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Opportunity to raise awareness of ‘most common disease you’ve never heard of’ must be grasped

Opportunity to raise awareness of ‘most common disease you’ve never heard of’ must be grasped

24th January 2024

The first World Lewy Body Day on Sunday 28 January is a “vital opportunity to raise awareness” of the condition, says the NHS Research Scotland Neuroprogressive & Dementia Network (NRS NDN)

Labelled “the most common disease you have never heard of” by the Lewy Body Society, Lewy Body dementia (LBD) is believed to be the most common form of cognitive impairment after Alzheimer dementia yet remains the least well-known.

LBD is associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, can lead to problems with thinking, movement, behaviour, and mood.

The date of World Lewy Body Day has been chosen as the birthday of Dr Friedrich Lewy who discovered the disease in 1912. 

Now, along with other organisations from around the world, NRS NDN will be joining forces to raise awareness of LBD.

NRS NDN Network Manager Jacqui Kerr said: “Sunday 28 January will be an important milestone in promoting better global understanding around this often surprisingly little-known condition.

“LBD has a huge impact on both individuals and families, creating significant mental and physical challenges, as well as issues in the provision of appropriate levels of care.

“Unfortunately, misdiagnosis remains common, so World Lewy Body Day represents a vital opportunity to raise awareness.”

LBD already affects tens of millions worldwide, including some 100,000 in the UK – and those numbers are expected to grow dramatically as life expectancy increases.

Acknowledging the gap in awareness and the urgent need to address it, members of the NRS NDN team are attending a Lewy Body Masterclass at Sheffield University on 25 and 26 January.

The course will provide intense practical education regarding the diagnosis and practical management of LBD/PDD among clinicians in the UK and Ireland, leveraging the latest evidence regarding biomarkers and interventions.

It also aims to kickstart the development of a network of LBD-skilled clinicians across the UK and Ireland who will be equipped to lead improvements in diagnosis, management, and care.

Jacqui continued: “Getting involved in the dedicated masterclass in the run-up to World Lewy Body Day will help us to not only improve skills in assessing cognitive, functional, and behavioural impairment for LBD, but also foster links with others across the UK and Ireland who are keen to do likewise, allowing us to pool knowledge going forward.

“This is essential if we are to truly address and devote more resources towards bridging the LBD awareness gap and effectively diagnosing through better education. Most importantly, it is about improving lives.”

She added: “We would ask all to get involved in World Lewy Body Day where possible – whether sharing posts on social media, circulating information to friends and colleagues, or simply speaking about it openly. Getting actively involved in online and local support groups, and supporting your regional LBD groups makes a distinct difference to those living with the condition.”

NRS NDN are keen to hear from people who have been diagnosed with a neuroprogressive condition or have a problem with their memory and are interested in signing up to register their interest in dementia research participation.

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