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!

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