The Pre-Diagnosis Stage of Dementia: Couples' Experiences
Research type
Research Study
Full title
Making Sense Before Diagnosis: An Interpretative Phenomenological Analysis of Couples' Experience During the Pre-Diagnosis Stage of Dementia
IRAS ID
333084
Contact name
Magdalena Pribanova
Contact email
Sponsor organisation
University of Edinburgh
Duration of Study in the UK
0 years, 9 months, 1 days
Research summary
Dementia is not an individual experience (Robinson et al., 2005). Around 60,000 people with dementia live at home in Scotland, many of whom live as part of a couple. This means that both members within the couple will be experiencing and coping with dementia-related changes and challenges.
Many studies have investigated the experiences of couples after they have received a diagnosis. These studies have helped us understand the transitions of the dementia journey and ways couples cope together and separately. Currently, there are no studies that have studied the pre-diagnosis stage, in which couples have become aware of difficulties, are undergoing investigations but have not had a formal diagnosis or the offer of subsequent support. We are currently limited in our understanding of what couples go through and the difficulties they face together and as individuals during this time.
The aim of this study is to document couples’ experiences during the pre-diagnosis stage of dementia.
The study is hoping to interview couples who are receiving care from the NHS Fife Older People Community Mental Health Team. Interviews will be carried out with both members of the couple for approximately 45-60 minutes, using an interview guide to ask about their experiences. The interviews will be analysed using Interpretative Phenomenological Analysis. This approach aims to understand people’s experiences from their point of view. Interviewing the person going through a dementia assessment and their partner will allow us to gain an insight into what is going on for the couple, the ways they are coping with changes and the prospect of being diagnosed with dementia. All interviews will be confidential. As this is often a difficult and emotive topic, participants will be offered an opportunity to debrief after the interview and be provided a list of services they can access for further support.
The results from the study will help health and social care professionals understand the experiences and needs of people and their spouses during the pre-diagnostic stage of dementia. This type of understanding can help professionals and services think about ways in which they can best meet the needs of their patients and their caregivers.
REC name
South Central - Berkshire B Research Ethics Committee
REC reference
24/SC/0023
Date of REC Opinion
18 Jan 2024
REC opinion
Further Information Favourable Opinion