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

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.

Automated summary

This qualitative interview study explored the views and experiences of informal caregivers in providing end-of-life care for people with dementia at home. The study revealed a lack of specialist palliative care and identified issues with continuity of care, expertise, advance care planning, and autonomy. Proactive planning and training for domiciliary care services are essential in improving end-of-life care for people with dementia.