Dementia Matters

The field of biomarkers is advancing quickly, allowing preclinical Alzheimer’s disease to be identified earlier and earlier in a person’s life. As individuals learn they are at risk for Alzheimer’s years or even decades before experiencing cognitive decline, what does this mean for them and for society as a whole? Drs. Emily Largent and Claire Erickson join the podcast to discuss ten key areas, such as healthcare, insurance, and direct-to-consumer testing, that should be addressed to support those at risk for cognitive decline and broader U.S. society as biomarker testing and disclosures become more prominent. Guests: Emily Largent, PhD, RN, Emanuel and Robert Hart Assistant Professor, University of Pennsylvania Perelman School of Medicine, and Claire Erickson, PhD, MPA, postdoctoral fellow, University of Pennsylvania Perelman School of Medicine Show Notes Read Drs. Emily Largent and Claire Erickson’s paper, “Implications of preclinical Alzheimer's disease biomarker disclosure for US policy and society,” on PubMed Central.  Learn more about Dr. Largent at her bio on the Penn Leonard Davis Institute of Health Economics website. Learn more about Dr. Erickson at her bio on the Penn Leonard Davis Institute of Health Economics website. Connect with us 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.

Though brain and cognitive changes are typically diagnosed as one form of dementia, recent studies have shown that mixed dementia is more common than previously thought. Mixed dementia, also known as Multiple-etiology dementia, is a condition where brain changes are caused by more than one neurological disease, such as Alzheimer’s disease, Lewy body dementia (LBD), or frontotemporal dementia. Dr. Roderick Corriveau joins the podcast to discuss what is known about mixed dementia and how the field of studying neurological diseases is advancing to diagnose and treat this condition. Guest: Roderick Corriveau, PhD, program director, National Institute of Neurological Disorders and Stroke (NINDS), NIH Lead, Alzheimer’s Disease-Related Dementias (ADRD) Summits Show Notes Read more about the National Institutes of Neurological Disorders and Stroke (NINDS) campaign, “Mind Your Risks,” at the Mind Your Risks website. Learn more about mixed dementia on the Alzheimer’s Association website. Learn more about Dr. Corriveau at his bio on the National Institutes of Neurological Disorders and Stroke website. Learn more about NINDS on their website. Connect with us 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.

Though several validated biomarkers are studied and used in Alzheimer’s disease research, most research participants don’t have the opportunity to learn their biomarker results afterward, even if they have cognitive impairment. Drs. Jason Karlawish and Josh Grill join the podcast to discuss the debate over sharing biomarker results with research participants, how these powerful disclosures can be made ethically, and why it's as important for the field to study biomarker disclosures as it is to study the biomarkers themselves. Guests: Josh Grill, PhD, director, Institute for Memory Impairments and Neurological Disorders, associate professor, University of California, Irvine, and Jason Karlawish, MD, co-director, Penn Memory Center, professor of medicine, medical ethics and health policy, and neurology, University of Pennsylvania Show Notes Read Dr. Jason Karlawish and Dr. Josh Grill’s viewpoint piece, “Disclosing Alzheimer Disease Biomarker Results to Research Participants,” from JAMA Neurology’s June 2022 issue. Listen to our episode with Dr. Daniel Gibbs about his book (mentioned by Dr. Karlawish at 34:21) on our website, Spotify, Apple Podcasts, or wherever you listen. Listen to our past episode on amyloid disclosures with research participants on our website, Spotify, Apple Podcasts, or wherever you listen. Learn more about Dr. Josh Grill at his bio on the University of California - Irvine website. Learn more about Dr. Jason Karlawish’s work at his website. Connect with us 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.

Dementia Matters Special Series: The National Strategy for Alzheimer's Disease Data and Research Part 6 Concluding our special series on the 2022 Spring ADRC Meeting, Dr. Cerise Elliott joins the podcast to discuss the NIA’s work within the field of Alzheimer’s disease research, how the NIA promotes open science to advance research across the ADRC program, and other key takeaways from the spring meeting. Guest: Cerise Elliott, PhD, program director for clinical interventions and diagnostics, division of neuroscience, National Institute on Aging Show Notes Watch Dr. Cerise Elliott’s session from the Spring ADRC Meeting, “Q&A with Program,” on NACC’s YouTube channel. Listen to our previous episode with Dr. Elliott, "National Priorities for Dementia and Health Disparities Research," on our website. Learn more about Dr. Elliott at her bio on the National Institute on Aging website. Learn more about the National Alzheimer’s Coordinating Center at their website. Connect with us 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.

Dementia Matters Special Series: The National Strategy for Alzheimer's Disease Data and Research Part 5 Whether it be due to new research findings, innovative approaches and ideas, or technological advancements, Alzheimer’s disease research is constantly evolving. Now, dementia research is headed into the digital frontier. Dr. Rhoda Au joins the podcast to discuss digital biomarkers, gamifying cognitive testing, and how the field of Alzheimer’s disease research is entering its digital age. Guest: Rhoda Au, PhD, digital technology leader, Boston University Alzheimer’s Disease Research Center, co-principal investigator, director of neuropsychology, Framingham Heart Study, professor, Boston University School of Medicine Show Notes Watch Dr. Rhoda Au’s presentation from NACC’s Spring ADRC Meeting on NACC’s YouTube channel. Learn more about Dr. Au at her bio on the Boston University Chobanian & Avedisian School of Medicine website. Learn more about the National Alzheimer’s Coordinating Center at their website. Connect with us 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.

