Brain Talk | Being Patient for Alzheimer's & dementia patients & caregivers

Former neuroscience nurse practitioner and Alzheimer’s advocate Doreen Monks joins Being Patient Live Talks to discuss her experience with diagnosis and her path toward advocacy. As she shared in her previous live talk with us, Monk was diagnosed with early-onset Alzheimer’s in 2016 at age 63, after which she became dedicated to sharing her story and working with organizations like Voices of Alzheimer’s, US Against Alzheimer’s, and the Alzheimer’s Association. Leveraging her background in neuroscience, specifically focusing on stroke care, management, prevention, and treatment, she uses her voice to reduce stigma around Alzheimer’s and promote education about the disease. Watch the full talk to learn more about her diagnosis and how she is using her medical background to educate others about Alzheimer’s disease.

Sarah Widmeyer joins Being Patient Live Talks to discuss her experience caring for her mother, Elaine, who passed away from Alzheimer’s in 2022, and how the experience set her off on the path to advocating for more gender diversity in clinical research. Widmeyer is an SVP of Wealth Strategies and CMO at Richardson Wealth, and she’s passionate about improving research and access to care for women. The end goal: to improve outcomes for women like her mom. Inspired by her experience as a caregiver and advocating for her mom as a patient, Widmeyer now serves on the Board of Directors of the Women’s Brain Health Initiative, an organization on funding research and creating education programs to combat brain-aging diseases that primarily affect women. Listen to the full Live Talk to learn more about her caregiving experience and her passion for advancing research on women’s brain health.

Pediatric psychotherapist Amanda Sullivan joins Being Patient Live Talks to discuss Leaf, a children’s book that commemorates the life of her mother, who died of frontotemporal dementia (FTD) in 2022. Sullivan wrote the book after struggling to find any children’s books on FTD for her own children. Leaf tells the story of her mother’s life in the hopes of giving young readers a chance to learn more about this type of dementia and the impact it can have on the family. In the live talk, she’ll discuss the book and how she hopes the book can help family members help children understand the disease. Sullivan is a licensed independent mental health practitioner (LIMHP) and licensed clinical social worker (LCSW). She resides in Lincoln, Nebraska where she co-owns a private practice of six therapists. She assisted in her mother’s diagnosis as well as coordinated and managed her medical care. Listen to this talk to learn more about Sullivan’s caregiving journey and how books like Leaf can help educate young people about dementia.

Brain health researchers are exploring new ways to leverage AI in the diagnosis of diseases like Alzheimer’s. One emerging field of study is that of vocal biomarkers: the way our voices sound. Some companies are even developing personal smart devices to identify vocal biomarkers — and, perhaps one day in the future, to aid in early diagnosis or even disease prevention. We asked David Liu, the CEO of Sonde Health, to join Live Talks to explain this emerging field, and tell us a bit more about the science behind voice biomarkers and their potential for early-identification of cognitive impairment. Listen to the full live talk to learn more about vocal biomarkers and their potential for early detection of cognitive decline.

High-tech treatments for neurodegenerative diseases are on the horizon. In fact, some patients already have brain implants that help address their symptoms through “reprogramming the brain.” Hear from one patient and his doctor about the real-life story behind this innovative new treatment for Parkinson’s. Speaker, author, and Parkinson’s Disease advocate Benjamin Stecher and neurologist Dr. Alfonso Fasano, join Being Patient live talks to discuss their upcoming book on just this topic, Reprogramming the Brain. The upcoming book, traces the experience of Stecher and his doctor Fasano’s 2021 decision to surgically implant two six-inch-long metal alloy spikes all the way through his brain. With the patient and doctor writing about the experience and what was to come afterward, the upcoming book will serve as a guide for the future of the brain and neuromodulation. Stecher, who was diagnosed with Parkinson’s disease at age 29, speaks regularly at academic centers and biotech companies about neurodegenerative diseases, research advocacy, and healthcare. The founder of Tomorrow Edition, he is a patient advisor to several organizations, including the Toronto Western Hospital Movement Disorder Clinic and Rune Labs. In addition to his upcoming book, he also co-wrote Brain Fables with Alberto Espay, published by Cambridge University Press. Fasano, who holds the Chair in Neuromodulation at the University of Toronto and University Health Network, is also a Professor in the Department of Medicine at the University of Toronto. In addition, he is staff neurologist and co-director of the Surgical Program for Movement Disorders at Toronto Western Hospital, staff neurologist at the Hospital of Sick Children in Toronto, and clinician investigator at the Krembil Research Institute and KITE – Toronto Rehabilitation Hospital. His work focuses on the treatment of movement disorders with advanced technology, pathophysiology, and treatment of tremor and gait disorders.

