What worked for me: Trying to help others

By Rich James, who started LBSN UK. Rich's mother was diagnosed with LBD in late 2020.

In November 2020, my mum started showing obvious symptoms of Lewy body dementia. We'd had our suspicions in the preceding months that something wasn't right - mainly due to memory issues. But then she started seeing people who weren't there, which kickstarted my family’s crash-course in LBD. Within two months, my mum had been sectioned under the Mental Health Act.

A formal diagnosis during this time helped us understand a bit more of what was happening, but information was still found in a piecemeal way. Some came from sources in the US, some from charities, and some from medical professionals. It wasn’t easy – and harder still to find support that felt genuinely relevant to us.

I found plenty of general dementia-related support, or things for people with Alzheimer's. But little seemed to cater for the unique challenges of LBD – especially the vivid and often traumatic hallucinations that had caused my mum so much distress. 

As so many do, I turned to social media to try and find some form of support network – people who might understand my experience. Yet all of the big groups I found on Facebook were heavily US-centric, with much of the advice around medical care irrelevant for a UK audience – not to mention the significant cultural differences. As a simple solution, in March 2021 I set up a private UK-specific group, only admitting people who clearly lived in the UK. Within 2 years we had more than 370 members, providing informal support and advice to one another, and the seeds were sown for creating the Lewy Body Support Network. 

Inspired by the positive response to the group (now titled LBSN UK), in 2022 I ran an anonymous survey to see if others shared my difficulties when attempting to access information and support. To encourage participation, the survey was kept as short as possible – just five key questions – with optional places to provide further information and feedback. 82 people completed the survey, providing a clear snapshot of the general experience of people affected by LBD.

Having worked in the charity sector for a number of years, I knew I wanted to ensure any other proactive steps I would take would be relevant and any services genuinely needed. I didn't want to reinvent the wheel or replicate services that existed elsewhere. Overall, from the survey responses there was a clear indication that existing information and support either didn’t exist, or was difficult to find. It seemed my experience was far from unique.

At this stage, I was contacted by Esther Boyd, who had already been running her own support services (Lewy Buddies UK) for a number of years. We've since combined our efforts under the LBSN UK name, with the simple aim of making support and information easier to access.

This 'What worked for me' series of blogs or articles is a big part of what we want to do. So much of the information available is highly professional, generic and medical in its approach. We want to de-formalise this, by encouraging people to share their stories, ideas and techniques that have worked for them. These may not work for everyone, but there might be someone out there who could really benefit from hearing what you have experienced and what you have to say. We want everyone affected by LBD to know that their experience and knowledge is valued and important.

Having a family member affected by LBD can so often leave you feeling powerless - that you're fighting a losing battle. And while I can't stop the progression of the condition in my mum, what worked for me is doing something - however small - to try and help other people in similar situations to feel less alone or overwhelmed. 

​If you have a story to tell, please get in touch. We'd love to hear from you.