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

Abstract

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 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.

Engaging persons with dementia in advance care planning: Challenges and opportunities

“…These individuals suggested that opportunities to sensitively learn about the elements of their condition and the decisions they or their families may face could encourage such exchanges. Unfortunately, such sensitivity was not always experienced, serving as a deterrent to pursue ACP further (Ryan & McKeown, 2020;Sellars et al, 2019).…”

“…Many more persons with dementia and their families saw future care planning as threatening. For these individuals, planning for the future meant focusing on deterioration, an emotionally charged process that threatened their tendencies to manage deterioration by living in the moment and focusing on their capacities rather than their limitations (Dickinson et al, 2013;Ryan & McKeown, 2020;Sellars et al, 2019). Families likewise saw it as their roles to protect their relatives from the devastation of their losses and devoted much time and energy to preserving a sense of capacity.…”

Conserving Habitus: Home, Couplehood and Dementia

“…The couple as a unit to varying degrees may engage in emotion work and, especially, in relation to their future as a couple together at home. This emotion work may take the form of, for instance, not talking about future, avoiding making plans in form of advance directives (Ryan and McKeown 2018) and externalizing dementia (Hellstrom et al: 2007). In so doing, staying together at home as a couple is prioritized.…”

Multidisciplinary Clinicians and the Relational Autonomy of Persons with Neurodegenerative Disorders and an Advance Care Plan: A Thematic Analysis

“…16 An individual’s right to autonomy and maximal ownership of healthcare decisions is often reflected in modern codes of ethics 17 and global policy. 18 Further, the Medical Board of Australia has linked respecting a person’s rights to make their own decisions, including via ACP, with good medical practice. 19 When working effectively, ACP support a person’s autonomy by representing the person who exercised agency whilst competent, in order to guide decisions whilst incompetent.…”