Designing and Delivering Dementia Services E-Book
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- Herausgeber: John Wiley & Sons
- Kategorie: Fachliteratur
- Sprache: Englisch
Dementia is increasingly and widely recognised as a serious health and social challenge, in the developed world as well as in the developing world. The need therefore to design and implement dementia care services of high quality is becoming more and more vital, particularly given the likelihood of ever increasing demand in a world, which likely sees resources at best remaining at current levels.
Designing and Delivering Dementia Services describes current developments in the design and configuration of dementia services. It offers an informative and detailed overview of what constitutes high quality care, considering the circumstances patients and carers may find themselves in.
For dementia to get the priority it deserves, a number of factors are important and the book charts the invaluable contributions of various Alzheimer's Associations and Societies: this provides a focus on dementia strategies and plans at national levels: the book reports on the state of affairs regarding such strategies and provides a unique insight into the process of how one of these was developed and implemented.
Recognising the need to prove that service developments lead to a higher quality of care, increased productivity and increased efficiency, the book links the resulting picture to service-based research methodologies, with an emphasis on the strengths and limitations of that research.
Contributions from 17 countries on 4 continents give an overview of the state of affairs across the world, paying attention to successful - and less successful - initiatives to improve dementia care. The book furthermore provides pragmatic approaches to ensure planning becomes reality, highlights the need for structured workforce development, education and training and describes the opportunities afforded by assistive technology.
This book is of prime informative and practical value given that pressures on dementia services are projected to mount across the world against a backdrop of limited resources and expertise.
Designing and Delivering Dementia Services
- Defines the problems involved in meeting an increasing demand for dementia care services in a poorer world
- Maps initiatives and developments in the design and configuration of these services in a variety of international settings
- Analyses these developments against the background of political and health economic circumstances
- Provides a road map of where health services should go in response to this growing challenge.
The first book to define, analyse and map initiatives for dementia care services in a time of increasing demand and decreasing resources, this book is essential reading for commissioners, senior clinicians and service planners in health and social care. It will also be of interest to academic researchers involved in qualitative services research as well as quantitative health economic research, health and social care managers and those involved in workforce planning and development.
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Table of Contents
Title page
Copyright page
Foreword
Preface
Contributors
Section 1: The need for dementia services of excellence: Setting the scene
Chapter 1: The need for dementia care services
The problem of dementia: A historical perspective
The need for dementia services
Managing dementia
Screening and prevention of dementia
Tackling stigma
Service configuration
Receiving a diagnosis
Interventions after diagnosis
Social care including care homes
Care homes and end of life
Hospital care for people with dementia
Conclusions
Chapter 2: The historical development and state of the art approach to design and delivery of dementia care services
Introduction
Clinical epidemiology
Dementia care research
State-of-the-art design of dementia care services
Section 2: Service models
Chapter 3: Services for people with young onset dementia
Introduction
What is necessary for good service delivery?
International perspectives
Chapter 4: Services for people with incipient dementia
Introduction
Needs of people with incipient dementia
Services for asymptomatic individuals at increased risk of dementia
Services for people with prodromal dementia
Summary and conclusions
Chapter 5: Services for people with mild dementia
Introduction
The definition of mild dementia
Memory clinics and other specialist services for dementia diagnosis and assessment
The role of primary care in diagnosis and assessment
Specialist versus non-specialist diagnosis: Getting the balance right
Discussing the diagnosis
Post-diagnosis information
Interventions for cognitive symptoms and maintenance of function
Interventions for non-cognitive symptoms
Chapter 6: Services for people with moderate dementia
Introduction
Moderate dementia defined
Assessing the need for services
Goals and desired outcomes of services
Approaches for services in moderate dementia
Integrated models of care for older adults
Caregiver service recommendations
Services provided in the community
Long-term residential and nursing home care
Hospital settings
Summary
Chapter 7: Services for people with severe dementia
Characteristics of persons with severe dementia
Settings of care
Care and management of symptoms and co-morbidities in severe dementia
Ethical issues in severe dementia
Support for caregivers of people with severe dementia
Conclusions
Acknowledgements
Section 3: External drivers of service development
Chapter 8: How to get results in public policy for Alzheimer's and dementia services
Introduction
Strategic objective and arguments
The economic argument
Organisational infrastructure and mobilisation
Implementation
Finally …
Where does responsibility for dementia rest?
Much has been achieved
Recent developments
A window of opportunity?
Conclusion
The journey to a National Dementia Strategy
Has having a National Dementia Strategy made a difference?
Are things getting better for people living with dementia and their carers?
Conclusion
Chapter 9: Developing policy that works for dementia: National and global lessons in what makes a difference
Dementia as a health issue
A worldwide issue
A shared language
Intervention to manage the challenge: Development of public policy
How can things be changed?
Building the narrative
How are we doing?: Research
How are we doing?: The NDS
Conclusion
Chapter 10: Health economics, healthcare funding and service evaluation: International and Australian perspectives
Introduction
The economic impact of dementia
Types of economic evaluation
Economic evaluations in dementia
Measuring and valuing quality of life in dementia
Evaluation of Australia's dementia initiative
Discussion and summary
Acknowledgements
Section 4: Services and developments around the world
Chapter 11: The Americas
Ageing in Brazil
Prevalence of dementia
Organisation of services
Education, training and research
Conclusions
Demographic and health facts
Clinical practice
Complementary activities
Conclusion
Chapter 12: Australasia
Epidemiology and burden of dementia in China
Ageing service policies
Guidelines on dementia care
Service resources for dementia care
Future perspectives
Introduction
Need for services
Health services in India
Dementia care services: The current situation
Clinic-based services
People's participation in dementia care
Future directions
Background
Overview of dementia care
Features of dementia care
Current issues
Long-term care insurance
Who is entitled to receive long-term care services?
Care category decision
Services provided
Who can provide services?
Present condition and future prospect
Chapter 13: Eastern Europe
Acknowledgement
Epidemiology
The development and present state of dementia care
Social welfare for dementia patients in Hungary
Non-governmental organisations (NGOs)
Suggestions for future developments
The Polish healthcare system
Dementia care in Poland: Services and development
Binding acts
Chapter 14: Western Europe
Long-term care insurance and medical care of dementia patients
Outpatient services
Geriatric day care
Nursing home care
Comparison of segregated and partially segregated dementia management in Hamburg
Comparison of special dementia care in Hamburg to traditional dementia care in Mannheim
Summary and conclusions
Acknowledgements
Demographic and epidemiological aspects
The Spanish national health service (SNS)
Health and social care models
Dementia in primary care
How dementia patients are referred to specialist services
Background and demography
National guidelines
County councils
Municipalities
Special accommodation
Continuity of the care pathway
Dementia centre ()
Future challenges
Introduction
Memory clinics in the UK: Background
Memory services: The current position
Accreditation
Looking forward
Section 5: Designing and developing services
Chapter 15: Developing a business case, negotiating, securing funding
Why is drafting a business case important?
