Modelling the landscape of palliative care for people with dementia: a European mixed methods study

Steve Iliffe, Nathan Davies, Myrra Vernooij-Dassen, Jasper van Riet Paap, Ragni Sommerbakk, Elena Mariani, Birgit Jaspers, Lukas Radbruch, Jill Manthorpe, Laura Maio, Dagny Haugen, Yvonne Engels, for the IMPACT research team

Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made.To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care.