In this live-streamed Q&A with Positive Approach to Care founder and dementia care expert Teepa Snow, she answered Being Patient readers’ questions in real-time. Snow, MS, OTR/L, FAOTA, is an Occupational Therapist with over forty years of clinical and academic experience. Her experiences led her to the development of the GEMS® States of Brain Change and the Positive Approach® training strategies. Her company, Positive Approach to Care® (PAC), provides online and in-person education and products to support those living with brain change. She also founded the Snow Approach Foundation, a nonprofit organization based in Hillsborough, North Carolina. Listen to this live talk to get your questions about dementia caregiving answered!

In this live-streamed Q&A with Positive Approach to Care founder and dementia care expert Teepa Snow, she answered Being Patient readers’ questions in real-time. Snow, MS, OTR/L, FAOTA, is an Occupational Therapist with over forty years of clinical and academic experience. Her experiences led her to the development of the GEMS® States of Brain Change and the Positive Approach® training strategies. Her company, Positive Approach to Care® (PAC), provides online and in-person education and products to support those living with brain change. She also founded the Snow Approach Foundation, a nonprofit organization based in Hillsborough, North Carolina. Listen to this live talk to get your questions about dementia caregiving answered!

Alzheimer’s educator and activist Rebecca Chopp, Ph.D., joins Being Patient Live talks to discuss her upcoming book “Still Me: Accepting Alzheimer’s Without Losing Yourself.” As she discussed in a previous live talk with us, she’ll also be speaking about how she defies the stigma of Alzheimer’s by living with joy. Before Chopp’s diagnosis of Mild Cognitive Impairment and Alzheimer’s in 2019, she was a widely published author, editor, and academic in the fields of education, philosophy, religion, and feminism. In particular, she served as the 18th and first female chancellor of the University of Denver. She has also served as president of Swarthmore College and Colgate University, as Provost at Emory University, and as Dean of Divinity at Yale University. Since her retirement, Chopp has devoted her days to living with joy. She enjoys painting classical portraits and abstracts, hiking in the Colorado mountains with Buhdy, her dog, and spending time with friends and family. She also co-founded the advocacy group Voices of Alzheimer’s and serves as a board member of both the Alzheimer’s Association’s national organization and its Colorado Chapter. In addition to her writing and art, she is a frequent speaker on timely diagnosis, research for a cure, access and affordability of drugs, and lifestyle interventions for those with Alzheimer’s. Watch this live talk to learn more about her upcoming book — and her guidance for living well with Alzheimer’s. —---- If you loved watching 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/beingpatientalzheimers LinkedIn: https://www.linkedin.com/company/being-patient Being 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/ #Alzheimers #MildCognitiveImpairment #PatientPerspective #Books