Development of a business case
The business case process
The business case document
Concluding comments
Chapter 16: Workforce planning and development
Introduction
Workforce planning and workforce development
The need for a strategic approach: Vision, planning and ownership
Competencies and training needs analysis
Personal learning plans and reflective practice
The Norfolk dementia care academy
Compassion
Appendix
Chapter 17: The role of assistive technology in the care of people with dementia
Introduction
Why is assistive technology in use in dementia care?
The role of assistive technology in supporting family carers
The ethics of the use of assistive technology
Assessment of the person with dementia for use of assistive technology
Information about assistive technology: How to find out what is currently available
Assistive technology in dementia care: Implications for future research and service provision
Index
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Library of Congress Cataloging-in-Publication Data
Designing and delivering dementia services / edited by Hugo de Waal ... [et al.].
p. ; cm.
Includes bibliographical references and index.
ISBN 978-1-119-95349-4 (cloth)
I. De Waal, Hugo (Hugo Eduard), 1956-
[DNLM: 1. Dementia–therapy. 2. Mental Health Services–organization & administration. 3. Patient-Centered Care–economics. WM 30.1]
362.1968'3–dc23
2013005830
A catalogue record for this book is available from the British Library.
Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books.
Cover image: iStock © Robert Adrian Hillman
Cover design by Sarah Dickinson
Foreword
On Smiling
Guerrilla activity – that's what it was some 50 years ago, when a few psychiatrists in a few countries started informally to grapple with constructing local services for old people. Today, dementia, until quite recently hardly noted as a public health issue, is almost everywhere seen as the huge challenge that it is.
In this ‘bench-book’, workers will find not only new ideas from all over the world, but often, almost as importantly, corroboration that they are on the right track; other readers, I hope, dipping casually, may find themselves stimulated towards work in this fascinating field.
We see here much heartening progress, not least in improving physical environments for dementia care. Almost gone in my country are the slums in which most such care took place. Now, gifted architects, designers and electronics specialists have been drawn in alongside health staff, to great effect. Collaboration between services is beginning to become real. In many countries, ‘minimum standards’ have been promulgated, though enforcement is still far from stringent. And we have taught that good care must be preceded by meticulous diagnosis and be accompanied by open-minded continuing reassessment.
But alas, the shortcomings in care which originally stimulated many pioneers to enter this field [1] have not gone away. Despite the accumulation of skills and experience and despite monitoring, scandals still hit the media almost weekly – and many don't reach the media. What is to be done to prevent such tragedies? Erving Goffman [2] long ago taught those of us who work in what he called ‘the tinkering trades’ (‘tinkering’ with the minds and bodies of human beings) that collective care of groups of vulnerable people has an inherent tendency to routineism and to depersonalisation, even leaving aside underfunding and understaffing.
Good, humane and respectful care seems to me largely to rest on the following pillars: first, a basic adequacy (not necessarily an abundance) of resources, in settings that are appropriate to needs. Next, effective education of professional and non-professional staff (and it is the latter that often present the biggest challenge to educators). Then, and crucially, the importance of senior staff as ‘role models’. They must not only set standards, but must demonstrate them by their own behaviour, even in small details. They should give to all staff a sense of ownership of the enterprise, and pride in it. Readiness to listen and to attend to views and problems presented from ‘below’ – these are powerful determinants of good care, even in otherwise unprivileged settings.
Finally and seriously, I urge that we train ourselves and our staff to smile in response to calls from patients and relatives, even when we are hard-pressed. If the big supermarkets can train their staff to smile when customers accost them, even when they are busy on other tasks, why can't we? Smiling is the great under-tapped resource!
Tom Arie, CBE
Professor Emeritus of Health Care of the Elderly
University of Nottingham
Ageing and Disability Research Unit
The Medical School
Queen's Medical Centre
Nottingham, UK
References
1. University of Glasgow (2008) Guthrie trust witness seminar on old age psychiatry. Available at: http://www.gla.ac.uk/media/media_196526_en.pdf (last accessed on 27 March 2013).
2. Goffman E (1961) Asylums. New York: Doubleday.
Preface
Dementia is rightly no longer considered a normal and inevitable part of the ageing process, nor an affliction for which there are no meaningful interventions. It is now appropriately recognised, at least by all enlightened practioners, as a major brain illness for which considerable benefits can be accorded by a prompt and full assessment and diagnosis, followed by the provision of appropriate services, which would include subtype specific treatment and support. Debates on what should or should not be considered part of normal ageing are now superseded by research attempting to define the boundaries of conditions such as ‘mild cognitive impairment’, not because it is thought ‘normal’ or indeed ‘mild’, but because it indicates someone is at higher risk of developing outright dementia.
Dementia is an especially devastating illness, because at its heart it represents an organic failure of the most complex organ and so directly affects characteristics of someone's being in a way not seen in any other ‘organ failure’. Dementia erodes one's understanding of the world, including self and personhood (recently Julian Hughes wrote about this with great clarity in Thinking through Dementia,1 an exploration which charts those matters in detail). It is no wonder that the symptoms of dementia are bewildering to the person with the illness, as well as to everyone around them. For this reason in particular, services cannot just be diagnostically driven; to be of high quality they need to be ‘person-centred’.
In compiling this text, the editors sought to be advocates of high-quality dementia services, a role we share with many practitioners. However, the book cannot prescribe what a ‘good service’ exactly should look like, for the reasons above. On top of the fact that services need to be responsive to patients and carers, they need to fit in with the wider construction of local healthcare systems. Furthermore, those who champion dementia services will have no choice but to engage in the process of securing resources in competition with other worthwhile causes.
That leads to the conundrum of designing services with on one hand the individual foremost in mind, while forming part of a complex health discourse on the other. How to advise on such service design in general terms? The first unavoidable truism is that dementia care services must be flexible. Any service which has to say ‘no, we can't meet that need’ is already not person-centred. The second and opposite truism is that there is no point in the approach ‘we can do whatever it is you need us to do’ if it can't be lived up to. A balance must be struck between a service being manageable and affordable (which likely predicts a degree of inflexibility) and being able to respond to someone's personhood, given someone's predicament. In other words, without the latter, the service won't work for someone; without the former, the service won't work for anyone.
