ArticlePalliative medicine2022
Health and social care services for people with dementia at home at the end of life: A qualitative study of bereaved informal caregivers' experiences.
Article in Palliative medicine, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers.The Gerontologist · 2026Pooled it
- Article
- Supporting homecare workers to provide palliative and end-of-life care: A scoping review of interventions and their implementation.Palliative care and social practice · 2026Article
- Addressing barriers to interprofessional working with homecare workers in community palliative care: Insights from a multi-site qualitative case study.Palliative medicine · 2026Article
- "I tell you what it's the hardest job": the experiences of family carers providing support for people with dementia at home in the last year of life.BMC geriatrics · 2025Article
- Defining informal caregivers by their characteristics safety roles and training needs in Europe.Scientific reports · 2025Article
- People with dementia and family carers are welcoming of a model of dementia palliative care, but sceptical of its implementation.Dementia (London, England) · 2025Article
- A Mixed Methods Analysis of Standardized Documentation of Serious Illness Conversations Within an Electronic Health Record Module During Hospitalization.The American journal of hospice & palliative care · 2025Article
- Lived experiences of end-of-life care at home in the UK: a scoping review of qualitative research.The British journal of general practice : the journal of the Royal College of General Practitioners · 2024Article
- Caregivers' and Health Care Providers' Cultural Perceptions of and Experiences With Latino Patients With Dementia.Neurology. Clinical practice · 2024Article
- What are the triggers for palliative care referral in burn intensive care units? Results from a qualitative study based on healthcare professionals' views, clinical experiences and practices.Palliative medicine · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundMore 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.
aimTo 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.
designA qualitative interview study. Data were analysed using thematic analysis. SETTING/
participantsTwenty-nine bereaved informal caregivers who had looked after a person with dementia at home during the last 6 months of life.
resultsSpecialist 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.
conclusionsEnd-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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.