Alzheimer’s educator and activist Rebecca Chopp, Ph.D., joins Being Patient Live talks to discuss her upcoming book “Still Me: Accepting Alzheimer’s Without Losing Yourself.” As she discussed in a previous live talk with us, she’ll also be speaking about how she defies the stigma of Alzheimer’s by living with joy. Before Chopp’s diagnosis of Mild Cognitive Impairment and Alzheimer’s in 2019, she was a widely published author, editor, and academic in the fields of education, philosophy, religion, and feminism. In particular, she served as the 18th and first female chancellor of the University of Denver. She has also served as president of Swarthmore College and Colgate University, as Provost at Emory University, and as Dean of Divinity at Yale University. Since her retirement, Chopp has devoted her days to living with joy. She enjoys painting classical portraits and abstracts, hiking in the Colorado mountains with Buhdy, her dog, and spending time with friends and family. She also co-founded the advocacy group Voices of Alzheimer’s and serves as a board member of both the Alzheimer’s Association’s national organization and its Colorado Chapter. In addition to her writing and art, she is a frequent speaker on timely diagnosis, research for a cure, access and affordability of drugs, and lifestyle interventions for those with Alzheimer’s. Watch this live talk to learn more about her upcoming book — and her guidance for living well with Alzheimer’s. —---- If you loved watching 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/beingpatientalzheimers LinkedIn: https://www.linkedin.com/company/being-patient Being 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/ #Alzheimers #MildCognitiveImpairment #PatientPerspective #Books

Alzheimer’s educator and activist Rebecca Chopp, Ph.D., joins Being Patient Live talks to discuss her upcoming book “Still Me: Accepting Alzheimer’s Without Losing Yourself.” As she discussed in a previous live talk with us, she’ll also be speaking about how she defies the stigma of Alzheimer’s by living with joy. Before Chopp’s diagnosis of Mild Cognitive Impairment and Alzheimer’s in 2019, she was a widely published author, editor, and academic in the fields of education, philosophy, religion, and feminism. In particular, she served as the 18th and first female chancellor of the University of Denver. She has also served as president of Swarthmore College and Colgate University, as Provost at Emory University, and as Dean of Divinity at Yale University. Since her retirement, Chopp has devoted her days to living with joy. She enjoys painting classical portraits and abstracts, hiking in the Colorado mountains with Buhdy, her dog, and spending time with friends and family. She also co-founded the advocacy group Voices of Alzheimer’s and serves as a board member of both the Alzheimer’s Association’s national organization and its Colorado Chapter. In addition to her writing and art, she is a frequent speaker on timely diagnosis, research for a cure, access and affordability of drugs, and lifestyle interventions for those with Alzheimer’s. Watch this live talk to learn more about her upcoming book — and her guidance for living well with Alzheimer’s. —---- If you loved watching 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/beingpatientalzheimers LinkedIn: https://www.linkedin.com/company/being-patient Being 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/ #Alzheimers #MildCognitiveImpairment #PatientPerspective #Books

Dr. Ifrah Zawar joins Being Patient Live Talks to discuss seizures, cognitive decline, and dementia. As she discussed in our article on seizures, epilepsy can accelerate cognitive decline, and the condition can also be mistaken for cognitive decline. Watch the live talk to learn more about the connection between seizures, cognitive decline, and dementia.

Lou Niles joins Being Patient Live Talks to discuss his experience taking part in the donanemab clinical trial. The monoclonal antibody drug was revealed to have promising results in late 2023 and is currently awaiting FDA approval. Now retired, Niles previously served as an army officer, a combat helicopter pilot in Vietnam, and as a firefighter and paramedic in San Diego. Because his mother died from Alzheimer’s, he was aware that he could be susceptible to cognitive decline, which led him to do a 23&Me DNA test a decade ago. The test revealed that he had one mutation associated with a higher risk for Alzheimer’s. That’s why, when he saw that there was an Alzheimer’s study in Orlando, FL, where he currently lives, Niles decided to participate. Over the course of the trial, he discovered that he indeed has cognitive decline and amyloid in his brain. In the talk, Niles will speak about his experience with cognitive decline and participating in the donanemab trial. Watch now to learn more about the clinical trial experience with MAB drugs. ------------ If you loved watching 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/beingpatientalzheimers LinkedIn: https://www.linkedin.com/company/being-patient

Dr. Ifrah Zawar joins Being Patient Live Talks to discuss seizures, cognitive decline, and dementia. As she discussed in our article on seizures, epilepsy can accelerate cognitive decline, and the condition can also be mistaken for cognitive decline. Zawar is an adult neurologist, epileptologist, and an Assistant Professor at the University of Virginia. Her clinical and research work focuses on seizures and epilepsy in older adults and epilepsy in people with dementia. She serves on editorial boards of prestigious epilepsy and Alzheimer’s disease journals and has won multiple awards and recognition for her research endeavor. Watch the live talk to learn more about the connection between seizures, cognitive decline, and dementia. _____ If you loved watching 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/beingpatientalzheimers LinkedIn: https://www.linkedin.com/company/being-patient

