Diagnosed at 47: Ben Draper’s Early-Onset Alzheimer’s Journey | Ben and Robin Draper

After Deborah Kan’s mother, Alvera Kan, died in December of last year, the family donated her brain to UCSF to better understand what type of dementia she had. The answer came back with not just one diagnosis, but three different types of dementia: Alzheimer’s disease, vascular dementia, and LATE. Kan and her sister, Susan Whitaker, are joined by Dr. Bruce Miller, director of the UCSF Edward and Pearl Fein Memory and Aging Center, and Dr. David Soleimani-Meigooni, a neurologist at UCSF’s Memory and Aging Center and assistant professor focused on precision diagnosis in Alzheimer’s and related neurodegenerative diseases. Miller’s work has helped shape how clinicians identify and distinguish different forms of dementia, including frontotemporal dementia, while Soleimani-Meigooni’s clinical and research work includes using imaging and biomarkers to better understand amyloid, tau and other drivers of cognitive decline.In this conversation with Kan and Whitaker, Miller and Soleimani-Meigooni discuss how dementia diagnosis can remain uncertain during life and how an autopsy can reveal multiple diseases. They underscores how common mixed dementias are, why symptoms such as getting lost or struggling with numbers can point to specific brain changes, and why better diagnostic tools are needed. They also highlight the lasting scientific value of brain donation, showing how one family’s decision can contribute to more precise diagnoses, better biomarkers, and, ultimately, more individualized treatment approaches for future patients.---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/

Dr. Michael Fossel, MD, PhD is a physician-scientist and recognized expert in aging and telomere biology. He serves as chairman of the board of Telocyte, a biotech company developing telomerase therapy for Alzheimer’s disease, with FDA-sponsored human trials planned to target the underlying disease process. Fossel has authored more than 100 scientific publications and has lectured internationally, including at the National Institutes of Health. His work explores how processes like cell senescence — when aging cells stop working properly and can contribute to chronic inflammation — may help drive age-related diseases, including Alzheimer’s.In the interview with Being Patient Founder Deborah Kan, Fossel argues that aging is not simply wear and tear, but a breakdown in the body’s ability to maintain and repair cells over time. He explains why lifestyle habits may help slow aging but are unlikely to reset it and outlines why his research is focused on whether telomerase therapy could restore cellular function in Alzheimer’s. He acknowledges that the science is still in its early stages, with major questions remaining about how much damage can be reversed, which patients might benefit most, and how soon these ideas can be tested in people.----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:   / 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/

Conversations about cognitive impairment can feel confusing and hard to navigate. You may notice small changes and not know whether to bring it up, how to bring it up, or what the “right” approach is without causing fear, defensiveness, or shame. Dr. Dani Cabral is a neurologist and psychiatrist with more than 15 years of experience in Alzheimer’s care and clinical research. She founded BrainLove after seeing how the traditional health care system often fails to give patients and families the time, support, and individualized care they need. Through BrainLove, Cabral is working to transform the narrative on Alzheimer’s and related diseases by combining cutting-edge medical care, accessible education, and trusted resources to help families move forward with more clarity and a sense of possibility. Drawing on her background in both neurology and psychiatry, as well as early experience in hospice dementia care, Cabral brings a whole-person approach that addresses not only the biology of cognitive decline, but also the emotional, psychological, and practical realities families face.In this interview with Being Patient’s Mark Niu, Cabral emphasizes that conversations about cognitive changes should begin gently and without assumptions, focusing on curiosity rather than confrontation. She highlights the importance of involving family members early, addressing safety concerns before they become crises, and recognizing that cognitive decline is not always straightforward or caused by one condition alone. --- 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/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/

This interview is brought to you in partnership with Eisai and is part of the Journey to Diagnosis series.Eisai: https://www.eisai.com/index.htmlJourney to Diagnosis: https://beingpatient.com/journey-to-diagnosis/Ben Draper was just 47 when he was diagnosed with early-onset Alzheimer’s. In the years leading up to that diagnosis, he and his wife, Robin, began noticing changes. Ben struggled with everyday tasks that used to come easily, such as sending text messages, using a phone or computer, managing time, and doing simple math. While running his construction business, he realized he could no longer read a tape measure. Even following GPS while driving became difficult.Early testing revealed significant cognitive impairment, followed by an extensive medical workup that included an MRI and a spinal tap. The results showed amyloid plaque, and, with a strong family history of Alzheimer’s, Ben later learned he also carries a genetic link to the disease.Today, Ben and Robin are focused on living each day to the fullest. They document their experiences on TikTok (@draperfamilylife) to help others feel less alone and to raise awareness about early-onset Alzheimer’s.In this conversation with Being Patient’s founder Deborah Kan, Ben and Robin describe the emotional whiplash of fearing a rapidly fatal diagnosis like Creutzfeldt-Jakob disease before receiving clarity, and the unexpected relief that can come with finally having the early-onset Alzheimer’s diagnosis. They talk candidly about Ben's symptoms and how financial and care gaps can leave younger families scrambling for disability coverage, insurance, and support. Above all, they return to a guiding mindset, focus on what Ben can still do, lean on community, and make each day count.----Visit Being Patient for more Alzheimer’s and brain health coverage: https://www.beingpatient.com/Follow Being PatientTwitter: https://twitter.com/Being_PatientInstagram: 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 covering brain health, cognitive science, and neurodegenerative diseases. Our Live Talk series features interviews with experts and people living with dementia.Watch more Live Talks: https://beingpatient.com/live-talks/

