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Cited by 18Palliative Care and End-of-Life IssuesPalliative and Oncologic CareDementia and Cognitive Impairment Research

The DOI matches its Crossref record; 35 of the 35 references it cites were found in a registry or an index.

Health and social care services for people with dementia at home at the end of life: A qualitative study of bereaved informal caregivers’ experiences

Open access
Mogan, Caroline, Harrison Dening, Karen, Dowrick, Christopher, Lloyd-Williams, Mari·2022·Palliative Medicine
DOI 10.1177/02692163221092624PMC PMC9174574
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Abstract

BACKGROUND: More people are dying at home with dementia and Alzheimer's disease. While informal caregivers are the main providers of care for people with dementia dying at home, they require support from health and social care services. However, little is known about how they experience these services. AIM: To explore informal caregivers' views and experiences of health and social care services when looking after a person with dementia at home at the end-of-life. DESIGN: A qualitative interview study. Data were analysed using thematic analysis. SETTING/PARTICIPANTS: Twenty-nine bereaved informal caregivers who had looked after a person with dementia at home during the last 6 months of life. RESULTS: Specialist palliative care for people with dementia dying at home is rare and care is mostly managed by General Practitioners and domiciliary care workers. Four overarching themes were identified: Poor continuity of care; Lack of expertise; Limited advance care planning; and Loss of autonomy. CONCLUSIONS: End-of-life care at home for people with dementia must be proactively planned with an emphasis on advance care planning. Policy makers should recognise the critical role of domiciliary care services in end-of-life care and ensure that they are adequately qualified and trained.

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Crossref · 10.1177/02692163221092624

Cites

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  • Many caregivers remained unaware of ACP processes, leaving them unprepared and distressed during critical care transition decisions.

    “Despite the terminal trajectory of dementia, palliative care consultations were infrequent, and many caregivers remained unaware of ACP processes, leaving them unprepared and distressed during critical care transition decisions (Mogan et al., 2022; Radcliffe et al., 2023; Saragosa et al., 2023; Sharda et al., 2020).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Mogan et al., 2022

    Results, Theme 3: Limited ACP (page unavailable), says most caregivers were unaware of ACP. Considerations for practice and policy says they had limited guidance for decisions such as whether to hospitalise someone with dementia. The Discussion reports stress and uncertainty, but links these chiefly to poor continuity of care; it does not establish that lack of ACP awareness caused distress during care-transition decisions. (LLM, conf=0.84)

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  • Knowledge gaps were especially prominent in end-of-life care, where staff often avoided conversations about death and dying despite their importance.

    “Knowledge gaps were especially prominent in end-of-life care, where staff often avoided conversations about death and dying despite their importance (Cronfalk et al., 2018; Mogan et al., 2022).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Mogan et al., 2022

    In Results, Theme 2 (Lack of expertise), caregivers question GPs’ knowledge of dementia and palliative care. Results, Theme 3 (Limited ACP), says caregivers considered end-of-life conversations necessary but felt professionals were not proactive in having them. The paper does not establish that staff deliberately avoided conversations about death and dying or that knowledge gaps were especially prominent in end-of-life care relative to other settings; page numbers were not available in our copy. (LLM, conf=0.82)

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  • High staff turnover made it difficult to build trusting relationships, essential for personalized dementia care.

    “High staff turnover made it difficult to build trusting relationships, essential for personalized dementia care (Khemai et al., 2022; Mogan et al., 2022).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Mogan et al., 2022

    In Results, Theme 1: Poor continuity of care (page unavailable), caregivers say that regular care workers came to be trusted and that visits from many different workers were concerning, especially for personal care. The paper does not establish that staff turnover caused this lack of continuity; different workers attending could reflect scheduling rather than employees leaving. (LLM, conf=0.86)

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  • After the move, caregivers often reported feelings of powerlessness, describing how health and social care systems appeared to make final decisions without their input.

    “After the move, caregivers often reported feelings of powerlessness, describing how health and social care systems appeared to make final decisions without their input (Mogan et al., 2022; Rognstad et al., 2020).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Mogan et al., 2022

    The Discussion says caregivers looking after people with dementia at home felt powerless and often had not played an active part in decisions. Theme 4: Loss of autonomy also describes care packages implemented without their consultation. The study does not establish that these experiences occurred after a move; it describes caregiving at home. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

  • Palliative care consultations were infrequent despite the terminal trajectory of dementia.

    “Despite the terminal trajectory of dementia, palliative care consultations were infrequent, and many caregivers remained unaware of ACP processes, leaving them unprepared and distressed during critical care transition decisions (Mogan et al., 2022; Radcliffe et al., 2023; Saragosa et al., 2023; Sharda et al., 2020).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Mogan et al., 2022

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Citations

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Research works printed but not linked: 4

  1. Dementia Clinical Network, 2020, The 2019 national memory service audit
  2. National Institute for Health and Care Excellence, 2018, NG97 dementia: assessment, management and support for people living with dementia and their carers
  3. Department of Health & Social Care, 2018, Carers action plan 2018-2020
  4. UK Government, 2014, Care act

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Metadata

Authors
Mogan, C., Harrison Dening, K., Dowrick, C., & Lloyd-Williams, M.
Affiliations
  • University of Liverpool (GB)
  • Dementia UK, Research and Evaluation, London, UK
  • Academic Palliative and Supportive Care Studies Group (APSCSG), Primary Care and Mental Health, University of Liverpool, Liverpool, UK
Corresponding author
Mogan, Caroline
ORCID
Venue
Palliative Medicine
Publisher
SAGE Publications
Published
2022-04-23
Volume
36
Issue
6
Pages
976-985
ISSN
  • 0269-2163 (ISSN-L)
  • 1477-030X
DOI
10.1177/02692163221092624
PMC
PMC9174574
OpenAlex
W4224868084
Cited by
18
References
35
Citations by year
2026: 2 · 2025: 6 · 2024: 9 · 2022: 1
FWCI
3.53
Type
journal article
Language
en
Open access
Licence
Locations
  • Palliative Medicine (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Liverpool John Moores University (acceptedVersion)
Funders
economic and social research council
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
Keywords
dementia, end-of-life care, home care, informal caregivers, bereaved caregivers, palliative care, advance care planning, continuity of care, loss of autonomy, Alzheimer's disease, health and social care
MeSH terms
Death, Dementia, Home Care Services, Humans, Social Support, Caregivers, Qualitative Research

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