Martin Prince - Global Impact of Dementia

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  • ADI commissioned a group of researchers to review the available epidemiological estimates, and come up with consensus estimates of the prevalence of dementia in all world regions, from which a total number of cases worldwide could be calculated
  • The trends for increases over the next 20-40 years are particularly interesting with by far the largest proportionate increase in low and middle income countries. By 202 there will be nearly as many people with dementia in China as in the whole of the developed world put together
  • Worldwide most world regions are not as well supported with research studies as is the case with the UK, North America and Australia.
    ADI’s 10/66 Dementia Research Group studies will be helping to fill in the gaps in the evidence base
  • In the Indian centres, and in Peru, there was a very low prevalence of DSM IV dementia with respect to the prevalence of 10/66 dementia. This was attributable to the low levels of informant endorsement of social and occupational impairment in these centres, and the poor correlation between objective cognitive impairment and informant reports (see previous slides)
  • The standardised morbidity rations in in this figure compare 10/66 DSM IV prevalences with those from EURODEM, for all those aged 65 and over, standardising for age and gender differences between the populations.
    In the 10/66 studies, DSM IV prevalence is similar to that recorded in EURODEM for the more developed urban latin american settings. Chinese DSM IV prevalence is around one half that of EURODEM, while that in rural Latin America and in India it is only one quarter to one fifth that seen in the European EURODEM studies.
  • In the Indian centres, and in Peru, there was a very low prevalence of DSM IV dementia with respect to the prevalence of 10/66 dementia. This was attributable to the low levels of informant endorsement of social and occupational impairment in these centres, and the poor correlation between objective cognitive impairment and informant reports (see previous slides)
  • The standardised morbidity rations in in this figure compare 10/66 DSM IV prevalences with those from EURODEM, for all those aged 65 and over, standardising for age and gender differences between the populations.
    In the 10/66 studies, DSM IV prevalence is similar to that recorded in EURODEM for the more developed urban latin american settings. Chinese DSM IV prevalence is around one half that of EURODEM, while that in rural Latin America and in India it is only one quarter to one fifth that seen in the European EURODEM studies.
  • The standardised morbidity rations in in this figure compare 10/66 DSM IV prevalences with those from EURODEM, for all those aged 65 and over, standardising for age and gender differences between the populations.
    In the 10/66 studies, DSM IV prevalence is similar to that recorded in EURODEM for the more developed urban latin american settings. Chinese DSM IV prevalence is around one half that of EURODEM, while that in rural Latin America and in India it is only one quarter to one fifth that seen in the European EURODEM studies.
  • In this figure, we compare the prevalence of 10/66 dementia from our studies with the regional prevalence estimates from the ADI consensus (Ferri et al 2005), again using standardised morbidity ratios, this time standardising for age differences only.
    If we focus on 10/66 cases confirmed by CDR as mild, moderate or severe, then the 10/66 prevalences are similar to the ADI consensus for most regions. However, 10/66 estimates are lower than ADI for rural Latin America, rural China and urban India.
    If we include 10/66 cases that are classified as ‘questionable dementia’ under CDR, then the ADI consensus would be a considerable underestimate of prevalence in India.
  • Family transfers are an important source of income for older people in those centres where pensions are uncommon
  • Those with smaller skulls are more likely to have dementia. This interesting finding is unlikely to have been accounted for by selective mortality, recall bias or reverse causality. It may reflect an association with early life neurodevelopment
  • Physical illness is storngly and consistently associated with use of healthcare services (statistically significant in all centres)
  • Predictors of caregiver strain are listed in order of the strength of the independent association with Zarit Burden as indicated by the R-square (proportion of the variance in ZBI accounted for by that predictor)
    Higher ZBI scores are associated with1) more severe BPSD, 2) centre (higher in Beijing and lower in rural China and in India), 3) more psychological morbidity in the carer, 4) carer relationship with person with dementia (strain is higher in family members and lower in non-related carers), 5) with more time spent assisting the PWD with ADL and 6) smaller household size
  • There is, in general, no association between dementia and use of community medical services. However, the general trend is towards an inverse association with those with dementia being less likely to use healthcare services. This trend is statistically significant in Cuba.
