"How will we cope?" Couples With Intellectual Disability Where One Partner Has a Diagnosis of Dementia.

BACKGROUND AND OBJECTIVES: People with intellectual disability are at increased risk of dementia at an earlier age. This is the first study to explore experiences of couples with an intellectual disability when one partner has dementia. RESEARCH DESIGN AND METHODS: Four people with intellectual disability whose partner had dementia and one partner who had both an intellectual disability and dementia took part in narrative life story interviews. One of the interviews was conducted as a couple giving direct perspectives from 4 couples overall. Additionally, 13 semistructured interviews were conducted with 9 social care professionals and 4 family members. This provided perspectives of the relationships of a further 4 couples, which collectively led to data on 8 couples. RESULTS: The emotional impact of a dementia diagnosis, planning for the future, and fear of separation was noted by couples with intellectual disability. Partners took on caring roles thus challenging views of being solely care-receivers. Families spoke of commitment and longevity in relationships, whilst social care staff highlighted how their own information needs changed recognizing the importance of intellectual disability and dementia-specific knowledge. DISCUSSION AND IMPLICATIONS: Couples with intellectual disability continue to enjoy intimate relationships into later life and will face common conditions in older age including dementia. Those who provide support need to ensure that they are sensitive to the previous experience and life story of each couple and have specific knowledge of how dementia can affect people with intellectual disability.

Revisiting Photovoice: Perceptions of Dementia Among Researchers With Intellectual Disability.

There is limited global evidence exploring perceptions of dementia among people with intellectual disabilities. This article presents findings from the first known study where an inclusive research team, including members with intellectual disability, used photovoice methodology to visually represent views of people with intellectual disabilities and dementia. Drawing on Freire's empowerment pedagogy, the study aims were consistent with global photovoice aims: enabling people to visually record critical dialogue about dementia through photography and social change. We investigated the benefits and challenges of photovoice methodology with this population and sought to identify perspectives of dementia from people with intellectual disabilities. Data collected identified issues such as peers "disappearing" and the importance of maintaining friendship as dementia progressed. Although reaching policymakers is a key aim of photovoice, this may not always be achievable, suggesting that revisiting Freire's original methodological aims may lead to improved outcomes in co-produced research with marginalized groups.