Real stories

It’s time for politicians to listen to people affected by dementia

Earlier this year, I was asked to get involved with the planning of the upcoming drop-in event that will be taking place in Westminster during Dementia Action Week. I’ve always been interested in politics, so was keen to get involved in any way I could. 

I have been part of a working group since February, made up of people with lived experience of dementia, who meet fortnightly to support the planning of the upcoming reception for MPs in Parliament.

This year the theme of Dementia Action Week is diagnosis, which is so important. You can’t just carry on and pretend everything is okay, getting a diagnosis starts the process, and you can start to come to terms with everything.

Campaigning with Alzheimer's Society

When I was diagnosed, I got given a leaflet for Alzheimer’s Society, not realising that they covered all types of dementia. It took me a year to come to terms with my diagnosis before getting involved with any volunteering – it’s been a great way for me to keep active. 

Last year, I was at the Labour Party conference with Alzheimer’s Society and had the opportunity to speak with MPs about my experience of dementia. It was great to speak to people who wanted to listen and it was good to see MPs showing an interest.

People don’t often talk about dementia and many MPs don’t have a personal connection. Being able to share my story meant that they had to pay attention. I had a frightening diagnosis experience, and it really shocks MPs when I tell them what happened to me.

I was really pleased to see politicians standing up in Parliament and talking about dementia after I’d spoken to them at the party conference.

Being involved from beginning to end

It’s great to be involved from the start with projects like this as we can help to shape the event from the very beginning. For example, I suggested bringing back a maze game we used to demonstrate the current challenges in people’s journeys with dementia because it went down so well at the party conferences.

I’ve loved being involved and I can’t wait to be in Parliament next month and see it all come together.

I’ve made loads of friends through the different working groups, meeting new people, and hearing their stories. I didn’t know anyone with dementia before, but now I’ve got all these new connections.

Making a difference by telling my story 

Politicians listen to people like me who have dementia, it makes them stop and think.

I was delighted to hear feedback from an MP who I spoke to at last year’s party conference, who said hearing my experience was really impactful. 

It’s motivating to know that I am making a difference, that’s why I encourage everyone to get involved however they can.
It’s really powerful to have the combination of the team, who have the research and knowledge, alongside people like me who have the real-life stories.

All it takes is one person to make others aware of what needs to be done.

Getting politicians to attend Alzheimer's Society's Dementia Action Week event

They’re the people at the top who are running the country and who can make changes – they’re the ones who need to hear our voices. 

Politicians need to know it’s important to their constituents. So many politicians came to visit our stand at party conference because of requests from constituents – so it works.