Sustaining Relationships - Learning Disability and Dementia (V1)
Research type
Research Study
Full title
Enhancing the sustainability of relationships and support among people with a learning disability and dementia
IRAS ID
289105
Contact name
Karen Watchman
Contact email
Sponsor organisation
University of Stirling
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
The idea for this study came from a married man with a learning disability who had a diagnosis of dementia in 2019. This led to further discussion between the research team, others with a learning disability, families and service providers highlighting the gap in evidence, which has led to a gap in information and support in practice. \n\nPeople with a learning disability are living longer, enjoying relationships and marrying, all of which is to be celebrated. This two-year study will provide the first known evidence in sustaining relationships when both partners have a learning disability and one has a dementia diagnosis. This is in response to the high incidence of dementia which disproportionately affects older people with a learning disability. No studies have been conducted with couples who have a learning disability when one partner has a diagnosis of dementia. It is not known what coping mechanisms are developed or how couples wish to be supported. New evidence of vital knowledge to inform practice with, and support of, this population will be identified at the intersection between learning disability and dementia with implications for integrated support across families, health, allied health and social care sectors. \n\nThis is a qualitative study that will seek the views of at least one partner from ten couples when one has a diagnosis of dementia, 12 family members of one or both partners (sibling or parent), and 16 social care support staff of one or both partners (where appropriate). Semi-structured interviews will be conducted with social care staff and family members. Data will be sought from couples using focused conversations which means fewer direct questions and more use of tools, such as concentric circles and Ketso to visually share experiences. Thematic analysis will generate a qualitative overview of support and needs.\n\n
REC name
Social Care REC
REC reference
20/IEC08/0042
Date of REC Opinion
21 Jan 2021
REC opinion
Further Information Favourable Opinion