The book is about transformative care practices of 20 middle-class urban families in Delhi, India, who look after a loved one with dementia. The book rightfully acknowledges that by undertaking research, dementia care in India can be anticipatory in addressing systemic shortages and implementing culturally appropriate care arrangements. The book is a testimony to how culturally specific values and beliefs determine the attitudes towards elderly people in general and those with dementia specifically. There is a social expectation of care for elderly people by their children. There is a good description of what seva (selfless service) is, which is of paramount importance when trying to delineate the nature of intergenerational relationships in Indian culture. There is no hiding the fact how much the author is influenced by the different dimensions of seva which serves well in a book on cultural aspects of care and relationships in the Indian context. The book is about ‘transformative processes’ across the board set upon by dementia.
The first chapter, which narrates in detail the research design, character building, setting, participants and the procedure, is perhaps particularly useful for research students studying any disorder. Twenty families caring for people with dementia (all except three are financially stable) were recruited through the Alzheimer's and Related Disorders Society of India (ARDSI), Delhi. The book is based on 46 interviews (conducted over ten months with the families), 21 interviews with key service providers and 21 hours of consultation observation. The author acknowledges ‘arguably a different sampling strategy might have revealed another picture of dementia’ (p. 36) which should be a satisfactory answer to those who question the validity of the findings across settings.
The chapter on the diagnostic process is thorough with medical facts but what one finds more interesting is the approach described regarding three types of seeing: ‘to see’ the symptoms, ‘to show’ the specialist and ‘to be seen’. The author delves deep into the meanings and cultural underpinning of ‘doctor shopping’ – taking multiple medical consultations and opinions for the same set of symptoms. The section also gives a social perspective of the factors which result in a delayed diagnosis of dementia, which is a problem all over the world. The search for Ilaj (cure) naturally follows in the next chapter and, since the backdrop is India, medical pluralism and traditional medicine definitely play a major role which is well captured by the author, exemplified by the help-seeking journeys of the families. The hope for a cure the families hold on to is something which keeps them going. For those who are fascinated by Transcendental Meditation, there is enough there to quench your curiosity, and it neatly gels with the rest of the journey for ‘cure’.
In the ‘intentionally negatively oriented chapter’ on economics of care, the author takes a novel approach of using the concepts of identity and exchange in addition to the traditional cost concept. This makes the section interesting to read, even for those among us who get easily distracted by numbers, however important. The author also touches upon the ambivalence of Indian families towards institutionalisation which stimulates readers to introspect and explore further their own belief systems and ideologies. Chapter 5 on Alzheimer's and the Indian appetite was by far the most fascinating section for us as this ‘culinary montage’ opened the avenues of sensory anthropology and gastropolitics, which are topics which we would not have intentionally chosen ourselves. The significance of food in relationships especially with older people and its supposed role in behaviour and illness is beautifully narrated. One is not surprised when the author admits how food has influenced her own relationship and interactions with the participants of the study.
In the section on stigma and loneliness, the author describes how preserving normality is apparently seen as a mission by Indian families. This appears in contradiction to carers who still feel lonely and unsupported, despite help from a range of social networks. The legal aspects of inheritance and the institutional discriminations are dealt with as well. The loneliness and frustration of caring relatives are evident but, more importantly, the usually unspoken dimensions of maintaining the ‘relationship’ with the person with dementia give a good insight into the change in dynamics the illness brings. Chapter 7, ‘Journey to Silence’, is further divided into acts and scenes along the lines of a Bollywood film and the author quotes several key papers which promote and oppose person-centredness in dementia care. Davis's idea of ‘greater honesty in acknowledging the violence of the disease and the suffering it creates’ – reminds the reader of reality checks. The author recalls her own struggles with attempts at a psychological approach as well as categorisation of people with dementia, and soon recognises they are far beyond these arbitrary approaches. Employment as a source of identity and power, intimacies of personal relations, the concept of ‘dividuality’ as against individuality, and gender roles against the backdrop of dementia are exemplified using experiences of individuals the author met during her journey. The book concludes with a poignant note on ‘romance’ at different levels.
This is an experiential account as well as a scientific study of dementia. For those who are new to dementia and Alzheimer's, this book may be every bit as daunting as the condition itself. As with most dementia journeys, the ones described are heart breaking to read, standing helplessly by the side. Understandably some of it is painful reading but anyone who has experienced dementia in their loved ones would not find any part of it an exaggeration. All chapters have a thoroughly engaging style and narrative approach. The author, while taking us through her journey along experiences of dementia, smartly intertwines it with the journey of those whom she travels along with. We would definitely recommend this book for all types of readers: general, academics and researchers, or those who have an interest in ageing or dementia.
It is reassuring the author's feelings have not biased her analysis as she had feared and she definitely had kept her promise to be evocative, analytical and emotive in her writing. The author reports she enjoyed the intellectual journey – it has also been a worthwhile journey for the readers who accompanied her.