Home North East Newcastle shone a light on Lewy body dementia: The Silent Epidemic

Newcastle shone a light on Lewy body dementia: The Silent Epidemic

The Millennium Bridge over the Tyne

The Millennium Bridge over the Tyne was lit up in blue on Sunday, January 28, to shine a light on World Lewy Body Day.

Alongside the bridge being lit up, the first Lewy Body Day event in Newcastle was held at The Catalyst, home to the National Innovation Centre for Ageing and the National Innovation Centre for Data.

There were presentations to learn about the most common form of dementia you have never heard of from three world leading experts on Dr Lewy’s birthday.

As well as discussion on the pioneering research into the disease by Prof Emeritus Ian McKeith in the 1980s in Newcastle, which brought it to light for the scientific world and cutting edge research has continued in the city ever since.


The talks were followed by a tea party in honour of Dr Lewy – including cake from The French Oven.

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.

Founder of the UK’s only Lewy body dementia charity and Chair of the Trustees, Ashley Bayston, 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 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 dementia accounts for an estimated 15% 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% 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 typical antipsychotics that may end 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.”