Bianca Brijnath's monograph, Unforgotten: Love and Culture of Dementia Care in India, provides a highly readable and wonderfully rich account of an exploratory study into family care in India. The text is based on the author's PhD in anthropology involving 46 interviews with 20 families living in Delhi and caring for someone with dementia. Even though the focus of this book is dementia caregiving, it does not shy away from sensitive and significant subjects such as death and dying, organ donation, gender and cultural and class or caste differences. Furthermore, the author's account of interviewing people in their own homes is fascinating and challenges traditional notions of what makes for a good interview. Unforgotten should therefore be of interest to a wide audience, including methodologists and sociologists in health, ageing and ethnicity. The book is essentially about caregiving; however the person with dementia is not forgotten, which is why it stands apart from standard published research on dementia caregiving. The chapter headings are evocative and reflect the wide range of topics covered in this text, which are: methods and character-building; the diagnostic process; therapeutics and health-seeking; the economics of care; Alzheimer's and the Indian appetite; stigma and loneliness in care; the journey to silence; concluding with a section entitled: this is the time for romance. As the author notes, ‘there are few happy endings in dementia care, but happily I found pockets of deep love and commitment’ (p. 182). The reflexive, anthropological and metaphorical style of writing is refreshing for a text on caregiving, particularly dementia caregiving, and is one of the main strengths of this book. In terms of disciplinary approach, the book opens up the anthropological literature and is explicitly concerned with expanding thinking ‘towards an anthropology of dementia care’ (p. 9). In line with this approach and vision, the author routinely reflects on the challenges or ‘messiness’ of fieldwork and ways in which cultural norms inevitably interweave with the data collection process. A wonderful example of this comes early on in the book when the author recounts how several people may join in interviews, even though a one to one conversation had been arranged. Fieldwork is conducted within the paradigm of critical and sensory ethnography; thus the author is keen to bring about change, as opposed to simply collect people's stories. However, the extent to which one can achieve this as an anthropologist is questioned by the author, and is a frustration that I believe is shared by many researchers working in the area of health and social care, especially if they have a medical or clinical background. Unfortunately, it is not clear how or whether the research findings were communicated back to participants, and so the book raises more questions than it answers about the change agenda in India, and the (potential) involvement of people with dementia and their families in it. Within the descriptions of family care in India, the book introduces the reader to the local vernacular of northern India, including for example, the phrase sathiyana or ‘gone sixtyish’ (p. 3), which reflects a cultural perception that memory loss and dementia is a normal part of ageing. Hindi words and phrases – for which a glossary is helpfully provided– are used throughout the text – all of which adds another dimension to our understanding of family care in India. As well as a rich text, the book contains several photographs of fieldwork, including images of family members preparing meals and home attendants being trained. These images serve to transport the reader to the places in which fieldwork was conducted, and perhaps most significantly, humanise the participants who took part. The book as a whole provides an excellent example of how to publish from a PhD, and also the continuing value of monographs. The author cleverly weaves essential information about methods, recruitment and ethics into a rich story of family care in India. The book begins and ends with a personal note to the author's grandmother who had dementia and died; and throughout the text, the lives of Indian families affected by dementia are discussed with sensitivity, reflexivity and respect. The field of dementia studies needs more such research from an anthropological perspective.
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May 28, 2024
René Bekker + 3
Open Access