Byline: Martin. Prince
Well-designed epidemiological research is relatively lacking in low and middle income countries where two-thirds of the world's estimated 24 million people with dementia live. The 10/66 Dementia Research Group has sought since 1998 to redress this imbalance. Pilot studies to develop and validate dementia diagnostic measures and study care arrangements in 26 centers worldwide were followed by one phase cross-sectional catchment area surveys in eight Latin American countries, China, India, Nigeria and South Africa. The protocol includes assessment of sociodemographics, disability, care arrangements, physical and mental health, and dementia diagnosis with (more restrictive) DSM-IV and (less restrictive) 10/66 dementia criteria. An incidence phase is underway in eight countries. 10/66 dementia prevalence is generally double that of DSM-IV dementia. DSM-IV dementia is particularly rare in India, attributable to the small proportion of family informants confirming cognitive decline and social impairment. Carer psychological and economic strain is as high as in the developed world, despite traditional family care arrangements. A significant minority of people with dementia are vulnerable due to lack of family support and economic resources. Earlier studies probably underestimated dementia prevalence in regions with very low awareness of this emerging public health problem. More research is needed to delineate the impact of dementia relative to other chronic diseases, and secular trends in countries experiencing rapid demographic ageing and health transition. Packages of care are also a priority - healthcare services and governments have not responded to families' complex needs for support in their long-term care role.
The 10/66 Dementia Research Group (10/66) was founded ten years ago at the annual conference of Alzheimer's Disease International (ADI) in Cochin, India. 10/66 refers to the less than one-tenth of all population-based research into dementia that had been directed towards the two-thirds or more of people with dementia living in developing countries. 10/66 was formed to redress this imbalance, encouraging active research collaboration between centers in different developing countries and between developed and developing countries. The Cochin symposium established priorities for 10/66, described in a consensus publication co-authored by the founding members.[sup]  More research was needed to describe prevalence and incidence and to explore regional variations using harmonized methods. Another priority was the description of care arrangements for people with dementia, quantifying the impact upon caregivers of providing care and evaluating the effectiveness of new services for people with dementia and their caregivers. The group identified potential through good quality research for generating awareness, pioneering service development and influencing policy. Now is an opportune time to review progress in India and in other regions. This review will focus, but not exclusively, upon the work of the 10/66 Dementia Research Group.
Formative Stage (1998-2003)
Methodological issues needed first to be addressed.[sup]  Accordingly, 10/66 carried out pilot investigations in 26 centers from 16 developing countries in Latin America and the Caribbean, Africa, India, Russia, China and SE Asia. 2885 persons aged 60 and over were interviewed, 729 people with dementia, and 3 groups free of dementia: 702 with depression, 694 with high education and 760 with low education. Seven centers in India participated in this phase of the project, two from Chennai, and one each from Bangalore, Goa, Hyderabad, Thrissur and Vellore. We aimed 1) to develop and validate a one-phase education- and culture-fair dementia diagnostic algorithm to be used in populations with very little formal education and in very different countries and cultures and 2) to obtain preliminary information on care arrangements for people with dementia, the impact upon caregivers of providing care and the common behavior problems that they encounter across regions and cultures. …