For Steve, getting his diagnosis of young-onset dementia wasn't easy. After being let down by a doctor, he describes how a documentary encouraged him to finally go back and push for a diagnosis. Now, Steve advises anyone worried about themselves or a loved one to do the same.
I grew up in Leicestershire and have been here my whole life, apart from three years based in Oxford due to a work move. As a teenager at school, I played football against Gary Lineker – and we won 3-1!
I’ve always been a footballer. I’ve never been without sport in my life – whether playing it, watching it or running kid’s football teams. I’ve played football, tennis and cricket, and still have a season ticket at Leicester City.
My wife, Carol, or my son accompany me to home matches. I was still playing tennis three or four times a week up until a couple of years ago. I had to stop when my hip and knee began to hurt, and I needed an operation - I’ve also got arthritis.
Spotting the subtle signs at work
I had a long career in management accountancy. I was also an audit manager, where I got to travel the world and that was a great experience. But I was made redundant in 2012 – totally unexpectedly but I’d been struggling with the job mentally for some time. Following this, I got a job with a lot of driving.
Looking back now, I can see the beginning of my dementia then.
When I was on the road, I would accumulate receipts for petrol and food – things like that. Carol discovered that I had been gathering these for over a year and putting them in a tin, but not processing them. The work was quite process-oriented and numbers focussed, which was very unusual for me. I also nearly lost control of the car on a couple of occasions, due to tiredness.
Again, this was very odd. Driving anywhere and long distances had never been a problem. That scared me and I packed the job in.
I then took a bookkeeping job in 2014. Given my background, this was very basic work. But I found that I was making mistakes and was struggling to retain information. I resigned from this job too. I never worked again after that.
Something was happening to me. I was unable to focus, got confused very easily, and struggled to process things.
But I never thought it was dementia. I was only 54 years old.
Reaching a tipping point
I distinctly remember being with a group of friends at an away football match. Leicester City were playing West Bromwich Albion. We were in a pub. I – being good with numbers – went to the bar as usual to place everyone’s order.
But I froze. I couldn’t remember what to do. My son saw what was happening and came over to help.
After this, I started counselling. I went to the doctors again and was diagnosed with stress, anxiety and depression. Perhaps if I had gone with Carol, the outcome may have been different.
The struggle for a diagnosis
I found that the support I was given was absolutely appalling. It didn’t do me any good at all. One doctor told me that I should "pull myself together" and come back in three months if I didn’t feel any better.
I felt I was trapped in limbo - knowing that something was happening to my body that I couldn’t control, but due to my previous experience, I didn’t want to go back to the doctors.
Then, in October/November 2017, I was watching TV when footballer Alan Shearer came on. It was a documentary that he had done - Alan Shearer: Dementia, Football and Me.
They talked about the confusion I was experiencing. The documentary pushed me to go back to the doctors, along with Carol.
I saw a different doctor who was really understanding and referred me straight away to the memory clinic. In December 2017, we revisited the memory clinic for a diagnosis. I remember that the man was a nice guy and spoke very carefully. That’s when I was diagnosed with young-onset dementia. I was 57 years old.
That was a big shock. But I had been panicking before the diagnosis. So at least I now I knew that there was a reason for what was going on.
Finally in January 2019, after brain scans, I was diagnosed with Alzheimer’s disease.
My advice to others in a similar position
I still have a life. I want to do something and change things. But there were four years where I didn’t know what was wrong. That’s four years wasted. Time is key.
You can’t afford to waste time when you’ve got dementia.
My advice to anyone worried about themselves or a loved one - don’t go on your own to the doctors like I did, take someone with you. I think that would have helped with getting an earlier diagnosis.
If you are worried about your memory or the memory of a loved one, we are here for you.
Call our Dementia Connect support line advisers on 0333 150 3456 - they will listen to your situation and provide dementia information, advice and support.