World Lewy Body Day – how collaboration is improving support for families

What is World Lewy Body Day and why is it important?

World Lewy Body Day on 28th January marks 20 years since the Lewy Body Society was established. In this blog, Consultant Admiral Nurse for Lewy body dementia Rachel Thompson, whose role is funded by the Lewy Body Society, looks at how awareness of and treatment for this complex condition has changed over the past 20 years and how a collaborative approach to dementia-specialist nursing is helping those affected by Lewy body dementia.

Despite progress, Lewy body dementia remains one of the least well-understood forms of dementia, with many families still facing delays in diagnosis and access to specialist support.

What is the Lewy Body Society and how does it support people?

When the Lewy Body Society was established in 2006, awareness of Lewy body dementia was limited. The charity’s founder Ashley Bayston, whose mother had recently been diagnosed with the condition, found that there was little information or support available to those caring for a loved one.

She began contacting experts in the field, determined to do something to ensure other people didn’t go through the same experience that she did.

Since it was founded, the Lewy Body Society has funded millions of pounds of research, sponsoring more than 25 separate research projects. The aim is to better identify the causes of Lewy body dementia and how it can be effectively identified and treated.

The charity has funded my role as Consultant Admiral Nurse for Lewy body dementia with Dementia UK since 2019. This enables me to work closely with both organisations to deliver a dedicated Admiral Nurse service for those living with the condition.

What support is available for people with Lewy body dementia?

The service we have developed has provided specialist support to more than 500 families affected by Lewy body dementia in the UK to date. Like all Admiral Nurses I offer advice around managing symptoms, accessing appropriate support and treatment and emotional support. The specialist knowledge and expertise in Lewy body dementia within the team enables us to offer targeted and appropriate information and support for families. Find out how to get support.

Working together, with Dementia UK and Lewy Body Society, we have created information resources and leaflets which are available from both charities’ websites. I have helped establish a Community of Practice for health and social care professionals, which is supported by the Lewy Body Society. This offers regular webinars to share best practice on a range of topics related to the condition, helping to improve understanding and consistency of care across different settings. The community has over 300 members and continues to grow.

I also offer education and training to the Admiral Nurses working across Dementia UK’s Helpline and clinics, as well as hundreds of other healthcare professionals in the UK and beyond. My aim is to improve best practice, increase understanding of Lewy body dementia amongst those delivering specialist dementia care, and offer support to those who need it.

I’m also able to work alongside national organisations and charities to drive awareness of the need for better diagnosis and treatment, tapping into Dementia UK’s national network and resources to help reach as many people as possible.

What’s next for Lewy body dementia?

Over the past 20 years I have seen an increase in understanding of all forms of dementia thanks to the hard work of charities like Dementia UK and the Lewy Body Society, but there is still more to be done. While dementia awareness has improved, Lewy body dementia remains particularly challenging to diagnose and manage, and many families still struggle.

The Lewy Body Society remains a small charity, but through its board of trustees and ambassadors who have lived experience of the condition we are able to work with partner organisations to make a big difference to those affected by Lewy body dementia.

To find out more about the Lewy Body Society, and its work supporting people affected by Lewy body dementia visit www.lewybody.org. You can view their information leaflets on their website.