‘I am busier now than I have ever been in my life’
A year on from his Alzheimer's diagnosis, former BBC Radio Northampton journalist Willy Gilder is re-writing the script on how to live with the disease
By Sarah Ward
Willy Gilder was diagnosed with Alzheimer’s during lockdown last year at the age of 68. A well known figure in Northamptonshire having reported across the radio airwaves for more than two decades, we talked to him last May just after his dementia diagnosis and he spoke about how he then saw himself as becoming a different version of his former self.
A year on we recently had another chat with Willy and heard how is helping break down dementia stereotypes, doing his own research and communicating for those who no longer can.
Last month Willy Gilder won a scholarship from Edinburgh University to study for a masters degree. Surely an impressive feat for any soon to be septuagenarian, but for someone with Alzheimer’s that has to be some kind of first.
Add that to his reinvention as a dementia activist, a researcher, an artist and a podcaster and Willy is living life at some pace.
“I am busier now than I have ever been actually”, Willy told me from his home in Edinburgh. After an episode of severe depression and an admission into a Northampton mental health hospital he retired from his BBC job and moved to the city in 2019 to be close to one of his two sons.
Following a series of neurological tests, Willy’s suspicion that something was going on which was more than severe depression was proved right - he was diagnosed with Alzheimer’s, an incurable disease that erodes the brain.
That was in the Spring of last year and he says that while being told he had a disease for which there was no known cure, it was a relief to have a name for what he was experiencing.
His form of Alzheimer’s is a less common type of the condition and affects his parietal lobe (the part under his ears) rather than the hippocampus which controls memory, and is most commonly associated with the disease.
“I have a blob in my left eye which is constantly with me although I only notice it when I pay attention to it,” he says.
“I have certain sorts of balance problems - so if I’m riding a bike, getting on and off the bike is hard for me. And I have some issues with my verbal working memory. If I’m copying an email address I’m quite likely to make a mistake and then I won’t see the mistake - which can be quite frustrating. So I have to find ways around that.
“I had lost my wanting to draw - that was disconcerting. I had heard about the power of music so I set myself a programme of listening to the Beatles and Stones very loud and got the desire to draw back.
“I’m now fanatically drawing. Having lost it, I realise the fragility of it and I realise I don’t want to lose it again - so it’s been very important to me, I keep being asked to go and draw people’s meetings and activities and things.”
Creativity and its relationship to dementia will be the subject of his masters degree which he starts in the Autumn.
He has been awarded the scholarship by the Binks Hub, a new social research facility within Edinburgh’s famous university.
“Everybody says creative activities are good for people with dementia but actually there hasn’t been an awful lot of research in it because when you then say “What do we mean by that and why?” People don’t have a lot of information beyond saying “Well everybody knows.”
“I’m making a whole series of videos of people with dementia talking about themselves, their diagnosis and I’m hearing stories about people losing friends when they have been diagnosed and how they feel about their diagnoses and the future.”
“It’s just wanting to look under the hood of it all really.”
He’ll be using the journalism skills he practised for more than 30 years to carry out his research.
“I took a very conscious decision that as a journalist I had got certain skills. Finding things out, talking to people, publicising things and I feel I have a sort of responsibility to keep using those skills. I’m definitely still being a journalist.”
He is also very busy on other fronts, getting involved as an activist to raise awareness of and possibly change the way in which those with the disease are treated and viewed.
“I am very busy because I have gotten very involved with dementia action.
“There is a big move really for people with dementia to be more involved with our own care and lots of people say in the past too many services have just been put on without any reference to the people they were put on for.
“So I took a decision not too long after I was diagnosed that I would face this disease full on and one of the ways I would do it would be to get involved with dementia activism.”
He was apprehensive about going along to his first group for people with dementia.
“I remember going and thinking “What on earth have I let myself in for? This will all be odd and I will feel completely out of place” and it wasn't like that at all. It was just lovely people sitting around and drinking tea who were extraordinarily welcoming.
“This particular group were people who have early onset dementia - those diagnosed under the age of 65. They are all people who are going through things like losing driving licences and memory issues and all sorts of things really.”
And it is the new community and friendship group that has spurred him on to talk about the disease. He makes his own podcast, and regularly speaks to the media.
“I feel a responsibility to talk about the disease. Not just for me but for the people who have got the disease who may no longer be able to talk about it. There is a lady I know in a group I’m part of who used to travel the world as an expert in her particular field. Well she can now barely talk - so I feel I have a bit of responsibility to the likes of her to say whatever we can.”
He is also part of a group who are doing their own research into the disease.
“As people with dementia we are constantly being researched, constantly having requests from researchers. One of the groups I’m involved with is a group of people with dementia who are looking at doing their own research because we are a bit fed up with always being the subject of people’s research and never being in charge of it. But all the time people are researching us; whether it’s about drugs or whether its’ about housing, or whatever.”
As for a prognosis, like all with Alzheimer’s what the future looks like for Willy and how quickly his health could deteriorate is unknown.
“Over time the disease could affect other bits of my brain but nobody knows what sort of speed that could happen at, it doesn't seem to have gotten particularly worse in the past year, but that doesn’t mean it won’t get worse next year.
“There is no cure but you can take medication which can help you be as mentally sharp as you can be. The first set of tablets that I took gave me the most frightful nightmares, so they put me on skin patches which gave me backache and now I am on capsules which don’t seem to be giving me too many side effects.”
He also had major heart surgery last November and ended up only being able to walk a few feet before being breathless. His physical health is now much improved.
“It makes me very conscious that I don't want to waste time. I didn't want to retire - never really thought about retirement but I don't want to just hang around and do nothing. So I feel as if I want to paint every picture, I want to write every book.
“I’m not very good at doing nothing. I like having things to do and if I didn’t do anything I would get very depressed quite quickly, but this has very much given me a new purpose in life.
“I think when I was first diagnosed I was rather baffled and didn’t quite understand what that was going to mean in my life and then I decided lets turn this in a way to my own advantage.
“It has given me a renewed sense of purpose really. I feel fulfilled in a different way.”
Asked if others are now seeing him as an inspiration he says:
“Unfortunately they are. People see me as being very frank and open. I wouldn’t say I’m the only person - there are a whole group of people doing it and with encouragement from various organisations.
“It’s a terminal disease but that doesn’t have to be a death sentence.”
You can follow Willy’s entertaining Twitter account here