What Worked For Me: Finding a Buddy

By Esther Boyd, who began the Lewy Buddy UK peer support group, now Lewy Buddies UK. Esther cared for her husband who was diagnosed with LBD in 2011, until his death in 2019.

When my husband Howard received a diagnosis of Dementia with Lewy Bodies in 2011, neither of us had heard of the disorder.  We were fortunate that Howard’s psychiatrist was well informed – he was on the steering group of the Diamond Lewy project.  He advised us to keep active and to meet other people with dementia, at Dementia Cafés and other dementia events – but, due to GDPR, he was not able to introduce us to other people living with LBD.  

We went to numerous dementia events over several years, but never met anyone with LBD which you will no doubt know presents very different problems from Alzheimer’s and other common dementias. We felt our problems were not understood by others, and we felt lonely. 

​​In April 2016 I posted a message on the Alzheimer’s Society Talking Point Forum, “Looking for Lewy Buddies in the UK” and I received a positive response from a wife living about 35 miles away. We were then banned from the Forum as planning to meet was forbidden, but we became good friends, meeting regularly until the untimely death of her husband.
 
In April 2017 Howard’s psychiatrist invited me to chair a focus group at the Mental Health Trust, to discuss ways of finding ‘Lewy Buddies’, with staff from the NHS and the Alzheimer’s and Parkinson’s Societies. He told me that my task was to care for Howard and that I didn’t have time to organise a support group for Lewy Buddies. It appeared to be a useful meeting, but I was the only person who followed up action points. I produced flyers which I left at my GP surgery, gave to agency carers and distributed at dementia events. 
 
Then, in early 2018 I was contacted by two women whose husbands had LBD. The three of us gave each other massive support for the remainder of our husbands’ lives. With two local ‘Buddies’ - to phone, email and meet for a cuppa - my life was transformed.
 
That’s why, sometime after Howard’s death in October 2019, I decided to set up ‘Lewy Buddies UK’: an online and telephone support group for family members who care for people with a Lewy Body Disorder, and for people at an early stage of the disorder. 
 
The growth of access to video call technology like Zoom since the pandemic has been of great benefit to support groups. My original vision was to set up a group in Birmingham, but now there are Buddies in Scotland, Wales, Cornwall, the Isle of Wight, Suffolk and many places in between.
 
Finding other people in similar situations worked for me, so by now working with LBSN UK, I hope we can reach more people and support them through the many challenges, ups and downs they will inevitably encounter.