Lack of professional support made getting my dementia diagnosis more difficult

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.

Steven Freer and his wife Carol, dressed up for an occassion

Steve with his wife, Carol

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.

Our dementia advisers are here for you.

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.

Learn more about dementia

This World Alzheimer’s Month, we are encouraging everyone to ‘know dementia, know Alzheimer’s’, to recognise the signs and symptoms and to reach out for help.

Symptoms of dementia

8 comments

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My husband was diagnosed in 2010 with vascular dementia. We had no support, and the way my husband was told, was not kind. He is 91yrs now, went into a home in 2020, not a home of my choice. Trying

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Jenny, we're so sorry to hear this.

Please call our dementia advisers (0333 150 3456) if you ever need support, advice or information. More details about our Dementia Connect support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

You may also find you benefit from talking with other people affected by dementia. Talking Point is our online community that's open day or night for carers, family members and people affected by dementia to share their experiences: https://forum.alzheimers.org.uk/ Browse conversations, or register for free to become a member.

We hope this helps, Jenny. Do call our support line if you need us.

Alzheimer's Society blog team

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I was diagnosed 23/12/2020 with young onset vascular dementia at 57 after suffering a number of mini strokes. We can trace my problems back a number of years and saying we were shocked is an understatement. When We finally had a diagnosis and something to work with we thought it would lead to help in some way but have found the lack of it difficult to understand. We have found it difficult to find anybody with young onset so the above comments are really interesting. I am fortunate having a large close family and without their support and understanding would be finding the whole thing extremely difficult. I am due my first follow up assessment late October which is my only contact with anyone since December. I have been really disappointed in the support we have been offered so looking to the future does not bode well.

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Hi Billy, thanks for sharing your comment.

We are also disappointed to hear about the lack of support you have been offered since your diagnosis, but relieved to know your family have been supportive in the meantime.

Please do call on our trained dementia advisers (0333 150 3456) if you ever need dementia information, advice or support. They will listen to your situation and provide insight relevant to you. Find more details about our Dementia Connect support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

You may also find you benefit from talking with other people affected by dementia. Talking Point is our online community that's open day or night for carers, family members and people affected by dementia to share their experiences: https://forum.alzheimers.org.uk/ Browse conversations, or register for free to become a member.

Lastly, if you were interested in sharing your story for a future blog post, we would love to hear from you. Writing about how you've been affected by dementia can offer some relief for both the author and the reader. If this is something you'd like to chat about further, you can email our team at [email protected]

We hope this helps for now, Billy.

Alzheimer's Society blog team

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I agree, I think we need to have courage to return to the doctor about anything that is worrying- forgetting, making mistakes, and if medicines are no helping.
Sport is important and other things like eye contact and all senses .

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I was “misdiagnosed “ with having had 2/3 strokes and dementia and told if I was lucky I had a few years left! Only problem is now I have no faith in medical professionals and question we’re they right first or second time. I saw what my mum went through and now have a morbid fear of the illness

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This person's experience exactly mirrors that of my husbands alzhiemers journey even the same age .I've supported my husband from the very beginning of his fight with this disease and still recall the day that a doctor said he had to pull him self together and and try to get on with normal things in life .my husband was devastated that was in 2009 and he was 56 years old and still worked as a foreman welder in a fabrication shop .he had no support at work and faced ridicule and embarrassment from the manager and work colleagues due do him forgetting to order components for jobs my husband couldn't take the stress of it any longer and had a nervous breakdown and never returned to work his condition has deteriorated so much since then that he is now in a care home since 2019 this has had a massive impact on me and his family and I still cant believe that it's been 2 years in october the he went into the care home to give me some respite but he has never returned home as was diagnosed with severe dementia .this disease is a terminal illness and more should be done for the family left to pay the care home fees as there lives are just as affected hugely by the circumstances of there lived one having to go into care

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I find more and more as I go through life that there are many people who never try not be in other’s shoes. I really emphasize with you. You have been through a lot. I know it is hard to go through this day after day for years and be neglected by society. Try to find comfort in the fact that you faced a challenge so hard that most people could never imagine it and you survived.

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