Stand by Me - Perspectives of older couples with a learning disability when one partner has dementia: identifying support needs of carer dyads

Abstract

The risk of dementia at an earlier age among people with a learning disability, especially people with Down’s syndrome, is known. Experiences of carer dyads in dementia care is typically limited to couples who do not have a learning disability, with no previous evidence base informing how each partner with a learning disability may best be supported and how relationships may be sustained. Prior to this research, it was not known what coping mechanisms were developed or how couples wished to be supported. Evidence to inform practice was needed to support not just couples with a learning disability, but also staff and family members who find themselves at the intersection between learning disability and dementia. This study used life story interviews to identify the perspectives and support needs of couples with a learning disability where one partner has/had dementia. Social care support staff and family members of one or both partners were also interviewed with participants recruited from Scotland and England. Thematic analysis was conducted highlighting struggles for some couples to have their relationship accepted and past experiences of group living or institutional care which influenced perceptions of longer-term support. Factors that supported sustainability in relationships included access to consistent support networks, support to understand the diagnosis, recognition of identities - firstly as wife and husband or partners, later a shift to carer, and counselling for people with a learning disability. Anonymised interview transcripts from 5 participants with a learning disability, four family members and nine learning disability support staff, plus NVivo analysis and accessible study information are provided within this dataset.