How bereaved adult-children of parents with dementia use end-of-life caregiving experiences to inform their personal advance care planning

OBJECTIVES: The U.S. public has low rates of Advance Care Planning (ACP), the process of outlining personal healthcare preferences to plan for future decisional incapacity. Intensive experiences navigating end-of-life medical decision-making while caregiving for a family member living with dementia may influence former caregivers' ACP engagement. We assessed how bereaved adult-child dementia caregivers reflect on end-of-life caregiving experiences to shape their personal ACP beliefs, behaviors, and intentions. METHODS: We conducted a reflexive thematic analysis with midlife bereaved adult-child dementia caregivers (N = 32, mean age 56.90) using transcripts from 90-minute semi-structured interviews. RESULTS: Participants actively contemplated ACP following their parents' death, referring to their end-of-life caregiving experiences as guideposts for issues to anticipate and opportunities to enhance receipt of healthcare during serious illness or incapacitation. Themes revealed that perceived outcomes of parents' ACP informed personal ACP engagement, and end-of-life service use for parents' healthcare shaped personal planning strategies. Bereaved caregivers whose parents engaged in formal ACP made differential judgments of its utility for themselves based on end-of-life outcomes: goal-concordant care motivated engagement and goal-discordant care disincentivized engagement. Participants who were contemplating personal ACP emphasized the importance of communication about preferences and values above and beyond the completion of formal documentation. Some participants, however, did not draw links between their caregiving experiences and personal ACP and used beliefs about their personal health to delay contemplation. DISCUSSION: This work provides insight into how the dementia caregiving experience can drive ACP attitudes and behaviors and highlights the importance of ACP engagement within an aging society.