Priority setting in dementia palliative care research for people living with dementia and carers: A mixed methods...

People living with dementia have complex needs, which will eventually lead to increasing demand for palliative care. However, there is limited evidence on the priority setting in palliative care specifically for people with dementia and carers.

This study aimed to identify priorities for dementia palliative care research in the West Midlands of England.

A mixed methods consensus study.

Following a rapid review of recommendations on priorities for palliative or dementia care research, we identified 54 priorities across 11 domains, which were discussed with 20 key stakeholders (clinicians, researchers, local government representatives, and experts by experience) at a stakeholder consultation workshop. Then a list of 45 topics was developed and informed the development of an online cross-sectional survey. Consensus-building techniques were used where these topics were rated for importance and ranked to indicate top priorities for dementia palliative care in the region. Descriptive statistics was used to analyse the survey quantitative data and content analysis for free text responses.

Forty-three stakeholders completed the online survey. The top 10 priorities include symptom assessment and management (e.g. pain, nausea, vomiting, acute, and/or chronic breathlessness); staff training and cultural competence; treatment and support for distress and delirium; care for people with advanced dementia at the end of life and their carers in all settings; the needs of young people with dementia and their carers; food and nutrition (e.g. difficulty in swallowing); supporting carers of people with dementia living at home; the needs of people who live alone; advance care planning and other approaches incorporating individual preferences; and home care and coordination of services.

Our results suggest the top priorities for dementia palliative care research, thus informing future practice, policy, and research.