martin prince - global impact of dementia
TRANSCRIPT
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ADI’s 10/66 Dementia Research Group
The next ten yearsor
What’s the message?
Prof. Martin PrinceCentre for Public Mental Health
King’s College LondonFor the 10/66 Dementia Research Group
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“A Memorable History of England, comprising all the parts you can remember, including 103 Good Things, 5 Bad Kings and 2 Genuine Dates”
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Timelines
• Pilot studies (1999-2002)
• Population surveys – baseline phase – First group (2003-2006)– Second group (2006-2010)
• Incidence phase (2008-2010)
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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
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38 publications
– Methods 7– Validation 7– Case-finding 3– Prevalence 6– Aetiology 1– Caregiving 7– Intervention 2– Health care/ health policy 4– Other chronic diseases1
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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
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www.alz.co.uk/1066
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What’s the message? 1
Prevalence and ‘numbers’
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The evidence base in 2004
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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
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0
2
4
6
8
10
12
20012020
Increases – numbers of people with dementia (2000 to 2020)
millions
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Prevalence studies worldwide
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The prevalence of 10/66 dementia
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Prevalence of 10/66 and DSM IV Dementia
02468
1012
%
DSMIV
DSMIV
1066
Rodriguez et al, Lancet 2008
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DSM IV prevalence, compared with EURODEM
Latin America (urban) x0.80Latin America (rural) x0.27
China (urban) x0.57China (rural) x0.56
India (urban) x0.22India (rural) x0.18
*Standardised morbidity ratios, standardised for age and gender
Rodriguez et al, Lancet 2008
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Culture and education fair dementia diagnosis
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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-IVKappa 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
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So, is it <1% or 8 to10% ?
02468
1012
%
DSMIV
DSMIV
1066
Rodriguez et al, Lancet 2008
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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
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Survival by cognitive status – Chennai, India; 3 year follow-up
Cognitively normal
MCI
Mild dementia
Moderate/ severe dementia
Follow up time in days
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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
chan
ge
in C
SI'D
' CO
GS
CO
RE
pure non amnestic MCIcind only
mci (amnestic and amnestic plus)dementia
Baseline cognitive status
-40.00
0.00
40.00
80.00
Ch
ang
e in
WH
OD
AS
dis
abili
ty s
core
MCI categories Dementia
MCI categories Dementia
Change in cognitive function
Change in disability
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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
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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?
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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
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Literature search - prevalenceASIA 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
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USA - eligible studiesStudy 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 √
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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
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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
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US draft GBD prevalence estimates
0
5
10
15
20
25
30
35
65-74 75-84 85 +
FemaleMale
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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
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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
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What is the message? 2
The impact of dementia
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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
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The independent impact of dementia, across centres, on dependency (needs for care)
1 4.5 10 20
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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)
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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
ISI
pu
bli
ca
tio
ns
%
dementia
stroke
musculoskeletal
CVD
cancer
R Sq Linear = 0.986
Cancer
Heart disease
Arthritis
Stroke
Dementia
Correlation = 0.99
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Dona Angela
Aged 108 years!!
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Some blue skies thinking….
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What is the message? 3
Meeting the need – social protection
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Income support from family, and government or occupational pension (% in receipt of income from those sources)
0102030405060708090
100
%
CubaDR
Venezuela
Peru (urb)
Peru (rur)
Mexico (urb)
Mexico (rur)
China (urb)
China (rur)
India (urb)
India (rur)
Pension
Family support
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Social protection – (un)availability of children for support
0
5
10
15
20
25
%
no childrenwithin 50 milesno children
Migration
Infertility
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Prevalence of food insecurity
0
5
10
15
20
25
%
CubaDR
Venez
uela
Peru (u
rb)
Peru (r
ur)
Mex
ico (u
rb)
Mex
ico (r
ur)
China (u
rb)
China (r
ur)
India
(urb
)
India
(rur)
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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)
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What is the message? 4
Meeting the need – health care
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0.1
1
10
PRs* for association between number of physical illnesses and use of any medical service
* Controlling for age, gender, education, assets, dementia and depression
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An index of the quality of public healthcare – detection and control of hypertension
Detection Control Detected and controlled
ExcellentPeru (rural) 97% 93% 90%Peru (urban) 93% 78% 73%
ModerateMexico (urban) 80% 55% 44%Venezuela 83% 50% 42%DR 82% 48% 39%Mexico (rural) 73% 52% 38%China (urban) 79% 45% 36%
PoorCuba 70% 34% 24%India (rural) 43% 43% 18%India (urban) 44% 37% 16%China (rural) 51% 5% 3%
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0.1
1
10
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
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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
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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
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‘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
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• 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
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The drop off manual – carer strain in China
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A cloud at twilight
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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)
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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
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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)
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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
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• 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
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• 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
My thanks to