Real stories

Making a difference: Pete’s Dementia Voice journey

“I wanted to have a voice.” That’s how Pete describes why he first got involved, becoming a Dementia Voice Partner in 2020 during the first Covid-19 lockdown. 

Pete lives with early-onset dementia and is a passionate contributor to Alzheimer’s Society’s activities. His experiences help shape our work through regular involvement in national and local activities.

Benefits of Involvement: Why it matters to Pete

Pete’s Involvement has brought joy, purpose, new friends, and unforgettable experiences.

I love doing the things that I do. What better therapy is there than that?

“I get to learn interesting things and meet interesting people, says Pete. “The more I do, the more I’m informed about what Alzheimer’s Society is doing and I can be a better ambassador for them. Knowledge is power. It gives me more than I give them, I think.”

But most importantly, it has helped him feel empowered to make positive change.

He says: “Showing people that a person living with dementia doesn’t have to be just a victim. We can have dignity and self-esteem.

“Without Alzheimer’s Society and the opportunities they give me, I don’t think I’d still be here. I’d have died of boredom and frustration, because I wouldn’t have the chance to exercise my brain. 

Alzheimer’s Society’s work has been fundamental to me. It’s been a great journey, and long may it continue.

It’s not just Pete who benefits; we all do from hearing his voice. Pete has impacted our data collection methods, our volunteering strategy, and so much more. And you can too.

How Pete gets involved with Alzheimer’s Society

Like many people who become Dementia Voice Partners, Pete has accepted invites to get involved with lots of our activities. These have included:

• Participating in our Dementia Voice National Group. The group meets by Zoom call twice per month. The group helps Alzheimer's Society teams and other organisations to develop and improve projects or services. This has included working with British Airways, the Welsh Ambulance service, financial services, and more.
• Co-produced an edition of our Dementia together magazine.
• Presenting in 3 Nations Dementia Working Group (3NDWG) webinars.
• Being a part of a Channel 4 documentary on the challenges of living with dementia during the Covid-19 pandemic.
• Attending events, networking, and meeting people, from meeting his local vicar to attending national conferences.
• Contributing to dementia research projects.

Pete also writes a personal blog about daily life with dementia, sharing reflections on everything from public transport to personal care plans.

“I love engaging with real people,” says Pete. “I want to recruit as many people as I can to get involved. We need your voice.”