A Multi-Country Survey to Explore What Key Stakeholders Consider to be Important in a Model of Dementia Palliative Care

Background: The Model for Dementia Palliative Care Project will develop a service delivery model for community-based dementia palliative care in Ireland. This responds to palliative care now being recognised as a priority in care for people with dementia. Various dementia palliative care services exist internationally, however little is known about what the service providers would deem to be the most important aspects of service provision. The aim of this study was to identify what key stakeholders consider to be essential components of a model of dementia palliative care.
Methods: A web-based survey was developed, piloted (n=5), and revised. It was distributed electronically within five healthcare jurisdictions, in the Republic of Ireland, Northern Ireland, England, Scotland, and Wales. The target population was healthcare professionals, policy-makers, and academics, with an interest in dementia and palliative care. Content analysis of open ended questions was used to identify common themes within the data. Results: Complete surveys were received from 112 stakeholders. The majority of respon- dents were female (86%). Identified key principles of care incorporated the philosophies of palliative care and good dementia care, with many describing ‘holistic’ and ‘person- centred care’ as core. Important individual components were identified, including support for carers, advanced care planning, information, education and training, activities for ‘meaningful living’, comprehensive disease management, coordinated case management, and linking in with community health services and social activities. Barriers to the model were identified at three levels: ‘(mis)understanding of dementia palliative care’, ‘application of dementia palliative care’ and ‘wider service organisation’.
Conclusion: Numerous components of a ‘good’ model were identified, along with possible barriers to implementation of the model. This study, as part of the larger project, will inform a model of dementia palliative care for the Irish Healthcare system with the potential to improve the experiences of people with dementia and their families.