Supporting education and understanding in Lewy body disease

Jacqui Cannon, chief executive of the Lewy Body Society, talked to Neurology Academy about the charity's mission, focus, and recent experiences supporting education amongst healthcare professionals.

The Lewy Body Society, established in June 2006 in the UK, was the first charity in Europe exclusively concerned with Lewy body dementia (LBD) and focuses on information provision and research support. Their mission, she says, is to raise awareness.

Until recently, their work in awareness raising has been predominantly aimed at the general public, and within families of those experiencing LBD, with their input into the medical profession primarily through their research funding, much of which is carried out via their specialist advisory committee of experts in the field.

However, lately the charity has moved into awareness raising within healthcare professionals. Through partnership with Dementia UK and supported funding of Admiral nurses, they have now fully funded an Admiral nurse for LBD who has in turn upskilled the other Admiral nurses in supporting people with LBD. This has the added benefit of enabling them to support people with other types of dementia in symptoms often experienced by those with LBD such as hallucinations.

Jacqui highlights that, as with many neurological conditions, everyone's journey with LBD will be different, everyone's experience of the condition is unique - and Admiral nurses are very well equipped to support people as individuals, where they are, whether living with LBD or caring for someone who is.

Professional education

Their most recent move into awareness raising for healthcare professionals was in partnering with Neurology Academy to provide the Lewy Body MasterClass - the first bespoke educational event for LBD of its kind.

The MasterClass was, for Jacqui, a brilliant way to share information with healthcare professionals around LBD, the importance of early diagnosis, how it differs in presentation with other forms of dementia, and the tools available to them.

Jacqui explained that, seeing delegates engage with the information, inspired by experts in their field and equipped with tools and knowledge to improve their practice, was highly encouraging.

Jacqui speaks from personal experience. Her father had Lewy body dementia and the family encountered many senior healthcare professionals who didn't know about LBD, an experience which inspired Jacqui to get involved with the new charity as a volunteer, later becoming its first CEO.

Part of the difficulty in understanding LBD is linked to the difficulty around dementia as an umbrella term. Describing LBD as 'the most common dementia you've never heard of', Jacqui compared dementia treatment and support with that of cancer.

The DIAMOND Lewy toolkit is not only a support for assessment and diagnosis, but for management as well with resources for in-depth symptom management as well as an overview for 'at-a-glance' understanding (fig 1).

Figure 1: Management overview: synopsis of major symptoms in Lewy body dementia and their management from the DIAMOND Lewy toolkit

Future plans

The Society supports people with Lewy body dementia in two core ways - through information and through research support. The charity will be going live with a new grant round in January 2022 and are accepting proposals for LBD research.

The Lewy Body Society is leading on one of the two strands forming June 2022's International Lewy Body conference in Newcastle. Running from 15th-17th, the conference will be open to in-person or virtual attendance, and whilst the Society is supporting the strand for people affected by Lewy body dementia, 'Living with Lewy', the other strand is a scientific one and ideal for healthcare professionals who want to learn more about LBD.

With representation across Europe and the United States, the conference offers a good opportunity to connect with and learn from others, hear the latest from the research field - or submit an abstract of your own work - and be inspired to assess and improve personal practice within LBD diagnosis and management.

Jacqui was also clear that, after the positive impact of the Lewy body MasterClass this November, the Society is keen to continue supporting healthcare professionals' education in assessment, diagnosis and management of LBD. With over 100 healthcare professionals expressing an interest in a future event, and speakers offering continued support in the future, there are hopes of replicating the course in 2022.

(A conference report for the Lewy Body MasterClass will be published in the journal 'Advances in Clinical Neuroscience and Rehabilitation (ACNR)' later this month)