REVEALing APOE Results: Making Genetic Disclosures in Alzheimer’s Research

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   Show Notes 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.   Connect with us Find transcripts and more at our website. Email Dementia Matters: [email protected] 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)   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: [email protected] 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.

When it comes to dementia diagnoses, the earlier, the better, but why is it difficult to detect dementia in its early stages? Moreover, what strategies can be used to improve dementia detection? Dr. Josh Chodosh joins the podcast to answer these questions and discuss how public health initiatives could improve dementia diagnoses. He also talks about his work with the Building Our Largest Dementia (BOLD) Center, a public health center focused on early detection and ending the stigma around dementia. Guest: Joshua Chodosh, MD, director, division of geriatric medicine and palliative care, Michael L. Freedman professor of geriatric research, Grossman School of Medicine, New York University, staff physician, VA Harbor Healthcare System Show Notes Learn more about the Building Our Largest Dementia (BOLD) Public Health Center of Excellence on Early Detection of Dementia on their website. Learn more about the Aging and Disability Resource Centers (ADRCs) in Wisconsin and across the country. Learn more about Dr. Chodosh on his NYU Langone Health bio. Learn more about how to get a dementia diagnosis on our website. Learn how to get a free virtual memory screening through the Alzheimer’s Foundation of America (AFA) on their website. Connect with Us Find transcripts and more at our website. Email Dementia Matters: [email protected] 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.

Picture this: you are supporting someone experiencing memory changes as a clinician, support person or care partner while they go through the memory clinic process. How do you navigate the challenging conversations surrounding symptoms, diagnoses, care plans and more that come up? Dr. Toby Campbell joins the podcast to discuss the importance of shared decision-making and share strategies for clinicians, care partners and loved ones to help navigate these important conversations with respect and empathy. Guest: Toby Campbell, MD, MS, thoracic medical oncologist, chief of palliative care, UW Health, professor of hematology, medical oncology and palliative care, University of Wisconsin School of Medicine and Public Health Show Notes Are you a clinician interested in receiving continuing education (CE) credits for listening to this episode? Find credit designation information, disclosures and evaluation information on our website and on the UW–Madison Interprofessional Continuing Education Partnership (ICEP) website. The accreditation for this course expires 5/13/2025. After this date, you will no longer be able to access the course or claim credit. Learn more about the SPIKES strategy, mentioned at 20:48, by reading “Breaking bad news: the S-P-I-K-E-S strategy” for free online. Read Dr. Campbell’s article, “Discussing Prognosis and Shared Decision-Making,” mentioned at 27:55 on ScienceDirect’s website. Read Dr. Campbell’s article, “Discussing prognosis: balancing hope and realism,” mentioned at 31:20 on The Cancer Journal’s website. Learn more about PalliTALK and WeTALK on the University of Wisconsin Department of Medicine website. Learn more about Dr. Campbell through his profile on the University of Wisconsin Department of Medicine website. Find Wisconsin-based and online resources for people with dementia and care partners on our website. Connect with us Find transcripts and more at our website. Email Dementia Matters: [email protected] 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.

Advances in Alzheimer’s disease clinical trials are accelerating rapidly, leading to new insights and disease-modifying therapies, but how does the field continue bolstering that momentum? For Dr. Rema Raman, it’s through improving inclusivity and training for early-career researchers. Recorded at the 2024 Alzheimer’s Disease & Related Dementias Research Day, Dr. Raman joins the podcast to discuss her work in research recruitment and retention, the importance of training the next generation of clinical trialists in dementia research with the IMPACT-AD program and more from her featured presentation. Guest: Rema Raman, PhD, co-director, Institute of Methods and Protocols for Advancement of Clinical Trials in ADRD (IMPACT-AD), director, section of biostatistics, section of participant recruitment & retention section, Alzheimer’s Therapeutic Research Institute, professor of neurology, University of Southern California Show Notes Watch our YouTube page for upcoming recordings of Dr. Raman’s presentation and other featured speakers at Alzheimer’s Disease & Related Dementias Research Day 2024. Learn more about Alzheimer’s Disease & Related Dementias Research Day on our website. Learn more about the Institute of Methods and Protocols for Advancement of Clinical Trials in ADRD (IMPACT-AD) on their website. Learn more about Dr. Raman at her bio on the Keck School of Medicine website. Connect with us Find transcripts and more at our website. Email Dementia Matters: [email protected] 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.

