LEND project update: learning from lived experience

At our September programme meeting, the team discussed the valuable insights gathered through LEAP (Lived Experience Advisory Panel) meetings, where people with lived experience have shared how dementia-related stories and narratives resonate with them.

Work is continuing across the first work package, including surveys, interviews, narrative validation, focus groups, and planning for a discrete choice experiment. These activities will help build the theoretical foundations for the LEND intervention and support a clearer understanding of how lived experience narratives may create change for people living with dementia and carers.

The team also discussed how narratives will be described, categorised, and recommended within the future digital intervention. This included discussions about whether a fixed set of narrative characteristics is the right approach, and how this might work alongside modern recommendation systems. Accessibility was also raised as a key priority, including the importance of audio options and alternative ways of accessing content.

Ethics work is progressing, with minor revisions and clarifications being addressed. The team also reviewed the project timeline and discussed how different parts of the work will overlap as the project moves forward.

There was further discussion about publication planning, including the value of sharing learning as the project develops rather than waiting until the end. This includes academic publications as well as grey literature that can help share findings with third sector organisations and wider communities.