The Lewy Body Society premiered our new short film highlighting the reality of living with Lewy body dementia, to mark our 20th anniversary year.
The film was first shown on World Lewy Body Day at a special event held at a historic private members’ club in London, before being released publicly to coincide with the close of Lewy Body Awareness Week 2026.
It brings together clinical expertise and lived experience, featuring contributions from Dr Paul Donaghy and Consultant Admiral Nurse Rachel Thompson, alongside David Deer and Alan Young, who are both living with Lewy body dementia, and their wives, Lorraine and Karen. The film shares their experiences of diagnosis, symptoms and daily life, and the impact the condition has on individuals and families.
Lewy body dementia is the second most common form of neurodegenerative dementia in older people, but awareness and understanding of the condition remain low.
The Lewy Body Society hopes the film will help improve understanding among the public, professionals and policymakers, while also helping people affected by the condition feel less isolated. It reflects our long-standing commitment to ensuring the voices of people living with Lewy body dementia and their families are central to research, awareness and service development.
Introducing the film at the premiere, LBS ambassador Karen Young spoke about the importance of ensuring families affected by the condition are involved at every level of decision-making, telling guests: “Nothing about us, without us.”
The film was greeted with both smiles and tears, among the nods of recognition. Members of the audience commented on how important it was to see lived experience represented so openly.
Lewy Body Society CEO Jacqui Cannon said: “This film represents everything the Lewy Body Society stands for. For 20 years, we have worked to make sure people living with Lewy body dementia and their families are heard, understood and supported.
“By bringing together clinical expertise with lived experience, this film helps show the reality of the condition, challenges misunderstanding, and reminds people affected by Lewy body dementia that they are not alone. As we enter our third decade, we are more determined than ever to drive forward research, awareness and better support for families.”