  • There is robust evidence, from high income countries, for the effectiveness of caregiver interventions. A recent meta analysis identified 30 controlled studies, of which 21 were randomised, involving 2,040 caregivers who were predominantly spouses (of persons with dementia), female, and aged 55 and older(5). The meta-analysis identified modest, consistent but statistically significant benefits on caregiver knowledge and caregiver psychological morbidity, but no consistent evidence for an effect upon caregiver strain. There was a mean effect size of 0.3 for all caregiver outcomes. There was also a large effect size for patient mood. Four out of seven studies that used time until nursing home placement as an outcome suggested that caregiver interventions were associated with delayed placement. In an analysis of heterogeneity, the only intervention-related feature that emerged as statistically significant was the involvement of the patient as well as the caregiver in the structured program. In high income countries specialized health care services are available to support the family caregiver. We were only able to identify one published trial from a low or middle income country; Senanorang et al(15) in Bangkok found an improvement on psychological and behavioural symptoms in patients with dementia after offering their caregivers a brief counseling intervention.
  • The standardised morbidity rations in in this figure compare 10/66 DSM IV prevalences with those from EURODEM, for all those aged 65 and over, standardising for age and gender differences between the populations.
    In the 10/66 studies, DSM IV prevalence is similar to that recorded in EURODEM for the more developed urban latin american settings. Chinese DSM IV prevalence is around one half that of EURODEM, while that in rural Latin America and in India it is only one quarter to one fifth that seen in the European EURODEM studies.
  • Martin Prince - Global Impact of Dementia

    1. 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. 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. 3. Timelines • Pilot studies (1999-2002) • Population surveys – baseline phase – First group (2003-2006) – Second group (2006-2010) • Incidence phase (2008-2010)
    4. 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. 5. 38 publications – Methods 7 – Validation 7 – Case-finding 3 – Prevalence 6 – Aetiology 1 – Caregiving 7 – Intervention 2 – Health care/ health policy 4 – Other chronic diseases 1
    6. 6. Capacity building Juan Llibre de Rodriguez Cuba Modelling dementia prevalence Mariella Guerra Peru Late-life depression Ana Luisa Sosa Mexico MCI/ subjective memory impairment Zhaorui Liu China Economic cost of dementia Renata Sousa Brazil/ UK Disability and dependency AT Jotheeswaran India Course and outcome of dementia/ predictive validity
    7. 7. www.alz.co.uk/1066
    8. 8. What’s the message? 1 Prevalence and ‘numbers’
    9. 9. The evidence base in 2004
    10. 10. ADI’s consensus estimates 0 10 20 30 40 50 60 70 80 90 2000 2010 2020 2030 2040 2050 24.4 42.7 82.0 millions Ferri et al, Lancet 2005
    11. 11. 0 2 4 6 8 10 12 NORTH AM ERICA EUROPE E.EUROPE AFRICA M ID EASTLATIN AM ERICA DEVELO PED AP INDIA/S ASIA CHINA/SE ASIA 2001 2020 Increases – numbers of people with dementia (2000 to 2020) millions
    12. 12. Prevalence studies worldwide
    13. 13. The prevalence of 10/66 dementia
    14. 14. Prevalence of 10/66 and DSM IV Dementia 0 2 4 6 8 10 12 % Cuba DRCaracas Peru (urb)Peru (rur) M exico (urb) M exico (rur) China (urb) China (rur) India (urb) India (rur) DSMIV DSMIV 1066 Rodriguez et al, Lancet 2008
    15. 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. 16. Culture and education fair dementia diagnosis
    17. 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 Kappa 0.79 (0.74-0.83) 0.63 (0.56-0.69) Sensitivity 93.2% 57.8% Specificity 96.8% 98.3% Cuban 10/66 algorithm validation study results Prince et al. BMC Public Health 2008,8:219
