Understanding Stakeholder Priorities for End-of-Life Dementia Care: Findings from Scoping Conversations
Parallel 4
18 November, 2026 12:00 – 1:10 pmTechnology, Taboos and Open Conversations
Rasa Mikelyte
Research Fellow
University of Kent
Mr Keith Oliver
Person living with dementia
N/A
Summary
Nearly one million people in the UK live with dementia. At the end of life, many are supported by care workers in home or residential care settings, yet a substantial proportion do not feel well prepared to deliver palliative dementia care. Existing training tends to focus on improving knowledge, but knowledge alone is not sufficient and some care workers still remain hesitant. Resources must therefore also address care worker concerns and hesitance.
As one of the ground laying stages of a project aiming to co-produce resources for care workers on supporting people with dementia around death and dying, we conducted scoping conversations (a flexible, dementia inclusive variant of focus groups) with three key stakeholder groups: care workers, people living with dementia, and family/friend supporters.
Question sets for scoping conversations were co developed with lived and practice experience team members to explore priorities related to end of life care in dementia and the role of care workers within it. Each meeting was co-facilitated by an Expert-by-Experience team member representing that subgroup (e.g. a person living with dementia ) and a researcher. Scoping conversations were recorded, transcribed, and thematically analysed.
This presentation will outline what matters most in end of life care for people with dementia, how care workers can be better supported, and what resources are needed to improve confidence, communication, and quality of care. Key themes include unmet support needs for both clients and the workforce, differing expectations of care, and perceptions of worker preparedness.
We argue that capturing broader stakeholder experiences is a crucial step before commencing co design or co production activities. This stage achieved three important things: (1) ensured the co design focus is grounded in stakeholder priorities rather than researcher assumptions; (2) captured the emotions, concerns, and expectations that may steer the co production process; and (3) identified a wider set of needs and ideas than the co production phase can directly address, creating a platform for future work beyond this project.