The DETERMIND participant conference

Author: Ariane Lee

Hi, my name is Ariane and I’m a Research Assistant at our Sussex site.

On 22nd October 2025, we came together for our third DETERMIND Participant Conference, held at the London School of Economics and Political Science (LSE). It was such a fantastic day, bringing together DETERMIND participants, researchers, and analysts to share our findings and to look ahead to what’s next for the study.

We had researchers join us from across the DETERMIND team, including colleagues from the University of Sussex, University of Nottingham, University of York, LSE, Newcastle University, Brighton & Sussex Medical School, Sussex Partnership NHS Trust, King’s College London, and the University of Brighton, as well as our amazing PPI group.

Together, we shared and discussed some of the key topics we’ve been working on, including self-funding of care, inequalities in accessing services, the importance of decision-making, and how the timing of a dementia diagnosis can affect outcomes. A link for the summary of these talks can be found here:

Summary of talks: DETERMIND participant conference

One of the highlights for me was a workshop led by Luce Stewart and Natalie Tawney from King’s College London. We spoke about what it’s really like to take part in DETERMIND. It was great to hear that many participants value how flexible the study visits are, the advance notice we give, and the space to talk openly. Participants also shared helpful suggestions, for example, that some of the scales we use can feel a bit confusing, and that visits can sometimes feel long or cover emotive topics.

Looking ahead, participants told us they’d love to hear more about research findings during visits and be more involved in shaping future projects. It was also really meaningful to hear what participants feel makes a difference to the visits such as having researchers who are friendly, patient, and understanding of how dementia can affect memory and thinking.

A huge thank you to everyone who joined us, to our brilliant team and organisers, and to LSE for hosting such a great event!