The protocols for the 10/66 dementia research group population-based research programme.
BACKGROUND
Latin America, China and India are experiencing unprecedentedly rapid demographic ageing with an increasing number of people with dementia. The 10/66 Dementia Research Group's title refers to the 66% of people with dementia that live in developing countries and the less than one tenth of population-based research carried out in those settings. This paper describes the protocols for the 10/66 population-based and intervention studies that aim to redress this imbalance.


METHODS
Cross-sectional comprehensive one phase surveys have been conducted of all residents aged 65 and over of geographically defined catchment areas in ten low and middle income countries (India, China, Nigeria, Cuba, Dominican Republic, Brazil, Venezuela, Mexico, Peru and Argentina), with a sample size of between 1000 and 3000 (generally 2000). Each of the studies uses the same core minimum data set with cross-culturally validated assessments (dementia diagnosis and subtypes, mental disorders, physical health, anthropometry, demographics, extensive non communicable disease risk factor questionnaires, disability/functioning, health service utilisation, care arrangements and caregiver strain). Nested within the population based studies is a randomised controlled trial of a caregiver intervention for people with dementia and their families (ISRCTN41039907; ISRCTN41062011; ISRCTN95135433; ISRCTN66355402; ISRCTN93378627; ISRCTN94921815). A follow up of 2.5 to 3.5 years will be conducted in 7 countries (China, Cuba, Dominican Republic, Venezuela, Mexico, Peru and Argentina) to assess risk factors for incident dementia, stroke and all cause and cause-specific mortality; verbal autopsy will be used to identify causes of death.


CONCLUSIONS
The 10/66 DRG baseline population-based studies are nearly complete. The incidence phase will be completed in 2009. All investigators are committed to establish an anonymised file sharing archive with monitored public access. Our aim is to create an evidence base to empower advocacy, raise awareness about dementia, and ensure that the health and social care needs of older people are anticipated and met.
King's College London, Health Service and Population Research Department, Section of Epidemiology, De Crespigny Park, London, UK. m.prince@iop.kcl.ac.uk
Martin
M
Prince
Cleusa P
CP
Ferri
Daisy
D
Acosta
Emiliano
E
Albanese
Raul
R
Arizaga
Michael
M
Dewey
Svetlana I
SI
Gavrilova
Mariella
M
Guerra
Yueqin
Y
Huang
K S
KS
Jacob
E S
ES
Krishnamoorthy
Paul
P
McKeigue
Juan Llibre
JL
Rodriguez
Aquiles
A
Salas
Ana Luisa
AL
Sosa
Renata M M
RM
Sousa
Robert
R
Stewart
Richard
R
Uwakwe
D000368:Aged; D002391:Catchment Area, Health; D002423:Cause of Death; D015897:Comorbidity; D003430:Cross-Sectional Studies; D003704:Dementia / Q000150:complications / Q000453:epidemiology* / Q000628:therapy; D003906:Developing Countries / Q000706:statistics & numerical data*; D005260:Female; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data / Q000639:trends; D006302:Health Services Research; D006701:Home Nursing / Q000523:psychology* / Q000706:statistics & numerical data; D006801:Humans; D015994:Incidence; D008297:Male; D011159:Population Surveillance; D018570:Risk Assessment; D012307:Risk Factors; D012959:Socioeconomic Factors