Celebrating public engagement in dementia research: UK DRI Engagement Prize 2024

The UK DRI exists to improve the lives of people living with, and at risk of dementia, and public participation is key to achieving our vision of healthy brain ageing for all. We want everyone with lived experience of neurodegenerative conditions to be able to engage with scientists and get involved at all different levels in the research journey. 

Researchers across the UK DRI are engaging the public in their work in many different ways – from networking opportunities, to outreach events, to facilitating involvement in trials and working with members of the public to shape research through steering groups and ethics committees. 

An Engagement Prize is awarded each year at the UK DRI’s annual conference, Connectome, highlighting initiatives and activities in public engagement and patient involvement across the Institute. This year, four exceptional initiatives were nominated: 

Connecting with the public via a livestream event

A team of early career researchers (ECRs) at the UK DRI at Cardiff led by Dr Nikoleta Daskoulidou, organised a raft of fundraising events culminating in a sponsored skydive, raising almost £3000 for Alzheimer’s Research UK. In parallel to the fundraising work, the team designed and delivered a highly successful public facing livestream event, aiming to promote awareness and understanding of dementia research. The event attracted over 1500 live viewers and has amassed over 10,000 views to date. 

Empowering women to engage in neuroscience

Lizzie English (UK DRI at Cambridge) is the founder of Women in Neuroscience UK (WiNUK), tackling sexism and gender bias in neuroscience. This year, she developed and hosted a conference stall and lunchtime session for 200+ people on 'Tackling gender gaps in dementia research'. As well as supporting current academics, she inspires the next generation of neuroscientists, through leading educational neuroscience and careers cross-platform content involving diverse role models. WiNUK's virtual events have included applications advice, leadership coaching, computational neuroscience, and neurodiversity – all platforming female-identifying diverse researchers to support each other, future neuroscientists, and the public. 

Making science approachable and enjoyable for all

Across 14-15 June 2024, the Great Exhibition Road Festival welcomed a record number of visitors to celebrate science and the arts. Volunteers from the UK DRI at Imperial proudly hosted three engaging stalls, each presenting different areas of the centre’s cutting-edge research in fun, creative, and accessible ways. Visitors enjoyed a variety of interactive activities, from using cat ear headsets to explore the importance of sleep, to creating artwork by blow painting glial cells. The goal was to make science approachable and enjoyable for everyone, sparking curiosity and promoting a deeper understanding. 

WINNER - Implementing a strategy for patient and public involvement

Sophie Horrocks (UK DRI Care Research & Technology) has advocated for, created, and implemented a three-tiered strategy to connect researchers with people with lived experience of dementia in a mutually valuable manner. She created a community group for participants in the centre’s flagship Minder study, a ‘Friends of CR&T’ network of interested members of the public and professionals that can be approached for involvement activities, and a Dementia Lived Experience Group (DLEG) of 16 highly engaged people with lived experience and includes those with a diagnosis of dementia to contribute to the centre at a strategic level, guide projects and funding applications, and advise researchers.

A member of the DLEG said:

“When I first met Sophie I was immediately struck by her energy, enthusiasm and how welcome she made us all feel. This has not changed as time has gone on. Sophie’s passion to ensure the public voice is heard is clearly demonstrable in the safe space that has been created.”

Sophie’s work has been immensely valuable to the centre, and the wider UK DRI, and she was awarded the UK DRI Engagement Prize for 2024.

On receiving the award, Sophie said: 

“It is critical that people affected by dementia remain at the heart of all we do, to ensure our research remains relevant and meaningful to the real world. It is a great privilege to work alongside members of our Dementia Lived Experience Group, people affected by dementia and colleagues who share this understanding and have helped develop true collaborations and partnerships in our research. 

I am deeply honoured to see this work recognised by the wider Institute. I hope it can help demonstrate the value of public involvement in research to others in the field, and that together we can continue to build on these foundations over years to come to help creating lasting, positive change in dementia research.”

The initiatives celebrated through the UK DRI Engagement Prize exemplify the transformative power of collaboration between researchers, patients, and the public. By fostering meaningful connections, sharing knowledge, and amplifying diverse voices, these efforts advance the understanding of neurodegenerative conditions, inspiring hope for a future free of dementia.