1. ADI’s 10/66 Dementia Research Group The next ten years or What’s the message? Prof. Martin Prince Centre for Public Mental Health King’s College London For the 10/66 Dementia Research Group 1066drg@iop.kcl.ac.uk

2. “A Memorable History of England, comprising all the parts you can remember, including 103 Good Things, 5 Bad Kings and 2 Genuine Dates”

3. Timelines Pilot studies (1999-2002) Population surveys – baseline phase –First group (2003-2006) –Second group (2006-2010) Incidence phase (2008-2010)

4. Research agenda Pilot studies –Development and validation of culture and education-fair dementia diagnosis –Preliminary data on care arrangements Population surveys – baseline phase –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 –Incidence (dementia, stroke, mortality) –Aetiology –Course and outcome of dementia/ MCI

5. 38 publications –Methods 7 –Validation7 –Case-finding3 –Prevalence6 –Aetiology1 –Caregiving7 –Intervention2 –Health care/ health policy4 –Other chronic diseases1

6. Capacity building Juan Llibre de Rodriguez CubaModelling dementia prevalence Mariella GuerraPeruLate-life depression Ana Luisa SosaMexicoMCI/ subjective memory impairment Zhaorui LiuChinaEconomic cost of dementia Renata SousaBrazil/ UKDisability and dependency AT JotheeswaranIndiaCourse and outcome of dementia/ predictive validity

7. www.alz.co.uk/1066

8. What’s the message? 1 Prevalence and ‘numbers’

9. The evidence base in 2004

10. ADI’s consensus estimates 24.4 42.7 82.0 millions Ferri et al, Lancet 2005

11. Increases – numbers of people with dementia (2000 to 2020) millions

12. Prevalence studies worldwide

13. The prevalence of 10/66 dementia

14. Prevalence of 10/66 and DSM IV Dementia Rodriguez et al, Lancet 2008

15. DSM IV prevalence, compared with EURODEM Latin America (urban) x0.80 Latin America (rural) x0.27 China (urban)x0.57 China (rural)x0.56 India (urban)x0.22 India (rural)x0.18 *Standardised morbidity ratios, standardised for age and gender Rodriguez et al, Lancet 2008

16. Culture and education fair dementia diagnosis

17.  In Cuba, all participants were interviewed by polyclinic psychiatrists and physicians  Survey DSM-IV algorithm and the 10/66 dementia diagnoses were validated against local clinician diagnosis RESULTS Agreement with the clinician diagnosis was better for 10/66 dementia than for the DSM-IV computerized algorithm DSM-IV had low sensitivity, particularly for mild to moderate cases Clinically relevant dementia may be prevalent beyond the confines of the narrowly defined DSM-IV criteria 10/66 DSM-IV Kappa0.79 (0.74-0.83)0.63 (0.56-0.69) Sensitivity93.2%57.8% Specificity96.8%98.3% Cuban 10/66 algorithm validation study results Prince et al. BMC Public Health 2008,8:219

18. So, is it <1% or 8 to10% ? Rodriguez et al, Lancet 2008

19. Predictive validity of 10/66 dementia diagnosis – Chennai, India; 3 year follow-up Three times higher mortality Cognitive deterioration Increase in disability Progression of needs for care –20% at baseline –88% at follow-up

20. Survival by cognitive status – Chennai, India; 3 year follow-up Cognitively normal MCI Mild dementia Moderate/ severe dementia Follow up time in days

21. The predictive validity of the 10/66 Dementia Diagnosis – Chennai, India; 3 year follow-up MCI categories Dementia Change in cognitive function Change in disability

22. How might the new 10/66 data have affected the ADI consensus prevalence estimates? Latin America (urban) x1.16 Latin America (rural) x0.97 China (urban)x1.02 China (rural)x1.02 India (urban)x2.78 India (rural)x3.58 *Standardised for age ADI consensus is an underestimate

23. Revised Global Burden of Disease estimates 2008-2011 21 world regions Prevalence –Three health states – mild/ moderate/ severe –Disability weights Incidence Mortality ? Association with falls and fractures DISMOD modeling to generate DALYs No age weighting or future discounting?

