Bioethics 170 Nuo, T.H. 252 O’Brien, J.T. 14 O’Connor, D. 66 Ødbehr, L.S. 200 Oddone, E. 300 Office of the Public Guardian 151 Ohara, T. 17 O’Keeffe, M. 146 Olin, J.T. 20 Olver, L. 293 Onieva-Zafra, M.D. 204 ONS 325 Oosterman, J.M. 255 Orellana, K. 282 Orgeta, V. 252 Orrell, M. 107, 328 Ortiz, L.P. 195 O’Shea, T. 15 Osman, S.E. 283 Ott, A. 17 Ott, C.H. 329 Ouyang, W.-C. 46 Oyebode, J.R. 58, 59, 62, 63, 66 Palecek, E.J. 272 Panegyres, P.K. 58, 65 Pargament, K.I. 194, 195 Parpura-Gill, A. 204 Pasero, C. 256 Peel, E. 66 Pemberston, C. 182 Perera, G. 325 Petersen, R.C. 37 Phair, L. 320 Phelan, E.A. 300 Phillips, R. 284 Piggott, M.A. 13 Pimouget, C. 43 Pink, J. 112 Pinkert, C. 305 Pinner, G. 291 Pio, F.J. 61 Pipon-Young, F.E. 62 Pippard, E.C. 325 Pizzacalla, A. 307 Posner, H.B. 17

Post, S.G. 185, 198 Powers, B.A. 195, 205, 206 Powers, G.A. 89, 90 Prager, K. 159 Pressman, P.S. 61 Prince, M. 13, 212, 278 Princess Royal Trust for Carers 215 Qiu, C. 17, 185, 264 Quinn, S. 78 Rahman, S. 239, 260, 326 Rantala, M. 300 Rapoport, M.J. 173 RCPsych 299, 300 Reeve, E. 229 Relate 163 Rhynas, S.J. 139 Rid, R. 190 Riedijk, S.R. 62 Robb, B. 145 Robertson, K. 16 Rockwood, K. 61, 224, 302 Rodda, J. 44 Roe, B. 283 Roehr, S. 156 Rokstad, A.M.M. 282 Roman, G.C. 36 Ropacki, S.A. 20 Roper, K.D. 256 Rose, K. 63 Rosness, T.A. 63 Rossor, M.N. 13, 58, 63 Rowland, C. 327 Royal College of Nursing (RCN) 70, 216 Royal College of Physicians 252, 253, 254 Ruitenberg, A. 17 Russ, C.T. 299 Ryan, A. 163 Sabat, S.R. 103, 196, 198, 199 Sacktor, N. 16 Sager, M.A. 299 Saleh, F.M. 157 Sampson, E.L. 131, 184, 231, 251, 265, 269, 271, 272, 299, 324, 325 Samsi, K. 149, 178, 280 Sanders, S. 329

355

356

Evidence-Based Practice in Dementia for Nurses and Nursing Students

Sands, M.B. 241 Sangars, B. 307 Sangars, D. 307 Saunders, C. 197 Savulich, G. 37 Savva, G.M. 17 Scherder, E.J. 245, 272 Schneider, J. 283 Schulman-Green, D. 260 Schwartz, L. 21 SCIE 157 Scottish Government 135 Seignourel, P.J. 20 Selman, L. 195 Sepulveda, E. 238 Seymour, J. 181 Shared Lives 283 Sharp, E.S. 17 Shega, J.W. 251 Sherman, B. 157 Simard, J. 204, 319 Simpson, J. 59, 62, 65, 66 Simpson, R. 305 Singer, M. 294 Singer, P.A. 182 Siu, A.L. 245, 265, 269, 300 Skelton-Robinson, M. 13 Skomakerstuen Odbehr, L. 194 Sleeman, K.E. 327 Small, N. 140, 273 Smith, M. 302 Smits, C. 177 Snyder, L. 196, 199, 205 Sofi, F. 17 Soliman, A. 216 Song, X. 224 Sorrell, J.M. 194 Speck, P.W. 195 Spector, A. 43, 107, 328 Sperling, R.A. 35 Sperlinger, D.J. 194 Sprinks, J. 162 Stacpoole, M. 204, 273 Starkstein, S.E. 20 Steffens, D.C. 31 Stein-Shvachman, I. 61 Steinberg, M. 13 Stephan, B.C.M. 17, 264 Stevenson, M. 177 Stokes, G. 101, 110

Storey, L. 182 Strech, D. 126 Strydom, A. 72 Stuart, E.H. 293, 294 Stuckey, J.C. 205 Suhonen, R. 199 Sum, S. 285 Sun, The 147 Sunderland, T. 28 Surr, C. 86 Swaffer, K. 90, 106, 269, 314 Sweeting, H. 198 Tadd, W. 300 Tampi, R.R. 160 Tarzia, L. 158, 164 Tatemichi, T.K. 14 Taylor, B.J. 177 Taylor, J.-P. 13 Taylor, M. 307 Terence Higgins Trust 158 Teri, L. 115 Thom, R.P. 157 Thomas, A.J. 13, 195, 294 Thompsell, A. 204 Thompson, R. 316 Thornlow, D.K. 300 Threadgold, M. 204 Tible, O.P. 106, 112 Tierney, W.M. 182 Timmins, F. 195 Tischler, V. 283 Titterton, M. 136, 140 Todd, A. 239 Toivonen, K. 199, 200 Tolman, S. 325 Tolson, D. 302, 305 Tompkins, C.J. 194 Townsend, P. 145 Tracy, B. 252 Trevitt, C. 194, 195, 196, 198, 199, 202, 203, 204, 206 Tronto, J.C. 135 Troxel, D. 199, 203 Tschanz, J.T. 268 Tucker, I. 160 Tuffrey-Wijne, I. 78 Turk, V. 74, 78 Twigg, J. 140, 141, 305 Tyrrell, J. 72

Author Index

Valenzuela, M.J. 17 van der Steen, J.T. 184, 265, 269, 272, 273, 331 van Vliet, D. 58, 59, 61, 63 Vance, D.E. 197, 199, 204, 205, 206 Verghese, P.B. 17 Vig, E.K. 190 Villar, F. 160, 161 Vincent, C. 300 Volicer, B. 273 Volicer, L. 204, 273 Wadham, O. 163 Walsh, F. 139 Walsh, S. 62 Walters, D. 200 Ward, D. 243, 244 Ward, R. 140 Watchman, K. 78 Watson, J. 198, 200 Watson, N.M. 195, 205, 206 Webb, R. 190 Wechsler, D. 71 Weijenberg, R.A. 245 Wells, N. 256 Wendler, D. 190 Werner, P. 61, 63 White, E. 157, 164 White, N. 256 Wilkinson, H. 78 Wilkinson, P.J. 195 Williams, J. 146

Williamson, T. 127 Wills, W. 216 Wilson, H. 95 Wilson, L.R. 73 Wilson, R.S. 17 Wilson, S. 329 Winblad, B. 17 Windle, G. 328 Witt, J. 270 Wolkowitz, C. 305 Woods, B. 328 Woolham, J.G. 285 World Health Organisation (WHO) 12, 34, 135, 145, 271, 324 Wu, J. 70 Wu, L.F. 203 Wydall, S. 146 Xie, J. 13, 33, 265, 324 Yeh, Y.-C. 46 Youell, J. 157, 158 Young, J. 237, 239 Yu, F. 63 Zarit, S.H. 282 Zarowitz, B.J. 15 Zigman, W.B. 73 Zohar, J. 15 Zuidema, S.U. 115 Zwakhalen, S.M. 251

357