“What is my experience of what I am in relation to people who I have shared my life with for the last 34 years?”: exploring care relationships at the end of life in two life-sharing communities for people with a learning disability

Abstract

Old age is still an under-researched stage in the lives of people with a learning disability. Providing support to people towards the end of their lives can be challenging for services and involves complex ethical decision-making processes. This study explores the experiences of social care staff in two life-sharing communities where adults with a learning disability and staff live together. Four main themes were identified, highlighting different dimensions of care. These included an emphasis on relational care, responsive care and collaborative care, and an acknowledgement of barriers to care and caring that allowed people to live and die within the communities.