PPIE - Why our involvement matters

From Diagnosis to Dialogue: My Journey as a PPIE Rep with Young Onset Dementia

When I was diagnosed with young-onset dementia in my mid-60s, it felt like the world had quietly closed its doors on me. I lost more than memory — I lost identity. I was no longer seen as the professional, the teammate, the parent. Instead, I became "a person with dementia" — a label carrying more assumptions than understanding.

But things began to shift the day I was invited not to take part in research as a subject, but to shape it as a collaborator. I became what's known in academic circles as a "PPIE rep" — someone contributing to Patient and Public Involvement and Engagement. Clunky acronym aside, this is a beautiful idea: people with lived experience helping steer the research that ultimately affects their lives.

Let me be honest — I didn't think I had much to offer at first. But I took a leap and joined a panel. I reviewed an ethics form. I shared what truly mattered to people like me. And for the first time since my diagnosis, someone asked for my input not out of sympathy, but because it could improve their work. That moment lit something in me.

PPIE: Not Decoration, But Direction

Involvement isn't about inviting someone with dementia to the table to make the optics look good. We're not here as ornaments. We're here to challenge, clarify, and often completely reframe your research questions.

When you involve us from the start — in funding bids, design stages, and early consultations — the outcomes are richer, more relevant, and more grounded in reality. We don't just add context; we often redefine the premise.

For instance, I once sat on a project measuring the quality of life in dementia. One question asked: "How satisfied are you with your memory?" Our feedback? That's missing the point. Ask instead: "What helps you live well?" That small change reframed the entire study, shifting it from a focus on loss to one on resilience.

Lived Experience as Evidence

Academic researchers often work in a world of quantifiable metrics — and that's important. But lived experience brings a different kind of data: meaning.

We offer insight into why services are underused, where care pathways fall short, and how systems feel from the inside. That's not anecdote. That's evidence with a heartbeat. Our messy, qualitative contributions often point you toward the questions you didn't think to ask.

The Ripple Effects

Through PPIE, I've helped write plain language summaries, co-designed interview protocols, and even contributed to funding bids. I've shared stages at conferences and helped shape studies on diagnostics, end-of-life care, and assistive technology.

Every time, I see the penny drop: researchers start to realise that practical, human-centred adjustments — like simplifying consent forms or rethinking video call formats — aren't just accessibility tweaks. They improve the quality of the research itself.

But the impact hasn't just been on the studies. It's been on me. Being a PPIE rep gave me back parts of myself that dementia tried to take. It gave me voice, purpose, and community. It reminded me I still have something to contribute — something that matters.

A Message to Researchers

If you're a researcher reading this, here's what I hope you'll take away:

• Bring us in early. Not as a final tick-box, but from the start.

• Make it accessible. Clear communication, fair compensation, and respect for cognitive differences go a long way.

• Listen with intent. Lived experience won't always provide neat answers, but it will offer real ones.

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We're not just participants. We're partners. And when you treat us that way, your research becomes more than rigorous — it becomes relevant.

Because at the end of the day, the most meaningful evidence isn't just what you can measure. It's what you can understand.