Support and emotional wellbeing

Creating a space where people feel welcomed, understood, and safe is essential for collaborators and facilitators. Involvement can also feel uncertain, emotional, or isolating and support needs to be responsive and planned together.

Start with shared understanding

Begin with a conversation about what is expected and needed. Talk openly about:

  • Roles and responsibilities
  • Time commitments and availability
  • Communication preferences
  • Emotional and practical support needs

It helps to create a short, shared document that everyone can refer back to, outlining:

  • Key contacts and roles
  • Agreed level of involvement and flexibility
  • Honorarium or reimbursement information
  • Any accessibility or communication needs

Every public contributor should have clear, named contacts for both involvement and logistics (e.g. travel, access, payments). Ideally, there should also be someone else they can go to if something unexpected arises.

But support is not just about practicalities. It is important how people are feeling, and how challenges are handled. Support should be offered early and often, not just when things go wrong. It is about being present, listening well, and making time to check in. Fostering care within involvement work helps everyone stay well and able to continue.

Recognising emotional impact

Involvement in dementia research can be deeply meaningful but also personal and at times emotionally challenging. For people living with dementia, sharing lived experience may bring up discomfort. As the condition progresses, changes in ability or identity can affect individuals and their sense of contribution. This may also have an impact on others in the group dynamics, especially when members share similar experiences. It is important to create space for this reality with care, patience, and flexibility.

Make sure people:

  • Feel listened to and not rushed.
  • Can take breaks or step back without pressure.
  • Know their input is valued, even when things change.

Staff wellbeing matters too. Emotionally aware involvement takes energy and empathy. Build in time for reflection, supervision, and peer support so that you feel able to continue in a sustainable way.

Peer support and connection

Involvement can feel isolating without space to connect with others. Peer support provides emotional safety, shared learning, and a sense of belonging. This matters just as much for researchers and facilitators as it does for public collaborators.

Create opportunities for:

  • Informal conversations that build trust and relationships.
  • Shared reflection or debriefing after difficult or emotional discussions.
  • Buddying or mentoring (between collaborators or staff)
  • Spaces where people can speak freely, outside of formal agendas.

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