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

Award-winning Alzheimer’s and dementia educator and best-selling author Dr. Macie P. Smith joined Being Patient Live Talks to discuss her latest book, “A Dementia Caregiver Called to Action: The Journey.” In the context of her experience as an educator and a licensed gerontology social worker, she’ll also speak to the caregiving needs specific to Black families and Black communities. Smith has over 22 years of experience coordinating care for aging and vulnerable populations. As the author of past books including, “A Dementia Caregiver’s Guide to Care: Just Ask Dr. Macie,” her caregiving insights and guidance have been published in national and international professional journals. She’s also an advisory board member with Leeza’s Care Connection. Watch the full interview to hear some of Dr. Macie’s top dementia care insights and how we can better support caregivers in Black communities.

Alzheimer’s advocate Betsy Groves joined Being Patient Live Talks to discuss her long and rocky journey to an Alzheimer’s diagnosis, her experience living with Alzheimer’s, and her work advocating for other patients on this journey Groves had a career as a clinical social worker in the Boston Medical Center in the Department of Pediatrics where she founded a counseling program for young children affected by trauma. Then, she taught courses in early childhood mental health and development at Harvard’s Graduate School of Education. In her early 60s, Groves first started noticing cognitive changes. Her doctor reassured her that there was nothing to worry about, and she was experiencing normal aging. But her concerns grew. A friend in the medical field arranged for a neuropsychological evaluation. The results indicated a diagnosis of Alzheimer’s, but the search for a neurologist to confirm the diagnosis took eight months. It wasn’t until 2021, at the age of 72, that Groves was able to get a lumbar puncture that showed amyloid in her cerebrospinal fluid and get an official diagnosis. Groves reached out to the Alzheimer’s Association, where she was able to get guidance on the journey. Later, she served on the 2022-2023 National Early-Stage Advisory Group and continues to do advocacy work for the organization. She lives with her husband Tim in Cambridge, Massachusetts. They have two adult daughters and three grandchildren.

Positive Approach to Care founder and dementia care expert Teepa Snow returns to Being Patient Live Talks for “Ask Teepa Anything” to answer 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.

Alzheimer’s disease is the most common form of dementia. Over time, Alzheimer’s progresses through the brain, causing changes that can lead to cognitive decline, and eventually interfering with everyday life, from daily activities like getting dressed, to having conversations. Alzheimer’s affects everyone differently. The timing and severity of symptoms could be different for each person, and it can be difficult to determine which stage your loved one is in as stages may overlap. So, this “7 stages” framework is only meant to be a guideline, but if someone you care about is living with  Alzheimer’s, knowing the signs of each stage can help you assist in managing the disease — and having a bit of a clearer idea what to expect. Want to keep learning? Explore our free, expert-vetted, science-backed interactive guide on the 7 stages of Alzheimer’s:  https://www.beingpatient.com/seven-stages-of-alzheimers-interactive-guide/ Are you taking care of a loved one with Alzheimer’s? Looking After Yourself While Caregiving: 3 Things You Need To Know:https://www.beingpatient.com/caregiving-strategies-dale-atkins/

Receiving an Alzheimer’s diagnosis is often a long, complex process, with many individuals facing delayed diagnosis or even misdiagnosis for years. A key reason for misdiagnosis could be the amount of training doctors are receiving on cognitive decline.  University of Washington’s Dr. Barak Gaster is trying to fill that gap in his work directing the Cognition in Primary Care Program, which trains doctors to improve dementia diagnosis and care. Gaster joined Being Patient founder Deborah Kan in a conversation on why diagnosing Alzheimer’s is so difficult to diagnose, particularly in its early stages. He also shed light on the barriers physicians face in recognizing mild cognitive impairment (MCI) and how primary care providers can improve diagnosis and care for those experiencing cognitive decline. Watch the conversation to learn his practical advice for patients and caregivers seeking diagnosis, as well as his take on why these challenges exist and what can be done to improve the diagnosis process.

