Imagine living with dementia and navigating services that were never designed with you in mind. Appointments move quickly, information is overwhelming, and decisions are often made about you rather than with you. For many people living with dementia, this is an everyday reality — and it is why genuine co-production matters.

We chose to write together because co-production should not end when a project finishes. Too often, people with lived experience are involved at the start, but their voices fade when learning is shared.

Why we made the documentary

The idea came directly from a group of people living with dementia who wanted to speak honestly to health and social care staff about what helps — and what hurts — in care settings, particularly hospitals. Reaching busy staff face-to-face is difficult, so the group decided that a documentary would allow their voices to reach further, be used in education, and be shared widely.

Crucially, this was not a project designed for people living with dementia. It was designed by them. They shaped the focus, chose the messages, appeared in the film, and stayed involved throughout. Staff were there to support the process, not to control it.

What co-production looked like in practice

This experience challenged common assumptions about who can be involved and how. Meetings were paced, flexible, and informal. People contributed in ways that worked for them, without pressure or testing. The focus was on trust, relationships, and respect — not on perfection.

What mattered most was sharing power. When people living with dementia were trusted as experts in their own lives, co-production was not only possible, it was transformative.

Reflections from a practitioner

This project changed how I understand co-production. Watching people living with dementia lead, challenge, and inspire was humbling. One of the most powerful moments was the public launch, when contributors received a standing ovation — recognition of their expertise and leadership.

The documentary is not polished, and that is intentional. Made on a very small budget, it shows that meaningful co-production does not require extensive resources. Its authenticity comes from allowing people’s voices to remain their own. Several contributors are now at a later stage of dementia, making their decision to share their voices when they could even more significant. Their words continue to educate and influence practice — that is their legacy.

Reflections from someone living with dementia

I didn’t think of this as “co-production”. I thought of it as being asked to talk honestly about my life. So often, people talk about us instead of with us. This felt different. We were involved from the beginning, and what we said genuinely shaped the film.

We were treated as people, not diagnoses. Nobody rushed us or dismissed our ideas. Being involved gave me purpose and dignity. Knowing my Dementia will advance only makes my voice more urgent. I am speaking now so that these words can shape care long after I’ve lost the ability to share them. That is the beauty of this documentary: because it was genuinely coproduced, it will continue to speak for us when we can no longer speak for ourselves.

When I watch the documentary, I don’t see a perfect film. I see honesty and courage. My hope is that staff don’t just think it is moving, but ask themselves what it would mean to really involve people like this in their own services.

Watch the documentary

The documentary is freely available and designed for use in health and social care education. Watch Hear our voice.

Co-production is not about perfect methods or large budgets. It is about sharing power, working at a human pace, and trusting people as experts in their own lives. For those working in older people’s nursing, we hope this encourages reflection not on whether co-production is possible — but how it can be made possible in your own context.