Brain Talk | Being Patient for Alzheimer's Patients and Caregivers

Originally from Argentina, educator and creative entrepreneur Laura Tobi, 58, moved to the U.S. 26 years ago. An educational designer by training, she has worked with labor unions, corporations, government, and public and private school systems, later founding a Miami-based business to cultivate creative thinking for learners of all ages. After years as a caregiver to her both husband and daughter through serious chronic illnesses, she and her husband relocated to North Carolina in 2024, where she noticed increased memory problems. A neurologist connected the dots: a lumbar puncture confirmed Alzheimer’s, and further evaluation found epilepsy, revealing silent seizures. In this interview with Being Patient’s Mark Niu, Tobi shares how she pairs Leqembi infusions with lifestyle changes inspired by the Ornish program — nutrition, exercise, stress management, and social support — while staying rooted in community through volunteering, teaching, improv, and clay sculpture in her home studio. Her takeaways: build community, stay mentally and physically active, advocate for yourself, and keep seeking joy — through teaching, volunteering, improv, and making art.—-If you loved listening to this Live Talk, visit our website to find more of our Alzheimer’s coverage and subscribe to our newsletter: https://www.beingpatient.com/Follow Being Patient: Twitter: https://twitter.com/Being_Patient_Instagram: https://www.instagram.com/beingpatientvoices/Facebook: https://www.facebook.com/beingpatientalzheimersLinkedIn: https://www.linkedin.com/company/being-patientBeing Patient is an editorially independent journalism outlet for news and reporting about brain health, cognitive science, and neurodegenerative diseases. In our Live Talk series on Facebook, former Wall Street Journal Editor and founder of Being Patient, Deborah Kan, interviews brain health experts and people living with dementia. Check out our latest Live Talks: https://www.beingpatient.com/category/video/

Scientists are still searching for effective treatments for neurodegenerative disorders like Alzheimer's, ALS, and chronic traumatic encephalopathy (CTE). In his pioneering research, neurosurgeon Dr. Christopher Duma is testing whether stem cell therapy can effectively treat these diseases. Duma is medical director of Hoag Memorial Presbyterian Hospital’s Brain Tumor Program in Newport Beach, California and president and founder of Regeneration Biomedical, which develops stem cell therapies for neurological disorders. He recently completed Phase 1 of its clinical trial, a first-in-human approach that delivers a patient’s own fat-derived stem cells directly into the brain’s ventricles to target neurodegenerative diseases.In this interview with Being Patient’s Mark Niu, Duma discusses how the trial is progressing. He explains the approach, shares Phase 1 safety results with encouraging early signals in biomarkers and cognition, and outlines a Phase 2 trial that will test effectiveness in a larger group of participants with mild to moderate Alzheimer’s disease. Phase 2 of the study calls for injections every two months with regular scans and laboratory tests, aiming to show whether this therapy could expand care options for people living with neurodegenerative disease.—-If you loved listening to this Live Talk, visit our website to find more of our Alzheimer’s coverage and subscribe to our newsletter: https://www.beingpatient.com/Follow Being Patient: Twitter: https://twitter.com/Being_Patient_Instagram: https://www.instagram.com/beingpatientvoices/Facebook: https://www.facebook.com/beingpatientalzheimersLinkedIn: https://www.linkedin.com/company/being-patientBeing Patient is an editorially independent journalism outlet for news and reporting about brain health, cognitive science, and neurodegenerative diseases. In our Live Talk series on Facebook, former Wall Street Journal Editor and founder of Being Patient, Deborah Kan, interviews brain health experts and people living with dementia. Check out our latest Live Talks: https://www.beingpatient.com/category/video/

U.S. Navy veteran Chris Tann, was diagnosed with behavioral variant frontotemporal dementia in 2019 after his wife, Debra, noticed behavioral changes and began documenting unusual incidents at home. They began learning and raising awareness about a condition that is often misunderstood. Today, he is an active member of the Black Dementia Minds support group and a participant in a long-term clinical trial at Vanderbilt University.In this conversation with Being Patient’s founder Deborah Kan, the couple discuss the early signs Chris exhibited prior to his diagnosis, the behavioral changes that come with behavioral variant frontotemporal dementia, caregiving strategies, and how faith plays a central role in how Chris copes with his diagnosis. Together, they emphasize the importance of awareness, advocacy, and research participation.—-If you loved listening to this Live Talk, visit our website to find more of our Alzheimer’s coverage and subscribe to our newsletter: https://www.beingpatient.com/Follow Being Patient: Twitter: https://twitter.com/Being_Patient_Instagram: https://www.instagram.com/beingpatientvoices/Facebook: https://www.facebook.com/beingpatientalzheimersLinkedIn: https://www.linkedin.com/company/being-patientBeing Patient is an editorially independent journalism outlet for news and reporting about brain health, cognitive science, and neurodegenerative diseases. In our Live Talk series on Facebook, former Wall Street Journal Editor and founder of Being Patient, Deborah Kan, interviews brain health experts and people living with dementia. Check out our latest Live Talks: https://www.beingpatient.com/category/video/

No Country for Old People, a documentary from filmmaker Susie Singer Carter and former federal prosecutor and US Attorney Rick Mountcastle, investigates widespread neglect and systemic failures in nursing facilities. Singer Carter tells a personal story about her mother, who lived with Alzheimer’s disease and received inadequate care in a five-star facility. Mountcastle, known for prosecuting Purdue Pharma for its role in the opioid crisis, connects his legal experience exposing corporate misconduct to troubling practices he uncovered in the long-term care industry. Together, they highlight how residents with dementia and other disabilities are often silenced, overlooked, or neglected by a system that profits from their vulnerability.In this Live Talk with Being Patient’s founder Deborah Kan, Carter and Mountcastle share the stories behind the film, including Singer Carter’s firsthand account of her mother’s decline in a care facility, and Mountcastle’s insights into how legal and corporate structures perpetuate exploitation. As advocates of the ROAR(Respect, Oversight, Advocacy, and Reform for Long-Term Care) movement, they said they intend their film to give voice to the voiceless and push for accountability. 

When Alice Bailey was diagnosed with early-onset Alzheimer’s at 56, some of the challenges were all too familiar. She had witnessed her mother’s experience with Alzheimer’s years earlier, and recognized some of the same gaps in care and communication with her diagnosis. Receiving no resources to help her process her diagnosis, she leaned on family, faith, and community to find support. Today, she’s a member of the Council of Black Dementia Minds, where she shares her story and helps build awareness about dementia in communities that are often underserved.In this Live Talk with Being Patient’s Mark Niu, Bailey reflects on the moment she knew something was wrong with her memory, the frustrations she faced in the healthcare system, and the steps she has taken to live well despite her diagnosis. From addressing the stigma of early-onset Alzheimer’s to advocating for greater awareness in the Black community, she continues to use her voice to inform others.

Growing evidence shows that Alzheimer’s risk is shaped not only by genetics but also by culture, environment, and lifestyle — and researchers say these differences may hold the key to better prevention and treatment.Dr. Sid O’Bryant, professor of pharmacology and neuroscience at the University of North Texas, is the principal investigator of the Health & Aging Brain Study – Health Disparities (HABS-HD), the most comprehensive Alzheimer’s study ever conducted across African American, Hispanic, and non-Hispanic white communities. His approach brings research into diverse communities often left out of large-scale studies, ensuring that findings reflect the populations most at risk.In this conversation with Being Patient’s Mark Niu, O’Bryant explained how factors like diabetes, hypertension, environment, and even social support networks shape brain health. He explained that these findings show why Alzheimer’s cannot be treated with a “one size fits all” model. Instead, precision medicine — tailoring prevention and treatment strategies to an individual’s genetic, cultural, and lifestyle background — could transform how we approach brain health and Alzheimer's treatments.

What does it feel like to take part in the largest lifestyle intervention trial in the United States?In this conversation, Patty Kelly and Phyllis Jones share personal stories about how Alzheimer’s disease has shaped their families — and why they chose to get involved in groundbreaking research aimed at preventing or slowing cognitive decline.If you loved this video, visit our website to find more of our Alzheimer’s coverage and subscribe to our newsletter: https://www.beingpatient.com/Follow Being Patient: Twitter: https://twitter.com/Being_Patient_Instagram: https://www.instagram.com/beingpatientvoices/Facebook: https://www.facebook.com/beingpatientalzheimersLinkedIn: https://www.linkedin.com/company/being-patientBeing Patient is an editorially independent journalism outlet for news and reporting about brain health, cognitive science, and neurodegenerative diseases. In our Live Talk series on Facebook, former Wall Street Journal Editor and founder of Being Patient, Deborah Kan, interviews brain health experts and people living with dementia. Check out our latest Live Talks: https://www.beingpatient.com/category/video/

This Live Talk is produced by Being Patient with support provided by Cognito Therapeutics. Learn more about Cognito's HOPE Study:https://www.hopestudyforad.com/ – Researchers and technology companies are looking into whether non-invasive, non-drug therapies — like electromagnetic, visual, and auditory stimulation — can treat Alzheimer’s disease. So, what does the science say about these emerging therapies? What can they do for the brain?Dr. Michelle Papka, founder and president of the Cognitive and Research Center of New Jersey (CRCNJ), joined Being Patient Live Talks to discuss emerging technology-assisted non-invasive interventions for Alzheimer’s. Papka is a neuropsychologist, psychotherapist, and researcher with more than 30 years of combined experience working in aging, Alzheimer’s, and dementia, and her own private clinical practice in New Jersey. She’s also an active public speaker, invited editor, grant reviewer, consultant, and committee member of multiple specialized organizations and publications on aging and Alzheimer’s.For over 15 years, she has served as the principal investigator on industry-sponsored clinical trials for Alzheimer’s disease and age-related cognitive impairment. Presently, she’s the principal investigator on Cognito’s HOPE study, which is testing the SPECTRIS AD device’s efficacy and safety for people living with Alzheimer’s, and an advisor to Cognito. This device uses visual and auditory stimulation to create gamma wave activity in the brain. Listen to the live talk to learn her perspective on non-invasive interventions for Alzheimer’s disease and what the future may hold for these treatments.

This podcast is part of the Journey to Diagnosis series, produced by Being Patient with support provided by Eli Lilly. Learn more about Journey to Diagnosis: https://www.beingpatient.com/journey-to-diagnosis/ Zelik “Zel” Bocknek joined Being Patient Live Talks with his wife, Gail Bocknek, to discuss his experience with diagnosis and living with early-stage Alzheimer’s disease. Zel, a retired business owner, started experiencing memory problems at age 84. He was later diagnosed with early-stage Alzheimer’s disease and is passionate about sharing his experience with diagnosis and living with the disease with others. He also participated in the lecanemab clinical trial and spoke about his experience with Maria Shriver on the TODAY show. Now 90, he continues taking the medication and enjoys downhill skiing, painting, and volunteering at the Toronto Zoo. Zel and Gail have lived in Toronto, Canada, for 60 years. They love to spend time with their three children and six grandchildren.

Precision medicine is a medical approach that considers a patient’s genes, environment, and lifestyle. In the realm of Alzheimer’s disease, experts are pushing for using this approach to improve diagnosis, treatment, and our understanding of the condition. But what does precision medicine for patients with Alzheimer’s disease and other dementias look like? The Alzheimer’s Drug Discovery Foundation (ADDF)’s Dr. Howard Fillit joins Being Patient Live Talks to discuss precision medicine and its potential in Alzheimer’s diagnosis and care. Fillit is an award-winning geriatrician, neuroscientist, and innovative philanthropy executive who has led the ADDF since its founding. He has authored or co-authored over 300 publications and is the senior editor of Brocklehurst’s Textbook of Geriatric Medicine and Gerontology. He has held faculty positions at Rockefeller University, the SUNY-Stony Brook School of Medicine, and the Cornell University School of Medicine. Fillit also maintains a limited private practice in consultative geriatric medicine focusing on Alzheimer’s disease and related dementias.