Relatives' experiences of frontal-variant frontotemporal dementia
Oyebode, Jan R Bradley, Paul Allen, Joanne L
Oyebode, Jan R
Bradley, Paul
Allen, Joanne L
Abstract
In this article we address how relatives of people with frontal-variant frontotemporal dementia (fvFTD) experience the illness and how it impacts their lives. We interviewed 6 participants and carried out interpretative phenomenological analysis. We report on 11 themes that reflect distinctive challenges. Five themes relate to witnessing bizarre and strange changes: changed appetites and drives, loss of planning ability, loss of inhibition leading to social embarrassment, risky behavior, and communication problems. Four relate to managing these changes and two to the impact on the person and his or her relationships. Relatives must live with unusual changes in the person with fvFTD and the stigma this carries in social settings. They learn to act assertively for their relatives and put effort into promoting quality of life, using strategies adapted for fvFTD. Relatives grieve the loss of the person with fvFTD and their mutual relationship, but nonetheless find sources of solace and hope.
MIDER Authors
Affiliations
University of Birmingham, Edgbaston, Birmingham, United Kingdom; Dudley and Walsall Mental Health Trust, Walsall, United Kingdom; Birmingham and Solihull Mental Health Trust, Birmingham, United Kingdom
Citations
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Date
2012-11-12
Type
Article
Subject
Citation
Oyebode JR, Bradley P, Allen JL. Relatives' experiences of frontal-variant frontotemporal dementia. Qual Health Res. 2013 Feb;23(2):156-66. doi: 10.1177/1049732312466294. Epub 2012 Nov 12. PMID: 23150527.