In putting this book together we felt it was important to ‘set the scene’ in order to refresh our minds on the components of high-quality dementia care, particularly if supported by evidence, and taking into account the history of how we have arrived where we are. The two chapters in Section I provide a comprehensive account of this backdrop.
The contributors in Section II explore in detail service design, bearing in mind the likely needs people may have in different stages of dementia and at different levels of severity (and ignoring willfully the effect of diagnostic subtypes on those needs, as we focus on problems, challenges and needs, rather than on symptoms). The exception is the chapter on services for younger people with dementia, designated by age group, rather than severity of illness. This recognises the particular impact of age, when it relates to the responsibilities, hopes and expectations someone may have, who is likely still working and supporting a family.
As we pointed out above, while it is impossible to isolate a diagnosis of dementia from the person, neither is it possible to consider service design without taking into account the wider political, economical and healthcare context. Section III provides insight into those issues from a number of viewpoints. We are grateful to the senior officials of various Alzheimer's Associations and Societies for sharing their experiences. In this section attention is given to the crucial role national or governmental strategies can play, an issue echoed in many contributions from around the world in Section IV. Anyone wondering how to foster such strategies will be able to get several very pragmatic tips in Chapter 9. However, as noted, services do not exist in a vacuum and often have to compete in an economic reality, which is less than fortuitous in many countries. It is therefore of increasing relevance to identify how a service lives up to its ‘investment’. Chapter 10 provides vital knowledge and expertise in these – more ‘hard-nosed’ – issues.
We thought it would be foolish not to learn from others: in Section IV we collated contributions from around the world. While many themes appear universal, every country in our list describes initiatives and lessons learned, which may be of use to others.
Finally in Section V we address additional pragmatic considerations relevant to service design. In Chapter 15 we provide advice to any practitioner who wants to take initiative and improve the environment of people with dementia. We present a relatively simple example of how to construct a ‘business case’ as we think it helpful to anyone who wants to ‘make the case’. In the hope that a wide range of practitioners will read this book, we furthermore present a more complicated case study on what a business case might look like if it proposes services with a number of objectives, to be delivered by a variety of agencies. We comment on potential errors to illustrate how to read and interpret a business case in general.
Given the growing demand for services, every contribution in this book expresses concern that resources are at best projected to stagnate at current levels. This means that everyone needs to do more with less. We feel strongly that the dementia ‘workforce’ (including informal and family carers) cannot meet that demand unless it develops into a workforce which is as effective and efficient as possible. This implies workforce planning and development: Chapter 16 analyses in detail essential aspects and components of such planning. We put emphasis on experiential learning, as we believe that a workforce which trains and educates while providing care is more likely to be of high quality. It allows for the possibility that the workforce generates more capacity in the healthcare system in a cascading fashion.
Lastly, Chapter 17 heralds the future: pointing out the impact physical environments have on people's well-being, it describes the opportunities technological advances, such as telehealth, may present. Interestingly, it stresses that technology can only be used effectively if it takes full account of the person it is meant to assist: an insight that takes us full circle.
Hugo de Waal
Constantine Lyketsos
David Ames
John O'Brien
Norwich (UK), Baltimore (USA), Melbourne (Australia), Cambridge (UK)
December 2012
Note
1Julian C Hughes. (2011) Thinking through Dementia. New York: Oxford University Press.
Contributors
Ricardo F. Allegri Memory and Aging Center, Instituto de Investigaciones Neurológicas Raúl Carrea (FLENI), Buenos Aires, Argentina
David Ames, BA, MD, FRCPsych, FRANZCP Professor of Ageing and Health, and Director, National Ageing Research Institute, National Ageing Research Institute, Royal Melbourne Hospital, Parkville, Victoria, Australia
June Andrews Director of the Dementia Services Development Centre, School of Applied Social Science, University of Stirling, Stirling, Scotland, UK
Pablo M. Bagnati Memory and Aging Center, Instituto de Investigaciones Neurológicas Raúl Carrea (FLENI), Buenos Aires, Argentina
Christian Bakker Health Care Psychologist. Radboud University Nijmegen, the Netherlands
Sube Banerjee Professor of Dementia, Centre for Dementia Studies, Brighton and Sussex Medical School, University of Sussex, Brighton, UK
Brigitta Baran, MD, PhD Department of Psychiatry and Psychotherapy, Faculty of Medicine, Semmelweis University, Budapest, Hungary
Betty S. Black, PhD Associate Professor, Department of Psychiatry and Behavioral Sciences, the Johns Hopkins University School of Medicine and the Johns Hopkins Berman Institute of Bioethics, Johns Hopkins Hospital, Baltimore, Maryland, USA
John Beaumont Former professor, School of Management, University of Bath, Bath, UK; Applied Management Systems, University of Stirling, Stirling, Scotland, UK
Mary Blazek, MD Clinical Assistant Professor, Department of Psychiatry, Geriatric Psychiatry Section, University of Michigan Medical School, Ann Arbor, Michigan, USA
Cassio M. C. Bottino Old Age Research Group (PROTER), Institute and Department of Psychiatry, University of São Paulo, São Paulo, Brazil
Christopher M. Callahan, MD Indiana University Center for Aging Research and the Regenstrief Institute, Inc., Indianapolis, Indiana, USA
Andrew Chidgey Head of Policy and Public Affairs, Alzheimer's Society, London, UK
Tiffany Chow, MD, MSc Assistant Professor of Psychiatry, Department of Medicine, Geriatric Psychiatry Division, University of Toronto, Toronto, Canada
Claudia Cooper, PhD Mental Health Sciences Unit, University College London, London, UK
David Conn, MBBCh, BAO, FRCPC Associate Professor, Department of Psychiatry, University of Toronto, Toronto, Canada
Stephen Curran, MRCPsych, PhD Consultant in Old Age Psychiatry, South West Yorkshire Partnership NHS Foundation Trust, Wakefield, UK; Professor of Old Age Psychiatry, Centre for Health and Social Care Research, School of Human and Health Sciences, University of Huddersfield, Huddersfield, UK
Colleen Doyle Principal Research Fellow, National Ageing Research Institute, Royal Melbourne Hospital, Melbourne, Victoria, Australia
