Global Research for Global Action

1. Global Research for Global Action Prof. Martin Prince Centre for Global Mental Health King’s College London 1066drg@iop.kcl.ac.uk

2. Where do older people live? In 1950, just over half of the world’s older population lived in less developed regions By 2050, the proportion will be 80%

3. Discourses around global ageing • “Ageing is a development issue. Healthy older persons are a resource for their families, their communities and the economy” (WHO Brasilia Declaration on Ageing, 1996) • “Global aging is the dominant threat to global economic stability - without sweeping changes to age-related public spending, sovereign debt will soon become unsustainable” (Standard and Poor’s – Global Aging 2010: an irreversible truth)

4. Ageing and public health • What is different about old age? • Degenerative disorders – stroke, dementia • Complex comorbidities • Disability and needs for care • Fragile income security and social protection • Why do older people matter? • Account for the majority of disease burden and cost (health and societal) • Underserved • Major Challenges? • Access to effective, age-appropriate healthcare • Diminishing/ meeting long-term care needs

5. 10/66 DRG research agenda • Pilot studies (1999-2002) • Development and validation of culture and education-fair dementia diagnosis • Preliminary data on care arrangements • Population surveys – baseline phase (2003-2009) • Prevalence of dementia and other chronic diseases • Impact: disability, dependency, economic cost • Access to services • Nested RCT of ‘Helping carers to care’ caregiver intervention • Incidence phase (2008-2010) • Incidence (dementia, stroke, mortality) • Risk factors • Course and outcome of dementia/ Mild Cognitive Impairment

6. 10/66 DRG Publications by topic

7. www.alz.co.uk/1066

8. Prevalence and ‘numbers’

9. Developed/ developing country differences

10. Prevalence studies worldwide - 2004

11. Prevalence of 10/66 and DSM IV Dementia So is it 8-10% or <1%? Rodriguez et al for 10/66, Lancet 2008

12. 10/66 algorithm validity • Cross-cultural development, calibration and validation (Prince et al Lancet 2003) • In Cuba, better validity than DSM-IV against local clinician diagnosis (Prince et al, BMC Public Health 2008) • Strong predictive validity in Chennai, India after three year follow-up (Jotheeswaran et al, ADAD 2010)

13. Needs for care at baseline and follow-up – 10/66 Dementia cases

14. Incidence phase (n=13,000) • Sites • Cuba, DR, Venezuela, Mexico, Peru, China • Outcomes • Dementia, Stroke, Dependence, Mortality • Aetiology • Cardiovascular risk (BP/ smoking/ fasting glucose/ cholesterol) • Diet (anaemia, B12, folate, subclinical hypothyrodism, albumin, anthropometry) • Developmental factors • APOE and other genetic factors

15. Comparing incidence according to 10/66 and DSM-IV criteria

16. Directly standardised incidence rates (age-specific person years - EURODEM incidence pooled analysis)

17. Mortality among people with dementia, by site

18. Launched World Alzheimer Day, September 21st, New York, 2009 • Prevalence • Numbers • Impact • Action Prof Martin Prince Institute of Psychiatry King’s College London, UK

19. Prevalence of dementia, by region

20. Increase in numbers of people with dementia, by development status ADI World Alzheimer Report 2009, Eds Prince & Jackson

21. Promoting lifelong physical health – opportunities for prevention • Early life • Education (?nutrition, growth, neurodevelopment) • Mid to late-life • Cardiovascular disease and its risk factors, mental stimulation, physical activity, depression • Late-life • ? Undernutrition (micronutrient deficiency and anaemia)

22. PRs* for association between skull circumference (largest vs. smallest quarters) and 10/66 dementia Cuba DR Peru U Peru R Venezuela Mexico U Mexico R China U China R India U India R 0.75 (0.63-0.89) * Controlling for age, gender, education and family history of dementia

23. Sociodemographic and socioeconomic/ cognitive reserve risk factors for incident 10/66 dementia * Hazard ratio from proportional hazards competing risk regression

24. An index of the quality of public healthcare – detection and control of hypertension Detection Control Detected and controlled Good Peru (rural) 97% 93% 90% Peru (urban) 93% 78% 73% Puerto Rico 91% 65% 58% Moderate Mexico (urban) 80% 55% 44% Venezuela 83% 50% 42% DR 82% 48% 39% Mexico (rural) 73% 52% 38% China (urban) 79% 45% 36% Poor S Africa 82% 32% 24% Cuba 70% 34% 24% India (rural) 43% 43% 18% India (urban) 44% 37% 16% China (rural) 51% 5% 3% Prince et al, Journal of Hypertension, 2011

