TIDE Champions Carers’ Voices at UCL’s SPIN‑D “Getting Real About Co‑Production” Workshop
In early July 2025, tide made a significant impact at UCL‑East Stratford during the SPIN‑D Festival of Science & Arts—“Let’s Talk Dementia: Fiction, Fact and Hope” As part of the "Getting Real About Co‑Production" workshop, TIDE representatives delivered compelling sessions titled “Involving carers in research” and “Shared Care”.
The workshop focused on embedding carers at the heart of dementia research. TIDE’s presentations emphasised that carers don't just participate but have an equal hand in shaping research priorities, design, and evaluation. Alongside researchers, carers explored ways to foster genuine partnership: early advisory roles, tailored support, and structured mentoring before engagement. These approaches mirror TIDE’s long‑standing model of empowering carers through preparation and reflection.
A highlight of the event was the carers themselves taking the stage. They shared raw, insightful perspectives on lived‑experience research. One carer reflected on the transformative value of co‑production: being listened to—not just consulted—“felt like my experience really mattered.” Such testimonies underscored that carers bring critical, grounded knowledge that institutional research often overlooks.
The Shared Care project, also presented by tide, showcased a collaborative framework for embedding carers in decision‑making throughout the process. It emphasised structures like carer led advisory groups that ensure carers are co‑authors of outcomes.
SPIN‑D co‑hosts praised the workshop’s authentic dialogue. The event demonstrated how carer involvement spans beyond presence to shape research meaningfully—from defining research questions to interpreting findings. As UCL’s festival illustrates, when researchers listen and integrate carers’ experiences, dementia research becomes richer, more relevant, and truly collaborative.
tide’s visible leadership at the workshop highlighted a vital truth: co‑production isn’t a box‑ticking exercise—it’s a relational, co‑creative journey led by carers themselves.