Keeping it real – why community engagement really matters to me

At the Centre for Applied Dementia Studies (CfADS), we talk a lot about making research meaningful and relevant. For me, community engagement is one of the ways we make that happen – it’s not an optional extra, it’s at the heart of what we do.

I’m an Assistant Professor at the Centre, and my role includes dementia care training and leading our Experts by Experience group as the Patient and Public Involvement Lead. I also volunteer outside the university, supporting people with young onset dementia through the Pathways group. That blend of academic work and community involvement helps me stay grounded. Being with people living with dementia reminds me why this work matters. It keeps my feet on the ground, keeps things real, and gives me a chance to give something back to the community I work in.

I was born and bred in Bradford, and I’ve worked with people living with dementia here since I left school, across the private, statutory, and third sectors. That experience has given me a deep understanding of the city, its people, and its strengths. I feel a strong connection to Bradford and the local community, and that’s something I bring with me into my role at the University.

The University of Bradford places a real focus on connecting with our city – its communities, its challenges and its potential. That focus on place really matters to me. It means we’re not doing this work in isolation. We’re doing it with Bradford, not just in Bradford. But our reach doesn’t stop there. Since the pandemic, we’ve been working with a wider community. Our Experts by Experience group is now spread across the UK, which brings a real richness to our work that simply wasn’t possible before. When people with dementia and unpaid family carers were taught and supported to use Zoom, it opened up a whole new way of connecting. This hasn’t just benefited us at the Centre – it’s also added value for our local members, who now get to learn alongside others from different areas and backgrounds.

Our Experts by Experience group is also part of the DEEP network – the Dementia Engagement and Empowerment Project – which connects us to other groups across the country led by people living with dementia. Being part of DEEP means, we’re linked into a wider movement that shares the same ethos and values around inclusion, respect, and challenging stigma. The DEEP approach has shaped how we work – making sure that people with dementia are not only included but are central to decision-making, shaping priorities, and leading change. It’s helped strengthen our own group and keep us rooted in the principles of empowerment and equal.

The Dementia Experts by Experience group is made up of over 160 people who either live with dementia or support someone who does. They’re at the centre of everything we do – involved in shaping and taking part in dementia research, education, and training, as well as teaching students across the Faculty of Health. Their voices guide and challenge us, making sure the work we do is grounded in real-world experience and relevance.

We’re continually learning from each other. It’s added huge richness to my own work and to the work of the Centre. The diversity of experiences, perspectives, and voices across the country helps us ask better questions, reflect more deeply, and stay connected to what really matters.The Pathways group (also a DEEP group) plays an important role. It offers a space where people can talk openly, share their experiences, and support each other. It’s not just support, it’s insight. What I learn from that group feeds directly into my thinking and approach at CfADS. It’s a two-way connection that makes the work stronger and more human. It’s what makes the work meaningful for me, in order to work with the people for whom our work is aimed at making a difference.

And I’m not the only one. My colleagues in the Centre are committed to working with our Experts by Experience. My colleagues Dr Ana Barbosa and Helen Young, and former colleague, Dr Andrea Capstick also volunteer with the Pathways group.  That shared commitment to being involved, listening, and showing up outside the boundaries of our job descriptions helps build real trust and bridges the gap between research and real life. When we stay connected to the people our work is meant to benefit, the work gets better. It becomes more useful, more respectful, and more aligned with real needs. Community engagement isn’t just about outreach – it’s about ongoing relationships. It’s collaboration. It’s a reality check. It helps us ask better questions, and it pushes us to be more thoughtful in how we answer them.

I’m proud to be part of a Centre where so many of us don’t just work on dementia – we stand alongside people living with it. That’s where real change starts.

Written by Clare Mason, Assistant professor and Lead of the CfADS Experts by Experience group