Chad Fink had driven to his grandson's soccer games at the same field, every spring and every fall, for years. One Saturday morning he asked his wife Jenn which exit to take.
She thought it was strange, and filed it away. Then came a missed mortgage payment and a missed car payment, from the man who had handled the family finances for their entire marriage. When they went to a neurologist, Chad said out loud that he thought he might have dementia. He was fifty-one. They were told he was too young, and sent home.
A year went by. His gait slowed. More payments were missed. A second evaluation came back with a possible diagnosis, and in February of 2025 a PET scan confirmed it: younger-onset Alzheimer's disease, at fifty-two.
At the State of the Patient Summit on Capitol Hill, Jenn and Chad told that story in a Senate hearing room. Then they told the rest of it, which is the part that rarely gets said in public.
First the driving. A follow-up evaluation found severe decline in visual processing and spatial awareness, and Chad lost his license. "That was probably the hardest blow," he said. "I still wish I could drive now, and part of me thinks I can, but I also know I can't."
Then the work. Chad went before anyone made him go, telling his boss it wasn't fair to the company that he was taking up a space. Then Jenn's work: she resigned from teaching, a job she loved, because she could not be present in a classroom while worrying about her husband at home.
And then the quieter loss that Jenn says people miss entirely. Chad is young and healthy-looking, so people assume he is fine. What they don't see is that the man who used to go around the office telling jokes now goes into his office in the morning and stays there.
Jenn put the household's numbers on the record, in front of a room of policy staff and advocates, because she decided somebody had to.
They live on five thousand dollars a month in long-term disability. The mortgage is roughly twenty-eight hundred. COBRA, after Chad's company moved them off the group plan, is thirteen hundred. That is forty-three hundred dollars gone before groceries, a car payment, insurance or gas — and then, as Jenn put it, you are in the credit card game, deciding which one to max out this month.
Shortly before the Summit, Chad was approved for Social Security disability, fast-tracked under a compassionate allowance, at forty-one hundred dollars a month. It does not add to what they have. It offsets it. The ceiling is five thousand dollars either way.
Jenn is a teacher, and going back to teaching would mean paying a stranger to sit with her husband all day, which costs roughly what teaching pays. Texas does not pay family members to do that work. So they are weighing whether to sell the house and move to Illinois, where Chad has family — away from the two adult daughters and the grandchildren who are the reason they live in Texas.
"He's not even to the hardest part yet," Jenn said. "So I can only imagine what's to come."
Four people followed the Finks on stage, and each answered a different piece of why their experience went the way it did.
Dr. Travis Wilkes, a family physician and Chief Medical Officer at Neurovision, pointed to the arithmetic of primary care: by one study he cites, doing the job properly with a normal patient panel would take more than twenty-six hours a day. A subtle complaint from someone in their early fifties is exactly what gets lost. His answer is to make cognitive care a one-click referral, the way a knee injury goes to physical therapy.
Jim Taylor, who co-founded Voices of Alzheimer's after his late wife Geri was diagnosed in 2012, described that year as the dark ages — no blood test, no covered scans, and no treatment. Today there is a five-minute cognitive assessment on a tablet, a blood test, and disease-modifying treatment. He calls it going from despair to hope.
Deanna Darlington, who founded Links2Equity and co-founded AlzInColor, noted that by 2030 roughly forty percent of Americans living with Alzheimer's will be Black or Latino, and that those communities are diagnosed later across almost every disease. She also pointed to research suggesting the disease begins ten to twenty years before anyone notices a memory problem, which means nearly every conversation about it is happening late by design.
And filmmaker Christopher Durrance, whose documentary Caregiving received our Caregiving Impact Award at the Summit, described the assumption underneath all of it: that families will step up and absorb the cost. Most do. Many put their own health at risk doing it, and some die before the person they are caring for.
The ASAP Act would get blood-based biomarker screening covered under Medicare. Coverage is necessary, but as Dr. Wilkes pointed out, clinical habits don't change the day a billing code does — and Deanna Darlington argued that coverage without community education reaches the same people it always reaches first.
The BRIDGE Act is the one the Finks are living inside. People diagnosed with Alzheimer's before sixty-five face a five-month wait for Social Security disability and a twenty-four-month wait for Medicare. Twenty-nine months. Treatments that work best in the early stage are out of reach during almost all of it. Congress has made this exception before: twenty years ago it exempted ALS from the same wait on humanitarian grounds, because the disease moves too fast for the rule to make sense.
Asked what a two-year delay actually costs a family, Dr. Wilkes was blunt. "There is no acceptable delay."
Every barrier in this story is one somebody built. The twenty-nine-month wait is a rule. The five-thousand-dollar ceiling is a formula. Whether a state pays a family member for full-time care is a decision legislatures make one at a time, and they have not made it the same way. None of that is the disease, and the disease is hard enough on its own.
[Full Transcript] [Terry's Substack Post]
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