Real stories

Sharing my experiences to campaign for better dementia diagnosis

When my husband Idwal received his diagnosis of vascular dementia, I felt totally unsupported. I was numb.

I had all these questions running around my mind but, apart from being given a few leaflets, we were packed off without any support. I thought, ‘What am I going to do now?’

I’m not a hard person, but I’ve got a lot of fight in me. I’ve had to deal with tough things in life and that’s given me the oomph to speak out and get things done.

How I became a dementia campaigner

After the experience of Idwal’s dementia diagnosis, I didn’t want to sit back. I want to change the experience for other people. 

I don’t want anyone to come out of an appointment feeling like I did – not knowing where to go and petrified of what was ahead.

I got involved with campaigning after Idwal started going to activities organised by a local organisation called Dementia Actif Gwynedd.

Their manager Emma mentioned that they were having a meeting with local councillors and asked if I wanted to get involved.

She knew I was comfortable speaking in public in Welsh. I used to work in student services at a local further education college, and it was something I was used to.

I agreed and went along to tell my story.

Since then, I’ve got involved with as many activities as I can. These include helping to create a bilingual carers directory, so people understand what support is available for them.

Make dementia a priority

I want to make a difference. If I can help in any way, I will. If something isn’t right, I’ll say. 

Like the time Idwal was discharged from hospital and I wasn’t told – I made sure the staff knew this was unacceptable. Anything could have happened to him.

I’ve spoken on BBC Radio Cymru about my experiences and at Plaid Cymru and Welsh Labour party conferences.

I don’t really feel nervous doing these events, I’m so focused on getting my story out and helping other people.

There’s no point in giving people statistics and cold facts. I’m there to give them my personal story about what it’s like caring for a person with dementia.

I want the people making decisions to understand our needs and make dementia a priority.

Speak out about dementia

We have to shout loud about dementia. It’s not like when you’ve broken your arm or you’ve hurt your face – it’s not obvious, you can’t see it. It’s hidden. I want leaders in Wales to sit up and listen.

My hope is that people will not be in the same place as me when Idwal was diagnosed. I don’t want to see the partners, friends and family of people who are newly diagnosed with dementia left on their own.

If enough of us speak up, hopefully the system will improve eventually.

Campaigning helps me but the main thing is that it helps other people, that’s what I care about.