25. Undernutrition – associations with mortality, incident dependence and dementia 1 – controlling for age, sex and education 2 – controlling for age, sex, education, depression, dementia, stroke and number of physical impairments 3 – controlling for age, sex, education and dementia severity

26. Numbersof prevalence studies by year of data collection

27. World Alzheimer Day, September 21st, London, 2010 • Global Societal Economic cost • $604bn • 1% of GDP • Equivalent to world’s 18th largest economy • Larger than the annual turnover of Walmart Anders Wimo Karolinska Institute, Sweden Martin Prince King’s College London, UK

28. Relative impact of different health conditions, across 10/66 centres, on disability and dependence Sousa et al, Lancet, 2009; BMC Geriatrics 2010

29. Prioritisation – research into chronic diseases

30. How do we prioritise chronic diseases in high income countries?

31. Dementia UK Results Economic cost of dementia 683,000 people with dementia 1.7 million by 2050 Total costs £17 billion Costs per person Average £25,472 Mild dementia (community) £14,540 Moderate dementia (Community) £20,355 People in care homes £31,263

32. Distribution of costs by sector

33. Long term care and social protection for older people

34. Long-term care policy WHO report (2002) • each community should determine • the types and levels of assistance needed by older people and their carers • the eligibility for and financing of long-term care support. • In practice, governments • Do not provide or finance long-term care • Lack comprehensive policies and plans

35. Social protection legislation in India “Old age has become a major social challenge and there is need to give more attention to care and protection of older persons. Many older persons . . . are now forced to spend their twilight years all alone and are exposed to emotional neglect and lack of physical and financial support”. Government of India (2007), “With the joint family system withering away, the elderly are being abandoned. This has been done deliberately as they (the children) have a lot of resources which the old people do not have.” Social Justice Minister, Meira Kumar

36. Social protection for people with dementia in India (10/66 DRG)

37. More carrot, less stick…. • Universal non-means tested ‘social’ pensions • Access to disability benefits for people with dementia • Caregiver benefits • Incentivise family care • Provide basic information, training and support for caregivers in the community

38. Intervention - the problem • Dementia is a hidden problem (demand) • Little awareness • Not medicalised • People do not seek help • Health services do not meet the needs of older people (supply) • Few specialists • Clinic based service - no home assessment/ care • No continuing care • ‘Out of pocket’ expenses Prince et al, World Psychiatry, 2007

39. Equity in delivery of healthcare - predictors of health service use in the last three months Prevalence of service use varied between 6% and 82% by site Health and demographic variables did not explain this variation ? Out-of-pocket expenses at ecological (health system) level Albanese et al, BMC Health Services Research 2011

40. Medical help-seeking by people with dementia and their carers

41. Components of care e.g. …. Helping Carers to Care • Use what there is • Extended role for existing outreach services • Families • ‘Low level’ interventions • 5 sessions in 8 weeks • Increase awareness and understanding • Mobilise support networks, improve family cohesion • Basic management strategies in the home Dias et al PLOS One, Guerra et al Rev Braz Psych; Gavrilova et al IJGP

42. Packages of care for dementia • Casefinding • Brief diagnostic screening assessment • Making the diagnosis well – information and support • Attention to physical comorbidity • Carer interventions (carer strain) • Cognitive stimulation • Non-pharmacological interventions for behavioural and psychological symptoms Prince et al, PLOS Medicine 2010 Dua et al, PLOS Medicine 2011

43. VERTICAL (HEALTH CONDITIONS) Dementia Stroke Parkinson’s disease Depression Arthritis and other limb conditions Anaemia HORIZONTAL (IMPAIRMENTS) Communication Disorientation Behaviour disturbance Sleep disturbance Immobility Incontinence Nutrition/ Hydration Caregiver knowledge Caregiver strain Horizontal vs. vertical approachers

44. Conclusions • The world is facing a new epidemic of unprecedented proportions • Its effects will be felt particularly in low and middle income countries - currently least prepared to meet the challenge • Societal costs will rise inexorably, driven by the increasing need for long term care • Time for action • Scalable models of evidence-based clinical care to close the treatment gap • Progressive fiscal and social policy – long-term care • Prevention • Continuous monitoring of key indicators

45. Alzheimer’s Disease International The 10/66 Dementia Research Group in 12 countries: Juan Llibre Rodriguez, Daisy Acosta, Yueqin Huang, Aquiles Salas, Ana Luisa Sosa, Mariella Guerra, Ivonne Jimenez, JD Williams, KS Jacob, Richard Uwakwe, Malan Heyns Our funders The Wellcome Trust US Alzheimer’s Association World Health Organisation The London team Cleusa Ferri, Renata Sousa, Emiliano Albanese, Michael Dewey, Rob Stewart www.alz.co.uk/1066 1066drg@iop.kcl.ac.uk My thanks to