Real stories

Creating my own dementia support group after my diagnosis

I will continue to fight for better support for people who are newly diagnosed with dementia. 

I worked as a nurse for 17 years, so I naturally want to care for others. It’s at the beginning when you need it most and I don’t want anyone to go through what I did. 

Difficult diagnosis

My diagnosis was long and difficult. In my late 50s, I had three strokes.

Then two years ago, I noticed that I was becoming forgetful. 

I put it down to getting older, but my GP sent me to a memory clinic. Initially, I was told that I probably had vascular dementia. With further tests, including a PET scan, I was diagnosed with frontotemporal dementia. 

I didn’t take the diagnosis too well. I asked the memory clinic for help – I said, ‘I need some support, some back-up,’ but they couldn’t offer anything. 

I had no one to turn to. It felt like I was sitting at home waiting to die. 

Helping people with dementia

I didn’t want anybody else to feel the way I did. By chance, I spotted on Facebook that Denbighshire Voluntary Services Council (DVSC) was looking for someone to set up a dementia group in Rhyl. 

I met Becky from DVSC and my life changed. We called the group Precious Memories, advertising it locally and through Becky’s contacts. 

As soon as I started meeting people like me, who didn’t judge or treat me different, my perspective shifted. 

Engaging activities

We meet every week and we have a timetable of activities. 

It could be a music quiz, a performance from a ukulele band or a police officer giving us advice on avoiding scams. And I always bring a tray of my famous butties! 

I don’t want it just to be us sitting around talking about dementia. 

It’s very, very laid back, sociable and we laugh and joke. It’s respite for the carers too – the chance to see another side of the person with dementia. 

Meeting new people

Precious Memories helps me channel my energy and keep my mind occupied. I try to meet other people who run dementia groups in different areas, which is inspiring. 

The group has helped me build a new life and given me confidence to meet new people. I’ve even set up another group called Ladies Who Do Lunch, which is about 12 friends who have lunch every week. 

I don’t feel lonely any more and it’s rewarding to know I am making a difference to people’s lives. 

Helping others and being their voice has given me a new purpose.