Title: Perspectives of older couples with a learning disability when one partner has dementia: identifying support needs of carer dyads.
Funder: Dunhill Medical Trust

Abstract: Background - People with a learning disability are enjoying longer lives; a 2019 survey of 1240 people with a learning disability in Scotland identified that 2.8% were married and 16.4% in a relationship. In this study, participants already live with a lifelong disability, but are facing additional adversity following the diagnosis of dementia in themselves or their partner. 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. This is a population at increased risk of dementia at a younger age, the average being early fifties for people with Down syndrome, yet no evidence exists informing how each partner with a learning disability may best be supported or how relationships may be sustained, resulting in increased pressure on couples, families, and health and social care providers. Aim – To gain insight into this new research landscape of older couples with a learning disability when one partner has dementia, in order to enhance the sustainability of relationships and support. Design and method – The concept for this proposal came from a married man with a learning disability and dementia; we will continue this participatory approach to ensure the meaningful inclusion of older people with a learning disability. A qualitative and exploratory design will ensure that multiple perspectives are gathered within an overarching framework of social relationships and support. 16 semi-structured interviews will be conducted with social care staff and 12 family members. Biographical and empirical data will be sought from 10 carer dyads using focused conversations. Thematic analysis will generate a qualitative overview of support and needs. Anticipated outcomes - The study will provide the first known evidence among couples in response to the high incidence of dementia which disproportionately affects older people with learning disabilities. New evidence of knowledge to inform practice will be identified at the intersection between learning disability and dementia with implications for integrated support across health, allied health and social care sectors. An understanding of the dyadic perspective will support older people with a learning disability to sustain long-term relationships as health needs change.

Lay abstract: The idea for this study came from a married man with a learning disability (Andrew Doyle) 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 to develop this proposal. The study is important as people with a learning disability are living for longer. Even as recently as the 1980s, life expectancy remained below 20 years for people with Down’s syndrome whereas this is now 60+. With longer life has come knowledge that at least one third of individuals with Down’s syndrome in their 50s will develop dementia, with more than half affected aged over 60. People with other types of learning disability are also more likely to develop dementia earlier although not as early as people with Down’s syndrome. Living longer means that individuals are more likely to enjoy a long-term relationship with a partner and some will be married. No known 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. This differs to older people without learning disabilities where we know of resulting strain in a changing relationship, difficulty in accessing appropriate support and the importance of understanding the perspective of both partners. We will strengthen the research by gathering information from different groups of people who know one or more of the partners in a relationship. This will provide data from: • semi-structured interviews with 16 staff in social care support organisations • semi-structured interviews with 12 family members – parents or siblings • both partners in the relationship (where possible): o biographical information: age, marital/relationship status, gender, type of learning disability, type of dementia, housing/social circumstances o focused conversations enabling both partners with a learning disability (where possible) to describe their experiences. This approach means fewer direct questions and more use of tools to visually share experiences. By identifying the support needed to sustain their relationship, this study will improve the wellbeing of older people with a learning disability. By sharing information about how people want to be supported, we will improve the effectiveness of social care delivery. Findings will be shared in accessible ways with academic, practice and policy audiences, and most importantly with people who have a learning disability.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH;NEUROLOGICAL