Advocating for All: The Impact of Community and Equity in Dementia Research
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 . Connect with Us Find transcripts and more at our website . Email Dementia Matters : dementiamatters@medicine.wisc.edu Follow us on Facebook and Twitter . Subscribe to the Wisconsin Alzheimer’s Disease Research Center’s e-newsletter . Enjoy Dementia Matters ? Consider making a gift to the Dementia Matters fund through the UW Initiative to End Alzheimer’s . All donations go toward outreach and production.