• Caroline Mogan, Harrison DeningKarenKDementia UK, Research and Evaluation, London, UK., Christopher Dowrick, and Mari Lloyd-Williams.
• Academic Palliative and Supportive Care Studies Group (APSCSG), Primary Care and Mental Health, University of Liverpool, Liverpool, UK.
• Palliat Med. 2022 Jun 1; 36 (6): 976-985.

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.

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