    18. 18. So, is it <1% or 8 to10% ? 0 2 4 6 8 10 12 % Cuba DRCaracas Peru (urb)Peru (rur) M exico (urb) M exico (rur) China (urb) China (rur) India (urb) India (rur) DSMIV DSMIV 1066 Rodriguez et al, Lancet 2008
    19. 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. 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. 21. The predictive validity of the 10/66 Dementia Diagnosis – Chennai, India; 3 year follow-up pure non amnestic MCI dementia Baseline cognitive status -20.00 -10.00 0.00 10.00 changeinCSI'D'COGSCORE     pure non amnestic MCI cind only mci (amnestic and amnestic plus) dementia Baseline cognitive status -40.00 0.00 40.00 80.00 ChangeinWHODASdisabilityscore              MCI categories Dementia MCI categories Dementia Change in cognitive function Change in disability
    22. 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. 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. 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. 25. Literature search - prevalence ASIA n AMERICAS n H EUROPE NS Asia Pacific High income 26 North America 16 Europe West 69 Asia Central 0 Caribbean 2 Europe Central 8 Asia East 37 LA Andean 1 Europe East 1 Asia South 7 LA Central 4 Asia SE 6 LA South 2 AFRICA Oceania 1 LA Tropical 2 North Africa/ Middle East 4 Australasia 5 SSA Central 0 X SSA East 0 SSA South 1 SSA West 2
    26. 26. USA - eligible studies Study Location W B H A NS Incl.? Schoenberg 1985 Copiah County, Mississippi X X √ Pfeffer 1987 South California X √ Folstein 1991 East Baltimore, Maryland X X X Heyman 1991 Piedmont, N Carolina X X X Hendrie 1995 Indianapolis, Indiana X X Graves 1996 King County, Washington X √ Fillenbaum 1998 Piedmont, N Carolina X X √ Gurland 1999 Manhattan, NY X X X X Breitner 1999 Cache County, Utah X √ Demirovic 2003 Dade County, Florida X X X X Hann 2003 Sacramento, California X √ Plassman 2007 ADAMS HRS (National) X √
    27. 27. Prevalence by age, USA - male 0 10 20 30 40 50 60 70 80 65 70 75 80 85 90 95 100 White Black Hispanic Asian Did not sample by race Boston and Chicago (AD) HRS/ ADAMS
    28. 28. Comparison with UK/ Europe – much less heterogeneity 0 5 10 15 20 25 30 35 40 65-69 70-74 75-79 80-85 85-90 90-95 95+ Brayne Saunders MRC-CFAS Clarke O'Connor EURODEM
    29. 29. US draft GBD prevalence estimates 0 5 10 15 20 25 30 35 65-74 75-84 85 + Female Male
    30. 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. 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. 32. What is the message? 2 The impact of dementia
    33. 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. 34. The independent impact of dementia, across centres, on dependency (needs for care) 1 4.5 10 20
    35. 35. The relative impact of different health conditions, across centres, on dependency (needs for care) Health condition/ impairment Meta-analysed relative risk for association with dependency Mean population attributable fraction (SD) 1. Dementia 4.5 (4.0-5.1) 36.0% (11.0%) 2. Limb paralysis/ weakness 2.8 (2.4-3.2) 11.9% (13.2) 3. Stroke 1.8 (1.6-2.1) 8.7% (4.1) 4. Hypertension 0.9 (0.8-1.0) 6.6% (9.2) 5. Depression 1.7 (1.5-2.0) 6.5% (5.0) 6. Eye problems 1.2 (1.1-1.3) 5.4% (5.0) 7. Gastrointestinal problems 1.1 (1.0-1.3) 3.3% (5.3) 8. Arthritis 1.1 (1.0-1.3) 2.6% (2.5) 9. Hearing problems 1.1 (0.9-1.2) 1.4% (1.7) 10. Chronic Obstructive Pulmonary disease 1.1 (0.9-1.3) 0.8% (1.6) 11. Ischaemic heart disease 1.0 (0.9-1.2) 0.5% (1.0) 12. Skin diseases 1.1 (0.9-1.3) 0.4% (1.2)
    36. 36. Burden of disability and research effort 2.00 4.00 6.00 8.00 10.00 12.00 Contribution to total years lived with disability % 0.00 5.00 10.00 15.00 20.00 25.00 ISIpublications% dementia stroke musculoskeletal CVD cancer R Sq Linear = 0.986 Cancer Heart disease Arthritis Stroke Dementia Correlation = 0.99
    37. 37. Dona Angela Aged 108 years!!
