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

Clicks: 3
ID: 314932
2026
Article Quality & Performance Metrics
Overall Quality
Not rated
Combines reader engagement with the AI quality analysis. This article has not been analysed, so there is no overall score — reader engagement is measured and shown alongside.
AI Quality Assessment
Not analyzed
Readership in this journal

Ranked #31 of 91 articles by views in the journals of gerontology series b, psychological sciences and social sciences

Most read Least read

Bar heights use a square-root scale.

Mint this article as an NFT
Not yet minted

Create a permanent, verifiable on-chain record of this article on the Scimatic Network. The NFT is held in your Journament account, and you can withdraw it to your own wallet at any time.

5 SUSD one-off · no wallet required
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.
Reference Key
openalex_W7162300307 Use this key to autocite in the manuscript while using SciMatic Manuscript Manager or Thesis Manager
Authors Rachel Bloom, Yifan Lou, Joan K. Monin, Terri R. Fried, Emily L. Mroz
Journal the journals of gerontology series b, psychological sciences and social sciences
Year 2026
DOI
10.1093/geronb/gbag091
URL
Keywords Keywords not found

Citations

No citations found. To add a citation, contact the admin at info@scimatic.org

No comments yet. Be the first to comment on this article.