Engin Eker, MD Professor, Faculty of Medicine, Department of Geriatric Medicine and National Alzheimer Foundation, Bezmialem Vakif University, Istanbul, Turkey
Eleanor Flynn, MB BS, BTheol, M Ed, Dip Ger Med, FRACGP, FRACMA Senior Lecturer in Medical Education, University of Melbourne, Parkville, Victoria, Australia
Manuel Franco, MD, PhD Associate professor, University of Salamanca, Salamanca, Spain. Head of Psychiatric Department, Zamora Hospital, Zamora, Spain; Director of IBIP Lab, Iberian Research Institute, Intras Foundation, Zamora, Spain
Patricio Fuentes Cognitive Neurology and Dementia Unit, Neurology Service, Hospital of Salvador and Geriatrics Section, Clinical Hospital University of Chile, Santiago, Chile
Gábor Gazdag, MD, PhD Head of the Consultation–Liaison Psychiatric Service, Department of Psychiatry and Psychotherapy, Faculty of Medicine, Semmelweis University, Budapest, Hungary; Head of the Consultation–Liaison Psychiatric Service, Consultation–Liaison Psychiatric Service, Szent István and Szent László Hospitals, Budapest, Hungary
Laura N. Gitlin, PhD Center for Innovative Care in Aging, Department of Community-Public Health, School of Nursing, Baltimore, Maryland, USA; Department of Psychiatry and Behavioral Sciences, Johns Hopkins University, Baltimore, Maryland, USA
Jean Georges Executive Director, Alzheimer Europe, Luxembourg
Meredith Gresham, B.App.Sci.O.T. (Sydney University) Dip Arts Mus. (Qld. Cons.) A. Mus.A. HammondCare's Research Manager, HammondCare Foundation, Sydney, NSW, Australia
Zoltán Hidasi, MD, PhD Department of Psychiatry and Psychotherapy, Faculty of Medicine, Semmelweis University, Budapest, Hungary
Iva Holmerova, MD, PhD Associate Professsor, Centre of Gerontology and CELLO-ILC-CZ, Faculty of Humanities, Charles University in Prague, Prague, Czech Republic
Jakub Hort, MD, PhD Associate Professsor, Memory Disorders Clinic, Department of Neurology, 2nd Faculty of Medicine, Charles University in Prague and University Hospital Motol V Úvalu 84, Prague, Czech Republic; Associate Professsor, International Clinical Research Center, St. Anne's University Hospital Brno, Brno, Czech Republic
Aud Johannessen Aldring og Helse, Nasjonalt Kompetansesenter, Oslo, Norway
Roy W. Jones The RICE Centre, Royal United Hospital, Bath, UK
Helen C. Kales, MD Department of Psychiatry, School of Medicine, University of Michigan, Ann Arbor, Michigan, USA
Janet Kavanagh, MS Director of Project Development and Administration, Program for Positive Aging, Department of Psychiatry, University of Michigan Medical School, Ann Arbor, Michigan, USA
Dorothy Kennerley Head of Education and Training, Norfolk & Suffolk Dementia Alliance, Norfolk, Norfolk, UK
Raymond T.C.M. Koopmans Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, The Netherlands
Janus L. Kremer Instituto de Neuropsiquiatría Kremer, Córdoba, Argentina
Alexander F. Kurz Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Nicola T. Lautenschlager Academic Unit for Psychiatry of Old Age, Department of Psychiatry, The University of Melbourne, St. George's Campus, St. Vincent's Hospital, Kew, Victoria, Australia; School of Psychiatry and Clinical Neurosciences and WA Centre for Health & Ageing, The University of Western Australia, Perth, Western Australia, Australia
Florence Lébert Centre national de référence des malades Alzheimer jeunes, Université Lille Nord de France, France
Jerzy Leszek, MD Associate Professor of Psychiatry, Department of Psychiatry, Wroclaw Medical University, Wroclaw, Poland; President, Lower Silesian Association of Alzheimer Patients' Families, Wroclaw, Poland
Gill Livingston, MD Mental Health Sciences Unit, University College London, London, UK
Dina Lo Giudice, MB BS, PhD, FRACP Geriatrician, Royal Melbourne Hospital, Parkville, Victoria, Australia
Constantine G. Lyketsos, MD, MHS Department of Psychiatry and Behavioral Sciences and Memory and Alzheimer's Treatment Center, Bayview Campus, Johns Hopkins University, Baltimore, Maryland, USA
Raimundo Mateos, MD, PhD Professor of Psychiatry, Department of Psychiatry (University of Santiago de Compostela, USC) and Psychogeriatric Unit (CHUS University Hospital), School of Medicine, Santiago de Compostela, Spain
Claire Mitchell, MBA Visiting Lecturer, Durham University Business School, Durham, UK
Miharu Nakanishi, PhD, RN Senior Researcher, Research Division, Institute for Health Economics and Policy, Minato-ku, Tokyo, Japan
Florence Pasquier, MD, PhD Professeur des Universités – Praticien-Hospitalier en Neurologie au Centre. Hospitalier et Universitaire de Lille, Lille, France
Lynne Pezzullo Lead Partner, Health Economics and Social Policy, Deloitte Access Economics, Deloitte Touche Tohmatsu, Kingston, ACT, Australia
Peter V. Rabins, MD, MPH Professor, Department of Psychiatry and Behavioral Sciences, the Johns Hopkins University School of Medicine and the Johns Hopkins Berman Institute of Bioethics, Johns Hopkins Hospital, Baltimore, Maryland, USA
Julie Ratcliffe Professor in Health Economics, School of Medicine, Flinders University, Repatriation General Hospital, Daw Park, South Australia, Australia
Glenn Rees CEO, Alzheimer's Australia, Australia
Denise Rettenmaier, MD Ambulatory Care Clinic, Yountville, CA, USA
Louise Robinson Professor of Primary Care and Ageing, Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
Tor Rosness Norwegian Centre for Dementia Research, Department of Geriatric Medicine, Ullevaal University Hospital, Oslo, Norway
Quincy M. Samus Department of Psychiatry and Behavioral Sciences, Johns Hopkins Bayview, The Johns Hopkins School of Medicine, Baltimore, Maryland, USA
Manuel Sánchez-Pérez, MD Coordinator of the Psychogeriatric Unit, Unitat de Psiquiatria Geriátrica, Hospital Sagrat Cor., Barcelona, Spain
K.S. Shaji Professor of Psychiatry, Govt. Medical College, Thrissur, India
Laura M. Struble, PhD, GNP-BC Clinical Assistant Professor, University of Michigan School of Nursing and the Department of Psychiatry, University of Michigan Medical School, Ann Arbor, Michigan, USA
Guk-Hee Suh, MD, PhD Professor of Psychiatry, Hallym University Hangang Sacred Heart Hospital, Seoul, Korea
Katerina Sheardova, MD Assistant Professor, International Clinical Research Center, Department of Neurology, St. Anne's University Hospital Brno, Brno, Czech Republic
Marta Sochocka, MD Laboratory of Virology, Laboratory of Biomedical Chemistry, Institute of Immunology and Experimental Therapy Polish Academy of Sciences, Wroclaw, Poland
T.P. Sumesh Assistant Professor of Psychiatry, Govt. Medical College, Thrissur, India
Fernando E. Taragano Department of Neurosciences, Centro de Estudios Médicos e Investigaciones Clínicas (CEMIC), Buenos Aires, Argentina
Denise Thompson Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, The Netherlands
Ahmet Turan Isik, MD Professor, National Alzheimer Foundation, Istanbul, Turkey
Marjolein de Vugt Neuropsychologist, School for Mental Health and Neuroscience, Alzheimer Centrum Limburg, Maastricht University, Maastricht, The Netherlands
Hugo de Waal, MD, FRCPsych, FHEA Lead Consultant, Norfolk Dementia Care Academy, The Julian Hospital, Norwich, Norfolk, UK.
