(photo: Leon Rossiter)
Tom Hinde was in his mid fifties when he was diagnosed with Young-onset dementia.
The 63-year-old, from Ellesmere Port, has since pushed himself to the limit to battle against the disease and raise awareness around his rare condition.
Young-onset dementia is a rare form of dementia that affects 11 in every 10,000 30-65 year-olds and results in symptoms such as memory problems, changes in mood and personality, confusion and communication difficulties.
Tom used to work out at sea as a pumpman, and would often find himself repeating tasks on the ship that he had already done.
It was when he came home in 2018, that he started showing more signs of the disease.
Tom said: “My personality completely changed. I was never a violent or angry person, I went from being a placid and quiet person to be the angriest person in the world.
“My wife and son took all of it. I wasn’t physically violent with them, but emotionally violent and shouting.”
At the time, Tom was 55 years old and the thought of dementia hadn’t crossed either his or his wife Marion’s mind.
People were saying he was too young for it to be dementia, and that Tom’s behaviour must be down to depression.
Tom added: “Luckily, we had a doctor who was switched on and knew what was going on.”
When the diagnosis finally came later that year, Tom’s initial reaction was one of immense relief, as he had an explanation for what was going on inside his head. But it was soon after this when his mental health took a turn.
He said: “They were very dark thoughts and I thought to myself, you know, I’ve let my wife and son down because I’ve lost my job at sea. I felt like I shouldn’t be here. Because it wasn’t fair on them.”
Since these dark times, Tom has managed to turn his life around and is determined to fight dementia by staying mentally and physically active to reduce the impact the disease could have.
He is one the co-hosts of the Fighting Dementia Podcast, which aims to help the audience deal with their own experiences with dementia.
The show has racked up tens of thousands of views across various platforms with Tom at the heart of it, becoming a recognised face in raising awareness for dementia.
He said: “We always say that if we can help one person to realize that you can live well with dementia, we’re doing a good job… because if you get diagnosed with young-onset, there’s nothing out there for you.
“The only groups you can go to are the people in the sixties and seventies who’ve got dementia.”
The podcast received floods of positive feedback with many seeing Tom as an inspiration and an example to follow.
He said: “I don’t think of myself as an ambassador. I just think of myself as Tom and I just go out and enjoy my life and do what I need to do.”
Tom also has a job, proudly working three hours per day as a cleaner at the Wirral Hundred pub in Sutton, Ellesmere Port.
He continues to have a positive outlook and stay active, regularly playing golf with his son and riding his bike.
Earlier this year, he completed the annual bike ride event from Liverpool to Chester. He cycled 27 miles in just two hours and twenty seven minutes, to raise money for cancer research.
Whilst Tom has found a new lease of life, he recognises the effect his journey with dementia has had on his wife.
He said: “I was lucky she stayed with me, the way I was before I was diagnosed, because I was a horrible person.
“Everything went wrong. She got the blame for everything, my son got the blame for everything. But she’s coming to terms with it now, she worries about it more than I do. You know, she just worries too much. Thinks about it too much.”
Tom is an inspiration in the dementia community and is living proof that if, as he says, ”you live well, you can live well with dementia” but he remains humble.
He concluded: “I’m no one different. I’m just Tom with dementia, that’s all.”
Featured image: Leon Rossiter
