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

If you're one of the 11 million Americans providing unpaid care to a loved one with Alzheimer’s disease, you know that caregiving is both incredibly rewarding and challenging. What makes caring for someone with dementia so emotionally and physically demanding, and what resources and strategies are available to help? In this episode, Bonnie Nuttkinson joins us to discuss the unique needs of dementia caregivers, tips for navigating each stage of the disease and ways to find support along the caregiving journey. Guest: Bonnie Nuttkinson, MS, research program coordinator, Wisconsin Alzheimer’s Disease Research Center   Show Notes Read the Alzheimer’s Association’s 2024 Facts and Figures report that Dr. Chin mentioned at 7:29 Get 10 tips and more resources for caregivers from the Caregiver Action Network that Dr. Chin mentioned at the 12-minute mark. Visit “Resources for People with Dementia and Care Partners” on the Wisconsin ADRC website. Find caregiving resources on the National Institute on Aging’s (NIA) Alzheimer’s Caregiving website. Download or order The Caregiver’s Handbook from the National Institute on Aging (NIA) for free. Alzheimers.gov has information and resources for caregivers managed by the NIA at the National Institutes of Health (NIH). Find local elder care resources with the Elder Care Locator that Bonnie mentioned at 23:30.  Learn more about Bonnie from her profile on the BerbeeWalsh Department of Emergency Medicine website. Read “UW–Madison Alzheimer’s program staff featured in Badger Talks series during National Family Caregivers Month” on the Wisconsin ADRC 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 if you could test your cognition from the comfort of your own home using a smartphone? Drs. David Berron and Lindsay Clark have spent years researching cognitive neuroscience, culminating in a 2024 published study investigating the effectiveness of a smartphone app as a tool for detecting cognitive impairment outside of a clinic or research setting. Drs. Berron and Clark join Dementia Matters to discuss how the app and tests were developed, the benefits and drawbacks of this approach  and the implications of remote testing in the healthcare field. Guests: David Berron, PhD, Clinical Cognitive Neuroscience research group leader, German Center for Neurodegenerative Diseases (DZNE), and Lindsay Clark, PhD, licensed neuropsychologist, clinical core co-lead, Wisconsin Alzheimer’s Disease Research Center (ADRC), assistant professor, Division of Geriatrics and Gerontology, University of Wisconsin School of Medicine and Public Health Show Notes Read Drs. Berron and Clark’s study, “A remote digital memory composite to detect cognitive impairment in memory clinic samples in unsupervised settings using mobile devices,” online through the journal npj Digital Medicine. Learn more about Dr. Berron and his research on his website. Learn more about Dr. Clark on her profile on the Wisconsin ADRC’s 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.

If you get the recommended eight hours of sleep per night, you spend a third of your life asleep. Why dedicate so much time to sleeping, and how can one get the most out of those eight hours? In this episode, Dr. Allison Reiss joins us for an insightful conversation about how sleep helps the brain, what the brain does while we are asleep, tips for improving one’s sleep hygiene and much more.  Guest: Allison Reiss, MD, internal medicine physician, head, Inflammation Laboratory, New York University (NYU) Langone Hospital-Long Island, associate professor of medicine, NYU Grossman Long Island School of Medicine, member, Medical, Scientific & Memory Screening Advisory Board, Alzheimer’s Foundation of America Show Notes For more information about sleep, listen to our episode with Dr. Steven Barczi, “The Importance of Sleep for a Healthy Life,” mentioned by Dr. Chin at 1:40. Learn more about Dr. Reiss and her publications from her profile on the NYU Grossman Long Island School of Medicine website. Learn more about the Alzheimer’s Foundation of America’s Medical, Scientific & Memory Screening Advisory Board, which includes Drs. Chin and Reiss, by visiting their website. Learn more about the Wisconsin Registry for Alzheimer’s Prevention (WRAP) on their website. View 9 sleep tips from the Wisconsin Alzheimer’s Disease Research Center (ADRC) Watch a recording of “Sleeping Your Way to Better Brain Health” presented by Dr. Steven Barczi. 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.

