They call it the long goodbye. I understand why, and I've used the phrase myself. But it's gentler than the thing it describes. A goodbye is something you get to say — to someone who knows you're saying it.

Alzheimer's takes the saying first.

My stepmother Sandy died last week. She was eighty. Her mother, Grandma Roberts, lived to ninety-eight — I remember her in her seventies, back from trips overseas, handing twelve-year-old me gold lamé lipstick holders I had absolutely no use for. She was the life of the party.

Twenty years. That's what this disease took off the end of a life that came from people who live to a hundred.

I'm going to tell you about Sandy, and then I'm going to tell you why I think what happened to her is now a policy decision rather than a medical inevitability. Those two things are more connected than they sound.

Forty years

Sandy spent forty years at the Colorado Hospital Association. She was Director of Education and Member Services. She was good at it and she did not want to leave.

She started forgetting things at fifty-eight. They began taking her responsibilities away, one at a time, until there was nothing left to take. She wasn't ready to retire. Her brain retired without her.

Nobody tested her. There was no test to give.

I want to say that carefully, because I'm not interested in blaming anyone. Confirming Alzheimer's in the early-2000s meant a spinal tap or a PET scan, and no primary care doctor sends a fifty-eight-year-old for either one on a hunch. One researcher did image her brain around 2007, with a new scan that was supposed to catch this early. It came back negative. My dad and I looked at each other even then and said: that test is going nowhere. It didn't.

So she got told it was stress. It was age. It was a lot on her plate.

What happened to Sandy was a limitation of her era. What happens to the next fifty-eight-year-old is a decision.

The two gaps

There are actually two failures stacked on top of each other here, and people conflate them.

The first is biological. Alzheimer's begins in the brain long before anyone notices anything. Research published in the New England Journal of Medicine found that neuropathologic and biomarker changes begin fifteen to twenty years before the first clinical symptom. Earlier work from the DIAN study — the international network studying inherited Alzheimer's — put the disease process at more than twenty years before clinical onset.

Two decades of disease running silently in someone who feels completely fine. Nobody experiences that gap. You can't. That's what makes it a gap.

The second is the one I lived. And my dad lived. And anyone who has ever loved someone with early-onset Alzheimer's has lived.

That's the stretch where the symptoms are plainly, obviously there — and still nobody says the word. Where a woman loses a job she's held for four decades and gets told she's stressed. The years go by, the window closes, and by the time anyone puts a name to it, the name doesn't help anymore.

Sandy was never inside the window. There wasn't a window. There was a wall.

What's on the other side of that wall

I did not bring Sandy into my home. I couldn't.

I had two young children. My mother-in-law was already living with us. My dad was recovering from a broken leg. There were stairs. I did not have the house and I did not have the hours.

I say that publicly because I think a lot of adult children are carrying guilt they shouldn't be carrying alone. More than twelve million Americans are unpaid caregivers for someone with Alzheimer's or another dementia. Last year they provided an estimated 19.6 billion hours of care, valued by the Alzheimer's Association at $446.3 billion. That's not a gap in the American dementia care system. That is the American dementia care system.

And dementia caregiving is not like other caregiving, though we keep pretending it is. If you're caring for someone through surgery or chemotherapy, the person is still there. With this, at some point they stop being there. They stop knowing you. Sandy went through stretches where she'd tell me flatly that my dad had left her for another woman. He hadn't — he was her husband until the day he died. You cannot argue with Alzheimer's. You can't correct the record. You pat their hand, agree that it sounds hard, go out to your car, and cry.

Then March 2020 came, and I had to place my parents the day the country shut down.

I don't think we've ever reckoned with what COVID did to people living with dementia. Everyone else in America was afraid — we understood why we were isolated. We had a reason. People living with Alzheimer's got none of that. You could explain the virus to Sandy and thirty seconds later it was gone. There was no fear, because fear requires holding a threat in your head. There was no patience, because patience requires believing the thing will end.

There was just: my family stopped coming. Fresh every morning, with no explanation that stuck.

When they finally opened things a crack, they put a sheet of plastic outside and gave us a karaoke microphone to pass back and forth. My son James eventually just walked around the plastic and sat down next to her. Mom, I just want to sit by Nanny. He was right. It was ludicrous. That facility was doing its best inside rules written by people who had clearly never sat across a sheet of plastic from someone with dementia — which is what happens when we write policy for the average patient and forget there is a person behind every patient.

The test exists now

Here's the part that should be good news, and it is, and then it isn't.

The FDA has cleared blood-based tests that detect the biological markers of Alzheimer's — the Lumipulse pTau217 amyloid ratio test and the Elecsys pTau181 test — for adults fifty-five and older. A blood draw. The same tube they already fill at your annual physical.

Everything Sandy didn't have — the spinal tap, the PET scan, the specialist referral, the wall — collapsed into one vial.