24. Inclusion/ exclusion criteria for prevalence studies Inclusion criteria –Studies of dementia prevalence –DSM-IV or ICD-10 or similar –Population-based (Community and community + institutional populations) Exclusion criteria –Dementia subtypes only –Follow-up in cohort studies with no reenumeration –Ascertainment on service contact only

25. Literature search - prevalence ASIAnAMERICASnHEUROPENS Asia Pacific High income 26North America16Europe West69 Asia Central0Caribbean2Europe Central8 Asia East37LA Andean1Europe East1 Asia South7LA Central4 Asia SE6LA South2AFRICA Oceania1LA Tropical2North Africa/ Middle East4 Australasia5SSA Central0 XSSA East0 SSA South1 SSA West2

26. USA - eligible studies StudyLocationWBHANSIncl.? Schoenberg 1985Copiah County, MississippiXX √ Pfeffer 1987South CaliforniaX √ Folstein 1991East Baltimore, MarylandXXX Heyman 1991Piedmont, N CarolinaXXX Hendrie 1995Indianapolis, IndianaXX Graves 1996King County, WashingtonX √ Fillenbaum 1998Piedmont, N CarolinaXX √ Gurland 1999Manhattan, NYXXXX Breitner 1999Cache County, UtahX √ Demirovic 2003Dade County, FloridaXXXX Hann 2003Sacramento, CaliforniaX √ Plassman 2007ADAMS HRS (National)X √

27. Prevalence by age, USA - male White Black Hispanic Asian Did not sample by race Boston and Chicago (AD) HRS/ ADAMS

28. Comparison with UK/ Europe – much less heterogeneity

29. US draft GBD prevalence estimates

30. Standardised prevalence (to US national population 2010) East Boston (Evans)14.4%5.79m Chicago (Hebert)15.5%6.23m US ADAMS HRS (NB - 71 and over) 13.8%3.86m + Lancet ADI (AMRO A)8.6%3.45m Draft GBD US meta- analysis 8.9%3.57m Canadian Study of Health and Ageing 9.7%3.93m EURODEM (Lobo)6.9%2.78 m

31. Conclusions Likely figures for numbers of cases of late onset dementia in the USA are 3.5-4.0 million –much heterogeneity in estimates –small number of studies relative to size and diversity of population Need for more descriptive research –Nationally representative samples –Monitoring trends in prevalence and incidence health service utilisation institutionalisation informal care cost

32. What is the message? 2 The impact of dementia

33. The epidemiology of dependency in the Dominican Republic Dependency is a neglected public health topic – first report from a low or middle income country 7.1% of participants required much care and a further 4.7% required at least some care. The prevalence of dependency increased sharply with increasing age. Dependency among older people is nearly as prevalent in Dominican Republic as in developed western settings. Dependent older people were less likely than others to have a pension and much less likely to have paid work, but no more likely to benefit from financial support from their family. Dependency was strongly associated with comorbidity between cognitive, psychological and physical health problems Dementia made the strongest independent contribution. Acosta et al, BMC Public Health 2008

34. The independent impact of dementia, across centres, on dependency (needs for care) 1 4.5 10 20

35. The relative impact of different health conditions, across centres, on dependency (needs for care) Health condition/ impairmentMeta-analysed relative risk for association with dependency Mean population attributable fraction (SD) 1. Dementia4.5 (4.0-5.1)36.0% (11.0%) 2. Limb paralysis/ weakness2.8 (2.4-3.2)11.9% (13.2) 3. Stroke1.8 (1.6-2.1)8.7% (4.1) 4. Hypertension0.9 (0.8-1.0)6.6% (9.2) 5. Depression1.7 (1.5-2.0)6.5% (5.0) 6. Eye problems1.2 (1.1-1.3)5.4% (5.0) 7. Gastrointestinal problems1.1 (1.0-1.3)3.3% (5.3) 8. Arthritis1.1 (1.0-1.3)2.6% (2.5) 9. Hearing problems1.1 (0.9-1.2)1.4% (1.7) 10. Chronic Obstructive Pulmonary disease1.1 (0.9-1.3)0.8% (1.6) 11. Ischaemic heart disease1.0 (0.9-1.2)0.5% (1.0) 12. Skin diseases1.1 (0.9-1.3)0.4% (1.2)

