Purpose: The 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/approach: An 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, policy-makers, 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.
Findings: Overall, 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 core. Important individual service components were 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, insufficient advanced care planning, and dementia-related challenges to care. Facilitators included education, carer support, and therapeutic relationships.
Originality/value: This 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.
- palliative care
- integrated care model
- end of life