An occupational perspective of the lived experience of familial dementia caregivers: A thematic review of qualitative literature

Hooper, Emma and Collins, Tracy (2019) An occupational perspective of the lived experience of familial dementia caregivers: A thematic review of qualitative literature. Dementia, 18 (1). pp. 323-346. ISSN 1471-3012

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Abstract

Dementia caregiving is thought to have a negative impact on health and wellbeing. This critical review of qualitative literature explored the lived experience of familial dementia caregivers from an occupational therapy perspective. The method was informed by systematic review and qualitative research methodologies and was structured within the occupational dimensions framework of doing–being–becoming–belonging. A comprehensive search of major databases was undertaken which identified 484 studies on the topic; 14 met the inclusion criteria and were included in the review. Ten themes emerged within the doing-being-becoming-belonging framework from the analysis of the studies. The occupational participation of caregivers is conveyed within the ‘doing’ domain. Ways in which caregiving impacts upon opportunities for self-nurture are presented within the ‘being’ domain. The ‘becoming’ domain elucidates ways in which caregivers redefine themselves, their values and their priorities through their caregiving role. The ‘belonging’ domain depicts ways in which caregivers’ connections with their care recipient and others are shaped over time. Practice implications for health and social care practitioners who work with familial dementia caregivers are presented in light of the findings.

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