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Open Access Highly Accessed Study protocol

The protocols for the 10/66 dementia research group population-based research programme

Martin Prince1*, Cleusa P Ferri1, Daisy Acosta2, Emiliano Albanese1, Raul Arizaga3, Michael Dewey1, Svetlana I Gavrilova4, Mariella Guerra5, Yueqin Huang6, KS Jacob7, ES Krishnamoorthy8, Paul McKeigue9, Juan Llibre Rodriguez10, Aquiles Salas11, Ana Luisa Sosa12, Renata MM Sousa1, Robert Stewart1 and Richard Uwakwe13

Author Affiliations

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

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BMC Public Health 2007, 7:165  doi:10.1186/1471-2458-7-165

Published: 20 July 2007

Abstract

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/design

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.

Discussion

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.