We held a discussion session open to members of the Dementia Learning & Research Community about involvement of people with lived experience in research.

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Research involvement is the process of having someone with lived or living experience of a condition or a carer of someone with lived experience of a condition providing their guidance, advice or other assistance on a research project. It differs from being a research participant in that someone being involved is considered part of the research team. If you're interested in becoming involved in research, you can see our guide about How to get involved in dementia research.

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In this session we discussed the importance of:

• Researchers demystifying the research process including how long the grant process and research processes can take

• Researchers empowering people with lived experience to ask for what they need to improve their experience of involvement, and those with lived experience feeling comfortable to ask for what they need

• Clearly defining the role of a person with lived experience during their involvement

• Creating a positive environment and safe space for people with lived experience

• Researchers understanding the time and resources needed to appropriately and effectively involve people with lived experience