The psychological and economic impacts of caregiving on family carers for people with probable dementia in rural South India

Abstract

Informal carers play a vital role in the care and well-being of older people with dementia. This article examines the psychological and economic impacts caregiving has on carers of people with suspected dementia and the mechanisms by which they cope with challenges. A mixed-method design was adopted. A baseline survey of 123 older people was undertaken in a resource-poor setting in Kerala, India, using Addenbrooke’s Cognitive Examination – Malayalam Version (ACE-m) to identify those with probable dementia. This was followed by in-depth interviews with ten carers of those identified as having cognitive impairment. The data were later transcribed and thematically analysed using N-Vivo to identify main concepts and themes. Analysis of the in-depth interviews with carers revealed that dementia was often interpreted as a ‘second childhood’, but that this conceptualisation aided carers to cope better. Anger and irritation were the commonly expressed psychological reactions which got accentuated by lack of reciprocation of emotion on the part of care recipient. Government support through social security measures and medical care, along with traditional social practises, helped carers to tide over care expenses. These support systems lessened the psychological and economic impacts of caring. Misconstruction of the disease nature, for example by considering it a normal part of ageing, also seem inadvertently to have helped in coping with care requirements, although this comes at a cost of lower than optimal healthcare access for older people with cognitive impairment.

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ORCID for Elisabeth Schröder-Butterfill: orcid.org/0000-0002-5071-8710

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