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.
Highlights
IntroductionAround 50 million people have dementia, and there are nearly 10 million new cases every year (World Health Organisation, 2019)
Dementia is recognised internationally as one of the most significant healthcare challenges.Worldwide, around 50 million people have dementia, and there are nearly 10 million new cases every year (World Health Organisation, 2019)
The average survival time from dementia diagnosis varies greatly depending on gender, dementia sub-type, age and severity of symptoms at diagnosis; one systematic review found that the average survival time is between 1.1-8.5 years (Brodaty et alet al., 2012)
Summary
Around 50 million people have dementia, and there are nearly 10 million new cases every year (World Health Organisation, 2019). As there are no current curative treatments, all treatment is essentially palliative, and there is an imperative for research to improve the palliative care of people with dementia (PwD). PwD and their carers have been shown to have palliative care needs equal to those of cancer patients (Dempsey et alet al., 2015). The palliative care needs of PwD may be complicated by cognitive impairment, communication difficulties and responsive behaviours; presenting unique challenges to palliative care (Dening et al.,, Sampson and De Vries, 2019). Qualitative research has shown that while in many ways the basic palliative care needs of people are the same regardless of illness, families’
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