Advice

Being visible in your community can raise people’s awareness of dementia

My Daddy Sean had run his own business for 43 years, a men’s clothing shop. He had been very involved in the community. He was one of the founders of the Strabane Enterprise Agency, he raised money for cancer research and more. 

When he was diagnosed with early-onset Alzheimer’s, it was a shock to us, even though his mother had it as well. 

For the first few years he was able to drive, he was just a bit forgetful. But the journey with dementia can be flat for a while and then there’ll be a dip, then it could go flat for another while and there’ll be another dip. 

I realised that we had to make the most of every moment, because you don’t know when a big dip is coming. 

Dancing for joy 

I found out about the Dementia Friendly Tea Dances held in Derry, 15 miles away. Daddy always loved to dance so we went, and it brought us such joy! 

Daddy would know the man who was singing. He would know people’s faces, but he’d started to forget people’s names. We went to the Mayor’s Tea Dances every month too. 

I would take a video and post it on Facebook, Instagram and LinkedIn. I wanted to let people know about the dementia-friendly dances, and for them to see how much Daddy got out of it. 

You have to meet the person who has dementia where they are at. 

They’d say, ‘When I see you and your Daddy dance, it makes me appreciate how I must spend more time with my parents, how we never know what’s around the corner.’ 

It was raising awareness all round. And he loved that people would come up to us and say, ‘Oh Sean, we saw you dancing!’ – he lit up. 

A real event 

I had long, curly hair and I thought I would like to do a fundraiser to create more awareness about dementia. So I said, ‘I’m going to just shave it all off, and I’m going to do it for Alzheimer’s Society.’ 

Daddy at this stage had gone into a nursing home. I asked the manager if we could do it there, and we agreed to make it a live event on Facebook. 

I put in that I’d raise £1,000 but then I thought, ‘Oh, that’s too much.’ In the end, there was over £8,600. 

People knew our story. They’d watched and shared the videos of Daddy and me dancing on social media. Speaking to people in our hometown about it was really emotional – everybody told me lovely wee stories about him. 

The home organised a singer and decorated the place. We had it on posters and it was covered in local newspapers. 

After we did the head shave, Daddy and I danced to The Way You Look Tonight – there wasn’t a dry eye in the house.

I hope we’ve helped people to understand more. Daddy has dementia now, but he’s still that man with the big heart that brought us up and loved us. You have to love them where they are.