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)

Listen to the rest 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,” “Living with Lewy Body: A Neurologist’s Journey Through Research and Dementia Care,” and “Advocating for All: The Impact of Community and Equity in Dementia Research” on our website and all podcast platforms.

Watch “Voices from the AHEAD Alzheimer's Disease Trial” featuring Cynthia Carlsson, MD, MS on the UW Clinical Trials Institute YouTube.

Learn more about the AHEAD Study on their website.

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

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

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.

On this episode of Dementia Matters, Dr. Scott Roberts talks about disclosing genetic test results for APOE, a gene that can increase one’s likelihood of developing Alzheimer’s disease. While this information can be concerning, Dr. Roberts shares that it can empower individuals to take the necessary precautions to lower their risk of developing the disease. He discusses the Risk Evaluation and Education for Alzheimer’s Disease (REVEAL) study, walks us through the APOE disclosure process and shares how it is evolving with the development of new Alzheimer’s treatments.

Guest: Scott Roberts, PhD, interim chair, professor of health behavior & health education, University of Michigan School of Public Health

Read Dr. Roberts’ article, “Genetic risk assessment for adult children of people with Alzheimer's disease: the Risk Evaluation and Education for Alzheimer's Disease (REVEAL) study,” on the SageJournals website.

Decide if you’re a fit forAPOE testing using Virginia Tech’s ‘Gene Test or Not?’ decision aid tool, mentioned at 17:00 in the episode.

Learn more about Dr. Roberts on his University of Michigan profile.

Learn more about APOE by listening to our episode, “DNA Is Not Your Destiny: Genetics and Alzheimer’s Disease Risk,” with Dr. Corinne Engelman on our website.

Read “WRAP data used in study finding a distinct, genetic form of Alzheimer’s disease” on the Wisconsin Alzheimer’s Institute (WAI) website.

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.

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)

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.

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.