Starting Early, Talking Together: improving understanding of palliative care for people living with rare dementias

People living with rare dementias often face challenges that differ from those experienced by people with more common forms of dementia. Many are diagnosed at a younger age or experience changes in language, vision or behaviour rather than memory. Despite these differences, little research has explored how palliative care can best support people with rare dementias, particularly in the early stages of the condition and within community settings.

Starting Early, Talking Together is a two-year research project led by Professor Sebastian Crutch, Rare Dementia Support Director and Professor of Neuropsychology at University College London, and funded by Marie Curie. The study aims to understand whether beginning conversations about the changes, losses and future challenges of dementia earlier can help people living with rare dementias and their families engage more confidently with advance care planning, palliative care and end-of-life support. Rather than focusing only on the final stages of life, the research recognises that palliative care can provide emotional, practical and psychological support throughout the dementia journey.

The study will combine analysis of national healthcare records with surveys, interviews and co-creation workshops involving people living with rare dementias, current carers, bereaved carers and healthcare professionals. A major part of the project will involve members of Rare Dementia Support, whose experiences will help researchers understand what makes conversations about living losses, anticipatory grief and future care meaningful, and what barriers prevent people from accessing appropriate support.

The research will explore differences in access to palliative care between rare and more common dementias, examine inequalities linked to diagnosis, age, ethnicity and geography, and identify what people living with rare dementias consider to be a good end-of-life experience. Importantly, the voices of people with lived experience will shape the recommendations and resources developed through the project.

The findings will be used to develop practical resources, accredited training for health and social care professionals, enhanced peer support programmes, digital resources and policy recommendations. By improving understanding of when and how conversations about living losses and future care should take place, the study aims to improve access to personalised, compassionate palliative care for people living with rare dementias and their families.

‘The Road Less Travelled’ sessions

‘The Road Less Travelled’ is a programme that makes up part of the Starting Early, Talking Together project. The sessions have been developed by members of the RDS team, a researcher from the UCL Marie Curie Palliative Care Research Department and members of RDS to help the carers of people living with a rare dementia identify, better understand, and process various aspects of loss and grief that are experienced all along the journey with dementia. The sessions acknowledge the unique aspects and impact that a rare or young onset dementia entails.

Conversations are facilitated about a range of issues, including:

• what grief and loss look and feel like for carers
• exploring grief and loss in more detail
• living with loss and normalising grief – carrying on
• embracing identity – spouse, partner, parent, grandparent, child, friend, carer. Who am I now?
• the later stages of dementia and planning ahead