For four years, doctors told Sean Terwilliger he was fine. At 60, after failing a memory screening by a single point, he was diagnosed with early-onset Alzheimer's.

Terwilliger moved through three states and four primary care physicians before one finally gave him the MoCA, a 30-point cognitive screening. He failed it by one point — enough to get him to a neurologist, an MRI and a PET scan that showed significant amyloid buildup. The guidance that followed the diagnosis was that his prognosis was eight to 10 years, and that he should come back in two weeks to start infusions.

In this conversation with Being Patient's Mark Niu, Terwilliger describes the four-year fight to be tested, his 18 months and 39 infusions of Leqembi, and the p-tau217 blood test that showed he no longer meets the pathology threshold for Alzheimer's — a result that has left him unable to qualify for the clinical trials he now wants to join. He also explains how writing The ALZBlog and his book ALZ Fired Up! brought him out of the despair that followed diagnosis, and why he gave spousal caregivers a name of their own: sisu.

Journey to Diagnosis is a Being Patient series sponsored by Eisai. As with all of our reporting, the sponsor has no role in choosing guests, shaping questions, or reviewing content before publication.

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If you loved 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://beingpatient.com/live-talks/

Does heading a soccer ball damage your brain? Dr. Michael Alosco — clinical neuropsychologist, professor of neurology at Boston University's Chobanian & Avedisian School of Medicine, and co-director of clinical research at the BU CTE Center — explains why chronic traumatic encephalopathy (CTE) risk is driven by the lifetime load of repetitive head impacts, not by how many concussions a player has had.

He covers what MRI and blood biomarker studies show about heading and white matter change, why soccer research lags far behind football, whether U.S. Soccer's youth heading limits go far enough, his verdict on Guardian Caps, and what he tells parents who want their kids to keep playing.

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If you loved 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:   / being_patient_  Instagram:   / beingpatientvoices  Facebook:   / beingpatientalzheimers  LinkedIn:   / 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://beingpatient.com/live-talks/

What we eat can influence our health, but when it comes to protecting the brain and lowering dementia risk, nutrition advice can often feel confusing or contradictory. Which eating patterns have the strongest evidence behind them, and how much can diet really affect cognitive health over time?Dr. Gil Carvalho is a medical doctor and scientist who has a YouTube channel called Nutrition Made Simple, where he reviews the evidence behind popular nutrition claims and explains what the studies do and do not show. His research spans genetics, molecular biology, nutrition, behavior, aging, and neuroscience.In this conversation with Being Patient founder Deborah Kan, Carvalho said the diets linked to better brain health are not one named plan but a pattern: low in ultra-processed foods, high in fiber-rich foods like fruits, vegetables, whole grains, and legumes, and built around healthy fats such as nuts, seeds, fatty fish, and extra virgin olive oil. He explained why the Mediterranean, DASH, and MIND diets are close to interchangeable, what the evidence does and does not support for omega-3s, creatine, MCT oil, ketones, and multivitamins, and why the fear-mongering around seed oils is not supported by research. ----If you loved 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://beingpatient.com/live-talks/

For families caring for a loved one with dementia, deciding when home care is no longer enough is rarely simple. The signs are often gradual — a missed medication here, a stove left on there — and knowing when to seek more support, whether through in-home help, adult day care, or a residential community, can feel overwhelming without a clear framework for how to approach it.Cory Fosco has spent 34 years working in long-term care, with experience in social work, admissions, skilled nursing, senior care, and health care technology. He is the author of “The Question of When: A Practical Guide to Knowing When It’s Time for Assisted Living, Memory Care, or Skilled Nursing.”In this conversation with Being Patient’s Mark Niu, Fosco discussed the safety, medical, and social signals that suggest a person with dementia may need a higher level of care, and why families so often wait until a crisis forces their hand. He broke down the range of care options, from in-home help and adult day care to assisted living, memory care and skilled nursing, and shared what to look for, and which questions to ask, when touring a community. Fosco also addressed common misconceptions about Medicare and long-term care costs, and offered guidance on how families can build a foundation now so they aren’t forced into a rushed decision later.----If you loved 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://beingpatient.com/live-talks/

Brain health is shaped by more than age or genetics. The way we exercise, eat, sleep, manage stress, support our metabolism, and stay engaged with the world around us may all influence how well the brain functions over time.Dr. Tommy Wood, associate professor of pediatrics and neuroscience at the University of Washington, studies brain health across the lifespan, from the neurodevelopment of infants born preterm to cognitive aging in older adults. He directs preclinical research in the University of Washington’s Division of Neonatology and is the author of “The Stimulated Mind,” a book on the science of keeping the brain sharp at any age.In this Live Talk with Being Patient founder Deborah Kan, Wood discussed how neuroplasticity works, why the adult brain makes almost no new neurons even as the connections between existing neurons keep changing, and which activities can build cognitive reserve. He also addressed the long-term brain health risks tied to preterm birth and concussion, the supplements with the strongest evidence behind them, and the daily habits, from exercise to sleep to social connection, that he relies on himself.----If you loved 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://beingpatient.com/live-talks/

