Components of a community model of dementia palliative care

Abstract

PurposeThe Model for Dementia Palliative Care Project will develop a service-delivery model for community-based dementia palliative care. Many countries provide dementia palliative care services, albeit with considerable variability within these. However, little is known about what service providers consider to be the most important components of a dementia palliative care model. This study aimed to address this knowledge gap.Design/methodology/approachAn exploratory design using a survey method was used as an initial phase of the wider project. A web-based survey was developed, piloted (n = 5), revised, and distributed within five healthcare jurisdictions: the Republic of Ireland, Northern Ireland, England, Scotland, and Wales. The target population was health and social care professionals, policymakers, and academics interested in dementia and palliative care. Content analysis of open-ended questions identified common themes; descriptive statistics were applied to the closed-ended questions.FindingsOverall, N = 112 complete surveys were received. Key care principles incorporated the philosophies of palliative care and dementia care; many described “holistic” and “person-centred care” as the core. Important individual service components were the support for carers, advanced care planning, information, education and training, activities for “meaningful living”, comprehensive disease management, coordinated case management, and linking with community health services and social activities. Barriers included poor availability and organisation of healthcare services, stigma, misconceptions around dementia prognosis, insufficiently advanced care planning, and dementia-related challenges to care. Facilitators included education, carer support, and therapeutic relationships.Originality/valueThis study, as part of the larger project, will directly inform the development of a novel service delivery Model of Dementia Palliative Care for Ireland. The results can also inform service planning and design in other countries.