Real stories

Connecting with people who understand dementia can make a real difference

I want people to acknowledge that anyone can get dementia – not just old people, anyone – and we need help.

If you can get an early diagnosis, your life’s not over. There are actually groups out there, but when you get diagnosed they don’t always tell you that you can still have a life.

I watched my mummy, who had dementia, she just sat in front of the TV all day, every day. It was a shock when I got diagnosed – I didn’t want to be like that.

For six months after my diagnosis, I was completely lost. It was only by luck that our daughter was at the library and saw a notice for the Dementia NI Empowerment Group, otherwise it might have been longer.

Going to a dementia support group

When I went to the group, I just knew that they understood me. They turned my life around and helped me so much.

I remember commenting on the medication I was on and that I was getting bad dreams. One of them said, ‘Go back to your doctor and you’ll get put on another one,’ and so I did. I wouldn’t have known that, I would have just tried to live with it.

They are just like me, we don’t get embarrassed, we don’t think we’re stupid, we just enjoy going out and doing things – you just feel normal.

We go on outings, wee walks and then go in for a cup of tea and a biscuit. We have people come from Age NI, Dementia NI, Alzheimer’s Society – all different places – who talk with us and keep us up to date.

I’m still me. I tell my grandkids that part of Nanny’s brain doesn’t work right, so she’s going to forget things.

But somewhere in there, there’s still me. And while I can remember, I want to get out there and enjoy my life and what I have.

Raising public awareness about dementia

I love going out to do talks and to raise awareness. I tell my story at different groups – to the Bar association for Northern Ireland, the Food Standards Agency and events with politicians at Stormont.

Me and my husband David, we speak to healthcare students through Time for Dementia, with both Alzheimer’s Society and Dementia NI. We’ll have Zoom meetings with students so they can learn how to approach people, plus we have ones that come out to the house. It’s been absolutely brilliant.

I was in a two-page story in the Belfast Telegraph a couple of years ago about working while you still have dementia, and there were wee clips on Facebook.

I would meet people I hadn’t seen for years who would turn around and say to me, ‘Oh, I didn’t know you had it.’ Then I’d get talking to them and it opens things up.

If someone in their family now gets diagnosed, they know something about it. 

They can turn around and say, ‘I know a girl, Julie, she’s still working in the council.’

Every wee bit of information you get out there is helping someone else. Being able to help others like me makes the journey I have been on feel more worthwhile.