Relationship Challenges in Behavioural-Variant Frontotemporal Dementia

  • Research type

    Research Study

  • Full title

    Exploring Relationship Continuity in the Context of Behavioural-Variant Frontotemporal Dementia

  • IRAS ID

    320234

  • Contact name

    Stephanie Howarth

  • Contact email

    s.l.howarth@bham.ac.uk

  • Sponsor organisation

    University of Birmingham

  • Duration of Study in the UK

    1 years, 6 months, 30 days

  • Research summary

    The overall aim of this qualitative study is to understand the impact of challenging behaviours and personality characteristics on the spousal/partner relationship in the context of Behavioural-Variant Frontotemporal Dementia (bvFTD). Due to the effected brain regions, people who are diagnosed with this disease experience significant changes in their personality and behaviours which may be very distinct from their pre-morbid presentation. This can cause substantial difficulties within their closest relationships, especially with spouses/partners who are likely to take on a caring role.

    Six-fifteen spouses/partners of individuals with a diagnosis of bvFTD will be recruited from either Community Mental Health Teams supporting the affected spouse or online via Join Dementia Research or the Alzheimer’s Society ‘Talking Point’ forum. Individuals will be interviewed for approximately 45-90 minutes using a semi-structured interview schedule informed by the research questions and literature on the concept of relationship continuity. Respectively, relationship continuity or discontinuity are the experience of a relationship as remaining largely the same or as radically different by the unaffected spouse/partner (Riley et. al., 2013). Interviews will be transcribed and analysed in line with Braun & Clarke’s (2021) six-stages for Reflexive Thematic Analysis. Participants will be given several options for interview location including in-person either at an identified NHS site or in their own home or, via a video-conferencing platform.

    Carer health and wellbeing is vitally important so it is hoped that by speaking with spouses/partners about their experiences, we can identify the best way to support their wellbeing in the face of inevitable challenges caring for a loved one with bvFTD.

  • REC name

    Yorkshire & The Humber - South Yorkshire Research Ethics Committee

  • REC reference

    23/YH/0073

  • Date of REC Opinion

    27 Apr 2023

  • REC opinion

    Further Information Favourable Opinion