People With Alzheimer’s and Their Loved Ones on the Moments That Led to Diagnosis

Early-onset Alzheimer's disease or young-onset Alzheimer's affects people under the age of 65. For most, symptoms can show up as early as 45 years of age. Such signs may include memory loss (trouble recalling names or recent events), changes in personality, trouble with balance, and difficulty completing simple tasks. In some cases, the early signs may be unexpected.

Hear from eight people who live with or love someone with early-onset Alzheimer’s and some of the earliest signs they noticed.

"The earliest signs weren't dramatic — they were subtle. Anthony began forgetting conversations, struggling to find simple words, and losing confidence in tasks he had mastered his entire career. At first, we questioned stress or aging. Looking back, those quiet changes were Alzheimer's introducing itself into our lives. When Anthony was diagnosed, I thought the hardest day was hearing the words 'younger-onset Alzheimer's.' I was wrong. The hardest part has been the thousands of decisions that followed — when he should stop working, when he should stop driving, when he could no longer stay home alone, when travel ended, and now making the decision to leave the dream home we built for our future. Alzheimer's doesn't just change one day. It changes every day after that." 

– Karen Lynne Sandone, 59, Doylestown, Pennsylvania

“Three years into this disease, Alzheimer's has become a series of heartbreaking decisions. We've had to say goodbye to careers, independence, driving, travel, and now even the dream home we built for our retirement. Every decision has been made not because we wanted to, but because this disease left us no choice. Alzheimer's doesn't just steal memories — it steals the future you thought you were going to have." 

– Anthony Joseph Sandone, Jr., 58, Doylestown, Pennsylvania

“The first signs I noticed were when my mom wasn’t able to answer Jeopardy questions. She was the “Jeopardy Queen” and had the memory of an elephant. She started missing questions she used to know in a heartbeat. She also forgot how to make many of her favorite recipes — including her world-famous pound cake. Finally, she went from very stylish to wearing the same clothes each day and sometimes shirts buttoned in the wrong hole." 

– Daneille Knox, 59, Orlando, Florida

“Looking back, the earliest signs were not the obvious red flags that most might expect, but rather the subtle 'pink flags' that often go unnoticed. For instance, simple word substitutions, misidentifying familiar objects, and participating in social conversations by agreeing rather than contributing made me take note. My research and experience with prior loved ones armed me with a different lens of discernment. While most signs could be dismissed as stress or aging, the short-term memory lapses, paper clutter from task overwhelm, and duplicate phone calls painted another picture. Recognizing these small shifts gave me the nudge to prepare for the long game accordingly, before the red flags appeared.” 

– Monica Cabbler, Roanoke, Virginia

“In my role at Habitat for Humanity International, I frequently spoke to large audiences. I first noticed cognitive changes when I began having trouble recalling precise technical language and industry-specific terminology, skills that had long been central to my career. I knew what I wanted to say, but I could no longer easily unlock the file cabinet in my memory that stored the financing concepts and housing innovation expertise I relied on every day. To compensate, I substituted simpler words when more descriptive, nuanced language eluded me. That strategy worked well enough in casual conversations, but it became increasingly apparent during professional presentations, meetings, and expert panel discussions.” 

– Steve Weir, 71, Atlanta, Georgia

 “My grandmother and mother both passed away from Alzheimer's disease, so I paid close attention to any changes in my own cognition. I first noticed symptoms in 2025 when I began having trouble finding the right words during conversations. Soon after, I experienced increasing short-term memory challenges and forgetfulness, particularly at work. I found myself relying on more reminders and notes just to keep up with routine tasks. My husband noticed the same changes at home, and together we realized it was time to seek answers from my doctor. Receiving an early diagnosis gave me the opportunity to understand what was happening, plan for the future, and focus on living this next chapter of my life with purpose.”  

– Mike Tumolo, 47, Jacksonville, Florida

“In June 2022, my husband and I were reviewing 3D renderings for a kitchen renovation. My husband, Ken, thought they looked fine. All I could see was a jumble of lines. I assumed we had hired a terrible contractor. Soon after, I began losing my organizational skills, struggled to follow familiar routines, and missed get-togethers with friends. It felt like gremlins had invaded my Google Calendar. I’d show up for appointments at the wrong time, in the wrong place, on the wrong date and, in one case, even in the wrong year. I’ve had many mortifying moments, but laughing at my mishaps helps me accept myself as I am and maintain my dignity, even in my most undignified moments.” 

– Christy Scatarella, 67, Portland, Oregon

“In 2021, I began struggling at work after starting a new job. Tasks that had once come naturally were no longer intuitive, and I found it increasingly difficult to retain information and adapt to new responsibilities. At first, I assumed the changes were due to stress, but as similar challenges followed me from one job to the next, I realized something more serious might be happening. After four years of appointments, tests, diagnosis (depression, OCD) and evaluations, I was finally diagnosed in 2025. Having an answer was difficult, but it also brought clarity and allowed me to begin planning for the future.”  

– James Smith, 58, Oakland, Maryland