Nearly a million people in the UK have dementia, and most will end their lives being cared for by care workers who often feel unprepared to talk about death or plan for it. This matters because existing palliative care training rarely addresses dementia’s specific challenges, and simply giving care workers more information does not help those who are hesitant to engage with dying. The project uses a behaviour-change framework called COM-B to design resources that target care workers’ capability, motivation, and opportunity to provide end-of-life dementia care. If successful, the freely available, co-produced resources could make care workers more confident and willing to support people with dementia through death and dying. That would directly improve the quality of end-of-life care in care homes and people’s own homes—a quiet but crucial part of the social care system that affects hundreds of thousands of families each year. The project will also produce a feasibility evaluation report, laying groundwork for larger trials.
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Research question How do resources co-designed and co-produced with care workers, people living with dementia, and their family/friend carers, using behaviour-change approaches, improve care workers capability, motivation, and opportunity to engage in palliative dementia care? Background There are nearly a million people in the UK who have dementia. At the end of their lives, most will be supported by care workers in care/nursing homes or in their own homes. However, many care workers do not feel well-prepared to deliver palliative dementia care, including communication and end-of-life planning. Existing information, training and resources on palliative and end-of-life care rarely cover the specific challenges and opportunities of dementia care. They are also rarely co-produced or informed by behaviour change approaches in their design. This is particularly important as talking about or planning for death can be difficult for some care workers, and that is unlikely to change by increasing knowledge about palliative dementia care alone. Instead, we propose that resources designed based on behaviour change approaches, which address capability, motivation, and opportunity to engage in palliative dementia care, will lead to sustained behaviour change. Aims and Objectives The aim is to co-produce resources for care workers across social care settings, focussing on supporting people with dementia around death and dying, and which are informed by behaviour change approaches. The overall objective is to help care workers feel more confident when supporting people with dementia at the end of their lives. Methods Underpinned by the COM-B integrative theoretical behaviour-change framework, this project is divided into three Phases. Phase 1: conducting a rapid scoping review of research and existing information/training/resources on palliative dementia care in social care settings, and carrying out scoping conversations (N=21-30) with dementia care workers, individuals living with dementia and family/friend carers on reasons behind and ways to address care worker hesitance around palliative care. Phase 2: co-designing and co-producing resources aimed at increasing care worker capability, motivation and opportunity to engage in palliative dementia care. This would be done with groups of care workers, people living with dementia and (bereaved) family/friend carers (N=15-21), informed by behaviour change approaches and the process evaluated. Phase 3: evaluating feasibility by piloting the resources with a diverse group of care workers (N=15-20), utilising the think-aloud methods and semi-structured interviews to explore comprehension, recall, judgement and response to the resources, their perceived usefulness and their ability to influence antecedents to behaviour change. Timelines for delivery This 20 month study, running from April 2025 to November 2026, will produce free, co-produced, sector-ready resources, along with a feasibility evaluation report. Anticipated Impact and Dissemination The co-produced palliative dementia care resources for care workers will be made freely available on the web at the end of the project. In addition, project dissemination will involve testimonial videos from co-production group members, a co-designed flyer advertising the resources to mixed audiences, presentations at webinars, academic conferences and a practitioner-aimed event, as well as peer-reviewed publications. Co-applicants with lived experience will be involved in all these activities alongside researchers.
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