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Personhood in dementia care

Developing a research agenda for broadening the vision

University of British Columbia, Canada

Alison Phinney

University of British Columbia, Canada

Andre Smith

University of Victoria, Canada

Jeff Small

University of British Columbia, Canada

Barbara Purves

University of British Columbia, Canada

Joann Perry

University of British Columbia, Canada

Elisabeth Drance

University of British Columbia, Canada

Martha Donnelly

University of British Columbia, Canada

Habib Chaudhury

Simon Fraser University, Canada

Lynn Beattie

University of British Columbia, Canada

Dementia has been understood primarily as a biomedical phenomenon with a trajectory of irrevocable decline related to neurodegenerative changes. However, growing evidence suggests that the performance and behaviour of persons with dementia are not exclusively determined by neuropathology but are also influenced by personal histories, social interactions and social contexts. This evidence shifts attention from the disease process to the need for a more in-depth understanding of the place of personhood in dementia care. Despite its intuitive appeal however, there is limited empirical research grounding this approach to care. This article articulates a framework for organizing research in this area that is based on a critical review and synthesis of research. It encompasses three interrelated and intersecting domains of inquiry: the subjective experience of the person with dementia, the immediate interactional environment and the broader socio-cultural context. Each domain encapsulates a unique but interrelated dimension of a person-centred approach to dementia care.

Key Words: dementia • interactional environment • person-centred care • personhood • socio-cultural context • subjective experience

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