PROJECT AT A GLANCE
Funder: Internal funding
Duration: June 1999 to June 2000
Project coordinator: Dr Vikram Patel
The Indian network involves studies in several centres including NIMHANS (Bangalore), SCARF (Chennai) and Thrissur Medical College (Kerala).
In Goa, the study involves collaboration with the Department of Preventive & Social Medicine, Goa Medical College (Dr Amit Dias, Prof Motghare) and the Institute of Psychiatry and Human Behaviour (Dr R Parameshwaran)
To develop culturally valid measures of mental health in the elderly and determine the impact of caring for dementia on family members.
Depression is common in older persons. Dementia is a disorder typically seen in persons aged over 65 years. It is a progressive disorder and ultimately leads to profound disability and death.
Currently 55 million Indians are aged over 60, projected to rise to 146 million by 2025. India seems ill-equipped to deal with this change. There are few pensions or beefits for older people or their caregivers. Family care for older people is under threat as intergenerational relationships evolve in the context of rapid social and economic change.
There is a marked lack of awareness of dementia in the news media, among health and social care professionals, and among the general population. The 10/66 Dementia Research Group, founded in 1998, is affiliated to Alzheimer's Disease International. 10/66 refers to the small proportion (roughly one tenth) of population-based research into dementia that is directed towards the two-thirds or more of cases living in developing parts of the world. In the absence of formal services in most parts of India, there is a heavy reliance on informal and, in particular, family care for people with dementia.
This project consisted of two stages: the first stage involved qualitative studies on ageing and mental health in Goa. Nine focus group discussions were conducted with elders, carers and health workers. The findings showed that although families were the main carers, many elders lived alone and there were many instances of neglect and abuse. These findings have recently been published in Psychological Medicine.
The second step aimed to develop culture and education fair measures of diagnosis of dementia and depression in the aged in community settings in the Konkani language and to obtain information on care arrangements and carer burden in families with elders with and without dementia and depression. This stage was conducted in the communities of Mandur and Santa Cruz. The study involved recruitment of 30 subjects with dementia, 30 with depression and 60 "normal" elders. The findings have shown clearly the enormous economic and health impact of caring for dementia. Most carers are women, particularly spouses, and caring for dementia leads many to become depressed.
These studies will play a crucial role in informing policy on the development of services for people with dementia, and for older people and their families in general. The project aims to generate from the evidence gathered practicable intervention strategies that can be applied and evaluated (in a later research phase) within the same population.