Experience of living with someone with dementia. Version 1.
Research type
Research Study
Full title
The experience of living with someone with dementia who finds it difficult to make a positive contribution in social situations.
IRAS ID
220318
Contact name
Ramira Fernandes
Contact email
Sponsor organisation
University of Birmingham
Duration of Study in the UK
1 years, 7 months, 17 days
Research summary
Relationship continuity occurs when the person and relationship are viewed as continuous with the person and relationship that existed prior to the onset of dementia. Research has found that person-centred approaches and better adjustment to the caring role are associated with relationship continuity; whilst lack of person-centred approaches, feelings of resentment and entrapment are associated with relationship discontinuity. Despite the above findings, little is known about why some partners/spouses perceive continuity in the relationship, but others perceive discontinuity. These differences may arise as a result of differences in the symptoms of dementia shown by the person with dementia and in their spouse's/partner's experience and interpretation of those symptoms.
The present study is a qualitative study focusing on how spouses/partners (of individuals with dementia) experience and make sense of changes in their spouse's/partner's expression of positive emotions, particularly those expressive of love and affection, and on the implications of that experience and sense-making for their perception of their spouse/partner and the relationship they share.
Six to ten participants will be recruited from older adult community services within Birmingham and Solihull Mental Health NHS Foundation Trust, Black Country Partnership NHS Foundation Trust and Dudley and Walsall Mental Health Partnership NHS Trust.
The research will involve two semi-structured interviews using a topic guide. The first interview will ask participants to focus on their life and relationship together before the dementia and how things have changed since the dementia. The second interview will focus in more depth about their experience of someone who is becoming more socially withdrawn and unexpressive.
Interviews will be audio recorded using a Dictaphone and transcribed in full. Interpretative Phenomenological Analysis will be used to analyse the data. There will be a specific focus on the implications of emotional reciprocity for the perception of continuity and discontinuity with the relationship.
REC name
West Midlands - Solihull Research Ethics Committee
REC reference
17/WM/0218
Date of REC Opinion
11 Aug 2017
REC opinion
Further Information Favourable Opinion