Lars-Olof Wahlund, MD, PhD Professor of Geriatic Medicine and Per-Olof Sandman, Professor of Care, Department of Neurobiology, Care Sciences and Society, Section of Clinical Geriatrics and Section of Nursing, Karolinska Institutet, Stockholm, Sweden
Huali Wang, MD Associate Director of the Dementia Care & Research Centre and Associate Professor of Psychiatry. Institute of Mental Health, Peking University, Beijing, China
John Wattis, FRCPsych Professor of Psychiatry for Older People, Centre for Health and Social Care Research, School of Human and Health Sciences, University of Huddersfield, Huddersfield, UK
Siegfried Weyerer, PhD Professor of epidemiology, Zentralinstitut für Seelische Gesundheit, Mannheim, Baden-Württemberg, Deutschland
Adrienne Withall School of Public Health and Community Medicine, Kensington Campus, University of New South Wales, Australia
Marc Wortmann Executive Director, Alzheimer's Disease International, London, UK
Atsuhiro Yamada, PhD, MBA Senior Consultant, Research & Consulting Division, the Japan Research Institute Ltd, Shinagawa-ku, Tokyo, Japan
Yung-Jen Yang Tsao-Tun Psychiatric Centre, Nan-Tou, Taiwan
Xin Yu, MD Vice Chairman of Chinese Association for Alzheimer's Disease and Professor of Psychiatry. Institute of Mental Health, Peking University, Beijing, China
Section 1
The need for dementia services of excellence: Setting the scene
Chapter 1
The need for dementia care services
Gill Livingston and Claudia Cooper
Mental Health Sciences Unit, University College London, UK
The problem of dementia: A historical perspective
Dementia is largely an age associated disease. It was relatively rare prior to the rapid increase in the average life spans of people in the developed world in the 20th century. Nonetheless, Plato and other writers from ancient Greece and Egypt described a major memory disorder associated with ageing. Philippe Pinel (1745–1826) and Esquirol (1772–1840) were among the first to define dementia: Esquirol described it as ‘a cerebral disease characterised by an impairment of sensibility, intelligence and will’. In 1906, Alois Alzheimer first described what came to be known as Alzheimer's disease (AD), a degenerative and severely debilitating neurological disorder. He regarded the condition as a relatively rare form of dementia, generally afflicting patients younger than 65. This belief that senile dementia was an inevitable consequence of ageing and distinct from pre-senile dementia, an unusual disease with specific cerebral pathology occurring by definition in people aged under 65, remained unchallenged until the 1970s. In 1976, Katzmann suggested that many cases of senile dementia were pathologically identical to AD [1]. He called Alzheimer's a ‘major killer’ and the fourth leading cause of death in the USA. His seminal editorial revolutionised the care of older people with dementia, who could be diagnosed as having a disease, rather than suffering from an inevitable part of normal ageing. This paved the way for the first trials of dementia treatments. In the decade prior to his publication, fewer than 150 articles were published on the topic of AD. There were virtually no trials of pharmacological or non-pharmacological treatments for dementia. Since 1976, research interest in dementia has blossomed, with PubMed recording nearly 9000 publications about Alzheimer's and nearly 20,000 about dementia in 2011 alone.
The need for dementia services
The number of people with dementia is currently estimated as 35 million worldwide, and this number is projected to double every 20 years due to increased lifespan, with numbers reaching 66 million by 2030, 81 million by 2040 and over 115 million by 2050 [2,3]. The largest numbers of people with dementia are currently in China and the developing Western Pacific, Western Europe and the USA [4]. It is estimated to cost $600 billion annually, which is equivalent to 1% of the gross domestic product [5]. Worldwide dementia contributes 4.1% of all disability-adjusted life years and 11.3% of years lived with disability [5].
Dementia affects the person with the illness, their family and society through loss of memory and independence, challenging behaviour, and often decreased well-being of both the person with dementia and their carer(s). All of these aspects require social and healthcare services and therefore have cost implications. The largest cost is for 24-hour care.
Managing dementia
In the last 15 years, symptomatic treatments for dementia have become available. Alongside these, growing evidence bases of non-pharmacological interventions for dementia and treatment of neuropsychiatric symptoms have developed. While disease-modifying treatments for dementia are not yet available, many promising trials, targeted mainly at beta-amyloid but also, for example, at tau phosphorylation or aggregation and glycogen synthase kinase-3 (GSK-3), are underway and will be reported soon. Meanwhile, developments in the symptomatic treatment of the illness have been drivers to transform dementia care. The benefits of early diagnosis and thus access to treatment are now clear, and this has led to developments in setting up of dementia specific services in the developed world.
Good dementia care has thus changed over the last decades to encompass the provision of active evidence-based treatments, including psychosocial and educational management, as well as drug-based treatment and access to research participation. This chapter will discuss the components of current high-quality, evidence-based dementia care from prevention to diagnosis to end of life care, and how this compares with current service provision.
