Resilience in couples following a diagnosis of young-onset dementia
Research type
Research Study
Full title
Exploring Resilience in Cohabiting Couples where One Person has a Diagnosis of Young-Onset Dementia: A Constructivist Grounded Theory Study
IRAS ID
291619
Contact name
Warren Donnellan
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 3 months, 24 days
Research summary
Research Summary
This study will aim to explore the concept of resilience in cohabiting couples where one individual has received a diagnosis of young-onset dementia. This will include considering what resilience means to each person in the couple, how this has developed, and how the concept applies following a diagnosis of dementia.
Research to date has typically investigated levels of burden experienced by carers when supporting a person living with a dementia. However, not everyone experiences stress or feelings of burden in the same way. The term burden also suggests that caring is a negative experience. An alternative way of thinking about people’s responses to difficulties or changes in their life is through resilience.
The study will be advertised to participants through relevant NHS sites (e.g. Community Mental Health Teams). Up to 12 cohabiting couples will be recruited and asked a series of questions to guide this exploration in a semi-structured interview. Those who are eligible to take part include: those who live with their partner (where one person has a diagnosis of young-onset dementia); the person living with the dementia being diagnosed at least 6 months prior to the interview; participants need to have capacity to consent to taking part in the study; participants need to have been a part of their couple for at least three years so the relationship is well established; participants to be proficient in the use of English.
Due to the ongoing covid-19 context, interviews will take place via a video software platform. Therefore, another eligibility criteria will be for participants to have access to an internet connection and device such as a computer which also has a camera and a microphone.
Responses will be analysed using constructivist grounded theory as a way of developing a theory to explore resilience following a diagnosis of young-onset dementia.
Summary of Results
This study sought to explore the experiences of cohabiting romantic couples, where one person in the couple was living with young onset dementia (YOD), using the ecological resilience framework (Windle & Bennett, 2011). This framework identifies resources that are either missing or available to people, either within themselves or in their wider environments, such as social support. The use of Constructivist Grounded Theory as an analytical method enabled the development of the ecological resilience framework by incorporating couplehood (i.e., as the feelings of belonging experienced by partners within a relationship; Kaplan, 2001), reflecting the resources available to those living with YOD. An additional tool was employed called ecomapping which allowed for further exploration of the social support and wider systems couples had access to by representing these in a diagram, or map.
Couples attempted to maintain their pre-dementia lives and routines but also acknowledged the impacts of dementia. Factors which facilitated feeling resilient included the use of humour and accessing social support from friends, peers, and family. Those factors which hindered feeling resilient included prognosis information provided at the time of diagnosis and the lack of young onset dementia-specific support.
A theoretical model was created to depict the resilience framework for couples living with YOD as a diagram. This developed framework highlights numerous areas in which couples living with YOD can be supported to aid their dementia journey, helping them to have the best quality of life possible. Numerous clinical implications are indicated, such as consideration of coping strategies, or offering post-diagnostic support specific to people living with YOD.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
21/NW/0179
Date of REC Opinion
16 Jul 2021
REC opinion
Further Information Favourable Opinion