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...

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Publicado en:Journals of Gerontology Series B: Psychological Sciences & Social Sciences Vol. 81; no. 8; pp. 1 - 15
Autores principales: Bloom, Rachel F, Lou, Yifan, Monin, Joan K, Fried, Terri R, Mroz, Emily L
Formato: Artículo
Publicado: Oxford University Press / USA Aug2026
Materias:
Acceso en línea:Ver este registro en EBSCOhost
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        atl: How bereaved adult-children of parents with dementia use end-of-life caregiving experiences to inform their personal advance care planning.
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          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
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        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
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          Parents
          Death
          Health attitudes
          Qualitative research
          Interviewing
          Decision making
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          Motivation (Psychology)
          Communication
          Terminal care
          Psychology of caregivers
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          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
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