Four days of light and it’s dark again: dementia care in India

Abstract

As the world ages, the prevalence of age-related diseases like dementia will increase. In South Asia and the Western Pacific regions, particularly India and China, rates of dementia are expected to escalate by 314-336 percent in four decades (Ferri et al., 2005b). Yet there is limited work on dementia in this region – on idioms of dementia and ageing, understandings of rights and entitlements, and experiences of caregiving. In redressing this gap, this thesis adds to the current literature by examining the lives of urban Indian families who care for a person living with dementia. The main research question is: In New Delhi, India, how are people with age-related dementia cared for and what are the barriers to carers to access support? Data were gathered in Delhi, with additional work in Kolkata, Bangalore and parts of Kerala. A critical ethnographic method was used. From January to October 2008, in Delhi, 20 families caring for a person with dementia were followed to document their understanding and experiences of diagnosis and prognosis, medication management, enablers and barriers to care, and the extent to which this varied by class, gender, caste and age. This was supplemented with 21 interviews with key service providers and approximately 250 hours of observation in home, hospital and community settings. I argue that caregiving is intimate work and deeply felt but that carers also draw upon broader frameworks – medical pluralism and hope for a cure, the emotional currency of feeding and eating, and the powerful bonds of kinship and reciprocity – to make sense of their everyday worlds and practices. I describe how carers and people with dementia engage with institutions of health, law and money, which exclude and exploit them at different points but that these practices in turn are shaped by shortages in resources and capacity. Existing systems, inequities and roles are challenged as illness and loss forces changes in identity for the carer and the person with dementia. Ultimately what I will show is that care work is ambiguous; at once full of cruelty, tragedy and exploitation but also hope, kinship, and love. It is only through explicating these aspects of care, can we begin to think of culturally meaningful ways to support families and people with dementia.