Life with Lewy Body Dementia

An autopsy following the 2014 death of actor Robin Williams revealed evidence of Lewy Body Dementia. Tragically, he’d never received a diagnosis and had no understanding of what was happening to him. According to his wife, Susan Schneider Williams, this left the actor tormented and desperate to “reboot his brain”. She now actively campaigns for more awareness, support, and research into Lewy Body Dementia.

Data indicates that around 15% of all dementia cases in the UK are Lewy Body Dementia (LBD) cases, making it the third most common form of dementia after Alzheimers and Vascular Dementia. Here in the UK, it affects an estimated 100,000 people.

Raising awareness

In October of 2022, The Royal Albert Hall in London was wrapped in a mile-long scarf, hand-knitted by dozens of volunteers across the country. Conceived of by Lewy Body Society Ambassador Vicky Hands, whose husband has Lewy Body Dementia, the wrapped scarf symbolised the wrap-around care that people living with a Lewy Body Dementia diagnosis need.

‘Scarf for Lewy’, as the event is now known, was designed to raise awareness of this common but little-known form of dementia. In October 2023, Vicky will work with TV personality Christopher Biggins and others to wrap Belfast’s Waterfront Hall with a knitted scarf to help raise awareness in Northern Ireland.

About Lewy Body Dementia

Lewy Body Disease is sometimes referred to as Dementia with Lewy Bodies (DLB), but there’s a distinction;  LBD is a broader term encompassing both Dementia with Lewy Bodies and Parkinson’s disease dementia, while DLB refers to the single brain disorder.  

Dementia with Lewy Bodies is caused by small clumps of protein that build up inside nerve cells in the brain. The clumps that form from the alpha-synuclein proteins are called Lewy bodies, which damage nerve cells, and affect the way that our brain cells communicate.

Symptoms of Lewy Body Dementia

Symptoms of Lewy Body Dementia are varied, but most commonly include:

• Visual hallucinations 
• Cognitive impairment 
• Fluctuations in attention 
• REM sleep disturbance 
• Parkinson’s symptoms 

Diagnosis of the condition is challenging: recent studies have found that approximately half of people with Lewy Body Dementia were initially given another diagnosis — highlighting the need for greater awareness and understanding of the condition.

When Ashley Bayston’s mum was diagnosed with Lewy Body Dementia, she was shocked to discover that in addition to the lack of awareness, there was virtually no support for people and their families living with a diagnosis. This is what drove her to set up The Lewy Body Society in 2006, the first charity in Europe devoted exclusively to the condition.

Since then Ashley, now Chair, and current LBS CEO Jacqui Cannon have together built-up a community of patients, carers, and academics, who come together for fundraising events and initiatives, and to offer each other information and support. The charity’s objectives are threefold: raise awareness of the condition; support people and families living with a diagnosis; help fund research into Lewy Body Dementia.  

In Ashley and Jacqui’s words:

“In 2018, we worked with ITN Business to produce a video about Lewy Body Dementia. We were delighted to have recently received our first National Lottery Community Fund grant to work with them again to create Living with Lewy, a two-part podcast.  Recording day was a reunion of some members of our “Lewy family” who gathered at ITN’s London Studios, having travelled from Exeter, Wigan, Hove, and Newcastle. Two world-leading LBD specialist academic-clinicians joined us remotely from Newcastle University and University of Cambridge. Like us, our ITN Business programmer, Tamsin, and producer, Shannon, both had family experience of LBD so they absolutely got it. We sincerely hope these podcasts will help shine a light on LBD.”

You can listen to the Living with Lewy podcast episodes here.