Advocating for All: The Impact of Community and Equity in Dementia Research

Dementia Matters

Dementia Matters Special Series: Voices of Research Participants

What do you do when dementia symptoms begin to upend your entire life? For Brother John-Richard Pagan, the answer was to persist in finding a diagnosis and a supportive community that aligned with his values. In this episode of our Voices of Research Participants series with co-host Sarah Walter, MSc, Br John-Richard describes how he went from a PhD student to a dementia research participant and his journey getting diagnosed with Lewy body dementia (LBD). Br John-Richard also discusses how his background in clinical psychology influenced his participation in research and his advocacy for disabled, LGBTQ+ and other marginalized community members in medical research.

Guest: Br John-Richard Pagan, MS, veteran, monastic, Episcopal Ecumenical Community, advocate, Lewy Body Dementia Association (LBDA)

Co-host: Sarah Walter, MSc, program administrator, Alzheimer’s Clinical Trials Consortium (ACTC) and Alzheimer’s Therapeutic Research Institute (ATRI)

Show Notes

Listen to the first episode of the Voices of Research Participants series, “From Caregiver to Research Participant: How One Woman’s Experience as a Dementia Caregiver Drew Her to Alzheimer’s Research,” and “Living with Lewy Body: A Neurologist’s Journey Through Research and Dementia Care,” on our website and all podcast platforms.

Learn more about AGREEDementia and the Participants’ Bill of Rights, mentioned at 17:10 and 30:12, on their website.

Learn more about the Dementia Action Alliance on their website.

Find support and resources from the Lewy Body Dementia Association on their website.

Learn more about Sarah Walter in her bio on the Alzheimer’s Clinical Trials Consortium website.

Learn more about how to get a dementia diagnosis on our website.

Find resources for people with dementia and their care partners on our website.

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