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

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.