All time travellers – Dr Who included – will enjoy this book. From the opening chapters, which transported us back to 1992 and finally forwards to 2050 (when, it is predicted, there will be five million elders in nursing homes in the USA), we are invited to observe some terrifying visions on a journey to discover dementia care in the USA. The research reported in this book was conducted between 1992 and 1994, when the kind of terminology used was ‘an apocalyptic demography’ (when) ‘the popular imagination is … consumed with terror about Alzheimer's disease’ (thus) ‘in the absence of a cure we are left with a sense of nihilism’ (pp. 2–3). But despair not, for despite its long gestation, this is an intriguing work which repays close study.
The book has three parts. The first outlines theoretical and methodological issues in dementia care and describes the setting and its social and economic lineage in some detail. The setting was a large urban nursing home, with two units for people with advanced dementia, on the east coast of the United States. The units were identical in layout but different in the philosophical approaches to care. ‘Snow One’ had adopted a biomedical approach to enable disturbed behaviours to be controlled and the other. ‘Snow Two’ practised a person-oriented philosophy that paid attention to how the person may have been communicating through their behaviours. The research method was qualitative and ethnographic, incorporating participant observation studies of medical records, and interviews with staff, family, and where possible, residents. This was a time when the systematic approach of Dementia Care Mapping (DCM) had barely emerged from Bradford, but elements of it can be identified. The power structure of staff is observed to fall in the traditional, gender, race and class lines of larger society: virtually all nurses and nursing assistants being black and female and nearly all doctors male and white. Of note is a group of personal companions employed by families to spend time with residents and help with their care.
Part 2 presents ethnographic case studies of the residents. The analysis begins with the approach to care in Snow One, reflecting the rigid attitude of the head nurse. There are telling vignettes of forbidden romance and inflexible bathing regimes, which resulted in one unfortunate case in the death of a resident. Snow Two, however, was led by someone who valued flexibility and attention to individual needs. Three examples are given where the point of the treatment and care is to determine what has created the problem so that it can be addressed and its impact minimised, thus improving social functioning. Ten prescriptive conclusions and recommendations emerge from a comparison of the two units. Some state the obvious, as with ‘person-centred care giving is superior to task-oriented care-giving’ (p. 205). Others are more portentous: ‘dementia care-giving is a demanding practice of consuming work in which both care-receiver and care-giver need careful tending’ (p. 212). I think the reader will get the gist.
Part 3 is a devastating critique of the economics and structure of the nursing-home industry in the United States at federal and state levels. Regrettable parallels with the UK can be drawn, with evidence of regulation favouring the survival of for-profit conglomerates, despite their greater deficiencies with high staff turnover and no career structure. The final chapter, ‘Towards a new vision of dementia care’, cites intriguing examples of new approaches in the USA, including the shift towards assisted living. The Quaker movement is cited as a leader in de-medicalised settings of care, as at Chandler Hall, Newtown, Pennsylvania. Inspirational examples of culture change are pointed to in the Nursing Home Pioneers, the Individual Care Model and Resident Directed Care. The Eden Alternative, established by Dr William Thomas, and more recently his Green House Project, which target Medicaid funding, are of interest and may warrant further investigation. Readers are finally exhorted to move to a moral economy of long-term care in order to maximise the possibility of a decent life for people throughout their lives. Amen to that. More starkly, the author concludes, ‘if we don't we will continue to subject people with dementia to continued structural violence and genocidal-like behaviour’ (p. 257). Despite its tone and language, and although there has been some change since the 1990s, this book is a clear wakeup call to the nursing-care industry, particularly in the United States but elsewhere too. Clinicians, undergraduate students with an interest in long-term care and policy makers will all find something of interest here.