Screening and prevention of dementia
Management of risk factors
There are many potentially modifiable risks or protective factors for dementia. There is clear evidence from observational studies of the protective effects of cognitive reserve (helped by intellectual or social activities and occupation), Mediterranean diet, exercise or physical activity, and potentially modifiable medical risks, such as midlife obesity, midlife hypertension and hypercholesterolaemia, smoking, diabetes, depression, and stroke [4,6]. Randomised controlled trials have been inconsistent in showing that controlling hypertension reduces the risk of developing dementia, and trials of statins have been negative [4]. Thus, while those measures are potentially important and controlling them has theoretical potential to prevent up to half the incident cases of AD, there is little evidence as to their real-life effect [4,6]. This may be because vascular factors in midlife increase the risk of Alzheimer's and vascular dementia, while the interventions studies have enrolled older people as participants [7]. Although treating hypertension and hypercholesterolaemia are not yet shown to reduce dementia at a population level, reducing risk of cerebrovascular events in those at high risk is clearly a rational step to preserve cognition, as well as being part of good primary care.
Pre-dementia syndromes
There is a growing body of evidence that dementia may be preceded by a period of subjective cognitive impairment without objective impairment [8]. This raises the possibility of screening for pre-dementia syndromes in order to intervene at an early stage. Self-reported memory problems are currently the best single indicator we have of objective cognitive problems [9], but their sensitivity for detecting future dementia appears fairly low. A third of people who screened negative for dementia reported forgetfulness in the past month in a large English survey, and this symptom was not related to age, suggesting that reporting forgetfulness was not a prelude to dementia in most of the younger adults who reported it [10]. Although currently there is little evidence for effective treatment strategies before the clinical dementia syndrome becomes apparent, this would be the logical time to use disease-modifying drugs if they become available, because the pathological changes are thought to precede the clinical picture of neurodegenerative dementias by many years.
Mild cognitive impairment (MCI) is a better indicator of incipient dementia with more than 50% of people with MCI progressing to dementia within 5 years, although some people with MCI remain stable or improve [11]. Patients presenting to memory clinics with MCI have an 18% per annum conversion rate, which is higher than the rates reported in epidemiological studies, and people with poor verbal memory, executive functioning deficits and accompanying neuropsychiatric symptoms are at particularly high risk [11]. Neuropsychiatric symptoms in MCI are common and persistent [12]. Thus one strategy for early diagnosis and intervention is to follow up patients presenting to clinics with MCI: this would also enable clinicians to modify risk factors and treat any neuropsychiatric symptoms.
Raising awareness
Assisting patients and carers to recognise dementia and seek help will equip people to play a more active role in their health care [13], but current evidence suggests that community-based campaigns to raise awareness about seeking help for memory problems are insufficient to promote early assessment and diagnosis of dementia [14]. In the UK, the Alzheimer's Society's 2008 ‘Worried about your memory?’ campaign provided useful information about when to seek help, for example, if your memory (or that of someone you know) is getting worse or impacting on everyday life. Targeting similar information at all adults may improve detection of objective cognitive impairment and common mental disorders. Pre-screening those who are worried about dementia in primary care ensures that specialist memory services are well targeted.
Tackling stigma
Stigma is an important barrier for many in seeking a diagnosis for themselves or their relative [13]. In Japan, a successful campaign to raise public understanding and awareness of dementia included re-labelling dementia from ‘Chiho’ (an untreatable blockage of intellectual activities, a senile insanity) to ‘Ninchisho’ (this dementia is thought to be treatable and possibly preventable with computer games, exercise and cardiovascular health – although there may still be stigma attached to it) [15]. This changed the emphasis from long-term care of those who were not able to have social relationships to community care and inclusion. Stigma may increase social isolation in dementia where people avoid those with the illness. It may also operate within services and institutions, with for example people with dementia excluded from services they may benefit from.
Service configuration
In the remainder of the chapter, we will discuss interventions that are evidence-based and the mismatch between these and the services delivered.
Services for people with dementia and their carers have until recently evolved, influenced by historical, national and local agendas, rather than being actively planned with consideration of the evidence. Different professionals and services between and within countries have offered services ranging from diagnosis with immediate discharge to integrated health and social care with ongoing monitoring and help with changing problems. A number of countries, including Norway, the UK, the Netherlands, France, Switzerland and Japan have now developed national strategies for dementia [15]. In addition, there are guidelines for treatment of dementia in the USA, Canada, Germany, Italy, the Netherlands, Spain and Singapore [16–18]. These strategies and guidelines have a common theme, emphasising the importance of awareness, early diagnosis, information provision and advice for people with dementia and their carers with a model of cooperation between primary and secondary care, along the lines of referral to a memory clinic and community care [15,16,19]. Memory clinics, first developed in the USA, began to spread in the early 1980s. These actively designed services seek to introduce help and services earlier than occurred with traditional service models, where early referral of uncomplicated cases of dementia to secondary care, or indeed early diagnosis, were not encouraged, and diagnosis was more likely to occur at a point of crisis. People with dementia who use home care services were 22% less likely to move to a care home in a US 3-year cohort study [20]. Services now try to ensure people with dementia are cared for at home for as long as possible, both because that is what most people choose for themselves and because of cost.
Receiving a diagnosis
The case for early diagnosis
Most people with dementia and their families wish to know the diagnosis, feel relieved by diagnostic certainty and can access drug, psychological and psychosocial treatment that improve the prognosis, and start to plan and make choices about future care [13,21]. In addition, early diagnosis and intervention in dementia facilitates access to specialist services, support and treatment, is cost-effective [22], and reduces crises and care-home admissions [23].
Diagnostic rates
The majority of people with dementia do not have a formal diagnosis. Only 20–50% of people in developed countries with dementia are diagnosed and many less in the developing world. For example, in India, an estimated 90% of people remain undiagnosed [22]. Extrapolated, these figures imply that nearly 80% of the 36 million people worldwide with dementia are not diagnosed, therefore cannot access information to make choices, and have the treatment, care and support available to people with dementia [22]. The proportion of people diagnosed with AD receiving treatment in 2004 in European countries was estimated to vary from 97% in Greece to 3% in Hungary with a mean rate of 30%. Diagnosis and treatment rates vary hugely within as well as between countries [24].
The difficulties of obtaining a diagnosis
Family carers and people with dementia often experience difficulty in obtaining a diagnosis of dementia for their relative, which can take several years. This can result in increased anxiety and carer burden [13,25–27]. The impact of a dementia diagnosis, how it is made and when it is communicated are important. When people with dementia and their families are supported, there is rarely a catastrophic emotional reaction. Instead, one mostly detects patients and carers experiencing a sense of relief at having an explanation on one hand, but sometimes mixed with shock, anger and grief. Often, these emotions are balanced and then replaced with relief, hope and the feelings of being in control of decisions [21,22,28,29].
