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    Relatives' Experiences of Frontal-Variant Frontotemporal Dementia

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    Publication date
    2013
    Author
    Oyebode, Jan R.
    Keyword
    Dementia
    ; Families
    ; Primary partner
    ; Caregiving
    ; Interpretative phenomenological analysis; IPA
    ; Qualitative analysis
    ; Relationships
    ; Frontal-variant frontotemporal dementia; fvFTD
    Peer-Reviewed
    yes
    
    Metadata
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    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.
    URI
    http://hdl.handle.net/10454/5662
    Version
    published version paper
    Citation
    Oyebode JR, Bradley P and Allen JL (2013) Relatives' Experiences of Frontal-Variant Frontotemporal Dementia. Qualitative Health Research. 23(2): 156-166.
    Link to publisher’s version
    http://doi.org/10.1177/1049732312466294
    Type
    Article
    Collections
    Health Studies Publications

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