Somebody spent twenty years and a great deal of money figuring that out. That is a genuine achievement, and I will defend that kind of innovation every time. It arrived too late for Sandy. It has not arrived too late for the fifty-eight-year-old sitting in a doctor's office this afternoon telling herself it's just stress.

But I'm not going to oversell it, because this is where well-meaning advocacy gets sloppy.

A test is not a treatment. The therapies approved for Alzheimer's are indicated for early symptomatic disease — mild cognitive impairment due to Alzheimer's, or mild Alzheimer's dementia, with amyloid pathology confirmed. Qualifying also requires genetic testing to assess the risk of a specific brain-swelling side effect, a baseline MRI, and screening for medications, including common blood thinners, that rule people out. It's a real workup, not a vending machine.

Which means the gate is not your age. The gate is your stage.

And that is exactly why Sandy's story is the argument. At fifty-eight, forgetting things at a job she'd done for forty years, with her duties being pulled — that is mild cognitive impairment. That is the treatable stage. The trials for these therapies enrolled people from around fifty on up. She was young for it, not old for it.

She didn't miss the treatment because she was too old, or too young, or the wrong kind of patient. She missed it because the innovation hadn't arrived yet.

Cleared, and not covered

Medicare does not cover these blood tests as screening. Commercial insurance is under no requirement to cover them at all.

Sandy was fifty-eight. She wasn't on Medicare — she was on her employer's plan at the hospital association. So even in a world where these tests had existed for her, coverage wouldn't have reached her.

Think about who that leaves out. The people most likely to be in the early, treatable stage — working-age adults in their fifties and early sixties, with the most life left to protect — are the people with the least coverage for finding out. We built a detection tool for a twenty-year window and made it available almost exclusively to people who are already past it.

As many as half of those living with this disease, or on their way to it, have never been diagnosed. Not because we can't find them. Because nobody is looking, and nobody is paying to look.

The science is done. What stands between that fifty-eight-year-old and an answer is not a laboratory. It's a coverage decision.

Two bills, one bridge

Two bipartisan bills go after the two halves of this.

The ASAP Act — the Alzheimer's Screening and Prevention Act, H.R. 6130 and S. 3267 — creates a Medicare coverage pathway for FDA-approved blood biomarker screening. It has 181 sponsors in the House (112 Democrats, 68 Republicans, one independent) and 47 in the Senate (24 Democrats, 23 Republicans). That's 228 members of Congress — roughly two out of every five people in that building.

Both chambers referred it to committee in November. It hasn't moved since.

So the next time someone tells you Washington can't agree on anything: this is a thing Washington agrees on. Nearly half of Congress agrees on it. It still isn't law.

The Alzheimer's Early Detection Act — H.R. 9823, introduced in July — would require commercial health plans and Medicaid to cover biomarker testing for adults over fifty. Pre-Medicare. Inside the window.

That's the Sandy bill. Together they close the gap. One without the other is half a bridge.

What deciding would look like

Between 2000 and 2024, deaths from stroke went down. Heart disease, down. HIV, down. That isn't luck — that's what happens when a country decides something matters and puts thirty years of money, research and public attention behind it.

Over that same period, Alzheimer's deaths rose 134 percent.

Seven million Americans are living with this disease today; by 2050, nearly thirteen million. This year it will cost the country $409 billion in health care, long-term care and hospice — approaching a trillion by 2050. And that figure doesn't include a single hour of unpaid family caregiving, which is counted separately and came to $446.3 billion. The unpaid work families do is worth more than the entire paid care system. Roughly seventy percent of what this disease costs is carried by families.

We are paying for Alzheimer's on the back end, in nursing homes and emergency rooms and lost wages, instead of on the front end, in labs and blood draws.

And there's the part that's yours

Two out of three Americans say they want brain health guidance from their doctor. Only fourteen percent have ever brought it up.

Bring it up. At your next physical, ask about cognitive screening and biomarker testing — whether you qualify, what it costs, what your plan covers. If there's family history in your house, say it out loud in the exam room. If something feels off and you've been telling yourself it's stress or age or a lot on your plate, get it checked.

You may not like the answer. But you cannot act on information you refused to go get. That's what I mean when I say be the CEO of your own healthcare — not that you should have to fight this hard, but that until the system changes, the person most likely to catch this in time is you.

Sandy had forty years at a job she loved and twenty years stolen off the end of a life that should have run to a hundred. When she died, her goddaughter Gennifre said there would be at least a thousand cats waiting for her at the pearly gates.

At least a thousand. Gennifre's probably low.

[Full Transcript]

The State of the Patient Podcast is produced by Patients Rising. New episodes every other Tuesday. Follow the show on Apple Podcasts, Spotify, YouTube, and wherever you listen.

Note: the blood-based diagnostics discussed in this episode are FDA-cleared for adults 55 and older. The treatments referenced are approved for early symptomatic Alzheimer's disease with confirmed amyloid pathology, and eligibility is determined by disease stage, not by age.