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

1066drg@iop.kcl.ac.uk

“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

1066drg@iop.kcl.ac.uk

My thanks to