Clinical psychologist, educator, and author Dasha Kiper joins Being Patient Live Talks to discuss her book "Travelers to Unimaginable Lands." Using her experience as a caregiver and counselor and research on neurological and cognitive research, Kiper shares stories of caregivers and people living with dementia in the book. In particular, using stories and neurological research together, she can shed light on the pressures on caregivers. Kiper previously was the Clinical Director for Support Groups at a New York Alzheimer’s Organization. She’s led groups for people in the early stages of Alzheimer’s and caregivers of those with dementia disorders. Kiper has also trained and supervised mental health professionals who work with dementia caregivers. Learn more about this book on dementia, caregiving, and the brain by watching the talk. __________________ If you loved watching 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/beingpatientalzheimers LinkedIn: https://www.linkedin.com/company/being-patient

The process of finding new treatments for Alzheimer’s disease is one of trial and error — and every “failed” trial generates invaluable new data to help researchers and drug developers understand what works, what doesn’t, and why. On Wednesday, January 24th, at 10:00 a.m. PT/1:00 p.m. ET, drug trial participant Bill Sasse, who was a participant in Eli Lilly’s clinical trial of experimental monoclonal antibody drug solanezumab, joins Being Patient Live Talks to discuss his experience with the drug trial. In March of 2023, solanezumab ultimately failed to hit its benchmarks in slowing cognitive decline and the trial was discontinued. Sasse, whose father died of Alzheimer’s, had the unique experience of participating in a clinical trial for a MAB drug without having any symptoms of cognitive decline. An army veteran, retired business owner, grandparent, and a native of Columbus, Indiana, he joined the trial after being inspired by a documentary about Glen Campbell promoting the trial, asking himself, “Why not, me?” With his wife as his trial partner, he participated in the solanezumab trial for eight years before it was announced that the clinical trial had failed. He has participated in panels with Eli Lilly on his experience with the trial. Watch the full video to learn more about the clinical trial experience with MAB drugs. _____ If you loved watching 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/beingpatientalzheimers LinkedIn: https://www.linkedin.com/company/being-patient Being 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/ #alzheimersresearch #solanezumab #clinicaltrials #alzheimers #dementia

Award-winning dementia researcher and educator Dr. Nir Grossman joins Being Patient Live Talks to talk about the potential of cutting-edge medical technology like deep brain stimulation as an emerging approach to treating neurodegenerative diseases like Alzheimer’s. Grossman is an associate professor at the Department of Brain Sciences at Imperial College London and a founding fellow of the UK Dementia Research Institute (UK-DRI). He received a prestigious prize from the Science Journal and American Association for the Advancement of Science (AAAS) for developing a new, non-invasive method of deep brain stimulation, called temporal interference, which is now in early clinical trials. Previously, this procedure required invasive brain surgery. His research has been published in scientific journals like Cell, Science, and Nature Neuroscience. Read the article here: https://www.beingpatient.com/nir-grossman-deep-brain-stimulation-dementia/ ___ If you loved watching 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/beingpatientalzheimers LinkedIn: https://www.linkedin.com/company/being-patient Being 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/ #DeepBrainStimulation #Neuromodulation #AlzheimersResearch #Dementia #Alzheimers

🔥The 5 BIGGEST breakthroughs of 2023 in Alzheimer’s and dementia. 🚀 From the FDA's full approval of Leqembi, a game-changing Alzheimer's drug, to the revolutionary potential of PET scans in diagnosing Alzheimer's, get ready for groundbreaking news in #Alzheimer's and #dementia research💡 But that's not all—get ready to learn about direct-to-consumer blood tests, cutting-edge AI technology, and the latest insights on genetic testing. 🩺🔬 Don't miss this exciting discussion that's shaping the future of Alzheimer's care and prevention. Tune in now and become a part of the movement! Stay tuned by following us here and watching for updates at beingpatient.com If you loved watching 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/beingpatientalzheimers LinkedIn: https://www.linkedin.com/company/being-patient Being 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/ #AlzheimersBreakthroughs #DementiaResearch #Leqembi #PETScans #BloodTests #AItechnology #GeneticTesting #BeingPatient

