First ever world Lewy body day this Sunday

24 Jan 2024

The inaugural World Lewy Body Day arrives this Sunday, chosen because it was the birthday of Dr Frederick Lewy, who discovered Lewy bodies in 1912. This global awareness raising opportunity was launched by Lewy body International (LBI), a collaborative organisation which formed amongst 11 countries in early 2023.

Lewy Body Society is the Secretariat for Lewy body International and their chief executive Jacqui Cannon spoke to us last year about the importance of raising information about this form of dementia - which is significantly more common than thought making up to 30% of all dementia cases are Lewy body dementias (Zaccai 2005).

'People's perceptions of what is and isn't acceptable behaviourally is really challenging - someone who otherwise seems very cognitively capable might have really challenging behaviour due to hallucinations. Without any understanding about this, individuals are made to feel awkward in social spaces, or are thrown out of care establishments - which is really distressing for the person with LBD and their family.'

Despite the reasonably high prevalence amongst dementias, Lewy body dementia is misdiagnosed between 50% and 80% of the time (Hohl 2000, LBDA 2019) and there has been a lack of clinical support to healthcare professionals in diagnosing and supporting people living with the condition and their families.

It is for this reason that Lewy Body Society provides funding for the Lewy Body MasterClass through Neurology Academy, to raise awareness and improve diagnosis, treatment and management of Lewy body disease amongst healthcare professionals. This week, just before World Lewy body Day, we're running the course for a third time and looking forward to hearing the impact it has on this years' varied cohort of delegates.

The course takes place over two days and delegates spend the evening networking and sharing their experiences over dinner. This year, in honour of World Lewy Body Day, Iracema Leroi, professor in geriatric psychiatry at Trinity College Dublin and the Global Brain Health Institute, and head of faculty for Dementia Academy and Lewy Body Academy, will be leading delegates in 'my 2024 Lewy body pledge'. This will be an opportunity for each delegate to commit to a specific action they will take to raise awareness of Lewy body disease, or improve the experiences of those affected by it.

Perhaps the idea of a '2024 Lewy body pledge' resonates with you? Or perhaps this first World Lewy Body Day, you would like to improve your knowledge and understanding? If so, head over to our short, free course, Lewy body Bitesize to access six sub-15 minute talks from experts on the condition.

Lewy Body Academy

Focussing on dementia with Lewy bodies (previously known as Lewy body disease), and Parkinson's disease dementia, this specialist training ensures people with these dementias do not fall through the gaps in care.