Palliative care has been identified internationally as a priority in dementia care. Research into “effective models” of palliative care for people with dementia has been recommended by several European agencies.
This research project asks: What are the programme models of existing services that provide palliative care for people with dementia in the communityin Ireland, Northern Ireland and Great Britain, and are the identified service activities effective, evidence-based, feasible to adopt, and acceptable to healthcare workers and potential service users in the Irish healthcare system? The principle aim is to develop a service delivery model incorporating such activities, and to provide a cost estimate and value to potential users of the model in Ireland. Multiple methods will be employed, guided by the Medical Research Council Framework for the development of Complex Interventions. Six detailed work packages address study objectives, as follows: 1. A scoping review of dementia palliative care relevant to service provision; 2. Identification of existing services providing dementia palliative care in the target countries; 3. In-depth examination of a purposive sample of 3-6 existing services, describing the programme model and evaluating service activities using well-recognised process evaluation techniques (RE-AIM framework domains); 4. Iterative development of a service delivery model for palliative care for people with dementia in Ireland, using quantitative and qualitative feedback from key stakeholders (health service leaders, representative healthcare workers, people with dementia and their families, key advocacy and voluntary groups); 5. Estimation of the budget impact, and the perceived value to potential users, of the model; 6. Widespread dissemination of the research learning, including the model, to key knowledge users, to facilitate improvements in the quality of care for people with dementia.
This project is timely and sets the foundation for future feasibility testing and definitive trials of the model at European level.
