Q&A: Keith Day, who lives with frontotemporal dementia

What’s changed most since your diagnosis? 

The way people start looking at you. It seemed as though they heard the word ‘dementia’ and they had this little picture in their head of an old person sitting in a chair at the window, who’s dribbling and can’t remember anything, and therefore that that is what dementia is like. That’s the way that people started to treat me. 

Eventually I found a peer support group and realised that everything I was experiencing, these people were already doing it as well.

From there, I developed the saying, ‘I have dementia, but I’m not going to let dementia have me.’

What would you take to your desert island? 

It would be a book, and the book would be my Bible. To me, no matter what happens, whatever the situation is, there’s an answer for it in the Bible. I always believe, whatever happens to me, that God will never give me more than I can ever cope with. 

How has Alzheimer’s Society helped you? 

When I got in touch with Alzheimer’s Society, the lady I was talking to said, ‘I’ve got something here that you might be interested in,’ and it was the Santander Dementia Steering Group. 

I joined with that and found I was talking to people that understand what I’m going through, they listened to what we said, and I watched all the changes that have happened within Santander.

Doing that, it’s given me my self-esteem, my self-worth back. And from there, I’ve just never looked back. 

What song or tune sums up your life so far? 

It would have to be the Beatles’ The Long and Winding Road, because that is what dementia takes you on. One minute you think you’re doing fine, the next minute you get down a bit – it is long and it is winding. 

What single thing would improve your quality of life? 

It would be getting my driving licence back. Where I live, on the Isle of Sheppey, it’s awkward for transport and a lot of the time I have to say sorry I can’t do things. If I had my licence back, that would be so much of an improvement for me. 

If you could go back in time, where would you go? 

I’d go back to the 80s, around 1985.

I had a caravan and before that a trailer, and I remember every weekend, every school holiday, we’d go out and we had so much fun as a family.

Good memories – I would love to do that all over again! 

What is your most treasured possession? 

Obviously my wife and family, but if I had to choose something else it would have to be my photograph album. 

It takes me back to all the good memories that we’ve had.

If it gets to a stage that I’m forgetting who my wife is or who my children are, with the pictures I might not remember the names, but I will always, always remember how it made me feel.