University of Wisconsin–Madison

Tag: Voices of Research Participants

Getting AHEAD of Alzheimer’s with Inclusive Clinical Trials

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Dementia Matters Special Series: Voices of Research Participants

When Ms. Carol Turner found out her family had a history of Alzheimer’s disease, she wanted to know how she could help herself and others with similar experiences. After learning about the AHEAD Study, which is testing a treatment that could delay memory loss before Alzheimer’s symptoms appear, she signed up to participate in this ground-breaking research. Ms. Turner joins the final episode in our Voices of Research Participants series to discuss her journey as a research participant, how she became an advocate for others in her community and the power of representation in clinical trials.

Guest: Ms. Carol Turner, AHEAD Study participant

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

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

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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)

Living with Lewy Body: A Neurologist’s Journey Through Research and Dementia Care

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Dementia Matters Special Series: Voices of Research Participants

What do you do if you have a family history of dementia and are experiencing symptoms, but can’t get a diagnosis? Dr. Sara Langer has dealt with just that. In the latest episode of our Voices of Research Participants series, Dr. 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.

Guest: Sara Langer, MD, neurologist

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

From Caregiver to Research Participant: How One Woman’s Experience as a Dementia Caregiver Drew Her to Alzheimer’s Research

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Dementia Matters Special Series: Voices of Research Participants

Caring for a loved one with cognitive decline can be challenging. While it is a labor of love, burnout is all but inevitable. In this episode kicking off our Voices of Research Participants series with co-host Sarah Walter, 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.

Guest: Cynthia Sierra, MS, LPC, senior project manager, UT Health San Antonio

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