Barriers to accessing doctors for the diagnosis
Families report that relatives with memory problems often refuse to consult their physician about their memory and deny problems when seen [13]. Other barriers to seeking help include fear of the diagnosis, concerns about stigma and negative responses from other family members [22]. In our recent study involving family carers of people with dementia in England, once the carer had decided that they should seek help, the first point of contact was usually the primary care physician, often despite the care recipient's opposition. Carers overcame this problem in a variety of ways: going to see the doctor together helped, as did the doctor inviting the patient to an appointment. In some cases, families' strategies included manipulation, albeit benign [13]. Once at the doctor's, carers often described difficulties in obtaining the correct diagnosis, with problems either discounted or attributed incorrectly, or the doctor appearing reluctant to refer to specialist services. The patient's lack of insight often contributed to this and sometimes they remained undiagnosed until their behaviour was very risky. Carers commonly found that confidentiality impeded them from receiving information, but if it was clear the care recipient gave permission, then this improved.
Receiving a diagnosis in primary care
Despite attempts, including financial incentives, to improve early diagnosis and documentation of dementia in primary care, detection remains low even after presentation. This may partly relate to the difficulty of diagnosing early dementia and doctors under- or overestimating the prevalence of dementia. This may lead to missed diagnoses or concerns about the effect that identifying the illness may have on their workload [26,30,31]. GPs know about dementia, but may lack experience and confidence in diagnosing it and informing patients [26,31]. There is some evidence that educational interventions in which primary care doctors set their own objectives may increase detection rates [25,32–34]. Some professionals and relatives are concerned that telling people they have a devastating illness for which there is no cure is stigmatising, unhelpful and may be counterproductive, although most people who opt to protect their family members say they would like to know if they had the illness [35,36].
Inequalities in access to care
Socioeconomic barriers
The Inverse Care Law describes a perverse relationship between need and care so that those who most need medical care because of socio-economic deprivation are least likely to receive it [37]. It follows from this that, paradoxically, higher socio-economic groups who are healthier have greater access to services, including new and expensive drug treatments. There is preliminary evidence from the UK and Sweden that this may apply in dementia, with those from higher socio-economic classes being more likely to be prescribed drug treatment for dementia [38–40].
Minority ethnic status
Minority ethnic people with dementia in the USA, the UK and Australia are referred later in their illness then their white counterparts, when they are more cognitively impaired and commonly in crisis [41,42]. This is especially concerning, as some minority ethnic groups have higher rates of dementia than the indigenous population [43–45]. They are also less likely to be involved in trials of dementia drugs than their white counterparts [41]. Socio-economically disadvantaged older people may face a double jeopardy in accessing mental health, including dementia care [46]. Older minority ethnic people with mental illness have been described as experiencing ‘triple jeopardy’ [47].
Interventions after diagnosis
Information
Information provision alone for people with dementia and their carers does not improve outcomes [39]. When linked with other interventions, such as skills training, telephone support, or providing direct assistance with navigating the medical and social care systems, it can improve neuropsychiatric symptoms and possibly quality of life, although not carer burden [19,48]. Thus, services should provide information alongside other interventions.
Interventions for cognition
Current drug treatments for AD are symptomatic and consist of cholinesterase inhibitors (ChEIs: donepezil, galantamine and rivastigmine) and the N-methyl-D-aspartate (NMDA) inhibitor memantine. ChEIs have a moderate effect on cognition (1·5–2 points on the Mini-Mental State Examination over 6–12 months), with additional short-term (3–6 months) improvement in cognition and global outcome, and some stabilisation of function over this period [4]. Although it was initially thought that ChEIs improved neuropsychiatric symptoms in AD, this has not been confirmed in trials. Memantine improved cognitive performance and function over a 6-month period compared with placebo in those with moderate to severe AD, and there seem to be additive benefits of combining a cholinesterase inhibitor and memantine [4].
Cognitive stimulation therapy is a non-pharmacological treatment that can improve cognition [49]. It is now given as routine care in parts of the UK where, as it can be accessed by people with all types of dementia and those in whom anti-dementia drugs are contraindicated, its availability has extended the proportion of people with a diagnosis of dementia offered an active treatment.
Reducing abuse
One in four older people and one in three with dementia are at risk of abuse, but only a small proportion of this is currently detected [50–52]. Family carers with more anxiety or depressive symptoms are more likely to abuse, and this effect is mediated by the use of dysfunctional coping strategies; over time, without intervention, carer anxiety, depressive symptoms and abusive behaviour increase [53,54], so helping the family carer cope is important for the person with dementia and the carer.
Interventions for family carers
About 40% of family carers for people with dementia have psychological disorders, while others have significant symptoms [55,56]. These reduce carers' quality of life and increase the likelihood of the person with dementia moving to a care home as the carer becomes unable to care. There is excellent research evidence from the USA that six or more sessions of individual behavioural management therapy for family carers centred on the care recipient's behaviour alleviates the carer's depressive symptoms immediately and for up to 32 months, but this has so far not been translated into everyday clinical practice [57]. Teaching caregivers positive coping strategies either individually or in a group also appeared effective in improving caregiver psychological health immediately and for some months afterwards [57]. Overall systematic review finds evidence that individual interventions are more effective than group interventions. We are currently awaiting results of a randomised controlled trial of individual coping interventions in the UK that have been delivered by graduates with a psychology degree rather than clinical psychologists to make them more practical and affordable. In the USA, translation of these effective programmes into community practice has commenced [58]. Education about dementia, group behavioural therapy, respite and supportive therapy do not by themselves improve family carer mental health [57,59].
Interventions for neuropsychiatric symptoms
Clinically significant neuropsychiatric symptoms occur in about one-third of patients with mild dementia, two-thirds with more severe impairment [60–62] and a higher proportion of those in residential care. Agitation is one of the most common symptoms, especially in care homes. It affects nearly half of people with AD [62–64] and generally persists if untreated [64].
Initial interventions
Good clinical practice begins by considering the underlying cause(s) of neuropsychiatric symptoms (e.g. pain, delirium or constipation) and treating these if possible [65,66]. After this psychological and social treatments should be considered. These include avoiding triggers if possible, reducing environmental complexity and distractors like noise, allowing the person with dementia time to do things, educating carers about communication with someone with dementia, explaining to the person with dementia what is happening during tasks that cause agitation, and occupation to prevent agitation resulting from boredom.
