We invite you to step into Nancy's shoes and join in her bravery in the fight against early-onset Alzheimer's as UC Health's first Lecanemab patient. A story of hope, advanced care, and her determination to maintain life's joys with the support of her care partner and a team of specialists.
Nancy began forgetting small things. And then, it became more frequent.
“Some things just weren’t as they had been, and we started to realize that it was more and more,” Nancy recalls.
She was keeping lists of reminders and tasks, and then with a laugh said, “But sometimes I lose the lists.”
Alzheimer's disease, a common form of dementia, primarily affects older people and is marked by progressive memory loss and cognitive decline. Symptoms range from mild forgetfulness to severe memory loss and global functional impairment in advanced stages. Early diagnosis is crucial for managing the disease, involving evaluations by healthcare professionals and often noticed first by family members.
Nancy's story is a poignant example highlighting the journey from the first signs of memory loss to an early diagnosis. The initial symptoms gradually evolved. This prompted Nancy and Opal to seek a diagnosis, understanding the importance of early detection in managing Alzheimer's disease.
“It’s been a couple of years journey to get here,” adds Opal, Nancy’s care partner.
After a series of falls, a bout with COVID-19, and ongoing memory challenges, Nancy and Opal knew it was time to act. Together, they created a diverse team comprised of multiple healthcare professionals across the region. They see the same benefit that we see at UC Health when it comes to academic medicine – it’s important to have diverse perspectives that contribute to the best healthcare and treatment decisions.
Coming to the UC Gardner Neuroscience Institute was serendipitous, however. Opal began her own healthcare professional journey with UC Health, years ago, as a physical therapist and knew firsthand the care and expertise Nancy would receive when she ultimately received her Alzheimer’s disease diagnosis.
“We know this is a great research center, and that’s one of the reasons we chose to come here,” Opal said.
As the region’s only academic health system, UC Health is a leader in developing a deep understanding of diseases to develop the treatments of tomorrow. For example, the UC Memory Care and Brain Health has partnered with Cognetivity Neurosciences to implement CognICATM, an AI-powered digital tool for use by primary care and other specialty providers to rapidly screen patients who may be at risk for cognitive impairment.
Patients who screen positive are referred to the UC Gardner Neuroscience Institute’s Memory Disorders Center and geriatricians in the health system’s primary care network for further evaluation and diagnosis. This allows detection and treatment to take place as early as possible when it is most effective. CognICATM is one of the tools used by UC Health to identify patients eligible for Lecanemab and easily monitor for changes over time.
Nancy is the first patient at UC Health to receive Lecanemab, a new infusion treatment to help patients in the earliest, symptomatic stages of Alzheimer’s disease. Lecanemab was designed to bind protofibrils, a pre-plaque form of amyloid, believed to be more toxic. While not a cure, Lecanemab’s potential to improve quality of life is a significant advancement in Alzheimer's care. Lecanemab is a disease-modifying treatment that can preserve cognitive function and independence, helping patients with early-stage Alzheimer's disease potentially maintain a higher quality of life. It delays the transition between disease stages and the onset of new symptoms and can be taken alongside other Alzheimer’s disease medications.
“I’m willing to try anything. I know I won’t get my brain back, but I’ve got to stop this where it is…I want to keep from getting worse and worse,” Nancy said.
“We know this is a commitment. We’re aware of the risks and the things we need to watch. But she’s willing to do this to help herself and others,” Opal adds.
Our team of fellowship-trained subspecialists provides the highest level of multidisciplinary care for Alzheimer’s disease and other memory disorders. We are proud to see about 3,800 patients each year, including more than 600 patients with Alzheimer’s disease, and participate in the Alzheimer’s Network for Treatment and Diagnostics (ALZ-NET).
UC Health is at the forefront of Alzheimer's research, actively participating in clinical trials and contributing to the global understanding of this disease. Our involvement in the Alzheimer's Network for Treatment and Diagnostics (ALZ-NET) and collaborations with institutions like the National Institute on Aging, the Alzheimer's Society, and the Mayo Clinic, underscore our commitment to advancing Alzheimer's disease research. For the hundreds of patients treated at UC Health every year for Alzheimer’s disease, each has their own treatment goals and dreams.
For Nancy, it’s about continuing to do and remember the things she loves.
“I want to still be able to drive. And remember names and birthdays. I love working in the garden and watching birds. We have a group of five women. We call ourselves “The Divas”. We go out to dinner and celebrate birthdays…And I go to Pilates on Wednesdays…I don’t want to lose those kinds of things.”
With Nancy’s determination and Opal’s steadfast support paired with the leadership and expertise of their care team, we are reimagining her future together.
Ongoing research, including clinical trials for treatments like Lecanemab, is essential in the fight against Alzheimer's. Collaborations among research centers, national institutes, and Alzheimer's associations are key to this effort. Support for patients and caregivers, including resources for dementia care, is also a critical component of comprehensive Alzheimer's management.