Dementia Matters Special Series: The National Strategy for Alzheimer's Disease Data and Research Part 4 Brain imaging is a key tool in Alzheimer’s disease research and diagnoses, allowing scientists to see changes in the brain years, even decades, before an individual experiences symptoms of dementia. The data these images provide researchers with is incredibly useful, leading the National Alzheimer’s Coordinating Center to take up numerous efforts to standardize, unify and share this type of data across the Alzheimer’s Disease Research Centers. Dr. Beth Mormino joins the podcast to discuss the NIA’s SCAN initiative, the new “legacy” data set, and the importance of standardizing MRI and PET scan procedures to predict brain trajectories better. Guest: Beth Mormino, PhD, assistant professor, Stanford University Show Notes Learn more about Dr. Mormino’s presentation on the SCAN Legacy project by reading her presentation slides on NACC’s website. Listen to Dr. Mormino’s last episode on Dementia Matters, “The Science of Alzheimer’s Disease Risk,” on our website. Learn more about the National Alzheimer’s Coordinating Center at their website.  Register for NACC’s Fall 2022 ADRC Meeting on their website. Registration is free and open to the public. The fall meeting, which will focus on diversity, equity, and inclusion in Alzheimer’s research, will take place on Thursday, October 20, and Friday, October 21, virtually and in person in Chicago, IL. Connect with us 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.

Dementia Matters Special Series: The National Strategy for Alzheimer's Disease Data and Research Part 3 With big data comes big responsibility. Dr. Sean Mooney joins the podcast to discuss his work with NACC, the precautions NACC takes to keep participant data secure, and how this data can be used to better predict Alzheimer’s disease risk to allow for earlier interventions. Guest: Sean Mooney, PhD, associate director of technology, National Alzheimer’s Coordinating Center, Chief Research Information Officer, UW Medicine, professor, University of Washington Show Notes Watch Dr. Mooney’s talk from NACC’s Spring 2022 Alzheimer’s Disease Research Center Meeting on NACC's YouTube page. Learn more about the National Alzheimer’s Coordinating Center at their website.  Register for NACC’s Fall 2022 ADRC Meeting on their website. Registration is free and open to the public. The fall meeting, which will focus on diversity, equity, and inclusion in Alzheimer’s research, will take place Thursday, October 20th to Friday, October 21st both virtually and in-person in Chicago, IL. Learn more about Dr. Mooney through his bio on the UW Medicine Biomedical Informatics and Medical Education website. Connect with us 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.

Dementia Matters Special Series: The National Strategy for Alzheimer's Disease Data and Research Part 2 Dr. Sarah Biber, the program director for NACC, joins the podcast to discuss building a one-stop shop for Alzheimer’s Disease Research Center (ADRC) data and what it means for the future of collaborative Alzheimer’s disease research. Guest: Sarah Biber, PhD, program director, National Alzheimer’s Coordinating Center Show Notes Learn more about Dr. Biber’s talk at NACC’s Spring 2022 Alzheimer’s Disease Research Center Meeting by reading her presentation slides on NACC’s website. Learn more about the National Alzheimer’s Coordinating Center at their website. Register for NACC’s Fall 2022 ADRC Meeting on their website. Registration is free and open to the public. The fall meeting, which will focus on diversity, equity, and inclusion in Alzheimer’s research, will take place Thursday, October 20th to Friday, October 21st both virtually and in-person in Chicago, IL. Connect with us 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.

Dementia Matters Special Series: The National Strategy for Alzheimer's Disease Data and Research Part 1: Kicking off our six-episode series on the National Alzheimer’s Coordinating Center and their Spring 2022 ADRC meeting, Dr. Walter Kukull joins the podcast. He explains what NACC is, what they do with the data they collect from the 42+ Alzheimer’s Disease Research Centers, the center’s biannual ADRC meetings and what he’s most excited about for the next five years of Alzheimer’s disease research. Guest: Walter Kukull, PhD, director, National Alzheimer’s Coordinating Center, professor, University of Washington department of epidemiology Show Notes Learn more about the National Alzheimer’s Coordinating Center at their website.  View slides and video recordings of NACC’s Spring 2022 ADRC Meeting on the NACC website. Register for NACC’s Fall 2022 ADRC Meeting on their website. Registration is free and open to the public. The fall meeting, which will focus on diversity, equity, and inclusion in Alzheimer’s research, will take place Thursday, October 20, and Friday, October 21, both virtually and in person in Chicago, IL. Learn more about Dr. Kukull in his bio on the University of Washington’s Memory and Brain Wellness Center website. Connect with us 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.

Researchers typically recognize the APOE e4 gene as a significant genetic risk factor for cognitive decline and dementia. However, a new study has found that the allele is not linked to neurodegeneration for all races and ethnic groups, specifically for American Indian populations. Dr. Astrid Suchy-Dicey joins the podcast to discuss her study, the importance of representation in Alzheimer’s disease research, hypotheses for why this allele isn’t a risk factor for all populations and what it means for research going forward. Guest: Astrid Suchy-Dicey, PhD, epidemiologist, assistant research professor, Washington State University, Institute for Research and Education to Advance Community Health (IREACH) Show Notes Read the research highlights of Dr. Suchy-Dicey’s study on the National Institute of Aging website. Read Dr. Suchy-Dicey’s study, “APOE genotype, hippocampus, and cognitive markers of Alzheimer's disease in American Indians: Data from the Strong Heart Study,” through the journal Alzheimer’s & Dementia’s website. Learn more about the Strong Heart Study on their website. Connect with us 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.