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 m...
| Publicado en: | Journals of Gerontology Series B: Psychological Sciences & Social Sciences Vol. 81; no. 8; pp. 1 - 15 |
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| Autores principales: | , , , , |
| Formato: | Artículo |
| Publicado: |
Oxford University Press / USA
Aug2026
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| Materias: | |
| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ssf&AN=195931911&site=ehost-live header: @attributes: shortDbName: ssf uiTerm: 195931911 longDbName: Social Sciences Full Text (H.W. Wilson) uiTag: AN controlInfo: bkinfo: jinfo: jid: 10795014 JGB jtl: Journals of Gerontology Series B: Psychological Sciences & Social Sciences issn: 10795014 maglogo: N pubinfo: dt: Aug2026 vid: 81 iid: 8 pid: 622 pub: Oxford University Press / USA artinfo: ui: 195931911 10.1093/geronb/gbag091 ppf: 1 ppct: 14 formats: tig: atl: How bereaved adult-children of parents with dementia use end-of-life caregiving experiences to inform their personal advance care planning. aug: au: Bloom, Rachel F Lou, Yifan Monin, Joan K Fried, Terri R Mroz, Emily L affil: Department of Psychology, Fordham University, Bronx, New York, United StatesSection of Geriatrics, Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut, United States Section of Geriatrics, Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut, United StatesSchool of Social Work, Virginia Commonwealth University, Richmond, Virginia, United States Department of Social and Behavioral Sciences, Yale School of Public Health, New Haven, Connecticut, United States Section of Geriatrics, Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut, United States Section of Geriatrics, Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut, United StatesNell Hodgson Woodruff School of Nursing, Emory University, Atlanta, Georgia, United States su: Parents Death Health attitudes Qualitative research Interviewing Decision making Bereavement Motivation (Psychology) Communication Terminal care Psychology of caregivers Psychology of adult children Advance directives (Medical care) Research funding Thematic analysis Intention Research methodology Dementia Caregiver attitudes Dementia patients sug: subj: Parents Death Health attitudes Qualitative research Interviewing Decision making Bereavement Motivation (Psychology) Communication Terminal care Psychology of caregivers Psychology of adult children Advance directives (Medical care) Research funding Thematic analysis Intention Research methodology Dementia Caregiver attitudes Dementia patients keyword: adult advance care planning attitude caregivers child copyrightHolder:The Gerontological Society of America copyrightYear:2026 decision making dementia Dementia decision-making Family care planning Healthcare attitudes https://dx.doi.org/10.1093/geronb/gbag091 inLanguage:en parent publisher:Oxford University Press sameAs:https://pubmed.ncbi.nlm.nih.gov/42178213/ terminally ill adult advance care planning attitude caregivers child copyrightHolder:The Gerontological Society of America copyrightYear:2026 decision making dementia Dementia decision-making Family care planning Healthcare attitudes https://dx.doi.org/10.1093/geronb/gbag091 inLanguage:en parent publisher:Oxford University Press sameAs:https://pubmed.ncbi.nlm.nih.gov/42178213/ terminally ill ab: 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. pubtype: Academic Journal doctype: Article src: R language: English refInfo: copyright: @attributes: flag: N holdings: @attributes: islocal: N |
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