“My mom was the best mom.”
That's how Mallory Martinez describes her mom, Patti Pfiester, to anyone she meets.
“She was my person. If I needed advice about anything, I could talk to her,” said Martinez. “She was just a constant in my life.”
However, Martinez and her family started to notice some changes in their constant. “It certainly progressed, it became more noticeable,” said Martinez.
A few examples she recalls are her mom going to run an errand and getting lost in town. Or going to the grocery store and forgetting once she was home that she had a trunk full of groceries.
Pfiester and her family decided the bouts of forgetfulness were something they should get checked out. Martinez, at the time in her mid-20s, took her mom, who was in her mid-50s, to her first appointment.
“It was just me and my mom," she said. "They told me that she had Alzheimer’s. It completely felt like the rug had been pulled out from under me. I really thought that was just an old person’s disease, I could not believe that someone of her age could have Alzheimer’s.”
Alzheimer’s disease is an irreversible, progressive brain disorder affecting more than 6.5 million Americans that slowly destroys memory and thinking skills. While the specific causes of Alzheimer’s are not fully known, it is characterized by changes in the brain like amyloid beta plaques or tau tangles. These changes affect a person’s ability to remember and think.
Alzheimer’s disease changes people. Martinez’s mom was no exception.
“It completely changed her personality. She was so kind and so happy. She had the loveliest smile. She never met a stranger,” said Martinez. “But as the disease progressed, she became angry. She was just generally unhappy. She would cry, and there was nothing that you could do to make her feel better.”
Martinez says as she and her family walked along this unexpected path with their mom, the University of Kentucky’s Sanders-Brown Center on Aging was with them every step of the way.
“It is a really special place,” said Martinez. “We are lucky to have Sanders-Brown right here in Lexington.”
Throughout its four decades of existence, Sanders-Brown has built an international reputation for best-in-class research into a disease that kills more people every year than breast and prostate cancer combined. At the same time, they have brought understanding of dementia home to Kentucky, arming thousands with the tools and information they need to age gracefully.
“At Sanders-Brown, we talk about Alzheimer’s disease from the point of view of research, from the point of view of the clinic, from outreach and education,” said Linda Van Eldik, PhD, Sanders-Brown director and Dr. E. Vernon Smith and Eloise C. Smith Alzheimer's Research Endowed Chair.
As the U.S. population ages, so too will the number and proportion of Americans with Alzheimer’s or other dementias. By 2050, the number of people age 65 and older with Alzheimer’s may grow to a projected 12.7 million, unless we see the development of medical breakthroughs to prevent or cure Alzheimer’s disease.
“But this disease really has a personal face. It is devastating because you’re essentially losing your soul when you get dementia,” said Van Eldik. “When I see the faces of individuals that we are helping, it really touches my soul and makes me want to do as much as I can in my research to try to prevent this from happening to anyone else.”
Researchers at Sanders-Brown are hopeful they will see a cure and for some it is personal. For Chris Norris, PhD, professor in the UK College of Medicine’s Department of Pharmacology and Nutritional Sciences, and an associate director at SBCoA, his work in this field became personal a few years ago when his mother was diagnosed with vascular dementia.
“Over a period of four or five years, I’ve watched her go from being my mother, to really seeing nothing behind her eyes," he said. "That is something that can cause you to lose hope. But I’m very lucky to work in a world class center, it is the greatest place on the planet to study dementia.”
As the world looks to them for answers to the mysteries of dementia and the elderly rely on Sanders-Brown for help charting their path, the team finds motivation in the stories of those they are helping and remain committed to the ultimate goal.
“At the pace of the discoveries we are making here at Sanders-Brown, I think we will be able to have ways to delay the onset. It has been estimated that if you delay the onset of dementia by just five years you would cut the incidence in half,” said Van Eldik. “So my hope is that we will come up with that effective intervention.”
Progressing toward achieving that goal requires a great deal of collaboration and partnerships. That is seen through the focus of the center being on both basic and applied research in Alzheimer's disease and related neurodegenerative disorders. It is seen at the Sanders-Brown Memory Clinic where the research intersects with patient care, and it is seen through community support and philanthropic support.
“Philanthropic gifts enabled us to obtain a multi-photon microscope,” said Norris. The microscope allows Norris and other researchers to look into the brain of an intact, living animal. “It lets you look at nuances of how the brain functions and how it can break down with diseases like Alzheimer’s disease. With this new technology, we have capabilities at Sanders-Brown that we have never had before.”
The high-tech camera has allowed the center to attract more than $35 million in grant money from the National Institutes of Health (NIH). “The technology we have now has the potential to revolutionize what we know and what we understand about the pathophysiology of Alzheimer’s disease,” said Norris. “When I come to work every day I don’t see despair. I see hope. I see hope in my lab. I see hope in my colleagues.”
Hope for a cure to save others from the same pain she experienced is why Mallory Martinez shares her story. Patti Pfiester passed away in February of 2020.
“You lose somebody twice when they have Alzheimer’s. You lose them pretty much when they lose their personality, she wasn’t my mom anymore. Then you lose them again when they pass,” said Martinez. “After my mom passed, there was so much silence. After years of wishing for silence and wishing for her to just be happy … then you get the silence. That was difficult.”
Martinez says it brings a mixture of emotions. Relief their loved one was no longer suffering, however the feeling of wanting to take care of her for the rest of their lives if it meant having her here with them.
“My first child was born shortly after my mom passed. I like to think that there will one day be a world without Alzheimer’s, that it is not even in my children’s vocabulary,” said Martinez.
She says she knows that her mom would be proud that she along with her brother, dad, and other loved ones are taking their pain and throwing it into something that can help many people.
Van Eldik, Norris, and their colleagues have the same hope — a future without Alzheimer’s disease. “I think that when a cure or treatment for Alzheimer’s disease is developed Sanders-Brown is going to be playing a role,” said Norris.
Just this summer, Sanders-Brown was on the forefront of work surrounding the first disease-modifying therapy in U.S. approved to treat Alzheimer’s. On July 6, 2023, the U.S. Food and Drug Administration (FDA) granted full approval to lecanemab, marketed as Leqembi, for the treatment of Alzheimer’s disease. Sanders-Brown has been working with this drug and others like it for more than a decade.
“We will come up with ways to prevent it or delay it, so it won’t be a problem," said Van Eldik. "Sanders-Brown is going to be there, we are going to be leading the charge.”