Global Brain Health Institute’s Lived Experience Group

older ladies laughing

Who we are

The Lived Experience Group at the Global Brain Health Institute (GBHI) is an international panel of people with lived experiences of dementia committed to sharing insights and knowledge to advance dementia-related research. The group was established as part of the GBHI Person and Public Voice (PPV) Program which aims to ensure that the voice of people with lived experience of dementia is central to the work and activities of GBHI.  

The group is made up of people living with dementia, people whose lives are connected to dementia, family, and carers/supporters/care partners, and those at-risk for dementia. The Lived Experience Group enthusiastically collaborates with GBHI faculty, staff, and the Atlantic Fellows for Equity in Brain Health to assist in PPV/PPI* training and capacity building. The panel welcomes invitations to co-create and review training materials and research projects, in addition to dementia-related communications outputs. 

The Lived Experience Group believes in the following GBHI values:

assumes a genuine foundation for action

implies transparency and is founded within the value of equity

requires an appreciation for diversity and underlies the curiosity needed for evidence-based change

fortifies gratitude and embraces diversity

implies the need to take risk

is at the heart of community-informed change

*PPV is also often know as Person and Public Involvement (PPI)

What we do

The Lived Experience Group encourages and empowers its members to have a voice in research and advocacy to drive change in areas where they have the greatest experience, and which will impact others affected by dementia the most. The group provides input and feedback at GBHI at Trinity College Dublin and the University of California San Francisco on research proposals and projects, on the development of training materials and on other aspects of GBHI’s work, in partnership with researchers. Our main goal is to provide direct lived experience feedback from diverse perspectives to Atlantic Fellows for Equity in Brain Health on their work and research. 

Why we do it

The purpose of the panel is to provide input on: 

  • Setting research priorities
  • Planning and managing research studies
  • Communicating findings 
  • Putting results into practice 
  • Reviewing dementia-related communications and articles 

Interested in getting involved?

We would love to hear from you if you are a person with lived experience of dementia (a person living with dementia or a carer or former carer for a person living with dementia) or at risk of dementia, and would like to be a part of the panel.

Key responsibilities of a Lived Experience Group member*

  • Participate in bi-monthly meetings (via Zoom)
  • Provide input and feedback on fellow project presentations
  • Engage in PPV/PPI curriculum sessions
  • Participate in member working groups

*We recognize that everyone’s experiences and strengths will differ, so please note that all of these ‘responsibilities’ are voluntary and subject to the individual’s availability and interest.  

What do members gain from the Lived Experience Group?

There are a range of opportunities for group members; meeting fellows engaged in dementia research, sharing your lived experience with fellows, staff, and faculty at GBHI, and meeting individuals with lived experience internationally. 

If you are interested in getting involved please email Mary Warbelow at


Guide — dementia-friendly language and images

Developed by the Lived Experience Group at GBHI, “Words and Images to Use in Dementia and Caregiving” is a guide to dementia-friendly language and images. The purpose of the guide is to promote the use of inclusive and non-stigmatizing language when talking or writing with or about people living with dementia. 

Video — implementing PPV in research

Atlantic Fellows for Equity in Brain Health Luciano Mariano and Khanyo Ngcobo share video case studies of their experiences of putting Patient and Public Voice / Public and Patient Involvement into practice in their work in Brazil and South Africa.

Blog — listening to the voice of people with lived experience of dementia

Patient and Public Voice interview with Carol Lei, co-chair of the GBHI's Lived Experience Group (formerly know as the Dementia Community Research Advisory Panel), explores why she joined the panel and the personal impact it had on her.


GBHI Lived Experience Group

Join Us!

Members of group discuss the value of involving lived experience in research, why more diverse voices are needed on the panel and the value they have derived from engaging with the panel and researchers.

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