Context, mechanisms and outcomes in end-of-life care for people with advanced dementia: Family carers perspective
Open accessAbstract
BACKGROUND: Keeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspective. Here, we report on family carer perspectives. We aimed to understand the similarities and differences between the two perspectives, gain insights into how the interdependent roles of family carers and HCPs can be optimised, and make recommendations for policy and practice. METHOD: Qualitative study using a realist approach in which we used the criteria from guidance on optimal palliative care in advanced dementia to examine key contexts, mechanisms and outcomes highlighted by family carers. RESULTS: The themes and views of family caregivers resonate with those of health care professionals. Their overlapping anxieties related to business-driven care homes, uncertainty of families when making EOL decisions and the importance of symptom management referring to contexts, mechanisms and outcomes, respectively. Contexts specific to family carers were ad hoc information about services, dementia progression and access to funding. Not all family carers identified dementia as terminal, but many recognised the importance of continuity of care and knowing the wishes of the person with dementia. New mechanisms included specific resources for improving EOL care and barriers to discussing and planning for future care. Family carers identified the importance of comfort, being present, the meeting of basic care needs and feeling the right decisions have been made as good outcomes of care. CONCLUSIONS: Family carers and health care professionals share similar concerns about the challenges to good EOL dementia care. Better understanding of the effects of dementia at the advanced stages would improve confidence in EOL care and reduce uncertainty in decision making for family carers and health care professionals.
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Specific information gaps were noted around options for long-term care, day-care centers, palliative and hospice services, and in-home support.
“Specific information gaps were noted around options for long-term care, day-care centers, palliative and hospice services, and in-home support (Armstrong et al., 2020; Fitzpatrick & Grace, 2019; Kupeli et al., 2019; Larsen et al., 2020; Radcliffe et al., 2023; 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 Kupeli et al., 2019
The Discussion (Additional themes identified by family carers; page unavailable) reports poorly organised information about service costs and access, and the Results (Context of care; page unavailable) describe difficulties accessing services and care-home admission. The paper does not identify information gaps specifically about day-care centres, palliative or hospice services, or in-home support. (LLM, conf=0.86)
Experimental — accuracy not yet measuredAdvance Care Planning (ACP) tools, including Medical Orders for Scope of Treatment and Do Not Attempt Resuscitation (DNAR) forms, helped clarify preferences and reduce uncertainty around treatment and transition decisions.
“Advance Care Planning (ACP) tools, including Medical Orders for Scope of Treatment and Do Not Attempt Resuscitation (DNAR) forms, helped clarify preferences and reduce uncertainty around treatment and transition decisions (Hanson et al., 2019; Kupeli et al., 2019).”
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 Kupeli et al., 2019
The Results (Outcomes defining good EOL dementia care; Mechanisms generating outcomes) describe advance plans and DNAR forms as helping family carers avoid pressured decisions and express preferences about resuscitation and remaining in the care home. The Discussion (Additional themes identified by family carers) links advance planning to reassurance about decisions. Our copy does not mention Medical Orders for Scope of Treatment, and it attributes preparedness partly to conversations and relationships rather than showing that forms alone reduced uncertainty. (LLM, conf=0.87)
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- Authors
- Kupeli, N., Sampson, E. L., Leavey, G., Harrington, J., Davis, S., Candy, B., King, M., Nazareth, I., Jones, L., & Moore, K.
- Affiliations
- University College London (GB)
- Barnet Enfield and Haringey Mental Health Trust (GB)
- University of Ulster (GB)
- Corresponding author
- Kupeli, Nuriye
- ORCID
- Venue
- BMC Palliative Care
- Published
- 2019-10-24
- Volume
- 18
- Issue
- 1
- Pages
- 87-87
- ISSN
- 1472-684X (ISSN-L)
- PMC
- PMC6813066
- OpenAlex
- W2981502767
- Cited by
- 19
- References
- 45
- Citations by year
- 2026: 1 · 2025: 4 · 2024: 2 · 2023: 2 · 2022: 5 · 2021: 1 · 2020: 3 · 2017: 1
- FWCI
- 2.07
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- BMC Palliative Care (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- UCL Discovery (University College London) (submittedVersion)
- Minerva Access (University of Melbourne) (submittedVersion, cc-by)
- Funders
- Marie Curie (MCCC-FPR-11-U)
- Alzheimer's Society (399 AS-JF-17b-016, 325 AS-SF-16-004)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Keywords
- end-of-life care, advanced dementia, family caregivers, healthcare workers, palliative care, symptom management, advance care planning, continuity of care, care homes, decision-making, caregiver uncertainty
- MeSH terms
- Adult, Aged, Dementia, Female, Humans, Male, Middle Aged, Quality of Health Care, Terminal Care, Caregivers, Outcome Assessment, Health Care, Uncertainty, Qualitative Research
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