Unforgotten: love and the culture of dementia care in India
Today nearly four million people in India live with dementia. As life expectancy increases this number will also rise. Yet little is known about how people in India cope with dementia, how they live, how their families care for them, and how relationships and identities change through illness and loss.
To address this gap, in 2008 Dementia Australia supported Bianca Brijnath to undertake research in this area through funding her PhD via the Dementia Australia Postgraduate Scholarship for Social Research in Dementia.
This book is the fruit of that labour.
Unforgotten offers a rich ethnographic account of how middle-class families in urban India care for their relatives with dementia. The aims of this book are to investigate the local idioms on dementia and ageing, the personal experience of care-giving, the functioning of stigma in daily life, and the social and cultural barriers in accessing support.
Love and transformation are central themes in this book which are illustrated in different ways: the husband who wakes up at 3am to feed his wife with late-stage dementia ice-cream because that is the time when she is most responsive; the wife who refuses to admit that her husband will not get better because that would mean giving up on him and accepting he will die; the two daughters who gave up work for seven years and spent all their resources to care for their elderly mother with dementia because that is what caring means to them.
The manuscript has been written in a highly accessible format with the intent of appealing to as broad an audience as possible. One does not need to be an academic to appreciate and understand this book. Nor does one have to be interested only in dementia care in India: this book has salience beyond India. The analyses presented speak to the complexities of care, ageing, culture and love within families in an era of globalisation, money, transnationalism and migration.
Simultaneously it also shows how cultural frameworks historically specific to India, such as medical pluralism and hope for a cure, the emotional currency of feeding and eating, and the powerful bonds of kinship and reciprocity, continue to structure everyday worlds and practises.
Unforgotten has been well-received to date and is available for purchase from the publishers, Berghahn Books.
Bianca Brijnath is now a Senior Research Fellow at the Monash University and continuing to do work in the field.