Supporting communication in research partnerships involving people with dementia [1]
Good communication is central to meaningful involvement of people with dementia in research. Yet research spaces are not always designed with communication differences in mind. The Let’s Talk Dementia guidance [2] and accompanying video were created to help change that.
Co produced by people with dementia, supporters, and researchers, this guidance focuses on practical ways to support communication when people with dementia are involved as research partners rather than participants. That means working together as advisors, collaborators, and decision makers.
Why this guidance matters
People with dementia bring essential insight to research. However, communication can be affected by cognitive, sensory, or language changes, and these vary widely from person to person. Anxiety, lack of confidence, and past experiences of being spoken over can also shape how comfortable someone feels contributing.
This guidance encourages researchers to move away from assumptions and efficiency driven meetings, and instead prioritise trust, flexibility, and relationships.
As one contributor puts it, once you have met a few times, it becomes more like a friendly chat.
What the guidance covers
The written guidance is structured around the full lifecycle of working together, from early planning through to the end of meetings. It offers practical advice on:
- Planning involvement carefully
Including meeting people one to one before group sessions, understanding individual communication preferences, and making information accessible. - First group meetings
Focusing on introductions, building comfort, and agreeing shared ways of working that support everyone to speak. - Communication during meetings
Slowing the pace, using visual supports, avoiding jargon, allowing silence, and creating space for different ways of contributing. - Ending meetings well
Making time for reflection, summarising contributions, offering follow up options, and gathering feedback on how communication could be improved.
Throughout, the emphasis is on choice, respect, and adapting to individuals rather than expecting people to adapt to research norms.
Watch the video: Top tips for communication
Alongside the written guidance, a short video brings key messages to life. It shares direct tips from people with lived experience and researchers, highlighting small changes that can make a big difference to confidence and inclusion.
The video is designed to be easy to watch and useful as a prompt before meetings or when setting up new involvement activities.
Who the guidance is for
This resource is aimed at anyone working with people with dementia as research partners, including researchers, PPI leads, facilitators, and organisations supporting involvement. The principles are also relevant more widely wherever inclusive communication matters.
The guidance was funded by the NIHR School for Primary Care Research and developed through collaboration between University College London, Innovations in Dementia [3], and people with lived experience
Lets Talk Dementia Written Guid…
Using this resource
You might use the guidance to:
- Plan more inclusive meetings
- Reflect on your own communication style
- Support colleagues new to involvement work
- Set shared expectations with research partners
Good communication is not about getting it perfect. It is about listening, adjusting, and learning together.
Lets Talk Dementia Written Guidance [4]