Palliative Care in Early Dementia: A Scoping Review (GP141)

Outcomes 1. Describe palliative needs in early dementia and effective elements in palliative care for early dementia.2. Comment on the controversies around timing of early palliative care and describe elements of a dementia-specific approach to advance care planning. Key Message Evidence from the literature on palliative care for early dementia, though still poorly defined, indicates that beginning close to the time of diagnosis, palliative care can effectively address a range of needs. These include establishing long term relationships with providers, eliciting preferences for future care, and focusing on identity-preservation. Importance Palliative care is vastly underutilized in early dementia and the literature on the topic is sparse. Our findings help begin to define effective palliative care and how to recognize palliative needs in those with early dementia and those who care for them. Objective(s) To systematically map current research on palliative care early in the disease trajectory of dementia. Scientific Methods Utilized Design: Scoping review of scientific literature by reflexive thematic analysis, using Braun and Clarke's paradigm.Data sources: PubMed, CINAHL, EMBASE, Cochrane, PsycINFO, Web of Science (March 2022). Review Methods We included studies published in English over the last decade that focused on palliative care in early stages of dementia and targeted outcome domains of palliative care (physical, psychological, social, spiritual) and/or advance care planning. Two authors independently screened abstracts and full texts and scored the quality of included studies using tools by the Joanna Briggs Institute. Results Among the 77 papers reviewed, few addressed early stages of dementia specifically. We found that: 1) While “early” palliative care was not well-defined in the literature, some evidence indicated the presence of palliative care needs present at or before diagnosis and across the trajectory. Notable opportunities for palliative care arise at ‘tipping points’ (i.e., when symptoms, functional status, or caregiving needs change). 2) Palliative care needs in early dementia include advocacy for enough, rather than too much, care in the future, reassurance against the threat of negligence and abandonment by caregivers, planning for future scenarios of care (practical, individual, and relational needs), and establishing of long-term relationships with providers entrusted for care later in disease. 3)Elements of effective palliative care in early dementia could include dementia-specific ACP and goals of care discussions, navigation for building a network of support, provision of tools and resources for family, tailored care and knowledge of the person, and well-prepared dementia-care providers. The scarcity of palliative care studies aimed at early disease indicates a gap in the evidence in dementia care. Conclusion(s) The literature on palliative care in early dementia is sparse. Future studies should focus on assessment tools for optimizing timing of palliative care in early dementia, gaining better understanding of patient and family needs during early phases of disease, and providing training for providers and families in long-term relationships and communication around goals of care and future planning. Impact This scoping review highlights the lack of evidence defining both needs and components of palliative care in early dementia. We give a general overview of the current evidence concerning palliative care in the early stages of dementia and provides a basis for expanding the field. Future studies should focus on assessment tools for optimizing timing of palliative care in early dementia, gaining better understanding of patient and family needs during early phases of disease, and developing holistic and integrated care models and providing training in long-term relationships and communication around goals of care and future planning for this population.