Real stories

How I eventually accepted my dementia diagnosis

I was born in Lancashire, and have lived in several different places. My wife, Elaine, and I moved to Kent 26 years ago as this is where she is from. We have been married for 46 years and I love my wife more now than when I met her. 

I have done many different jobs including carpet fitter and being in the navy. But I have spent most of my working life in 'caring' positions. I was a Citizens Advice Bureau volunteer, a bereavement counsellor, and a residential social worker in a children’s care home. And most importantly, I was a 'house husband' as well as my wife was the main wage earner. 

I am a born-again Christian and enjoy participating in my local church. I also enjoy arts and crafts. I did cross-stitch, which is like a form of tapestry. My eyesight is not as good as it was now, so I also enjoy painting watercolours. 

And I was diagnosed with dementia in 2016. I have Frontotemporal dementia. 

Knowing something was wrong 

I retired from my job in 2014, but over the next two years, I felt depressed.

Once when I went on holiday, I spent the first ten days not talking to anyone.  That was not like me.

I also noticed I was doing strange things like putting the phone in the fridge. Looking back now, I realise that I was beginning to forget things in my last year of working. 

My wife and I saw our doctor. My wife said, 'He is not the man I married'. That rang bells for the doctor. So I went to the memory clinic.

When I was diagnosed, I didn’t accept it for the first three or four months. What I had didn’t match up to what I thought dementia was. I know I am not alone in this. 

I went back to the psychiatrist and said, 'I’m not happy with this'. But gradually I began to read more about it, and I recognised some of the symptoms.  

Meeting other people affected by dementia 

My first peer group meeting was very important. My wife and I went, and we were put in a meeting with lots of other couples. I found what people were saying was really interesting.  

At the meeting, we were split into two groups – the people with dementia and the carers. In my group, people began to say how they were feeling.

I remember one man said that he might begin to cry. I really recognised that.

That meeting made a real impact on me, and I got so much out of it.

Negative experiences along the way

I had a really disappointing experience with driving.

When I was first diagnosed, my psychiatrist said that I was fine to carry on driving. But I wanted to do the right thing, so I paid for a driving assessment. And I passed. I also passed when I did another part of the test six months later. 

But the DVLA sent a standard form to fill out to my GP. He hadn’t seen me. He said I wasn’t able to make decisions properly. And the DVLA then wrote to me saying I would have to surrender my licence. 

I knew that the GP had made an assumption that was wrong.

I tried to get that overturned. But I got passed between my GP and the DVLA and a new psychiatrist (the psychiatrist who had given me the all-clear had left the memory clinic). It was really frustrating. 

In the end I gave up. I really missed the car because it meant that my wife and I could go caravanning. I didn’t just lose the car, I lost my holidays as well. But I have let it go now. I now have my bus pass and my railcard.

Now, I have really accepted my dementia.

I know I am still me. I have changed. But I am still me. I think that not worrying about what I can’t change is a big part of that.

I do a lot of work now to help other people understand dementia better and to remove the stigma around it. I really enjoy it. 

Becoming active in the dementia community

Now, I am an NHS Ambassador for dementia. That means I go in and talk to medical students and psychology students. I would love to go into schools and help children understand it as well. I am a 'Dementia Diarist', and work with DEEP as well.  

And I am on the Alzheimer’s Society and Santander steering committee. I have also been part of interviewing panels for Alzheimer’s Society. On top of this, I do work with research. 

Currently, I’m in one steering group with 3NDWG, and one for the NHS care plans/falls and I am now part of the NHS envoy.

But this Dementia Action Week, I am doing something a little different. I am attending the Alzheimer’s Society’s parliamentary reception to unlock more support for those receiving, or yet to receive a diagnosis – right from the top! 

With over 30,000 people still left in the dark about their diagnosis due to the pandemic, we must challenge the common misconceptions around dementia, and call on decision makers to reduce the diagnosis backlog.

We must unlock support for others, just like me. 

Let's challenge the myths around dementia diagnosis

With more people than ever left unaware of their condition due to the pandemic, help us shed light on what a dementia diagnosis really means by taking Alzheimer’s Society’s quiz ahead of Dementia Action Week.

You can then challenge your MP to take part and attend our parliamentary reception to learn how they can help reduce the diagnosis backlog.