Alzheimer’s advocate Myra Garcia joins Being Patient Live Talks to discuss her experience with early-onset Alzheimer’s and her work with the Latino community to shed light on the disease.  After a career in classical music, performing in musicals and operas around the world, Garcia changed careers to work in higher education when her second child was born. A decade ago, Garcia started to have difficulty with her job responsibilities working in fundraising at the University of La Verne. A neurologist initially diagnosed her with Attention Deficit Disorder (ADD), but after continued memory issues, she was finally able to see a neuropsychiatrist. After a day-long cognitive testing and review of her medical records, Garcia was finally diagnosed with early-onset Alzheimer’s in 2020.  Now retired, Garcia served on the 2022-2023 Early Stage Advisory Group and continues to advocate for people like her. As the daughter of Cuban immigrants, she also has a particular focus on education and outreach in the Latino community. She also volunteers at a senior memory care center, sings in three choirs, and remains physically and socially active. Garcia also participated in the donanemab clinical trial.  Watch the interview to learn more about her story and her advocacy work in the Latino community

Dr. Catherine Madison joins Being Patient Live Talks to discuss how patients experience anosognosia in dementia, which is a neurological condition in which you are unaware of having a particular disease. She’ll explain how understanding this symptom can help caregivers step into dementia’s reality.  Madison became a neurologist after being a caregiver to her mother, who died of dementia in 2011. She worked with Dagmar Dolby to open the Ray Dolby Brain Health Center in San Francisco in 2014. At this center, she provides support for the individuals and families navigating a dementia diagnosis. In particular, Madison focuses on providing education to the community around dementia planning and care.  Listen to the full talk to learn more about anosognosia and dementia care.

Rutgers’ neurologist Dr. William T. Hu joins Being Patient Live Talks to discuss his research on “brain fog” or cognitive impairment in Long COVID and its relation to cognitive decline and Alzheimer’s disease.  Read about his research here: https://www.beingpatient.com/long-covid-brain-fog-alzheimers/  Hu directs the Division of Cognitive Neurology and Alzheimer’s Disease Clinic at Robert Wood Johnson Medical School, as well as the Center for Healthy Aging Research at Rutgers Institute for Health. His research focuses on biomarkers related to Alzheimer’s disease, frontotemporal dementia, and Long-COVID. Hu leads several research projects including the Rutgers Biomarkers of Neurodegeneration Project, Rutgers South Asian Aging Brain Initiative, Rutgers-Stanford Chinese Older Adult Study, Rutgers-NYU Resource Center for Alzheimer’s and Dementia Research in Asian and Pacific Americans, and the Cognition/Biomarker component of the New Jersey Population Health Cohort Study. Watch the live talk to learn more about Long COVID, cognitive impairment, and Alzheimer’s disease.

With scientists studying if new semaglutide weight loss drugs could potentially treat dementia, many have questions about the potential impact of Ozempic and Wegovy on the brain. University of Virginia’s Dr. Heather Ferris joins Being Patient Live Talks to discuss the current research on the impact of semaglutide drugs on brain health.   An Associate Professor and endocrinologist at the University of Virginia, she specializes in the care of older adults with diabetes. Ferris’s research lab focuses on understanding how changes in brain cholesterol and insulin signaling can impact cognitive decline and the development of Alzheimer’s disease.  Listen to the full talk to learn what we currently know about semaglutide drugs and their impact on the brain.  Want to learn more about brain health and diet? Check out our interactive guide: https://www.beingpatient.com/guide-diet-brain-health/

Alzheimer’s advocate Reda Harrison joins Being Patient Live Talks to discuss her experience with her diagnosis of dementia, and later Mild Cognitive Impairment (MCI), and early-onset Alzheimer’s. She’ll also discuss how those diagnoses led her to work with the Alzheimer’s Association and back into quilting.   Harrison was diagnosed with MCI in 2018 and is now in the early stages of Alzheimer’s disease. After a group study on MCI at the University of Kentucky ​​Sanders-Brown Center on Aging, she began researching the condition’s connection to Alzheimer’s disease, which led her to the Alzheimer’s Association. She became involved in volunteer work and with support groups as she navigated her diagnosis. Harrison was later named an Early-Stage Advisor for the Alzheimer’s Association in the 2022-2023 cohort and continues volunteering as an advocate.  Since retiring in 2021 from the University of Kentucky as a Surgery Coordinator, Harrison has been involved as an advocate for the Alzheimer’s Association. Beyond her advocacy work, she has rediscovered quilting and works on projects with her stepdaughter and members of the community. She also gardens as much as she can and takes piano lessons.