“How will we cope?” Couples with intellectual disability where one partner has a diagnosis of dementia.

Abstract

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 four couples overall. Additionally, thirteen semi-structured interviews were conducted with nine social care professionals and four family members. This provided perspectives of the relationships of a further four couples which collectively led to data on eight 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 recognising 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.