Real stories

‘Talking about my dementia makes me feel included’ - John's story

I lost touch with a lot of people when I found out I had dementia. They were worried because they didn’t know how to approach me, which made me feel really sad.

My cousin Les continued treating me normally – it didn’t scare him, we’d go down the pub and we’d laugh about it together. That meant the world to me. If you have dementia you want to be included, you still want to feel part of things. Life goes on.

Talking about dementia shouldn’t be awkward

When I felt more confident about the situation myself, I came out of my shell. I said to people, ‘talk to me about dementia, it’s nothing to be embarrassed about, I’m still here and let’s talk about it.’ People started to, and things got better.

And that’s the advice I would give anyone – there’s nothing to worry about, talk about dementia, get it out in the open. 

When people don’t talk to me, because of my dementia, it makes me feel invisible.

I love it when people ask me questions because I feel included. It makes me feel like people care. It gives me an opportunity to show that people with dementia exist, that we can still contribute to what’s going on around us and that life goes on. It makes me feel good – it makes me feel like me again. 

You can’t catch dementia

The most ridiculous, and you could say funniest, situation I have been in was when I was on a cruise two years ago. We were sat with a young family at breakfast having a nice chat, all getting on really well. The mum was trying to remember a word and she said – do you ever get that, forgetting things? And I said I get that all the time because I have dementia. Well, the blood drained out of her face, she took her kid and couldn’t get away from the table quick enough. She didn’t know what to say.

Her husband apologised for her rudeness and said she was worried she was going to catch it. Catch it? I mean honestly! That really opened my eyes to how some people think of dementia.

In the end you have to be able to laugh about it – because if I didn’t I’d cry. 

Dementia Action Week is important because it’s about making a difference for people like me. It reminds people that I do exist, that dementia does exist. And we can all play a part in getting that message out there and improving the day to day lives for all of us living with dementia.

Get the conversation started by sharing our film

Alzheimer’s Society’s research shows that many people are worried about ‘saying the wrong thing’ to people living with dementia. And despite almost all of us knowing someone affected, two out of every three people living with dementia report feeling isolated and lonely.

Share our film to help challenge misconceptions and show that people with dementia are still themselves, all you need to do is ask.