Wigan charity shines new light on a 'silent epidemic' of dementia

This World Lewy Body Day (Sunday, January 28) the charity aims to shine a light on this silent epidemic.

CEO of the UK’s only Lewy body dementia charity, Jacqui Cannon, who lost her father to the disease in 2010, is delighted to be celebrating the day for the first time with members of the global partnership.

The society was founded in 2006, when there was only one other Lewy body charity in the world. Now organisations from 10 countries on four continents have formed Lewy Body International, a co-operative alliance to tackle the lack of awareness, fund research and improve outcomes and treatments worldwide for those living with the disease, and to support carers.

Lewy body dementia is misdiagnosed with shocking frequency despite the high-profile death of the actor Robin Williams in 2014.

Almost half of all people with Lewy body dementia are given the wrong diagnosis initially, which could ultimately prove fatal if incorrect medication is then prescribed.

Jacqui said: “Dementia is the leading cause of death in the UK. Virtually unknown but not uncommon, Lewy body dementia is the second most frequent type of dementia in older people.

“Sadly, medical professionals and the public still misunderstand the signs of Lewy bodies and people with Lewy body dementia are being put at risk by not receiving the correct diagnosis or treatment.

“Many people think of Alzheimer’s when they hear dementia. Lewy body is significantly different and requires very different treatment.

“We want people to be aware that dementia does not necessarily show itself solely as having memory difficulties.”

Lewy Body Society ambassador Sylvia is a retired deputy headteacher. She became involved with the charity while caring for husband Alvan who had Lewy body dementia until his death in 2022.

Sylvia is frustrated about the lack of knowledge about the disease. Alvan started having symptoms six years before they were eventually told he had Lewy body dementia.

She added: “I felt abandoned and alone, nobody seemed to know much about it. I felt there was no one I could go to. When anybody talks to me about somebody having been diagnosed with dementia, my first question to them is what sort? You wouldn't expect to get a diagnosis these days of just ‘cancer’. Full stop. You would expect it to be supplemented. It matters, it isn’t just ‘dementia’. It is Lewy bodies and it need the right medication.”

Lewy body dementia accounts for an estimated 15 per cent of all dementia cases, around 125,000 people in the UK.

There is also believed to be around 9,000 people living with undiagnosed Lewy body dementia, according to the DIAMOND-Lewy study.

Rachel Thompson is Consultant Admiral Nurse for Lewy body dementia. She is funded by the Lewy Body Society to support patients and their families navigate their journey with Lewy body.

Rachel said: “About 46 per cent of people with Lewy body dementia are given a different diagnosis before getting the correct one. And they can wait two to three years before getting a diagnosis, sometimes much longer.

“If somebody doesn't get the right diagnosis, then they could be given the wrong medications, that may make their symptoms much worse.

“Psychiatric medications can be very detrimental for people with Lewy body because they are very sensitive. A group of atypical antipsychotics that may end up being incorrectly prescribed cause severe Parkinsonism symptoms and can end up with a mortality. This is why getting an accurate diagnosis is vitally important.

“On this World Lewy Body Day, we want to shine a light on Lewy body dementia so that families get the right diagnosis, the right support and treatment so that they can help manage the symptoms as best as possible.”

For more information visit www.lewybody.org