World Alzheimer Report 2009 Alzheimer’s Disease International World Alzheimer Report 2009 Editors Prof Martin Prince, Institute of Psychiatry, King’s College London (chapter 1–2) Mr Jim Jackson (chapter 3–4) Scientific Group, Institute of Psychiatry, King’s College London Dr Cleusa P Ferri Ms Renata Sousa Dr Emiliano Albanese Mr Wagner S Ribeiro Dr Mina Honyashiki ADI Advocacy Working Group Daisy Acosta (Dominican Republic) Marco Blom (Netherlands) Scott Dudgeon (Canada) Niles Frantz (USA) Angela Geiger (USA) Sabine Jansen (Germany) Andrew Ketteringham (UK) Lindsay Kinnaird (Scotland) Birgitta Martensson (Switzerland) Glenn Rees (Australia) Frank Schaper (Australia) Mike Splaine (USA) Tami Tamitegama (Sri Lanka) Krister Westerlund (Sweden) Marc Wortmann (ADI) ADI would like to thank those who contributed financially: Vradenburg Foundation Geoffrey Beene Foundation – www.geoffreybeene.com/alzheimers.html Alzheimer’s Association – www.alz.org Alzheimer’s Australia – www.alzheimers.org.au Alzheimer’s Australia WA – www.alzheimers.asn.au Alzheimer Scotland – www.alzscot.org Alzheimer’s Society – www.alzheimers.org.uk Association Alzheimer Suisse – www.alz.ch Alzheimerföreningen i Sverige – www.alzheimerforeningen.se Deutsche Alzheimer Gesellschaft – www.deutsche-alzheimer.de Stichting Alzheimer Nederland – www.alzheimer-nederland.nl Photos: Cathy Greenblat – www.cathygreenblat.com Design: Julian Howell Cover image This participant in the ARDSI day care centre in Cochin, India, was diagnosed with dementia at age 68 and was initially taken care of at home by family and domestic servants. Her aggressive behaviour became problematic, and she was enrolled in the daycare centre. At the centre she chats, tells stories and benefits from trained staff members and volunteers, such as Geetha, who are understanding and kind. 1 Alzheimer’s diseAse internAtionAl World Alzheimer report 2009 2 Preface Demographic ageing is a worldwide process that shows the successes of improved healthcare over the last century. Many are now living longer and healthier lives and so the world population has a greater proportion of older people. We all agree that ageing brings some challenges as well. Many international meetings have touched on this issue and adopted statements, for instance the Madrid International Plan of Action on Ageing from 2002. A clearly negative effect of ageing is the significant increase in the number of people with Alzheimer’s disease and related dementias. Alzheimer’s Disease International (ADI) has commissioned this report in order to support Alzheimer associations around the world in working with their governments on strategies to improve the lives of people with dementia and their carers, and to increase research efforts. To encourage the development of those national strategies, it is very important that the World Health Organization makes dementia a global health priority. If a country is in the business of supporting or spurring medical research, its portfolio ought to include funding Alzheimer’s disease research in a proportion that matches its burden to the country. To make clear why this is important and why it is urgent, we wanted to put together updated information on the prevalence and impact of the disease and offer a framework for solutions. Some recent experiences have been very encouraging. In 2004, Australia was the first country to make dementia a national health priority, and national dementia strategies have been launched in France, South Korea, England, Norway and the Netherlands. We also want to highlight a very recent initiative from the European Commission as the first international action plan on dementia. This report gives an overview and analysis of the situation, based on the currently available research data. The 2009 World Alzheimer Report confirms that there are many millions of people living with Alzheimer’s or another dementia. This report and all earlier studies indicate that the current number of people living with dementia is expected to grow at an alarming rate. ADI believes this report provides the best available estimates of dementia prevalence at a worldwide level. The scientists working on behalf of ADI used meta-analyses that produce estimates for all the world regions in the way that is explained in the full version of the report. ADI does not present estimates for individual countries and understands that different studies may be preferred to determine national prevalence figures. ADI encourages national Alzheimer prevalence research in individual countries; the use of those local results may be more accurate. It is clear that more research on the prevalence and impact of the disease is needed. ADI will therefore carry out follow up reports, beginning with economic data in 2010. We hope this will stimulate all those involved: governments, policy makers, healthcare professionals and Alzheimer associations, to work together on more and better solutions for dementia. With a new case of dementia in the world every seven seconds there is no time to lose. Daisy Acosta Marc Wortmann Chairman Executive Director Alzheimer’s Disease International Alzheimer’s Disease International 3 Contents Key points 5 What is dementia? 