Award-winning dementia researcher and educator Dr. Nir Grossman joins Being Patient Live Talks to talk about the potential of cutting-edge medical technology like deep brain stimulation as an emerging approach to treating neurodegenerative diseases like Alzheimer’s. Grossman is an associate professor at the Department of Brain Sciences at Imperial College London and a founding fellow of the UK Dementia Research Institute (UK-DRI). He received a prestigious prize from the Science Journal and American Association for the Advancement of Science (AAAS) for developing a new, non-invasive method of deep brain stimulation, called temporal interference, which is now in early clinical trials. Previously, this procedure required invasive brain surgery. His research has been published in scientific journals like Cell, Science, and Nature Neuroscience. Read the article here: https://www.beingpatient.com/nir-grossman-deep-brain-stimulation-dementia/ ___ If you loved watching 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/beingpatientalzheimers LinkedIn: https://www.linkedin.com/company/being-patient Being 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/ #DeepBrainStimulation #Neuromodulation #AlzheimersResearch #Dementia #Alzheimers

The key to understanding Alzheimer’s disease could be in our genes. While the cause of Alzheimer’s is still unknown, mounting research shows that carrying multiple copies of certain genes — like genetic variant ApoE4 — can significantly increase the likelihood of developing Alzheimer’s. By studying genetics and gene therapy, scientists are learning more about how genes play a role in Alzheimer’s disease and what can be done for prevention. Barrow Neurological Institute’s neurologist, author, and Alzheimer’s expert Dr. Marwan Sabbagh joins Being Patient to discuss how scientists are seeking to prevent Alzheimer’s through genetic research. Sabbagh, a board-certified behavioral neurologist at Barrow’s Alzheimer’s and Memory Disorders Program and a professor at the institute’s department of neurology, has served as the lead investigator on several prominent national Alzheimer’s prevention and treatment clinical trials. In this talk, he’ll speak about how genetic research, like that on the ApoE4 gene, can help us learn more about Alzheimer’s and how it can be prevented. This Live Talk is sponsored by Alzheon.

Xanax and other benzodiazepines (“benzos”) are often prescribed to treat symptoms like agitation, anxiety, and depression in people living with dementia. Yet, these drugs come with significant side effects and safety concerns, especially for older adults living with dementia. The Women’s Age Lab’s Dr. Paula Rochon and Dr. Christina Reppas-Rindlisbacher join Being Patient Live Talks to discuss why these medications are prescribed and what treatment alternatives they recommend. Rochon is the founding director of Women’s Age Lab, a geriatrician, and a senior scientist at Women’s College Hospital and ICES. She chairs the Canadian Institutes for Health Research Institute of Aging Advisory Board to support research and promote healthy aging across Canada. Rochon is committed to the development of trainees and new investigators in aging research and making valuable contributions to our future understanding of aging. Her team has won prestigious research awards, and published in peer-reviewed academic journals, disseminating key learnings and important findings from their research projects. Reppas-Rindlisbacher is a trainee with the Women’s Age Lab at the Women’s College Research Institute. She currently works as a geriatrician whilst completing her PhD in Clinical Epidemiology & Health Care Research at the Institute of Health Policy, Management and Evaluation (IHPME) at the University of Toronto. Her research aims to better understand how delirium care differs depending on sociodemographic factors such as gender, income, language, and recent immigrant status. Watch this live talk to learn more about benzodiazepines, why they are prescribed, and alternative treatments for people living with dementia. Read the Article: https://www.beingpatient.com/benzodiazepines-and-dementia/ ___ If you loved watching this Live Talk, visit our website to find more of our Alzheimer’s coverage and subscribe to our newsletter: https://www.beingpatient.com/