Keith Day sat with his family

How I eventually accepted my dementia diagnosis

When Keith was diagnosed with dementia, he didn’t believe it at first. Now at a place of acceptance, Keith reflects on the steps he's taken to get there, and why when it comes to getting a diagnosis, it's always better to know.

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.

Keith with his wife and family on a day out

Keith (centre) with his wife Elaine (below centre) and the rest of the family

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.

A close up of Keith's caravan

Keith's beloved caravan, that he, Elaine and the rest of the family regularly have holidays in

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.  

Keith taking a selfie

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.

Take our demystifying dementia quiz

Take our quiz today, and challenge your MP to do so too.

Take the quiz

9 comments

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My mother recently had two brain bleeds which have given her dementia. She is 87 and was very fit and healthy before. How do we explain to her that she cannot go home and be cared by her partner.

My husband was diagnosed withAltzheimer’s disease in April. We’re both struggling to accept this. We’ve not had any follow up advice and are not sure what to do. He is having acupuncture to help with his anxiety and stress but would welcome any advice.

Hi Dawn,

Thanks for getting in touch, and so sorry to hear you've been struggling and haven't received any follow-up advice.

The first thing we'd suggest is to call our Dementia Connect support line on 0333 150 3456 to speak with a dementia adviser. They will listen to your situation and provide information, advice and support specific to you. Read more about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

We'd also recommend looking at our range of publications, which you can read online, download or order for free: https://www.alzheimers.org.uk/get-support/publications-factsheets/full-…

In particular, The dementia guide is our comprehensive booklet for people living with dementia after a diagnosis: https://www.alzheimers.org.uk/get-support/publications-factsheets/the-d…

We also have a practical guide for anyone caring for somebody with dementia: https://www.alzheimers.org.uk/get-support/publications-factsheets/carin…

You may also be interested in our online community, Talking Point, where you can talk to others with similar experiences, ask questions and share advice: https://forum.alzheimers.org.uk/

We hope this is helpful for now, Dawn. Please know that we're here for you, and call our support line for more tailored advice and support.

Alzheimer's Society web team

Inspirational positivity, Keith............but then again that's what I would have expected from you anyway. Bravo !

Thank you for sharing your story. My mother was given a diagnosis of Alzheimer’s disease about 4 years ago, although I already knew what the problem was, having worked in the field for many years. She has medication and is doing quite well. Initially she was visited with someone from the memory clinic. Then, prior to Covid, I was told that the memory clinic would no longer be monitoring and that role would go to her GP although the worker did not know what plans the GP had to monitor. Apart from the initial assessment by the GP, mother has never been called for review by her GP, so it is about 3 years since she has not been seen. I am not concerned because of my knowledge about the illness BUT I am concerned for the people out there who do not have family to monitor them.

Thank you Keith for sharing your story. I commend you for your positive outlook and for being willing to share your experience to help others understand Alzheimer’s and how to manage it. You are proving life doesn’t end once you have a diagnosis.

Thanks Keith, I am having a similar journey with getting a clear diagnosis just recently had some helpful confirmation of some most early changes in the memory management place of my brain that explains a lot. I have found my interest in the symbolic language of the book of Revelation a God send for understanding some of the different findings of Dementia researchers in particular the bits that can be better understood as the most early markers which by themselves don't yet qualify for a dementia diagnosis which as you know depends on the more sensitive Brain scan.

My husband was diagnosed with the same dementia about 10 years ago. He has problems with travel and gets anxious so I have to keep reminding him of our plans. We travel to the same place in Crete and he is happy when we get there but it can be a nightmare getting there. He has to do things his way and even if it annoys me I have to be placid and calm. I think this dementia is not often spoken about and everyone seems different.
Both my parents had vascular dementia and Alzheimer’s and I am worried that I might go the same way. But it hasn’t stopped us enjoying life and getting out and about especially on our bikes.

Thank you for this

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