Caregivers of People with Alzheimer's Disease: a Qualitative Study from the Indian 10/66 Dementia Research Network

Background: Dementia is a rapidly growing problem in all parts of the developing world. Such societies are characterised by low levels of awareness regarding dementia as a chronic degenerative brain syndrome, and by an absence of supportive health and welfare services. There is reliance upon families as the cornerstone of support and care. However, surprisingly little is known of the care arrangements for people with dementia and the strain experienced by their family caregivers.

Method: In a qualitative study of 17 caregivers of people with Alzheimer's disease identified through an innovative case-finding program in Thrissur, South India, we obtained information on the range of care arrangements, attitudes towards care giving roles and sources of strain.

Results: The majority of caregivers were young women, often daughters-in-law of women with dementia. The principal sources of caregiver strain were behavioural problems associated with the dementia syndrome, and incontinence. Strain was exacerbated by the lack of supportive response by local health services, and by lack of support and, sometimes, criticism from other family members. Family conflict was commonly encountered. The majority of caregivers experienced significant deterioration in their mental health. One caregiver unfortunately committed suicide after the death of her husband.

Conclusions: There is a clear need for more education, advice and support for families affected by dementia. Community services in developing countries should consider training existing domiciliary outreach services, the community-based multi-purpose health workers, to identify and support family caregivers.