13 Definitions, pathology and clinical features 14 Awareness 16 Aetiology (risk factors) 17 The course and outcome of dementia 18 The management of dementia 19 Structure of the report 20 References 21 Chapter 1 The global prevalence of dementia 25 Background 26 Methods 28 Results 30 Conclusions and recommendations 40 References 44 Chapter 2 The impact of dementia 47 The impact of dementia 48 Disability, dependency and mortality: 1 The Global Burden of Disease report 49 2 Other studies of disability and dependence 51 3 Adding years to life and life to years 53 The family and other informal carers 54 The cost of dementia 60 Summary and conclusion 63 References 65 Chapter 3 From recognition to action 67 From recognition to action 68 Global Alzheimer’s Disease Charter 68 Context 69 Dementia and services 71 Awareness raising and information 72 Capacity building 73 Quality 74 Risk reduction 74 Service development 75 Our vision for the future 76 Act now 77 References 78 Chapter 4 Recommendations 81 Appendices Appendix 1 G lobal Burden of Disease (GBD) regions 84 Appendix 2 Alzheimer associations’ annual research expenditure budgets 86 Appendix 3 Comparison of the English and French dementia plans 87 Appendix 4 Comparison of dementia plans in Australia and South Korea 88 Glossary 89 Alzheimer’s Disease International 92 4 WORLD ALzHEIMER REPORT 2009 · ALzHEIMER’S DISEASE INTERNATIONAL 5 World Alzheimer report Key points Jacqueline in a reminiscence Background: What is dementia? 6 therapy session, 2008, Nice, France. Reminiscence therapy is based on Chapter 1: The global prevalence of dementia  8 the evocation of older memories and autobiographies. The sharing of these Chapter 2: The impact of dementia  9 memories, sometimes with the aid of Chapter 3: From recognition to action  10 photographs and other objects, in a group helps to promote social exchanges, Chapter 4: Recommendations  11 and through this communication the quality of life of people with dementia and family carers is improved. 6 KEy POINTS BACkground What is dementia? 1 Dementia is a syndrome due to disease of the brain, usually chronic, characterised by a progressive, global deterioration in intellect including memory, learning, orientation, language, comprehension and judgement. 2 While dementia mainly affects older people, there is growing awareness of cases that start before the age of 65 years. After 65, the prevalence (the proportion of people with the condition) doubles with every five-year increase in age. Dementia is one of the major causes of disability in later life. 3 Dementia syndrome is linked to a large number of underlying brain pathologies. Alzheimer’s disease, vascular dementia, dementia with Lewy bodies and frontotemporal dementia are the most common. 4 The boundaries between these subtypes are indistinct, and mixed forms may be the norm. The pathology (the changes that happen in the brain) with Alzheimer’s disease develops over a long period of time, and the relationship between the severity of the pathology and the presence (or absence) of dementia syndrome is not clear. Other conditions that the person has, particularly cerebrovascular disease (disease of the blood vessels supplying the brain) may be important. 5 Clinicians focus their diagnostic assessments on impairment in memory and other cognitive functions, and loss of independent living skills. For carers, it is the behavioural and psychological symptoms (BPSD) linked to dementia, typically occurring later in the course of the disease, that are most relevant and have most impact on their quality of life. Behavioural and psychological symptoms are an important cause of strain on carers, and a common reason for institutionalisation as the family’s coping reserves become exhausted. 6 Problem behaviours include agitation, aggression, calling out, sleep disturbance, wandering and apathy. Around one quarter of people with dementia exhibit apathy and a similar proportion show occasional signs of aggression. Common psychological symptoms include anxiety, depression, delusions and hallucinations. Around 25-40% have diagnosable affective disorder, and at least 10% have psychotic symptoms. The frequency and profile of these symptoms seems to be similar between developed and developing country settings. 7 Awareness of dementia, as an organic brain condition, is inadequate worldwide. The problem is stigmatised, so it is not discussed. If it is acknowledged then it is often dismissed as a normal part of ageing, or viewed as a problem for which nothing can be done. These three factors conspire to create a culture in which help is neither sought nor offered. Alzheimer’s Disease International has identified raising awareness of dementia among the general population and health workers as a global priority. 8 The main risk factor for most forms of dementia is advanced age, with prevalence roughly doubling every five years over the age of 65. Onset before this age is relatively uncommon and, in the case of Alzheimer’s disease, often suggests a genetic cause. Single gene mutations at one of three loci (beta amyloid precursor protein, presenilin1 and presenilin2) account for many of these cases. WORLD ALzHEIMER REPORT 2009 · ALzHEIMER’S DISEASE INTERNATIONAL 7 9 For late-onset Alzheimer’s disease both environmental (lifestyle) and genetic factors are important. A common genetic polymorphism, the apolipoprotein E (apoE) gene e4 allele, greatly increases risk of going on to develop dementia. Epidemiological studies partly support associations between limited education, head injury and depression, and both Alzheimer’s disease and dementia, but it is not clear if these are causal. 