Couples affected by dementia and their experiences of advance care planning: A grounded theory study

Global policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology this study explores the ways in which co-residing couples considered ACP. Specifically it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for the future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end of life issues whilst making efforts to ‘live well’. Importantly the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised.