Being Patient is an online news source dedicated to providing research news, caregiver information and resources related to Alzheimer's disease. Being Patient founder Deborah Kan discusses how her personal experiences led her to develop the website, as well as how online resources and communities can help empower individuals affected by memory loss. Guest: Deborah Kan, journalist, founder of beingpatient.com
Episode Topics:
What inspired you to leave a career in journalism and launch Being Patient? 0:58
How do you decide on the topics you cover? 4:18
How does social media help build a community through connection? 9:14
Have you found a certain communication platform that has better reach? 11:25
What have you learned from caregivers through your work? 13:49
Can you offer recommendations for finding reliable online sources for health information? 18:58
Why is it important for the scientific community to have a separate organization that discusses the research? 23:34
What topics in Alzheimer's disease research have been the most impactful? 27:35
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Being Patient Translates Alzheimer’s Disease Science for the General Public

Dementia Matters is a podcast about Alzheimer‘s disease and other causes of dementia. Host Dr. Nathaniel Chin interviews leading scientists and caregiving experts to bring listeners the latest in Alzheimer’s disease news, research and caregiver resources. Brought to you by the Wisconsin Alzheimer’s Disease Research Center,  find show notes and more resources at adrc.wisc.edu/dementia-matters.

Medicine

Science & Medicine

Science

Health & Fitness

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: 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.

Making an IMPACT: Advancing Alzheimer’s Disease Clinical Trials Through Workforce Development and Inclusivity

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: 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.

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

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: 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.

The Fundamentals of Neuropsychology: Breaking Down Cognition, Memory and More

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: 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.

Long COVID and Its Effect on Cognition

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: 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.

Being Patient Translates Alzheimer’s Disease Science for the General Public

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