A socio-legal investigation into making plans for dying: Perspectives of people with dementia

This chapter draws from research investigating how people with dementia are affected by mental capacity law in England and Wales. We outline the legal frameworks useful for making decisions, and how these are linked with future planning. We conducted a thematic discourse analysis of 20 interviews with people with dementia and their informal carers to understand how interviewees plan for the future, including end-of-life plans. The three themes of (1) relational care plans, (2) delayed and disrupted plans and (3) desired control of the future examine how legal plans are/are not made relevant for people with dementia. Interviewees understood legal decision-making and planning tools in a limited way due to social and legal landscapes. This reflects law concepts of individualistic personhood, and the relational nature of future planning, which resulted in the limited impact of legal tools. Within, ‘desired control of the future’, our analysis shows how interviewees express desire to control the end of their life, extending to assisted suicide. Interviewees are knowledgeable about the difficulties of choosing when to die and resist this unpredictability. This chapter contributes to debates for a more nuanced sociological and legal understanding of rights, ageism, death culture and dementia.