If there is one condition that represents the “burden of care”, it is Alzheimer’s disease. Empathy is primarily directed towards the caregiver, not the patient; and it is especially the family caregiver who receives empathy. But how do professional caregivers experience caring for people with dementia? In Living Before Dying, trained nurse and anthropologist Janette Davies draws on fieldwork in a care home for old people in Greater Oxford to reveal the intimate interconnection between the professional caregiver’s and the resident patient’s quality of life.
The study abounds with disturbing details of a routinised and time-pressured culture of care: a patient served a banana cut on a place mat; a patient seated on a toilet soiled by slopping from bedpans emptied previously. Readers have long learned such harrowing details from news reports and the interventions of charities. But Davies breaks new ground with her attention to “the total interdependence between employees and residents”. Even more, she shows how strongly management decisions influence the caregiver’s – and by extension the patient’s – daily routines and experiences. Time pressures condition the infantilisation of patients, because “mutedness facilitates task-centred completion of the job”.
Davies’ reference to the height of the BSE (bovine spongiform encephalopathy or “mad cow disease”) crisis suggests that the study took place during the early to mid-1990s. This was the time when Tom Kitwood and the Bradford Dementia Group began advocating for the rights of patients and consideration of biopsychosocial approaches to dementia, and here Davies could have framed her findings more critically. Similarly, some reflective afterthoughts on how her study speaks to the situation of care and care homes in 2017 would have enriched this book.
Take, for example, the fact that the management’s ideal of a “home from home” was unachievable because of economic constraints. This powerfully demonstrates how care planning has failed older people for decades: although care homes have shifted towards more person-centred accommodation since the mid-1990s, places that really feel like a “home” for their residents continue to be rare and unaffordable for many.
Or take Davies’ reflections on the “remnants” of what Erving Goffman termed the “total institution”. Together with her findings on caregivers’ perceived powerlessness, they provide much ammunition to support key points made in the 2014 Rowntree round-up on “pay, conditions and care quality in residential, nursing and domiciliary services”: “Working conditions and organisational culture are essential…to ensuring low-paid staff feel valued and satisfied, recruitment and retention of talented staff is maximized…staff continuity is needed to ensure relationship-building between care worker and service user that is of vital importance to care quality”. Davies’ work illuminates how essential empathy for professional carers is and shows how this supports the patient. Paying caregivers the living wage is one step towards improving care; the same is true of ensuring opportunities for development and adequate training that value the caring vocation.
Living Before Dying is an important and timely contribution to a rising body of social scientific and bioethical work about dementia, including the anthropology of senility. It should be read by all those who want care to improve for older people, with and without dementia.
Martina Zimmermann is a neuropharmacologist and health humanities researcher, and the author of The Poetics and Politics of Alzheimer’s Disease Life-Writing (2017), available open access thanks to Wellcome Trust funding.
Living before Dying: Imagining and Remembering Home
By Janette Davies
Berghahn, 172pp, £85.00
Published 15 August 2017