Awareness raising for Lewy body dementia in myriad ways: Lewy Body Society

27 Oct 2023

Lewy Body Society is a small but busy charity led by CEO Jacqui Cannon, whose drive to raise awareness of Lewy body dementia and support those affected by it comes from her own experience. As we prepare for our third Lewy Body MasterClass, sponsored by LBS, we talked to Jacqui about the charity's current work and future focus.

Raising awareness

The charity's main focus is to raise awareness of Lewy body dementia in every sphere possible, whether to members of the public, those affected by the condition, healthcare professionals and policy makers.

'Our strategy hasn't changed - it's to get the words 'Lewy body' out there in whatever form, as much as possible.'

Following the success of their Scarf for Lewy campaign last year, wrapping the Albert Hall with a long scarf knitted by supporters from across the UK, the charity is preparing to head to Belfast next month to wrap the Waterfront Hall. Already supported by local press, Jacqui expects around 140 people to attend the event.

'It raises awareness of the condition and of the work we're doing, and gives people an opportunity to support us without there being a financial commitment'

Lately, Lewy Body Society has been working to become increasingly visible and accessible, with a new website and two new podcasts funded by the National Lottery. The new website has a dedicated space for healthcare professionals with downloadable resources, and the charity has had 4,000 hits per month and the podcasts both feature a mixture of expert clinicians including Profs John O'Brien and John-Paul Taylor and people affected by LBD. Both projects have had support and production from people with personal experience of Lewy body dementia.

'The podcasts are really well produced and they're so unique. They bring together the perspective of experts like professors John O'Brien and Jean-Paul Taylor with incredible life stories from people like Chris, talking about her own diagnosis, and Vicky who's husband has LBD. They give a very real understanding of the condition, and are relevant to a really wide audience.'

Influencing policy

Jacqui discusses the small charity's big impact on policy lately. The only dementia charity to get involved with Carer's Week, Jacqui and two people affected by LBD went to 10 Downing Street alongside Carer's UK, Mind and Age UK to attend several roundtables with the care minister and shadow care minister.

'It shows the power of collaboration - we got to really make an impression. One of the ladies who came with us cares for her husband and she's very articulate. She incentivised a politician to raise a question at Prime Minister's question time, raising awareness of lewy body dementia in the House of Commons.'

This is important to Jacqui, to raise awareness of Lewy body dementia in all areas and arenas of society, whether amongst the public, the government, or health and social care professionals.

'People talk about removing the stigma of dementia - but for us it's about removing the stigma of Lewy body.

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.'

Impacting education

This same breaking of stigma is one of the driving factors for Lewy Body Society's involvement in education for healthcare professionals. They have funded and supported the Lewy Body MasterClass, which is running for a third time this coming January, because of how important education is in closing gaps in care.

A particular passion for Jacqui at the moment is making sure professionals know how important it is to give a clear and accurate diagnosis about the sub-type of dementia a person has.

'Healthcare professionals are asking us, 'Why are you getting hung up about the sub-types of dementia? Why does it matter?' But it really does matter. If you're going to send someone out of a consulting room with a diagnosis of 'dementia', you're not equipping them to cope with their symptoms or their future, and you're not managing their medications effectively.'

In addition to supporting the MasterClass, Lewy Body Society are raising awareness of LBD amongst healthcare professionals by making themselves visible and accessible to respond to questions and offer support. In July they attended the Alzheimer's Association International Conference in Amsterdam, and as the only UK dementia charity with a booth found they had a constant stream of delegates seeking information on LBD.

They have recently become the Secretariat for Lewy body International (LBI)which is supported by 11 countries and was launched last year in Newcastle. They have plans for both public and political awareness raising campaigns in the coming months, including committing 28th January to Lewy body dementia. Next year will see the inaugural World Lewy Body Day, chosen because it was also the birthday of Dr Frederick Lewy, who discovered Lewy bodies in 1912.

On behalf of LBI Jacqui wants to encourage healthcare professionals to commit to making a positive change towards better care for those affected by LBD. This might be:

  • learning more about the condition such as with our free Lewy body Bitesize course,

  • using a clinical tool like DIAMOND Lewy to help diagnose and manage it better,

  • popping to their website to grab a resource or two to share with individuals and families experiencing a diagnosis.

The next big challenge

An area of education that Jacqui wants to focus on in the near future is that of care staff in different settings, including nursing staff, social care staff and healthcare assistants. She explains that people with LBD are experiencing hallucinations which are being misunderstood as aggressive behaviour and mismanaged as such. She feels strongly that better understanding and recognition would lead to improved care and symptom management.

'It's a particular problem in care spaces; care home staff don't recognise LBD or how to manage the symptoms of this, and they need support. We need to improve outreach / inreach from dementia services into care homes to provide training and educational support to care home workers. At the moment, care homes don't want to take people with LBD and they end up in hospital and being sectioned. This is a gap that desperately needs to be plugged.'

If you would like to find out more about Lewy body dementia, including its diagnosis, treatment and management, head over to our Lewy body Academy to access free education or register for our MasterClass on 24th January.

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.