A charity is calling for more awareness of ‘forgotten type of dementia’ to improve diagnosis, care, support, treatment and research this World Alzheimer’s Day (Sept 21).
North West/Wigan based Lewy Body Society is the only UK charity dedicated to supporting people living with this form of dementia – known as “the most common type of dementia you have never heard of.”
A new website platform now acts as a one stop shop for the charity to share a pool of resources for professionals and carers to utilise to improve the lives of those living with this neurodegenerative dementia.
Jacqui Cannon, chief executive of Lewy Body Society, said: “This World Alzheimer’s Day, it is important to remember there are more than 100 types of dementia and Alzheimer’s is just one of them. It is important to increase awareness and knowledge of the many types of dementia like Lewy body to improve diagnosis and post diagnosis support, care, treatment and research for those living with the disease and carers.
“We have made it our mission to educate the public, decision-makers, researchers and the medical profession about the reality of Lewy body dementia and its impact on families. We have curated a library of high-informative resources and a directory of useful organisations in the dementia community on our website for easy access.”
Lewy body dementia is a complex and frequently misdiagnosed disease that affects memory, thinking, movement, sleep and behaviour.
It is the second most common type of neurodegenerative dementia in older people. At least 10-15% of all people who live with dementia have Lewy body dementia.
Lewy body dementia is frequently mistaken for Alzheimer’s disease or other conditions but an accurate diagnosis is essential for the correct treatment to be given. Anecdotal evidence suggests that at least half of people with Lewy body dementia were given another diagnosis first.
Kim Robinson, is a carer for her dad, who was diagnosed with Lewy body dementia in 2020 at the age of 74, having previously been diagnosed with Parkinson’s disease.
She said: “Dad has always been very active. He was a semi-professional footballer and a bricklayer, and he and Mum have been married for 55 years. Mum is Dad’s main carer, but my sister and I visit every week and take it in turns to stay over weekends to help mum, as night times are very difficult.

“For advice on Dad’s condition and support for Mum on how to cope we have relied heavily on the Admiral Nurse Dementia Helpline, and particularly the Consultant Admiral Nurse for Lewy body dementia who has been fantastic. We also rely on a local group run by volunteers. This provides an afternoon once a week where Mum and Dad can go for support. I worry that we rely on one club so much and would love there to be more support available.”
For more information and to access Lewy Body Lewy Body Society resource visit www.lewybody.org/