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Jacqui Cannon’s father, Joe, who had Lewy bodies dementia

New international guidelines to identify dementia with Lewy bodies

New international guidelines will help ensure an accurate diagnosis and the best possible care for people with dementia with Lewy bodies– the second most common age-related dementia.

Experts at the University of Exeter have helped shape the newly published guidelines, which now distinguish clearly between clinical features and diagnostic biomarkers, and give guidance about the best methods to establish and interpret both elements.

Dementia with Lewy bodies affects an estimated 5 million people worldwide, including 100,000 in the UK. Hollywood actor Robin Williams had the illness when he died in 2014. The University of Exeter has been part of an international team of experts, led by Newcastle University, who have produce new recommendations to help diagnose the disease more accurately and improve management of the complex disorder. According to research published online today and in the July 4, 2017, issue of Neurology®, the medical journal of the American Academy of Neurology, the world leaders in their field highlight important clinical and diagnostic biomarkers, but call for more clinical trials into the illness.

Clive Ballard, Professor of Age-Related Diseases at the University of Exeter Medical School, said: “Dementia with Lewy bodies is very different to Alzheimer’s disease in that it often has little to do with memory loss.

“Symptoms often include hallucinations – yet commonly prescribed antipsychotics can be fatal to people with dementia with Lewy bodies. It is essential that people with dementia with Lewy bodoes across the world get the right treatment and care as early as possible, and throughout their illness, to allow them to live the best quality life possible.” Ian McKeith, Professor of Old Age Psychiatry at Newcastle University’s Institute for Ageing, led the international dementia with Lewy bodies (DLB) consortium, which last reported on diagnosis and management of the illness in December 2005.

The new recommendations were established by experts, including patients and care organisations, and highlight the importance of detecting the disease early.

Professor McKeith said: “There remains a pressing need to understand dementia with Lewy bodies, to develop and deliver clinical trials, and to help patients and carers worldwide inform themselves about their disease.

“It is important that people are aware of the condition’s prognosis, best available treatments, ongoing research, and how to get adequate support.

“Our guidelines now distinguish clearly between clinical features and diagnostic biomarkers, and give guidance about the best methods to establish and interpret these.

“Without accurate diagnosis we can’t do the clinical trials that are needed to demonstrate a treatment that works.”

Dementia with Lewy bodies is a disorder that shares symptoms with both Alzheimer’s disease and Parkinson’s disease. It may account for 10% to 15% of all cases of dementia yet it is not sufficiently recognised.

The new guidelines focus on clinical features, such as visual hallucinations, motor features of Parkinson’s disease, and rapid eye movement sleep behaviour disorder.

Detailed information is also provided about the best biomarkers to use to help confirm a diagnosis when a patient presents with one or more clinical features.

Jacqui Cannon, CEO of the Lewy Body Society, said: “It is so important that people receive a diagnosis of the correct subtype of dementia, only then will they receive the correct support, care and medication. This is particularly important for people living with dementia with Lewy bodies.”

The full paper, Diagnosis and management of dementia with Lewy bodies: Fourth report of the DLB consortium is published in the journal Neurology®.

To find out more about dementia research at Exeter, visit:

Date: 6 July 2017