Real stories

Helping to organise a dementia festival and raise awareness in my community

When most people meet me, they don’t realise I have dementia, so it’s important for me to speak out and be open. 

It’s a common misconception that once you’ve got a diagnosis, that’s it – you’re left to see out your days sitting in a high-back chair.

I’ve got fewer inhibitions since my dementia diagnosis. I just don’t seem to worry about getting involved in different activities. 

Sandra, my wife, and I stay busy around all our family commitments, including babysitting our grandkids.

A lifeline for us was joining a local group called the Inn Crowd, a group of around 16–20 people, a mix of carers and people living with dementia.

Ways to increase dementia awareness

Together, the Inn Crowd came up with the idea of the Forget-Me-Not Festival.

We were thinking about good ways to raise awareness about dementia and the support that’s available.

We decided it would be a fantastic way to get the message across to our community.

Once the seed was sown for the festival, we just watched it grow.

I used to be a painter and decorator – I’ve never done any event organising – so everything about the festival was a new experience.

There’s so much to think about, and Sandra and I got involved at every stage. 

At the start, this meant helping to decide on the time and the date of the festival and on a venue. We visited a few places and, as a group, we chose an event space at Leicester City FC’s ground.

Planning our dementia festival 

You name the task, we got involved. 

From selecting stall holders and helping with signage, to promotional posters and website design. It was a real joint effort for the group and Hayleigh from Alzheimer’s Society was an absolute star.

When festival day arrived, I went through a range of emotions, including nerves and excitement.

We volunteered to help, so we were there early to help sort out the finishing touches. It wasn’t supposed to start till 11am but people started arriving early. 

Seeing the venue filling up was amazing. In fact, the whole day was amazing.

I spoke on stage about my diagnosis and then we could relax and enjoy everything going on, including yoga, Singing for the Brain and Bollywood dancing.

Staying active with dementia

The festival flew by. After all those initial nerves had gone, I didn’t want it to end.

One of our aims with the festival was to start conversations among people from Leicester’s ethnic minority groups. We always said, if we could help one person, then the festival has done a brilliant job.

We know that many people have benefited – Sandra and I have had personal feedback about the difference it’s made.

When I first got my diagnosis, it felt overwhelming. My first thought was that life was over.

But staying active, trying new activities and being open about my diagnosis has led to some brilliant new experiences, such as helping Windsor Racecourse become more dementia-friendly and cutting the ribbon to start Leicester’s Memory Walk.

I’d encourage other people to do the same – you get so much support and meet so many lovely people on your journey.