Meaningfulness and quality of end of life for people with dementia: a systematic review and 'best-fit' framework synthesis.

Introduction Dementia poses a unique challenge to traditional models of a 'good death'. Understanding what makes the dying process 'meaningful' offers a more nuanced approach to improving experiences at the end of life. Aim To develop a conceptual framework for meaningful dying in dementia. Methods...

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Publicado en:Age & Ageing Vol. 55; no. 2; pp. 1 - 16
Autores principales: Gabb, Liam T, Williamson, Lesley E, Evans, Catherine J, Owen, Gareth, Sleeman, Katherine E
Formato: Artículo
Publicado: Oxford University Press / USA Feb2026
Materias:
Acceso en línea:Ver este registro en EBSCOhost
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        10.1093/ageing/afag032
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          Gabb, Liam T
          Williamson, Lesley E
          Evans, Catherine J
          Owen, Gareth
          Sleeman, Katherine E
        affil:
          Cicely Saunders Institute, King's College London, Bessemer Road, London SE5 9PJ, UK
          Cicely Saunders Institute, King's College London, Bessemer Road, London SE5 9PJ, UKPalliative Care, Brighton General Hospital, Sussex Community National Health Service Trust, Elm Grove, Brighton BN2 3EW, UK
          Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK
      su:
        Attitudes toward death
        Palliative treatment
        Social workers
        Respect
        Dignity
        Social worker attitudes
        Quality of life
        Spirituality
        Sociodemographic factors
        Psychology of caregivers
        Interpersonal relations
        Patients' attitudes
        Patient participation
        Treatment of dementia
        CINAHL database
        Descriptive statistics
        Systematic reviews
        MEDLINE
        Conceptual structures
        Attitudes of medical personnel
        Dementia
        Human comfort
        Caregiver attitudes
        Psychology information storage & retrieval systems
        Dementia patients
      sug:
        subj:
          Attitudes toward death
          Palliative treatment
          Social workers
          Respect
          Dignity
          Social worker attitudes
          Quality of life
          Spirituality
          Sociodemographic factors
          Psychology of caregivers
          Interpersonal relations
          Patients' attitudes
          Patient participation
          Treatment of dementia
          CINAHL database
          Descriptive statistics
          Systematic reviews
          MEDLINE
          Conceptual structures
          Attitudes of medical personnel
          Dementia
          Human comfort
          Caregiver attitudes
          Psychology information storage & retrieval systems
          Dementia patients
      keyword:
        concept formulation
        copyrightHolder:British Geriatrics Society
        copyrightYear:2026
        good death
        https://dx.doi.org/10.1093/ageing/afag032
        inLanguage:en
        meaningfulness
        older people
        palliative care
        patient participation
        publisher:Oxford University Press
        qualitative research
        sameAs:https://pubmed.ncbi.nlm.nih.gov/41734101/
        terminally ill
        concept formulation
        copyrightHolder:British Geriatrics Society
        copyrightYear:2026
        good death
        https://dx.doi.org/10.1093/ageing/afag032
        inLanguage:en
        meaningfulness
        older people
        palliative care
        patient participation
        publisher:Oxford University Press
        qualitative research
        sameAs:https://pubmed.ncbi.nlm.nih.gov/41734101/
        terminally ill
      ab: Introduction Dementia poses a unique challenge to traditional models of a 'good death'. Understanding what makes the dying process 'meaningful' offers a more nuanced approach to improving experiences at the end of life. Aim To develop a conceptual framework for meaningful dying in dementia. Methods A qualitative systematic review drawing on five databases, and 'best-fit' framework synthesis. Reported in line with PRISMA guidelines and GRADE-CERQual assessment of confidence. Qualitative and mixed-methods studies were identified that explored concepts related to quality of end of life in dementia. Framework selection was derived from theories of meaningfulness, a good death and personhood in dementia. The conceptual framework was refined working with people affected by dementia. Results Sixty studies, from 16 countries, were included. Five central themes were generated: '1. Changing identity', '2. Bodily comfort', '3. Connection & relationships', '4. Recognition of spiritual self' and '5. Contribution & legacy'. Underpinning and surrounding these were two themes: '6. Respecting the person & maintaining dignity', and '7. Finding coherences & making sense'. This final theme facilitates overarching sense-making, allowing for the conflicts and tensions between the other themes to be reconciled. Discussion 'Meaningful dying' emphasises making sense of the dying experience as a whole. By contextualising what is happening within the story of the individual, it facilitates personal dignity in the face of potentially unavoidable suffering. The framework provides conceptual guidance for making decisions on behalf of someone with dementia towards the end of life when mental capacity may be lost.
      pubtype: Academic Journal
      doctype: Article
      src: R
    language: English
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