Dr. Reisa Sperling returns for another episode of Dementia Matters. After covering her research focused on preclinical Alzheimer’s disease in part one, Dr. Sperling dives deeper into the different factors that can impact cognitive decline and early-stage Alzheimer’s disease and how clinical trials are shaping the field’s understanding of detecting, treating and preventing the disease. Guest: Reisa Sperling, MD, director, Center for Alzheimer Research and Treatment (CART), co-principal investigator, Harvard Aging Brain Study, principal investigator, Alzheimer’s Clinical Trials Consortium (ACTC), co-leader, A4 Study, co-leader, AHEAD 3-45 Study, professor of neurology, Harvard Medical School   Show Notes Listen to our first episode with Dr. Sperling, “Defining and Addressing Preclinical Alzheimer’s Disease,” on Spotify, Apple Podcasts and on our website. Read more about the Harvard Aging Brains Study on their website. Read more about the AHEAD Study on their website. Watch “Voices from the AHEAD Alzheimer’s Disease Trial,” featuring Dr. Cynthia Carlsson and a research participant, on YouTube.  Learn more about the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s disease (A4) study here. Learn more about Dr. Sperling in her profile on the Massachusetts General Hospital 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 if there was a way to detect Alzheimer’s disease before clinical signs and symptoms even appeared? Dr. Reisa Sperling joins Dementia Matters for a two-part series covering her research on detecting and treating Alzheimer’s disease at the earliest possible stage, known as preclinical Alzheimer’s. In this episode, Dr. Sperling goes in-depth on amyloid and tau proteins and the implications on early detection and treatment strategies for Alzheimer’s disease. Guest: Reisa Sperling, MD, director, Center for Alzheimer Research and Treatment (CART), co-principal investigator, Harvard Aging Brain Study, principal investigator, Alzheimer’s Clinical Trials Consortium (ACTC), co-leader, A4 Study, co-leader, AHEAD 3-45 Study, professor of neurology, Harvard Medical School Show Notes Read more about the Harvard Aging Brains Study on their website. Read more about the AHEAD Study on their website. Watch “Voices from the AHEAD Alzheimer’s Disease Trial,” featuring Dr. Cynthia Carlsson and a research participant, on YouTube.  Learn more about the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s disease (A4) study here. Learn more about Dr. Sperling in her profile on the Massachusetts General Hospital 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.

An expanding field of research is looking at how the gut affects different parts of people’s health, but how does it affect brain health? Drs. Barb Bendlin and Tyler Ulland join the podcast to talk about their 2023 study, which suggests a link between gut health, aging and changes related to Alzheimer’s disease. They discuss their findings on how gut inflammation could impact brain health, as well as explain what it means to have good gut health and how food, medications, where one lives and other factors can impact the gut microbiome. Guests: Barbara Bendlin, PhD, professor, Division of Geriatrics and Gerontology, deputy director, University of Wisconsin (UW) Center for Health Disparities Research, and Tyler Ulland, PhD, associate professor of pathology and laboratory medicine, UW School of Medicine and Public Health, leader, Ulland Lab Show Notes Learn more about the 2024 Fall Community Conversation: The Impact of Social Connections on Brain Health and register to attend in person on our website. Read Dr. Bendlin and Dr. Ulland’s study, “Gut inflammation associated with age and Alzheimer’s disease pathology: a human cohort study,” on the National Library of Medicine website. Learn more about Dr. Bendlin and Dr. Uland’s study in the article, “Gut inflammation linked to aging and Alzheimer’s disease,” on the UW School of Medicine and Public Health website. Learn more about Dr. Ulland from his profile on the Ulland lab webpage. Learn more about Dr. Bendlin from her profile on the UW Center for Health Disparities Research 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.

In this compendium episode, we review some of the best information and research that we’ve shared on the six pillars of brain health. With excerpts highlighting the importance of physical activity, diet, sleep, social engagement and more, our six guests show that there are numerous evidence-based lifestyle interventions that a person can incorporate into their daily lives to improve their brain health and delay the onset of or reduce their risk of developing Alzheimer’s disease. Show Notes Learn more about the 2024 Fall Community Conversation: The Impact of Social Connections on Brain Health and register to attend in person on our website. Learn more about exercise and physical activity at 2:57 or by listening to the episode, “Building the Brain: Finding the Cognitive Benefits of Physical Activity,” on our website. Learn more about the MIND diet at 8:58 or by listening to the episode, “MIND Diet for Healthy Brain Aging,” on our website. Learn more about the importance of sleep at 14:28 or by listening to the episode, “The Importance of Sleep for a Healthy Life,” on our website. Learn more about mindfulness as a practice for managing stress at 21:22 or by listening to the episode, “Mindfulness: What Is It, What Are the Benefits, Where to Begin,” on our website. Learn more about cognitive engagement at 28:10 or by listening to the episode, “Exercise Your Mind: Cognitively Stimulating Activities and Social Engagement,” on our website. Learn more about social isolation and engagement at 34:44 or by listening to the episode, “The Impact of Social Isolation on Dementia Risk in Older Adults,” on Spotify, Apple Podcasts and on our website. Find more information about the six pillars of brain health and other prevention strategies 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.

While genetics and lifestyle can influence one’s risk of developing Alzheimer’s disease, other unexpected factors can shift the possibility. One of these factors is personality. Dr. Emorie Beck joins Dementia Matters to share her research on the link between personality and Alzheimer’s risk. Dr. Beck breaks down the Big Five traits that make up someone’s personality and their effects on a person’s cognitive health.  Guest: Emorie Beck, PhD, assistant professor, University of California, Davis Show Notes Read Dr. Beck’s study, “Personality predictors of dementia diagnosis and neuropathological burden: An individual participant data meta-analysis,” through the Alzheimer’s Association Journals website. Learn more about Dr. Beck on her profile on the UC–Davis website. Learn more about social isolation by listening to our episode, “The Impact of Social Isolation on Dementia Risk in Older Adults,” on Spotify, Apple Podcasts, and on our website. Find out your personality type by taking the FiveThirtyEight Personality Quiz Test your cognitive ability and participate in studies similar to Dr. Beck’s on TestMyBrain.org  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 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)   Show Notes 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.   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.

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.