‘Dementia Matters’ Special Series: Voices of Research Participants

Dementia Matters logo on a white background with red and blue circles and ‘Dementia Matters’ Special Series Voices of Research Participants

Sarah Walter, MSc, the program administrator for the Alzheimer's Clinical Trials Consortium (ACTC) and the Alzheimer's Therapeutic Research Institute (ATRI) at the University of Southern California, co-hosts a special four-part series for the Dementia Matters podcast, with Nathaniel Chin, MD. The four compelling, informative installments center on people participating in Alzheimer’s disease research. Each episode lasts approximately 30 minutes, and you can pause and resume listening anytime.

Part 1
From Caregiver to Research Participant: How One Woman’s Experience as a Dementia Caregiver Drew Her to Alzheimer’s Research
Guest: Cynthia Sierra, MS, LPC
Ms. Cynthia Sierra touches on her personal experience with caregiver burnout as both a caregiver and research study partner for her mother, who has early-onset Alzheimer’s disease. She also shares her unique perspective on Alzheimer’s disease research as someone who started as a family caregiver.
Episode length: 35 minutes and 20 seconds

Part 2
Living with Lewy Body: A Neurologist’s Journey Through Research and Dementia Care
Guest: Sara Langer, MD
Dr. Sara Langer shares the obstacles she endured to receive her diagnosis of Lewy body dementia (LBD), how her background as a neurologist influenced her search for clinical care and how she turned to dementia research to find answers. She also discusses ways that the field of dementia research could improve to support those with other forms of dementia outside of Alzheimer’s disease.
Episode length: 26 minutes and 42 seconds

Part 3
Advocating for All: The Impact of Community and Equity in Dementia Research
Guest: Br. John-Richard Pagan
Br John-Richard Pagan describes how he went from a PhD student to a dementia research participant and his journey getting diagnosed with Lewy body dementia (LBD). He 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.
Episode length: 32 minutes and 45 seconds

Part 4
Getting AHEAD of Alzheimer’s with Inclusive Clinical Trials
Guest: Ms. Carol Turner
Ms. Carol Turner joins the final episode in our Voices of Research Participants series to discuss her journey as an African American research participant, how she became an advocate for others in her community and the power of representation in clinical trials.
Episode length: 25 minutes and 19 seconds

Dementia Matters is a podcast about Alzheimer’s disease and other causes of dementia. Creator and host Nathaniel Chin, MD, interviews leading scientists and caregiving experts to bring listeners the latest in Alzheimer's disease news, research and caregiver resources. Find more episodes of Dementia Matters.