How early diagnosis of Alzheimer’s has helped one Connecticut family

CT Insider – Tuesday, April 29, 2025
By Cris Villalonga-Vivoni

George Carlino got into a car crash while driving one day but couldn’t remember how it happened. He left work early that day to see a neurologist and was driving down the highway when everything went black.

All he remembers next is being on the side of the road while the driver he hit yelled at him. Only later on did Carlino learn he fell asleep at the wheel and veered into another lane.

It was a minor crash– just a scratch along the car door, and no one was hurt – but he said it was one of the emerging signs of his early-onset Alzheimer’s disease. Still making the appointment, he was officially diagnosed that afternoon at 64 years old.

Since doctors caught the disease so early, Carlino was eligible to join a clinical trial for a new medication that helped significantly slow his cognitive decline over the last few years. He and his wife entirely attribute his well-being today to the early diagnosis.

“The earlier, the better,” the Milford man said. “I hope the people will really get checked out because that could be your death sentence for not doing what you should be doing and getting the help.”

More than 7 million people in the U.S. have Alzheimer’s disease, with prevalence and cost of care rising each year, according to the new Alzheimer’s Disease Facts and Figures report released by the Alzheimer’s Association. Deaths related to the disease have more than doubled over the last two decades.

In Connecticut, about 12% of adults over the age of 65 – or roughly 80,000 people – live with Alzheimer’s. The report also found that an estimated 130,000 people serve as their loved one’s primary caregivers, providing over 250 million hours in uncompensated care valued at $5.3 billion.

Despite the increase, there’s also more interest in getting an early diagnosis and accessing treatment with advanced pharmacological interventions, said Dr. Kristina Zdanys, associate psychiatry professor at UConn Health.

A study of more than 1,700 U.S. adults found that a majority would want to know if they had Alzheimer’s disease before showing symptoms and would accept a biomarker test if it was available. In addition, more than 9 in 10 want to take a medication that could slow the progression of the disease.

Options for medical interventions to slow Alzheimer’s were limited for years, said Zdanys, who is also chair of the medical and scientific advisory board for the Alzheimer’s Association Connecticut chapter. Since the late 1990s, she said providers have prescribed the same medications that help modestly slow the progression. Years of successful clinical trials and the FDA approval of two new treatments have opened new avenues for patients.

The new medications can only be administered in the early stages of Alzheimer’s disease to have a full impact, Zdanys said, driving the need for an early diagnosis. Medicare coverage also expanded in 2023 to include advanced diagnostic testing, making it more accessible than in years prior.

She said having access to early diagnosis and new medications allows patients, their families, and caregivers more time to plan for the future and develop habits that improve their quality of life for longer.

However, federal funding is at risk, like many other medical research endeavors operating under the new Trump administration. Zdanys said the National Institutes of Health halted funds for 14 out of 35 Alzheimer’s disease research centers while others are waiting for grant renewals.

“Treatments have evolved drastically in the past five years compared to the decades before, and advancing public policy is certainly a priority,” she said. “I consider them to really be a public health emergency at this point.”

Carlino’s wife of 27 years, Sandra, said her biggest fear was watching her husband go through the same cognitive decline her father did 30 years ago – diagnosed at 60 years old and dead by 65. She said her father didn’t fully recognize her within months of his diagnosis.

“Thank God that this is completely different because I was not prepared to go through that again,” she said, fully attributing her husband’s progress to the early diagnosis and access to clinical trials.

A former machine operator in the aerospace field, George Carlino said transitioning to his new normal after the Alzheimer’s diagnosis was challenging. He would spend his days sitting in the house, watching TV, and being unable to go out on his own, especially at first, but things changed once he accessed the clinical trials.

The neurologist who diagnosed George Carlino’s Alzheimer’s also recommended the clinical trial options, enrolling in two over the years. He embraced the possibilities, knowing participating could ultimately help him and others.

“I do want to help people out; to make sure that what I have that they have,” he said. “We’re in this together. It’s not going to go away.”

The first clinical trial helped address some of the confusion and agitation he’d feel in the late afternoon and early evening, also known as sundowning, but had not much else, Sandra Carlino said.

But, in May of 2021, he joined a double-blind trial hosted by Eli Lilly and Co. for Kisunla injection, a new drug that helps treat early symptoms of Alzheimer’s. Carlino said they saw immediate changes in his behavior and cognition, with his last infusion in July 2024.

Sandra Carlino said, for example, that her husband can verbalize when he’s “starting to go down the rabbit hole” in his mind. He’s built a routine to help him curb it, like taking a shower, a nap or walking.

The Food and Drug Administration officially approved the Kisunla treatment in July 2024 after the clinical trials showed significant reductions in clinical and cognitive decline.

Although it can still be hard, the Carlinos said they’ve found alternatives and activities to fill their days, like weekly bowling nights and visits to an Alzheimer’s support group. Instead of driving his car, George Carlino started driving a golf cart in his neighborhood to keep some of his independence.

“Almost seven years later and doing pretty good, not really progressing much at all, if at all, is a miracle,” Sandra Carlino said.

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