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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
“A Memorable History of England, comprising all the parts you can remember, including 103 Good Things, 5 Bad Kings and 2 Genuine Dates”
Timelines
• Pilot studies (1999-2002)
• Population surveys – baseline phase – First group (2003-2006)– Second group (2006-2010)
• Incidence phase (2008-2010)
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
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
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
www.alz.co.uk/1066
What’s the message? 1
Prevalence and ‘numbers’
The evidence base in 2004
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
0
2
4
6
8
10
12
20012020
Increases – numbers of people with dementia (2000 to 2020)
millions
Prevalence studies worldwide
The prevalence of 10/66 dementia
Prevalence of 10/66 and DSM IV Dementia
02468
1012
%
DSMIV
DSMIV
1066
Rodriguez et al, Lancet 2008
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
Culture and education fair dementia diagnosis
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
So, is it <1% or 8 to10% ?
02468
1012
%
DSMIV
DSMIV
1066
Rodriguez et al, Lancet 2008
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
Survival by cognitive status – Chennai, India; 3 year follow-up
Cognitively normal
MCI
Mild dementia
Moderate/ severe dementia
Follow up time in days
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
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
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?
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
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
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 √
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
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
US draft GBD prevalence estimates
0
5
10
15
20
25
30
35
65-74 75-84 85 +
FemaleMale
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
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
What is the message? 2
The impact of dementia
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
The independent impact of dementia, across centres, on dependency (needs for care)
1 4.5 10 20
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)
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
Dona Angela
Aged 108 years!!
Some blue skies thinking….
What is the message? 3
Meeting the need – social protection
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
Social protection – (un)availability of children for support
0
5
10
15
20
25
%
no childrenwithin 50 milesno children
Migration
Infertility
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)
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)
What is the message? 4
Meeting the need – health care
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
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%
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
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
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
‘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
• 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
The drop off manual – carer strain in China
A cloud at twilight
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)
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
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)
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
• 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
• 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