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) Show Notes Learn more about Sarah Walter at her bio on the Alzheimer’s Clinical Trials Consortium website. 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,” on our website, Spotify, Apple Podcasts and all podcast platforms. Learn more about Lewy body dementia by watching the 2021 Dr. Daniel I. Kaufer Lecture, “Diagnosis and Management of Dementia with Lewy Bodies,” on our YouTube page. Learn more about how to get a dementia diagnosis on our website. Connect with Us Find transcripts and more at our website. Email Dementia Matters: [email protected] 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.

The brain is the most complex part of the human body, controlling thought, memory, emotion, motor skills, sensory input and all the processes that regulate our bodies. How exactly does it work, and how are clinicians able to determine whether brain changes are a result of normal aging, Alzheimer’s disease, or something else? Dr. Victoria Williams joins the podcast to explain important concepts in neuropsychology, from the difference between cognition and intelligence to how memories are made, and discuss how cognitive tests work in memory clinics. Guest: Victoria Williams, PhD, neuropsychologist, UW Health, assistant professor, Department of Medicine, University of Wisconsin School of Medicine and Public Health Show Notes Are you a clinician interested in receiving continuing education (CE) credits for listening to this episode? Find credit designation information, disclosures and evaluation information on our website and on the UW–Madison Interprofessional Continuing Education Partnership (ICEP) website. The accreditation for this course expires 3/25/2025. After this date, you will no longer be able to access the course or claim credit. Learn more about the domains and structure of the brain through the National Institute of Neurological Disorders and Stroke (NINDS) website. Learn more about Dr. Williams at her bio on the University of Wisconsin Department of Medicine website. Connect with Us Find transcripts and more at our website. Email Dementia Matters: [email protected] 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.

Since the COVID-19 pandemic was declared by the World Health Organization (WHO) in 2020, there have been many concerns about how cases of COVID-19 and Long COVID or Post-COVID Conditions (PCC) affect not just a person’s physical health, but their cognition as well. In this episode, Dr. Jim Jackson talks about his path into critical illness research and his dedicated focus on unraveling the impact of Long COVID on cognition. Throughout the discussion, he talks about the parallels between Long COVID and other chronic illnesses, the effects of Long COVID across different demographics, the concurrent challenges faced by older adults and more.  Guest: James “Jim” Jackson, PsyD, director of long-term outcomes, Critical Illness, Brain Dysfunction, and Survivorship (CIBS) Center, research associate professor of medicine, director of behavioral health, ICU Recovery Center, Vanderbilt University Medical Center Show Notes Learn more about Dr. Jackson’s book, Clearing the Fog: From Surviving to Thriving with Long Covid―A Practical Guide, on Goodreads. Listen to Dr. Jackson’s interview on NPR’s Fresh Air podcast, “Millions of people have long COVID brain fog — and there's a shortage of answers.” Learn more about Dr. Jackson at his bio on the Vanderbilt University website. Learn more about Long COVID or Post-COVID Conditions on the Centers for Disease Control and Prevention (CDC) website. Connect with Us Find transcripts and more at our website. Email Dementia Matters: [email protected] 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.

Hearing loss affects roughly 15.5% of Americans 20 years and older. While the majority of these individuals experience mild hearing loss, the prevalence and severity of hearing loss increases with age. What does this sensory change mean for dementia risk, and can this risk be prevented through interventions like hearing aids? Dr. Frank Lin joins the podcast to discuss the relationship between hearing loss and dementia and share findings from the Aging and Cognitive Health Evaluation in Elders, or ACHIEVE, study. Guest: Frank Lin, MD, PhD, director, Cochlear Center for Hearing and Public Health, Professor of Otolaryngology, Medicine, Mental Health, and Epidemiology, Johns Hopkins University Show Notes Read more about Dr. Lin’s study, “Hearing intervention versus health education control to reduce cognitive decline in older adults with hearing loss in the USA (ACHIEVE): a multicentre, randomised controlled trial,”  in The Lancet. Learn more about the Atherosclerosis Risk in Communities (ARIC) study, mentioned at 20:01, through the National Heart, Lung, and Blood Institute and Johns Hopkins Bloomberg School of Public Health’s websites. Read more about U.S. regulations surrounding over-the-counter hearing aids, mentioned at 34:00, in “‘A New Frontier’ for Hearing Aids,” by The New York Times. Learn more about Dr. Lin at his bio on the Johns Hopkins Bloomberg School of Public Health website. Learn more about the ACHIEVE study on their webpage. Connect with us Find transcripts and more at our website. Email Dementia Matters: [email protected] 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.

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) Show Notes Learn more about Cynthia Sierra’s research at her ResearchGate profile. Learn more about Sarah Walter at her bio on the Alzheimer’s Clinical Trials Consortium 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: [email protected] 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.