Cover page

Table of Contents

Title page

Copyright page




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


Chapter 2: The historical development and state of the art approach to design and delivery of dementia care services


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


What is necessary for good service delivery?

International perspectives

Chapter 4: Services for people with incipient dementia


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


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


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


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



Section 3: External drivers of service development

Chapter 8: How to get results in public policy for Alzheimer's and dementia services


Strategic objective and arguments

The economic argument

Organisational infrastructure and mobilisation


Finally …

Where does responsibility for dementia rest?

Much has been achieved

Recent developments

A window of opportunity?


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?


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


Chapter 10: Health economics, healthcare funding and service evaluation: International and Australian perspectives


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


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


Demographic and health facts

Clinical practice

Complementary activities


Chapter 12: Australasia

Epidemiology and burden of dementia in China

Ageing service policies

Guidelines on dementia care

Service resources for dementia care

Future perspectives


Need for services

Health services in India

Dementia care services: The current situation

Clinic-based services

People's participation in dementia care

Future directions


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



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


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


Special accommodation

Continuity of the care pathway

Dementia centre ()

Future challenges


Memory clinics in the UK: Background

Memory services: The current position


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


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



Chapter 17: The role of assistive technology in the care of people with dementia


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


Title page


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


1. University of Glasgow (2008) Guthrie trust witness seminar on old age psychiatry. Available at: (last accessed on 27 March 2013).

2. Goffman E (1961) Asylums. New York: Doubleday.


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


1Julian C Hughes. (2011) Thinking through Dementia. New York: Oxford University Press.


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

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].