A dementia diagnosis can raise difficult questions about what comes next: How do you know what changes to expect? How should families prepare? And how can someone continue to live well as memory loss progresses?Those are some of the questions Dr. Zaldy Tan addresses in his new book, “What to Remember When You’re Forgetting: How to Live and Thrive With Memory Loss, Alzheimer’s and Other Dementias.” Tan, director of the Memory and Healthy Aging Program at Cedars-Sinai Medical Center and a professor at the David Geffen School of Medicine at UCLA, guides readers through the full spectrum of memory change, from recognizing early symptoms and pursuing an evaluation to navigating the different stages of Alzheimer’s and other dementias.In this Live Talk with Being Patient founder Deborah Kan, Tan discussed many of the issues families face, including what new blood-based Alzheimer’s biomarkers can and cannot tell us, how behavioral symptoms such as hallucinations and delusions differ across dementia types, and why getting a precise diagnosis matters. He also explained why preparing early, having conversations about future care, making new memories, and maintaining a sense of purpose can help people and families make the most of the years ahead.----If you loved 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://beingpatient.com/live-talks/

Urinary tract infections (UTIs) are among the most common infections in older adults, but in people living with dementia, they can trigger a sudden and dramatic change in behavior and cognition. A UTI that might cause mild discomfort in a younger, healthier person can instead set off delirium — an acute, fluctuating state of confusion — in someone with Alzheimer's or a related dementia.Dr. Shouri Lahiri is director of the Neurosciences Critical Care Unit and Neurocritical Care Research at Cedars-Sinai and leads the Lahiri Lab. His research focuses on the inflammatory mechanisms that link acute illnesses and infections to delirium and cognitive decline, including the role of immune signaling in brain changes during infection.In this conversation with Being Patient founder Deborah Kan, Lahiri explained why up to one-third of older adults with a UTI can develop delirium, and why that risk is even higher for people with dementia, who have less cognitive reserve to draw on. He discussed why early antibiotic treatment is critical and what caregivers can do — from monitoring hydration and sleep-wake cycles to recognizing subtle signs of urinary discomfort — to help prevent and manage delirium at home. He also shared where his lab's research into anti-inflammatory treatments currently stands.----If you loved 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://beingpatient.com/live-talks/

The experience of dementia, for people living with memory loss and for the family members and friends who care for them, is often told through the language of loss. But there is a growing effort to change that, creating work that centers connection, humanity, and what remains.

One of those projects is “Memory Generation,” an interview-based theater production set in a memory cafe, where people affected by dementia gather in a space built around creativity and community.Memory Generation was created by Sara Zatz and Sherrine Azab and premiered this year at La MaMa in New York City. Zatz is the artistic director of engagement at Pink Fang,, where she develops community-based work rooted in first-hand interviews. Azab is a Detroit-based theater director and co-director of the ensemble A Host of People. Both drew on their own experiences as family caregivers for loved ones living with dementia, as well as interviews with people across the country and the lived experiences of the show’s performers.In this Live Talk with Being Patient’s Mark Niu, Zatz and Azab discussed how they built the production, why they set it inside a memory cafe, and how they worked to portray caregiving without reducing it to its hardest moments. They also reflected on questions of consent and whose stories get told, the strain that limited resources place on caregivers, and how the arts and community might help build what they describe as a more dementia-friendly society.---If you loved 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://beingpatient.com/live-talks/

Journey to Diagnosis is a Being Patient series sponsored by Eisai. As with all of our reporting, the sponsor has no role in choosing guests, shaping questions, or reviewing content before publication.Eisai: https://www.eisai.com/index.htmlJourney to Diagnosis: https://beingpatient.com/journey-to-diagnosis/Scott Redfern first noticed cognitive changes in his mid-50s, when he began struggling to find words during stressful meetings and conversations at work. Because Alzheimer’s disease ran in his family, he sought medical guidance, but early cognitive testing and an MRI did not provide clear answers. After advocating for further evaluation, an amyloid PET scan confirmed amyloid buildup in his brain. Redfern, now 62, has since retired and is receiving Leqembi, also known as lecanemab, an anti-amyloid treatment approved for people in the early stages of Alzheimer’s.In this conversation with Being Patient’s Mark Niu, Redfern discusses the emotional impact of his diagnosis, the importance of finding compassionate care, and why patients may need to advocate for themselves when they know something is wrong. He also shares how writing his Substack newsletter “I’m Still Me,” volunteering, hiking, and staying connected with friends have helped him preserve his sense of identity. His message to others experiencing cognitive changes is that seeking answers early can provide access to treatment, support, and more time to plan how they want to live.----If you loved 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://beingpatient.com/live-talks/

Journey to Diagnosis is a Being Patient series sponsored by Eisai. As with all of our reporting, the sponsor has no role in choosing guests, shaping questions, or reviewing content before publication.George King’s work spans film, theater, writing, and photography. With both parents having lived with dementia, King was already attuned to the possibility of cognitive change when he began noticing subtle shifts in his own memory. A word game on his phone eventually became an unexpected warning sign, prompting him to seek evaluation from a neurologist. Today, he documents his experience on Instagram at @dancing.with.delirium, using his platform to share what it is like to live with Alzheimer’s.In this conversation with Being Patient founder, Deborah Kan, King reflects on the path to diagnosis, the role of Leqembi in his treatment and the importance of finding a neurologist who answers questions clearly. He also discusses the daily adaptations that help him manage frustration, stay independent and continue traveling, creating, and engaging with the world. For King, living with Alzheimer’s is not about fighting the disease, but learning how to negotiate with it while continuing to live as fully as possible.----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://beingpatient.com/live-talks/