What question did this study set out to answer?

This study examines how experiences of adult-child caregivers of parents with dementia influence their own advance care planning decisions.

May 27, 2026

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

Key Points

This study examines how experiences of adult-child caregivers of parents with dementia influence their own advance care planning decisions.
Conducted a reflexive thematic analysis with midlife bereaved adult-child dementia caregivers (N=32, mean age 56.90).
Used transcripts from 90-minute semi-structured interviews for data gathering.
Participants reflected on their parents' end-of-life experiences to inform their own advance care planning, emphasizing the importance of communication about healthcare preferences.
Caregivers noted that parents' prior engagement in formal advance care planning impacted their own views, motivating or discouraging personal planning strategies based on perceived outcomes.
Some caregivers were hesitant to use their experiences to inform their own planning, often delaying engagement due to personal health beliefs.

Abstract

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.

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