Des O’Sullivan and Valli Yanni feature in a new film by Alzheimer’s Research UK that shines a spotlight on the lesser-known disease Des is living with: dementia with Lewy bodies (DLB).

Des, 67, worked as a successful publishing consultant before experiencing symptoms that were initially thought to be related to anxiety and depression. Later, after shouting and moving a lot in his sleep, a REM sleep disorder was presented as the potential cause. He was eventually diagnosed with DLB in 2016.

“For a while it felt like it wasn’t real,” Des said. “In the beginning, I kept asking doctors: ‘do I have dementia?’ It took me a while until I was able to fully realise that there was something wrong, partly because there is not a lot of awareness out there about dementia generally, but specifically about dementia with Lewy bodies.”

The couple decided to share their story in the film to increase awareness about DLB.

The film is part of the charity’s award-winning Connections series which aims to bring lived experience to the fore by showing what life is like for people living with a range of diseases that cause dementia. Each one uniquely involves a person living with dementia and illustrates the impact it has on the person living with it and their loved ones.

What is the film about?

Des and his wife of 28 years, Valli, share their experiences about how Des’ condition impacts their lives.

In the film, Des explains what his first symptoms were – losing things like his pen, wallet and phone – and how these symptoms have progressed into movement problems, freezing and difficulty reading and interpreting clocks: “I’ve got three degrees, but I can’t tell the time, and it makes me feel completely lost,” Des explains.

“Valli and I were delighted to take part in the film because we are both so passionate about sharing our knowledge and experience of dementia. Valli is my inspiration because she has kept us on the road through the hardest moments,” Des said.

The couple share their distinctly united front as they call for a cure through dementia research.

Des said: “It’s not going to cure itself. We have to take a positive and dynamic attitude to the research on dementia. We give a high priority to other conditions, and that’s exactly right and proper, but we need to put dementia with Lewy bodies in the same bracket. We have to act.”

What is dementia with Lewy bodies?

DLB is a form of dementia which can cause problems with thinking, memory and body movement.

Almost one million people in the UK are living with dementia, and around 100,000 of these are living with dementia with Lewy bodies.

To learn more about dementia with Lewy bodies, visit our health information page.

“We give a high priority to other conditions, and that’s exactly right and proper, but we need to put dementia with Lewy bodies in the same bracket. We have to act.” said Des.

Why is it important to raise awareness of DLB?

Alzheimer’s Research UK Senior Research Fellow at Newcastle University Dr Daniel Erskine, whose research focussed on DLB calls it “one of the most common conditions you’ve never heard of.”

Dr Erskine said: “Compared with Alzheimer’s disease, other forms of dementia get much less attention. This is why I’m so passionate about raising awareness of DLB and the research that my team and I are conducting. I find it important to share human stories in my work to help keep scientists in the lab connected to the people we are trying to help; Des and Valli’s film is a moving and motivating example of why we need to keep pushing dementia research forward.

“Research is absolutely the only way to change the ending for people living with DLB and other types of dementia. We are grateful to Alzheimer’s Research UK and their supporters for continuing to champion our work because this will open the door to the treatments that people with the condition deserve.”

How can research bring hope?