Wraparound support for an event with a difference
The Lewy Body Society invited people to knit a giant scarf, forming a mile-long masterpiece that encircled the Waterfront Hall in a show of support for the dementia charity.
#AScarfForLewy is the charity's unique gesture to raise awareness about this frequently misdiagnosed condition and symbolises the encompassing support available for those affected by Lewy Body Dementia, the second most common type of dementia in older people.
The Lewy Body Society funds research into Lewy Body Dementia, a little-known type of dementia that is very different to the most common type, Alzheimer’s disease, and requires different support and treatment. It is the only UK charity focused exclusively on this type of dementia, with its aim to offer better support to those affected and help develop scientific research into the disease.
It’s estimated that around 100,000 people in the UK have Lewy body dementia, around 10-15 per cent of those with dementia. It can cause the motor problems associated with Parkinson’s disease, hallucinations, and sleep problems, as well as the progressive decline in cognitive abilities found in other forms of dementia.
Jacqui Cannon, Chief Executive of The Lewy Body Society, said:
A huge thank you to everyone who got involved with this unique challenge especially all the staff at Waterfront Hall who were amazing. We’re incredibly grateful to Christopher Biggins, actor, writer, and philanthropist for being so generous with his time.
"We would like to thank Belfast Lord Mayor Ryan Murphy and local councillors for attending and supporting A Scarf For Lewy and Rita Fitzgerald from UTV who joined us on the day. I’d also love to thank Volunteer Now and Orchardville NI for their brilliant support alongside all the knitters who’ve got out their needles for this event.”
Julia Corkey, Chief Executive of ICC Belfast | Waterfront Hall | Ulster Hall, said:
We take great pride in standing with families impacted by this condition through this unique event held at our iconic venue. The dedication and efforts of the Lewy Body Society to raise funds and generate awareness for this disease are truly inspiring.
"Many of our coworkers, friends, and loved ones have firsthand experience of the challenges of caring for someone with dementia, which made connecting with the volunteers on that day truly special."
Lewy body disease (LBD) is caused by abnormal clumps of protein developing in the brain. It is thought that clumps first develop in places outside the brain – like skin or bowel – before spreading upwards into the brain. In 2022, the Lewy Body Society funded a number of different projects, including a study through Queen’s University Belfast, to better understand how LBD develops and find new ways to detect and treat the disease.
Dr Joseph Kane – Clinical Lecturer, School of Medicine, Dentistry and Biomedical Sciences Centre for Public Health, Queen’s University Belfast, said,
Although Lewy Body Dementia is one of the most common forms of dementia, we know that it is detection and treatment rates are far below what they could be.
"The Lewy Body Society leads invaluable work in raising awareness of LBD, and we are honoured that they have chosen Belfast to show off their magnificent scarf. We hope that this initiative helps kick start discussions in the clinic, in the media, in the Stormont Assembly, and in homes all over Northern Ireland.”
Charlie McCloskey, Director of Events and Customer Experience of ICC Belfast | Waterfront Hall | Ulster Hall, said:
As an organisation, we’re honoured to take part in initiatives such as #AScarfForLewy that support the pioneering research conducted by Queen's University Belfast and the significant impact it is making in the lives of those affected by this complex condition.
"We hope that opening the Waterfront Hall doors to the local community and volunteers, who joined us for this unique event, reflects our commitment to creating a space where knowledge, advocacy, and community spirit come together make a real difference.”
Les Magee, Northern Ireland’s Lewy Body Society Ambassador, said,
It’s been eight years since my Dad passed away from Lewy Body Dementia, then a little known form of dementia. Since then, The Lewy Body Society has managed to set up a forum in Belfast, drawing some of the NHS top medical people to raise awareness.
"The plan has been to raise awareness across UK and NI and during the last few years more people on our shores have been diagnosed with the disease. Having had direct contact with the symptoms and everyday care as a family, we are persistent in not only pushing awareness but sending direct help to those diagnosed and their carers.”
