From our website to our growing community, 2024 was a year in which our shared vision of a nationwide support network really started to take shape. When we first combined our efforts, we had a clear vision of how we wanted to approach the challenge of providing support to people affected by Lewy body dementia. First and foremost, it had to be meaningful, so it needed to be grounded in lived experience. Second, we wanted to make our community central to what we do. ‘Here for each other’ is more than just a catchy motto - it means we’re all in this together, and that we believe our greatest strength is the support, advice and understanding we can give to one another. This has been a year where we’ve laid the groundwork for future growth and expansion of our support services. We launched the Buddy Directory one year ago, and introduced the ‘What worked for me’ concept of tips and articles (Esther was delighted that the benefits of rapid cycling for people with LBD were recognised in 2024 in the UK, as this significantly improved and extended the quality of her husband's life). We have also started to explore the benefits of creating small peer support groups on WhatsApp for people with particular shared experiences, such as men caring for their wives at home. Self-funded on a shoestring and entirely volunteer-led, we’re proud of what we’ve been able to achieve this past 12 months. With our formal registration with the Charity Commission on the horizon, there’s so much more we’re hoping to achieve in order to reach more people whose lives have been altered by this condition. At what can be a difficult time of year for so many, we wish you the very best and a reminder with kindness, that we will continue our work to support you and be here for you when you need it. Best wishes, Esther & Richard Co-founders, Lewy Buddies UK We are excited to announce a recent development in our journey to create an organisation dedicated to people affected by Lewy Body Dementia (LBD). As part of our preparation to register with the Charity Commission and our ongoing efforts to establish a stronger presence, we are officially changing our name from "Lewy Buddy Support Network UK" to "Lewy Buddies UK."
By Hannah C, whose mother has a diagnosis of LBD After my mother’s first diagnosis, I realised I knew nothing. There was no escape from the fact that I was now responsible for my Mum, and I had to learn how I could help. I bought books. I joined websites. I scrolled through forums, but found them overwhelming, and lacking information specific to mum and our situation.
I’ve found that becoming that expert in Mum, what she needs, has been my approach. Learning a new way to communicate has been key, based on emotion and need, not fact and logic. It’s hard, and is another sort of loss, but ultimately rewarding. Since we started out, I wanted this organisation to be genuinely led by the people it aims to help. And until now, despite extremely limited time and resources, we’ve been able to do that in some small way. However, Esther and I feel that if we are to really start delivering on our aims, the time has come to make some notable changes.
By Esther Boyd, who began the Lewy Buddy UK peer support group, now part of LBSNUK. Esther cared for her husband who was diagnosed with LBD in 2011, until his death in 2019.
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