Wigan-based charity - Lewy Body Society - has joined forced with organisations across the globe - in the fight against ‘the most common form of dementia you have never heard of’.

This World Lewy Body Day (Sunday, January 28) Lewy Body Society will be shining 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 World Lewy Body Day for the first time with members of the global partnership.

The Lewy Body Society was founded in 2006, when there was only one other Lewy body charity in the world. Now organisations from ten countries on four continents have formed Lewy Body International, a cooperative 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 from Saddleworth near Oldham. She became involved with the charity while caring for her 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% 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 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

Notes to editor:

The Lewy Body Society was founded in the UK in 2006. It was the first charity in Europe to focus exclusively on Lewy body dementia. Its mission is to raise awareness of Lewy body dementia and to fund research to better understand the disease.

Lewy Body International

Organisations from ten countries on four continents - The Lewy Body Society UK, Asociación Lewy Body Argentina ALBA, Lewy Body Dementia Association LBDA, Lewy Body Dementia Australasia, Lewy Body Ireland, Lewy Body Espana, A2MCL France, Lewy Body Canada, Lewy Body Dementia Resource Centre USA, Lewy Body Belgium - provide education, care partner support, advocacy, community building and outreach to policy makers, the scientific and medical community.

Dementia health crisis

- There is around 950,000 people with dementia in the UK. The number of people affected is predicted to increase dramatically as life expectancy increases and diagnosis improves.

- Lewy body dementia is believed to be the most common form of cognitive impairment after Alzheimer’s Disease, affecting tens of millions of people worldwide.

- Lewy body dementia is an umbrella term for dementia with Lewy bodies and Parkinson's dementia. Lewy bodies are a misfolded protein in the brain. Where they are in the brain, determines how somebody is affected.

- Lewy bodies in the brainstem affects movements meaning somebody is more likely to develop Parkinson's.

-When Lewy bodies can occur in other parts of the brain such as the cortex, it may affect a person’s cognitive functions and show neuropsychiatric features, it is a diagnosis of dementia with Lewy bodies.

-It differs from Alzheimer’s Disease in that poor memory function in not a key symptom in Lewy body dementia, although it may be present.

- Lewy body dementia affects more men than women, usually between ages 50 and 85, and there is currently no cure. On average, people tend to live five to seven years after diagnosis, however it is possible to live much longer. The four key symptoms of Lewy body dementia are:

· Cognitive fluctuations

· Sleep disturbance, such as acting out dreams

· Hallucinations

· Parkinson’s symptoms

World Lewy Body Dementia Day

This is the inaugural World Lewy Body Dementia Day. January 28, 2024, is birthday of renowned neurologist and neuropathologist Dr. Fritz Jacob Heinrich Lewy (1885-1950) for whom the aggregations of misfolded alpha-synuclein proteins in the brain, now known as Lewy bodies, were named.

Podcast

Living With Lewy is a two-part podcast mini-series from Lewy Body Society, hosted by Lewy Body Society Founder and Chair Ashley Bayston, it features people living with Lewy Body Dementia, carers and clinicians, academics researching the condition, and LBS CEO Jacqui Cannon.

For media interviews please contact Jacqui Cannon at info@lewybody.org or 01942 914000

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