This interview is brought to you in partnership with Eisai and is part of the Journey to Diagnosis series.Eisai: https://www.eisai.com/index.htmlJourney to Diagnosis: https://beingpatient.com/journey-to-diagnosis/ What are the early signs of primary progressive aphasia (PPA)?In this Being Patient Live Talk, Samuel Valverde and his wife, Heather, share their journey to a diagnosis of primary progressive aphasia, a form of cognitive impairment that affects language and communication.Samuel Valverde is a Desert Storm combat veteran and former police chief in Waelder, Texas, who built his life around discipline, service, and staying sharp under pressure. But over time, subtle changes began to appear — missed court dates, forgotten details, and increasing difficulty with focus, planning, and speech.In 2022, while being treated for PTSD, Samuel’s psychologist noticed changes that seemed to go beyond trauma. After months of testing — including cognitive evaluations, speech therapy, MRIs, and a PET scan — Samuel was diagnosed at age 53 with primary progressive aphasia (PPA).In this conversation with Being Patient’s Mark Niu, Samuel and Heather talk openly about:Recognizing the early warning signs of PPAThe road to diagnosisHow PPA affects speech and daily lifeThe emotional impact on the whole familyAdjusting roles as a couple after diagnosisFinding resilience, support, and hopeIf you or someone you love is living with PPA, young-onset Alzheimer’s, or another form of dementia, this conversation offers insight, support, and practical perspective.Visit Being Patient for more Alzheimer’s and brain health coverage: https://www.beingpatient.com/Follow Being PatientTwitter:   / being_patient  Instagram:   / beingpatientvoices  Facebook:   / beingpatientalzheimers  LinkedIn:   / being-patient  Being Patient is an editorially independent journalism outlet covering brain health, cognitive science, and neurodegenerative diseases. Our Live Talk series features interviews with experts and people living with dementia.

Parkinson’s can affect speech and swallowing—often starting with subtle changes like a softer or raspy voice. Without treatment, these issues can progress, making communication harder and increasing the risk of swallowing complications, including aspiration.In this Live Talk, Samantha Elandary, MA, CCC-SLP—speech-language pathologist and President & CEO of the Parkinson Voice Project—shares why early evaluation matters and how targeted therapy can help people protect their voice and swallow. She explains how Parkinson’s can change how loud someone thinks they’re speaking, why everyday skills like talking and swallowing may need to shift from “automatic” to more intentional control, and how daily practice can make a difference.You’ll learn about:Early signs of Parkinson’s-related voice and speech changesWhy “speaking with intent” can support clearer communicationHow speech therapy may help protect swallowing and reduce aspiration riskWhy consistent at-home exercises are key (not just clinic visits)Programs like Parkinson Voice Project’s SPEAK OUT!® and ongoing supportExplore more brain health journalism from Being Patient + subscribe to our newsletter:https://www.beingpatient.com/Follow Being PatientTwitter:   / being_patient_  Instagram:   / beingpatientvoices  Facebook:   / beingpatientalzheimers  LinkedIn:   / being-patient  Being Patient is an editorially independent journalism outlet covering brain health, cognitive science, and neurodegenerative diseases. In our Live Talk series, founder and former Wall Street Journal editor Deborah Kan interviews experts and people with lived experience.Watch our latest Live Talks:https://beingpatient.com/live-talks/