36. Burden of disability and research effort Cancer Heart disease Arthritis Stroke Dementia Correlation = 0.99

37. Dona Angela Aged 108 years!!

38. Some blue skies thinking….

39. What is the message? 3 Meeting the need – social protection

40. Income support from family, and government or occupational pension (% in receipt of income from those sources)

42. Social protection – (un)availability of children for support Migration Infertility

43. Prevalence of food insecurity

44. PRs* for association between food insecurity and ICD 10 depressive episode * Controlling for age, gender, education, assets, pension, past history of depression, physical illness, stroke and dementia Cuba DR Peru U Peru R Venezuela Mexico U Mexico R India U India R 1.49 (1.26-1.77)

45. What is the message? 4 Meeting the need – health care

46. PRs* for association between number of physical illnesses and use of any medical service * Controlling for age, gender, education, assets, dementia and depression

47. An index of the quality of public healthcare – detection and control of hypertension DetectionControlDetected and controlled Excellent Peru (rural)97%93%90% Peru (urban)93%78%73% Moderate Mexico (urban)80%55%44% Venezuela83%50%42% DR82%48%39% Mexico (rural)73%52%38% China (urban)79%45%36% Poor Cuba70%34%24% India (rural)43%43%18% India (urban)44%37%16% China (rural)51%5%3%

49. PRs* for association between 10/66 dementia and use of any medical service * Controlling for age, gender, education, assets, depression and number of physical illnesses

50. 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) No domiciliary assessment/ care Clinic based service No continuing care ‘Out of pocket’ expenses Prince et al, World Psychiatry, 2007

51. Intervention - possibilities 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 –Basic management strategies in the home “Helping carers to care” – a 10/66 caregiver education and training intervention in India, Moscow, Dominican Republic, Mexico, Peru, Argentina, Venezuela and China

52. ‘Helping carers to care’ - content Module 1 – Assessment (main carer) Module 2 - Basic education –What is dementia? –Symptoms –Course Module 3 - Training (BPSD) –Personal hygiene –Dressing –Toileting and incontinence –Repeated questioning –Clinging –Aggression –Wandering –Loss of interest and activity

53. Two day fully manualised training Training DVD Role playing with feedback Supervision in the field Knowledge/ skills –Generic counselling skills –Assessing care needs, BPSD, family structures –Educating the family about dementia –General caregiving tips –Specific strategies for BPSD ‘Helping carers to care’ – training

54. The drop off manual – carer strain in China

55. A cloud at twilight

56. 10/66 Intervention 1. Survey2. RCT Caregiver education + training Waiting list control group RandomisationInterventionOutcome Person with dementia - Quality of life (DEMQOL) - BPSD (NPI-Q) Caregiver - Knowledge - Strain (Zarit) - Depression (SRQ 20) - Quality of life (WHOQOL)

57. 10/66 ‘Helping carers to care’ intervention OUTCOMEMoscowIndiaChinaDRPeru THE CARER Quality of life (WHO-QoL) Physical+0.22*+0.06+0.49 Psychological+0.34*+0.06+0.29+0.10 Social+0.62*+0.04+0.20+0.39 Environmental+0.66*-0.01+0.44-0.22 Carer strain Zarit carer burden-0.73-0.320.18-0.62-1.02 Depression/ Anxiety-0.32-0.560.27-0.38-0.14 Behaviour - carer distress score-0.30-0.76-0.45-0.38-0.09 THE PERSON WITH DEMENTIA Behaviour - severity score-0.17-0.39-0.47-0.11-0.10 DEMQOL+0.52*+0.27+0.55+0.32 * = not measured in India

58. Chronic diseases – the new global public health priority? Prevalence in Dominican Republic, compared with US NHANES Health conditionPrevalence in Dominican Republic SMR (95% confidence intervals Diabetes17.5% 83 (70-97) Metabolic syndrome 39.6% 72 (64-80) Hypertension73.8% 108 (101-117) Stroke8.7% 100 (81-123) Dementia5.4% 85 (65-110) Anaemia35.0% 310 (262-373)

59. 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 Targeting dependency using a chronic conditions care framework

60. World Alzheimer Report – Part one (2009) –Prevalence, numbers –Impact – disability, dependency, carer strain –Health service responses World Alzheimer Report – Part two (2010) –Economic cost –Global burden of dementia (DALYs) Helping carers to care –Manualised training and intervention packs (India, China, Latin America) –Meta-analysed evidence from seven RCTs WHO MHGAP guidelines –for management of dementia by non-specialists in primary care Modified intervention –targeting dependency across all chronic conditions The work ahead

61. Alzheimer’s Disease International The 10/66 Dementia Research Group in 12 countries 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