Patient and public involvement

The Dementia HIT aims to involve people affected by dementia in all aspects of its work. We welcome the views of people affected by dementia to help guide our decision making and set priorities. We encourage our partner organisations to follow the Dementia HIT patient and public involvement (PPI) guidelines (PDF).

Do you need help with PPI?

If you are a professional and would like our support with public involvement (e.g. researchers or service providers wishing to set up a focus group) please email the Dementia HIT coordinator at We are happy to work with you to create the most effective involvement opportunity for your needs. We request a minimum of six weeks' notice for PPI support requests.

The Dementia HIT PPI resource list includes guides and reports, useful for the planning, development and evaluation of PPI activities with people affected by dementia.

The BEST team carried out a literature review to help identify the best ways to involve people affected by dementia in research and service evaluation on behalf of the Dementia HIT.

Join our volunteer panel

One way to become involved with the Dementia HIT is to join the volunteer panel. Members of the panel are contacted about suitable involvement activities such as:

  • Taking part in a discussion group about a particular service
  • Commenting on paperwork and forms to make them more user-friendly
  • Providing ideas for future research or priorities for service improvement

However, members of the panel do not have to take part in any of the activities they are offered.

If you are a person living with dementia, someone caring for a person with dementia or another interested member of the public, and would like more information about joining the volunteer panel see the information sheet and sign-up form.

If you have any questions about the volunteer panel please do get in touch with Julie Clayton, Dementia HIT Coordinator:

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