The protocols for the 10/66 dementia research group population-based research programme
1 King's College London, Health Service and Population Research Department, Section of Epidemiology, De Crespigny Park, SE5 8AF, London, UK
2 Internal Medicine Department, Geriatric Section Universidad Nacional Pedro Henriquez Ureña (UNPHU), John F Kennedy Avenue, Santo Domingo, Dominican Republic
3 Behavioral and Cognitive Neurology Unit, Neuraxis Institute – Neurological Foundation, Buenos Aires – Argentina
4 Mental Health Research Centre Russian Academy of Medical Sciences, Moscow, Russia
5 Psychogeriatric Unit, National Institute of Mental Health "Honorio Delgado Hideyo Noguchi", Lima – Perú
6 Institute of Mental Health; Peking University, # 51 Hua Yuan Bei Road Haidian District Beijing, 100083, China
7 Christian Medical College, Vellore, India
8 Srinivasan Centre for Clinical Neurosciences. The Institute of Neurological Sciences, Voluntary Health Services, Taramani, Chennai, India
9 Genetics & Epidemiology Department Conway Institute – University College Dublin, Belfield Campus Belfield, Dublin, Ireland
10 Facultad de Medicina Finley-Albarran, Medical University of Havana, Cuba
11 Medicine Department, Caracas University Hospital, Faculty of Medicine, Universidad Central de Venezuela, Caracas
12 The Cognition and Behavior Unit, National Institute of Neurology and Neurosurgery of Mexico, Av. Insurgentes # 3877. Col. La Fama. ZIP Code 14269. Delegacion Tlalpan. Mexico City, Mexico
13 Dept. of Mental Health, Nnamdi Azikiwe University Teaching Hospital, Nnewi, Anambra State, NIGERIA
BMC Public Health 2007, 7:165 doi:10.1186/1471-2458-7-165Published: 20 July 2007
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.
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.
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.