Describing the elements of an effective dementia palliative care service

Background: As dementia is a life-limiting illness, it is now widely accepted that people with dementia benefit from palliative care. The core components of palliative care for people with dementia have been suggested, however little is known about what an effective dementia palliative care service looks like in practice. While some services exist, a lack of description and scant detail on how and why they work makes it difficult for others to learn from existing successful models and impedes replication. Accordingly, we set out to describe an effective dementia palliative care service using programme theory, and to visually represent it in a logic model. Methods: This was mixed-methods study. An exemplary dementia palliative care service, which cares for people with advanced dementia in their own home in the last year of life, had been identified from a previous survey. The development of the programme logic model was informed by interviews with staff (n = 6), staff surveys (n = 1), service user surveys (n = 10) and the analysis of secondary data sources including routinely collected service data. Results: The logic model and summary results explain in detail how this dementia palliative care service undertook activities relating to person-centred care, carer support, end-of-life care, accessible care, timely care, and integrated care. It maps each activity to specific outputs and outcomes, showing that dementia palliative care, when provided appropriately, can greatly improve the quality of care received by people living and dying with advanced dementia, and their families, in the community. Conclusions: The logic model presented may support those developing dementia palliative care services, or guide others running existing services in how to systematically present their service activities to others, and demonstrates how clinicians, policy-makers, and others involved in service planning can utilise logic models to design new services and improve existing services.