We were delighted to launch the first Special Interest Group on Palliative and End-of-Life Care on 29th June. Bringing together people living with dementia, carers, practitioners, researchers and community organisations, the group has been created as a collaborative space to share experiences, learn from one another, and identify priorities for improving palliative and end-of-life care for people who are directly affected by dementia.

One of the principles of EMPOWER is co-production, and this Special Interest Group reflects that approach. Our aim is for members to shape future meetings, identify priority topics, suggest speakers, share resources and co-facilitate sessions. We want this to be a space where every perspective is valued and where lived experience sits alongside research, policy and practice.

A recurring theme throughout the discussion was language. Participants reflected on how terms such as palliative care and end-of-life care are often misunderstood or used interchangeably, creating confusion for families and sometimes even for professionals. They described situations where differences in terminology led to misunderstandings, making already difficult conversations even harder. As a group, we agreed that developing a shared understanding of these terms will be an important focus for future meetings. Participants also spoke about feeling unprepared for the later stages of dementia. Many described not knowing what to expect, receiving little information about the dying process, or being unsure where to turn for guidance. Others reflected on the emotional impact of caring for someone with dementia, including anticipatory grief, bereavement, isolation and the lasting effects that caregiving can have on families.

Another important discussion centred around the need for practical support. Members expressed interest in learning about medications, clinical care, and the everyday things that can improve quality of life. Ideas included practical guidance on managing symptoms, creating calming environments, using sensory approaches, and supporting families to feel confident in caring for their loved ones. As one participant reflected, many of these small acts of care only seem obvious once someone has shown you how. There was also a strong call for resources that are accessible and easy to understand. Participants suggested short guides and videos that families could easily access when they need them most. We also heard about the importance of recognising cultural differences, supporting people from minoritised communities, and ensuring that palliative and end-of-life care reflects people’s individual beliefs and values.

Alongside these lived experiences, Clare Ellis Smith presented her work on Improving Access to Palliative Care for People with Dementia Using a Family Reported Person Centred Outcome Measure, while Lesley Williamson shared her work on palliative dementia care from diagnosis through to the end of life.

This first meeting demonstrated why this Special Interest Group is needed. The openness of the discussion, the willingness of members to share their experiences, and the collective commitment to improving palliative and end-of-life care created a strong foundation for the group moving forward. We are grateful to everyone who attended, shared their stories and contributed their ideas. We look forward to continuing these conversations and working together to improve palliative and end of life care for people living with dementia and those who care for them.

To join the SIG, please email us on EMPOWER_Dementia_Network@kcl.ac.uk.