Exercise can ease Parkinson’s symptoms — but can it also slow the disease itself?In this Being Patient Live Talk, Northwestern University researcher Daniel Corcos, PhD breaks down the science behind high-intensity aerobic exercise and why his team is putting it to the test in a major Phase 3 clinical trial (SPARX3). SPARX3 is designed to examine whether exercise intensity can influence Parkinson’s progression, especially for people who are newly diagnosed and not yet taking Parkinson’s medication.Corcos, a professor in Northwestern’s Department of Physical Therapy and Human Movement Sciences, shares what research has already taught us about exercise and Parkinson’s — and what we still need to prove. He also lays out a practical, four-part “exercise prescription” you can use as a framework:✅ Aerobic training✅ Resistance/strength work✅ Flexibility✅ Balance + neuromotor trainingYou’ll also learn how SPARX3 will follow 370 participants over two years, comparing moderate- vs. high-intensity treadmill training and tracking changes in symptoms and brain imaging to explore whether higher intensity is linked to slower progression.Hosted by: Deborah Kan, Founder of Being Patient--- Subscribe for more Live Talks and brain health reporting:https://www.beingpatient.com/Follow Being Patient:Twitter/X:   / being_patient  Instagram:   / beingpatientvoices  Facebook:   / beingpatientalzheimers  LinkedIn:   / being-patient  Watch more Live Talks:https://beingpatient.com/live-talks/Being Patient is an editorially independent journalism outlet covering brain health, cognitive science, and neurodegenerative diseases. In our Live Talk series, founder and former Wall Street Journal editor Deborah Kan interviews brain health experts and people living with dementia.#parkinsonsdisease #Exercise #SPARX3 #BrainHealth #Neurology #ParkinsonsResearch #Fitness #MovementDisorder #BeingPatient

High blood pressure is one of the most common and treatable risk factors for cognitive decline, and researchers are still working to understand exactly how it affects the brain. A preclinical study from Weill Cornell Medicine, published in Neuron, suggests hypertension may trigger early gene expression changes in the brain, affecting neurons, blood vessels, and white matter before there’s any measurable rise in blood pressure.Dr. Costantino Iadecola, the study’s senior author, is a neurologist and the director of the Feil Family Brain and Mind Research Institute at Weill Cornell Medicine. His research examines how brain blood vessels support cognition and what happens when that system is disrupted by vascular risk factors like hypertension.In this interview with Being Patient’s Mark Niu, Iadecola explains that in a controlled mouse model, researchers saw changes in blood vessels within days of triggering hypertension. He notes that high blood pressure is part of a broader process that can quietly affect multiple organs, including the brain, before obvious symptoms appear. He also discusses why controlling blood pressure dramatically reduces stroke risk but may not lower dementia risk as much as hoped, suggesting prevention may need to start earlier and be more individualized. For now, he emphasizes improving diet, staying active, and taking medication when appropriate to manage blood pressure. 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:   / 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/

Older adults often turn to prescription and over-the-counter sleep aids — but what do we really know about their long-term effects on brain health? A large, long-running UCSF study, published in the Journal of Alzheimer’s Disease, examined the association between sleep medication use and risk of dementia in older adults. Researchers found that frequent use of sleep medications was linked to a higher likelihood of developing dementia among white participants, while the same pattern was not seen among Black participants. Dr. Yue Leng, PhD, an epidemiologist at UC San Francisco whose work explores how sleep, circadian rhythms, and napping relate to neurodegeneration and cognitive decline in older adults, was one of the researchers on the study.If you loved listening 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/

This interview was brought to you in partnership with Eisai and is part of the Journey to Diagnosis series.Eisai: https://www.eisai.com/index.htmlJourney to Diagnosis: https://beingpatient.com/journey-to-diagnosis/Luke Davis spent four decades as a Dallas attorney — and an active husband, father, youth sports coach and school board member — before subtle memory changes raised concerns. In this Being Patient Perspectives interview, Luke and his wife, Paula Davis, share the early signs of Alzheimer’s they noticed first, how they pursued answers, and what helped them move forward.After a primary care visit, Luke underwent cognitive testing, an MRI and an amyloid PET scan that confirmed plaque. In April 2023, just before his 69th birthday, he was diagnosed with early-stage Alzheimer’s disease. Luke later learned he carries two copies of the APOE4 gene, a major genetic risk factor for Alzheimer’s.Luke and Paula also discuss treatment and support — including Luke’s experience with Leqembi (lecanemab) infusions — and how they’ve leaned on the Alzheimer’s Association, community, and practical day-to-day strategies. Their message for newly diagnosed individuals and couples: Alzheimer’s is a detour, not a dead end — and Luke is focused on “living with Alzheimer’s, not dying from it.”Topics covered: early Alzheimer’s symptoms, diagnosis journey, amyloid PET scan, APOE4, Leqembi/lecanemab, caregiving as a spouse, coping after diagnosis, living well with Alzheimer’s, advocacy and support.#Alzheimers #EarlyAlzheimers #Leqembi #Lecanemab #APOE4 #Dementia #BrainHealth #BeingPatient---- 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/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/