Reaching people

Getting involved in research isn’t always straightforward, especially for people living with dementia or those unfamiliar with the world of research. The language, systems, and roles can feel unclear or closed off. It’s not always obvious where the door is, let alone how to open it.

For researchers, starting from scratch can feel overwhelming too, particularly if you’re working alone, with limited time or experience in public involvement. But you don’t have to build every connection from the ground up. Many researchers begin by linking into existing networks or community groups.  Be proactive, take a relational approach and build from there. Here are some places to begin:

  • Contact a local DEEP group (part of the UK-wide Dementia Engagement and Empowerment Project) or ask to list an involvement opportunity on their website.
  • Introduce yourself at a local memory café or dementia support group, just showing up and listening is a good first step.
  • Charities such as Alzheimer’s Society or Age UK often run public involvement or volunteering programmes and may help you connect.
  • Ask colleagues if they know individuals or groups you can speak with.

Involvement starts with connection. People are more likely to become and stay involved when they feel seen, valued, and understood.

Familiar networks are valuable, especially when time and resources are limited. But if we want involvement to reflect the diversity and richness of experience among people living with dementia, we need to gently push beyond those circles. That might involve working with trusted local groups, memory cafés, or community organisations who already have strong relationships.

Meaningful outreach takes time and trust. It means meeting people where they are, physically, emotionally and culturally, and making things accessible. Be open and take the time to listen to what people need to feel welcome and safe.

Approaches that support more inclusive engagement include:

  • Raising awareness in accessible and culturally sensitive ways; such as through trusted intermediaries, social prescribing networks, or community media.
  • Engaging persons of trust, including family members, support workers, or community leaders, who can help build confidence and understanding.
  • Spending time in familiar spaces and not expecting people to come to us.
  • Advertising accessibly: using formats that people use and understand, everyday language that is welcoming.