Drug treatment
Neuropsychiatric symptoms can be difficult to manage. The potential importance of non-pharmacological approaches has increased due to concerns regarding the undesirable effects of drug treatments for agitation, such as antipsychotics. Initially, evidence indicated that risperidone and olanzapine should not be used for treatment of non-psychotic symptoms in dementia because of increased risk of cerebrovascular adverse events and death. All antipsychotics seem to confer risk, and the increased mortality may be greater with typical than atypical antipsychotics [67,68]. Recent meta-analyses found modest benefits in the treatment of aggression (best evidence for risperidone, then aripiprazole; quetiapine is ineffective) but increased cerebrovascular events and death [69–71]. Therefore, it is recommended that the use of antipsychotic medication for treating agitation or psychosis in people with dementia is limited to those whose behaviour is causing significant distress [72]. The use of both antipsychotics [73] and benzodiazepines [74] in dementia has been associated with increased cognitive decline. In practice, professionals and carers often struggle to implement effective non-pharmacological treatment, and psychotropic drugs are commonly prescribed to manage agitation. Cholinesterase inhibitors seem to be ineffective [75]. In 2009, a UK government-commissioned review found that only 20% of the 180,000 patients with dementia in the UK who were prescribed antipsychotics benefited from them, and antipsychotic over prescribing was linked to 1800 excess deaths a year [76].
Non-pharmacological interventions
Some non-pharmacological treatments reduce neuropsychiatric symptoms [48]. Teaching family carers to modify their interactions with patients has proved effective, with benefits lasting for months [48]. Additionally, eight sessions at home, teaching individual patient/carer dyads to monitor behavioural problems, understand behaviour, improve carer communication, increase pleasant events and enhance carer support was effective at 6 months in improving caregiver mood and care recipient neuropsychiatric symptoms [77]. Behavioural management techniques were particularly effective for depressive symptoms with lasting effects [48]. Training staff in 24-hour care settings about dementia, respecting the person as an individual, and communication and behavioural skills training are effective in reducing mood disturbance, agitation and aggression immediately and over months [78]. This type of intervention, particularly when coupled with increasing pleasant events, may also improve care homes residents' quality of life and theoretically decrease abusive behaviour, as we discuss later, when considering care homes [79]. Music therapy, multi-sensory therapy and possibly sensory stimulation were useful during the treatment session but had no longer-term effects [48].
Social care including care homes
People with dementia need help with their daily living activities, enabling them to live safely and with dignity. This is usually provided at home, mainly by family or friends but also by paid carers, particularly as the illness progresses. Thus, personal care, help with shopping, cooking and finances, as well as assistive technology that detects open doors, lack of movement, gas, water, smoke and falls alarms, prolong the time someone can live at home. Day centres and clubs provide social and cognitive stimulation.
In the UK, a 2011 Equality and Human Rights Commission report into home care by paid carers found evidence of ‘systematic failure’, physical abuse, neglect, disregard for privacy and dignity and ‘dehumanising’ care. A high proportion of people receiving home care have dementia, as do most older people in care homes, but most paid carers have little or no training in the psychological care of people with dementia.
Staff often lack understanding of dementia and the associated behavioural difficulties, and relatives may be dissatisfied with staff [80]. Residents want choice, for example, about what, when or where to eat and the possibility of privacy [80,81]. Dementia-specific training and education of staff in all long-term care settings, including induction, should address the management of problem behaviours. This has the potential to improve staff fulfilment and relatives' satisfaction.
There are currently no evidence-based interventions to prevent abuse in care homes, but training in person-centred care and alleviating neuropsychiatric symptoms seems an obvious place to start [78].
Care homes and end of life
Most people with dementia are resident in care homes when they die [82]. People with other terminal conditions, such as cancer or severe cardiovascular disease, are also more likely to live in nursing homes if they have dementia. Dementia is associated with poor nutrition, infections, skin breakdowns, dehydration and recurrent pneumonia [83]. Many staff favour life-prolonging treatments for care home residents as they do not perceive dementia as a terminal illness [84]. Staff often do not talk to relatives about death in advance or explain directly when it is imminent [85,86]. Paid carers in homes may often differ culturally and ethnically from those for whom they care, in US and UK care homes at least, and be focused on preserving life with less use of advance directives to limit treatment [87,88]. This all may lead to inappropriate, aggressive and distressing treatments that fail to prolong life but extend discomfort [89]. Internationally, there is a lack of access to skilled, good quality, basic care or palliative care for people with dementia at the end of their life [89–91]. A recent systematic review found limited evidence that making advanced care plans affected the treatment people with dementia received and concluded it may be too late to discuss them by the time people with dementia are resident in nursing homes settings [92]. Until recently, there were no studies that showed evidence of improved end of life care for patients with dementia, family satisfaction or decreased inappropriate interventions, including hospitalisations, just before expected death [93]. Despite over a decade of research, care and treatment guidelines for people with dementia at the end of life are mainly consensus based and more work is needed [93]. In the USA, one group found educating nursing staff about end of life care in dementia improved family satisfaction [94]. Within the UK, our group have found preliminary results suggesting that tackling attitudes and fears of care home staff may decrease inappropriate hospitalisation and increase family satisfaction [85,95].
Hospital care for people with dementia
Many people in hospital have dementia [96], and both older and younger people with dementia tend to have longer admissions than those without dementia [96,97] and are more likely to die in hospital [98]. In particular, care home residents with advanced dementia are often transferred to hospital at the end of their lives, when this may not be in their best interest or in line with their wishes [99,100]. Hospitalisation may be especially difficult for patients with advanced dementia, as they frequently experience uncomfortable interventions that lack demonstrable benefit and do not improve survival times [99,101].
Conclusions
The advantages of early and active treatment of dementia are now clear and include, but are not limited to, planning and choices for maximising independence and living at home, as well as symptomatic treatments for dementia and non-pharmacological interventions for dementia and associated neuropsychiatric symptoms. This requires dedicated services focused on early diagnosis and treatment that enable people with dementia to stay living well at home as long as possible and also enable their family carers to cope. Trials of disease-modifying anti-dementia drugs are underway. If successful, this will probably lead to further, radical changes in service configuration, possibly with screening programmes focused on the identification of pre-dementia syndromes and home treatments. Most people with dementia in the developed world do not receive a diagnosis and more live in the developing world with little access to dementia diagnosis or these recent advances in treatment: addressing this issue is a major global challenge.
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