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Lewy body dementia - "lesser-known but equally cruel"

Lewy body dementia - 'lesser-known but equally cruel'
3 min read

Conor McGinn MP writes on the devastating disease - Dementia with Lewy bodies - which affects more than 100,000 people in Britain.

Everyone is aware of dementia and its devastating impact on sufferers and their families.  However, too few people are aware of a lesser-known but equally cruel disease.

It’s called Dementia with Lewy bodies (DLB) and shares symptoms with both Alzheimer’s disease and Parkinson’s disease.

The condition, also known as Lewy body dementia, affects more than 100,000 people in Britain, including at least five per cent of those aged 85 and older.

But the diagnosis and data is not as good as it should be, so the true number of victims could be far higher.

DLB shares mental symptoms like confusion and loss of memory with Alzheimer’s.  It shares motor issues like slow movement with Parkinson’s.

That means it can be misdiagnosed, raising the risk that sufferers are prescribed the wrong drugs – something that can prove fatal in the worst cases.

That’s why I'm working as an ambassador for the Lewy Body Society – the only charity in Europe dedicated exclusively to raising awareness of this debilitating disease and finding ways to fight it and supporting sufferers and their families.

I’m raising the issue in Parliament today (TUESDAY) of the disease – caused by abnormal amounts of a certain type of protein in the brain – as part of that work.

With the number of people suffering from all forms of dementia set to rise to more than a million by 2021, we need earlier and better diagnosis.

This will mean people will be able to get swifter treatment and have the best quality of life possible for as long as possible.

In 2012, David Cameron said he wanted to make England “the best country in the world for dementia care and support” by 2020.

Some progress has been made.  A new Dementia Research Institute will be up and running by 2020 with the backing of £150 million in funding.

But we need to be doing far more.  Dementia Lewy bodies is the second most common form of dementia, but it is not mentioned in the Government’s 2020 Dementia Challenge strategy.  That needs to change.

We need a commitment for proper funding to help DLB sufferers and provide detailed research into the disease.  At present, the Lewy Body Society does not get a penny in support from Whitehall.

The Department of Health should set up training programmes to help GPs and other healthcare professionals identify DLB correctly, to raise awareness of the condition and how it differs from other forms of dementia.

We must raise the awareness of this brutal disease and increase the funding and research to tackle it.   That’s the best way we can ease the pain of sufferers and their families.

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