Project opens book on experience of living with dementia
A PIONEERING project to help children understand what’s happening when people have dementia has resulted in a new book.
Launched this weekend, the graphic novel is based on the experience of former radio journalist Willy Gilder who was diagnosed with Alzheimer’s disease in 2021.
It is hoped the book, My Wonky Brain, will help break down the stigma around dementia, as well as spread more understanding about its early stages.
One in three people born today are likely to be diagnosed with dementia in later life and Gilder said it was important to “bust some myths” about the condition.
“Youngsters are likely to be puzzled about why their granny might sometimes not remember who they are,” he said. “We all come across people with dementia so this is trying to shine a little bit of light on the condition.”
He added: “One of the things that many people don’t understand is that we are talking about a progressive illness. It starts with very mild symptoms but people tend to think about the end stages when it is more severe.”
The idea for the graphic novel came from Gilder, who presents a dementiafriendly podcast for Capital Theatres, and Edinburgh University dementia and creativity researcher Valeria Lembo.
Funded by the Bold dementia project in Edinburgh, it was edited by Alex Howard of Capital
Theatres and involved pupils from the Edinburgh ESMS and the Steiner independent schools.
They interviewed Gilder to learn about his life and experience of living with dementia, then used his stories to write the novel.
A further participant living with dementia, Gerry King, was also interviewed. Illustration was overseen by comic artist Maria Stoian with workshops headed by theatre professional Adam Roberton.
Gilder said that while it was a “bit odd” to read a book based on how his brain works, he was delighted with the result.
“I think it’s excellent and if somebody picks this up and has a flick through and maybe learns something, that is all for the better,” he said.
“The children came out with some pretty searching questions about what I was feeling and how I felt about the future and that was the basis for them drawing pictures and teasing out key things in my life.”
Alex Howard, creative engagement co-ordinator at Capital Theatres, said he hoped the book would help spread understanding about dementia.
“This has been a delightful wee project and a true testament to the creative tenacity of Wily Gilder who, since 2021, has bombarded his dementia diagnosis with creativity, optimism and a desire for better depictions of the dementia experience,” he said.
My Wonky Brain is available at the Festival Theatre Café and via Bold Scotland and there are hopes it will be stocked in Edinburgh community hubs.