A new book that reframes dementia as a social experience rather than a ‘burden’ or ‘deficit’ offers some thought-provoking insights into the social and personal changes that are needed to improve life for people with dementia and those who care for them.
Edited by Sydney University social anthropologist Gaynor Macdonald and associate professor of social policy at the University of Western Sydney Jane Mears, Dementia as Social Experience: Vauling Life and Care explores public perceptions, marginalisation of carers, family relationships, decision making, supporting better long-term outcomes, the exploitative nature of care and why “person-centred care” isn’t enough.
It looks at how a diagnosis of dementia affects not only those living with the illness but also the estimated 1.2 million people involved in their care.
The book contains contributions from leading researchers in the fields of dementia, aged care, palliative care, law, nursing and community health, as well as people with direct experience in the aged care industry and as carers.
“We challenge the idea that we should fear dementia or that, once diagnosed, ‘life has virtually come to an end,” Macdonald and Mears write.
“To imagine a liveable life with dementia is, by implication to imagine a more liveable society, a more caring society for all citizens.
“Instead of starting with dementia as a cruel, feared and vilified disease, let us start with a revaluing of vulnerability and care as intrinsic to all life.”
A troubling picture of how society deals with dementia
Launching the book on Wednesday at a dementia symposium at Sydney University, Professor Emerita Raewyn Connell said one of the book’s central messages was that “all is not well in the care of people with dementia”. Problems included the prevalent medical model of dementia as a ‘deficit’ and the construction of care as a profit-making industry, she said.
“The book offers us stories of people involved in situations of dealing with their own dementia and of family carers navigating new problems in their lives,” Professor Connell told guests at the launch.
“It also tell us a somewhat more sinister story of the conditions for the malprovision of care … the existence of fear, of disgust or of dismissal of the problem. In that sense it paints quite a troubling picture of how society deals with dementia.”
This book is a fresh and quite radical addition to the existing literature on dementia. It’s written with academic rigour but is also a compelling and easy read, making it an invaluable resource for researchers, the aged care industry and the 1.2 million Australians involved in the care of someone with dementia.
Dementia as Social Experience: Valuing Life and Care, Edited by Gaynor Macdonald and Jane Mears, is published by Routledge. Available as hardback or eBook here.
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