"She starts to be her old self again" : familial reflections on pre-and post-onset identity in people with Alzheimer's and behavioural-variant frontotemporal dementia

Sophia A. Harris, Amee Baird, Celia B. Harris

Research output: Contribution to journalArticlepeer-review

Abstract

We investigated perceptions of identity in Alzheimer’s disease and behavioural-variant frontotemporal dementia. We asked family members of people with dementia to describe them before and after onset of the disease, comparing across type (Alzheimer’s disease versus behavioural-variant frontotemporal dementia) and time period. Family members’ perceptions of people with dementia changed over time. Compared with Alzheimer’s disease, behavioural-variant frontotemporal dementia was perceived to cause greater disruption to identity and more often associated with negative moral traits. We found a relationship between assessments of moral character and perceived self-continuity. Our data revealed different ways family members navigate stability and change in the identity of their loved ones with dementia.
Original languageEnglish
Pages (from-to)1-19
JournalInternational Journal of Care and Caring
Publication statusE-pub ahead of print (In Press) - 2022

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