10 The evidence for a causal role for cardiovascular risk factors and cardiovascular disease in dementia and Alzheimer’s disease is very strong. Those with high cardiovascular risk scores (incorporating hypertension, diabetes, high cholesterol and smoking) have an increased risk for dementia incidence whether exposure is measured in midlife or a few years before dementia onset. Atherosclerosis (hardening of the arteries) and Alzheimer’s disease may be linked disease processes with common underlying factors. 11 Unfortunately, attempts to modify cardiovascular risk exposure, by using cholesterol lowering drugs (statins) and antihypertensives, have so far been unsuccessful in reducing the incidence of dementia. This may well have been a case of ‘too little, too late’. Hormone replacement therapy had an adverse effect, and a trial of non-steroidal anti-inflammatory drugs (NSAIDs) had to be stopped because of concerns regarding adverse effects. 12 Effective primary prevention of dementia is a realistic aspiration. However, much more research is needed to understand better how and when lifestyle factors influence the risk for developing dementia, informing more effective prevention strategies. 13 The principal goals for dementia care are: • early diagnosis • optimising physical health, cognition, activity and well-being • detecting and treating behavioural and psychological symptoms • providing information and long-term support to carers The person with dementia needs to be treated at all times with patience and respect for their dignity and personhood. The carer needs support and understanding – their needs should also be determined and attended to. Both parties need to be supported to continue for as long as practicable with their lives and in their own communities – living well with dementia. 14 Currently, there are no treatments available that cure, or even alter the progressive course of dementia, although numerous new therapies are being investigated in various stages of clinical trials. When effective new therapies are developed, there will be enormous ethical and practical challenges with respect to making such treatments widely and equitably available, particularly to the two-thirds of people with dementia who live in low and middle income countries. 15 Partially effective treatments are available for most core symptoms of dementia. These treatments are symptomatic, that is they can improve a particular symptom, but do not alter the progressive course of the disease. Importantly, psychological and psychosocial therapies (sometimes referred to as ‘non- pharmacological’ interventions) may be as effective as drugs in many areas, but have been less extensively researched, and much less effectively promoted. The research evidence on dementia care comes, overwhelmingly, from high income countries. 8 KEy POINTS 16 People with dementia and their carers can be educated about dementia, countering lack of understanding and awareness about the nature of the problems faced. They can also be trained to better manage most of the common behavioural symptoms, in such a way that their frequency or the strain experienced by the carer is reduced. Above all, the person with dementia and the family carers need to be supported over the longer term. ChAPter 1 the global prevalence of dementia 1 We have conducted a new systematic review of the global prevalence of dementia, identifying 147 studies in 21 Global Burden of Disease (GBD) world regions. 2 We estimate 35.6 million people with dementia in 2010, the numbers nearly doubling every 20 years, to 65.7 million in 2030 and 115.4 million in 2050. 3 Previous ADI estimates, published in The Lancet in 2005, were based on expert consensus. A large number of new studies, particularly from low and middle income countries, have enabled us now to conduct quantitative meta-analyses in 11 of the 21 GBD world regions. Our new estimates are 10% higher. We believe these to be more robust and valid figures. 4 When compared with our earlier Lancet/ADI consensus estimates those for three regions were higher - Western Europe (7.29% vs. 5.92%), South Asia (5.65% vs. 3.40%) and Latin America (8.50% vs. 7.25%). Those for East Asia were lower (4.98% vs. 6.46%). 5 58% of all people with dementia worldwide live in low and middle income countries, rising to 71% by 2050. 6 Proportionate increases over the next twenty years in the number of people with dementia will be much steeper in low and middle income countries compared with high income countries. We forecast a 40% increase in numbers in Europe, 63% in North America, 77% in the southern Latin American cone and 89% in the developed Asia Pacific countries. These figures are to be compared with 117% growth in East Asia, 107% in South Asia, 134-146% in the rest of Latin America, and 125% in North Africa and the Middle East. 7 A recent marked increase in the number of studies from low and middle income countries has been accompanied by a sharp decline in prevalence research in high income countries. In many high income countries, the evidence-base is fast becoming out of date and more studies are needed. 8 The quality of many of the studies was relatively poor, although this is steadily improving. A particular concern is the 49% of all studies that used, but misapplied, a research design with two or more phases. This error is likely to lead to an underestimate of true prevalence. However, for two phase studies in general, a higher prevalence was observed, probably because of loss to follow- up in the interval between the screening and definitive diagnostic assessments. 57% of all studies lacked a properly comprehensive dementia diagnostic work up.