    38. 38. Some blue skies thinking….
    39. 39. What is the message? 3 Meeting the need – social protection
    40. 40. Income support from family, and government or occupational pension (% in receipt of income from those sources) 0 10 20 30 40 50 60 70 80 90 100 % C uba D R Venezuela Peru (urb) Peru (rur) M exico (urb) M exico (rur) C hina (urb) C hina (rur) India (urb) India (rur) Pension Family support
    41. 41. Social protection – (un)availability of children for support 0 5 10 15 20 25 % C uba D RVenezuelaPeru (urb)Peru (rur) M exico (urb) M exico (rur) C hina (urb) C hina (rur) India (urb)India (rur) no children within 50 miles no children Migration Infertility
    42. 42. Prevalence of food insecurity 0 5 10 15 20 25 % Cuba DRVenezuelaPeru (urb)Peru (rur) M exico (urb) M exico (rur) China (urb) China (rur) India (urb)India (rur)
    43. 43. 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 theta .1 101 Combined Cuba DR Peru U Peru R Venezuela Mexico U Mexico R India U India R 1.49 (1.26-1.77)
    44. 44. What is the message? 4 Meeting the need – health care
    45. 45. PRs* for association between number of physical illnesses and use of any medical service * Controlling for age, gender, education, assets, dementia and depression
    46. 46. An index of the quality of public healthcare – detection and control of hypertension Detection Control Detected and controlled Excellent Peru (rural) 97% 93% 90% Peru (urban) 93% 78% 73% 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 Cuba 70% 34% 24% India (rural) 43% 43% 18% India (urban) 44% 37% 16% China (rural) 51% 5% 3%
    47. 47. 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
    48. 48. 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
    49. 49. 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
    50. 50. ‘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
    51. 51. • 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
    52. 52. The drop off manual – carer strain in China
    53. 53. A cloud at twilight
    54. 54. 10/66 Intervention 1. Survey 2. RCT Caregiver education + training Waiting list control group Randomisation Intervention Outcome Person with dementia - Quality of life (DEMQOL) - BPSD (NPI-Q) Caregiver - Knowledge - Strain (Zarit) - Depression (SRQ 20) - Quality of life (WHOQOL)
    55. 55. 10/66 ‘Helping carers to care’ intervention OUTCOME Moscow India China DR Peru THE CARER Quality of life (WHO-QoL) Physical +0.22 * +0.06 +0.49 +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 -0.32 0.18 -0.62 -1.02 Depression/ Anxiety -0.32 -0.56 0.27 -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
    56. 56. Chronic diseases – the new global public health priority? Prevalence in Dominican Republic, compared with US NHANES Health condition Prevalence in Dominican Republic SMR (95% confidence intervals Diabetes 17.5% 83 (70-97) Metabolic syndrome 39.6% 72 (64-80) Hypertension 73.8% 108 (101-117) Stroke 8.7% 100 (81-123) Dementia 5.4% 85 (65-110) Anaemia 35.0% 310 (262-373)
    57. 57. 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
    58. 58. • 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
    59. 59. • 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

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