Advice for dementia carers: A critique of the literature

Abstract

Although hundreds of advice manuals for dementia carers have been published, most have serious limitations. They emphasize the various problems family members experience without noting the social and political context within which caring unfolds. As a result, they eschew structural reforms in favor of individual solutions, including self-care. The manuals also encourage carers to detach emotionally from people with dementia by viewing them in terms of their disease. In addition, the books hew so closely to the medical model of dementia that they ignore newer perspectives. Narratives by people with dementia provide a critical corrective. Those works argue that the disproportionate attention directed toward carers has eclipsed the perspective of people with dementia, that people remain individuals despite a dementia diagnosis, that issues of stigma and discrimination shape the experience of living with dementia, that more emphasis should be placed on promoting the autonomy of people with dementia, that they are entitled to reasonable accommodations, and that they should have more opportunities for growth.

I have reviewed the policies detailed in the guide and have no competing interests.