Cold open

Terry: They call Alzheimer's the long goodbye. But a goodbye is something you get to say.

Terry: My stepmother's number was forty. Forty years at the same job. She wasn't ready to retire. Her brain retired without her.

Terry: Nobody tested her. There wasn't a test to give.

Terry: There is one now. Most people still can't get it.

Welcome

Terry: Hi, I'm Terry Wilcox, and this is the State of the Patient.

Every patient has a number nobody warned them about. A denial letter. A copay. A bill that shouldn't exist.

My stepmother's number was forty.

Forty years at the same job, the Colorado Hospital Association. She was Director of Education and Member Services. She was good at her job. She did not want to leave it.

She left it anyway, because she started forgetting things, and they started taking responsibilities away from her, and eventually there was nothing left to take. She wasn't ready to retire. Her brain retired without her.

Nobody tested her. There wasn't a test to give.

Her name was Sandy. She died last week. And there is a blood test on the market right now that might have found what was happening to her twenty years before it took her job — except most people still can't get one.

This episode is a little different from what we usually do here. It's personal. But it goes somewhere specific, and I'd ask you to stay with me until it gets there.

A thousand cats

Terry: I want to tell you about Sandy, but I want to be careful, because I know what happens when someone talks about a person they lost.

Every one of us has amazing loved ones. We all think ours were the funniest, the kindest, the ones who made a room better. I think that about Sandy, and you'd be right to say — sure, Terry, of course you do.

So I'll keep it short.

She was glass-half-full in a way that should have been annoying and somehow never was. She was always laughing. She had cat things all over her house, which was funny, because early on she'd told us all she was absolutely not going to become the crazy cat lady. She was always ready to hug you, listen to you, help you sort out whatever mess you'd made — and she didn't always have the answer, but she always wanted to sit there with you until you found it. There was usually chocolate cake involved. Later on, a glass of wine.

She showed cats. Himalayans, beautiful ones. She took them all over the country and once as far as Russia. Pixie, Luke, Leia, Yoda.

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.

But that's not what I'm here to talk about.

I'm here to talk about Alzheimer's disease, and I'm going to talk about Sandy's specifically, because the shape of what happened to her is the shape of what's happening to millions of families right now.

I want to be careful how I say this. I can't tell you her Alzheimer's was preventable. Nobody can prevent this disease yet. And most of what went wrong for her went wrong because the tools didn't exist — not because anyone made a bad call.

But almost every one of those tools exists now. That's the whole difference. What happened to Sandy was a limitation. What happens to the next fifty-eight-year-old is a decision.

Here's the first fact I want on the table. Sandy's mother — Grandma Roberts — lived to ninety-eight. I remember her in her seventies, coming 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.

Sandy died at eighty.

This disease didn't just kill my stepmother. It took twenty years off a woman who came from people who live to a hundred. It took the last two decades of her working life, her travel, her cats, and any chance of her knowing her grandchildren as they grew up.

Twenty years. Remember that number too.

People call this 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.

The two gaps

Terry: Here's where I want to get precise, because there are actually two different failures stacked on top of each other, and people conflate them.

The first gap is biological.

Alzheimer's disease starts in the brain long before anyone notices anything. Research published in the New England Journal of Medicine found that the neurological changes and biomarker changes begin fifteen to twenty years before the first clinical symptom. Earlier work out of the DIAN study — that's the international network studying inherited Alzheimer's — put it at more than twenty years.

Two decades of disease, running silently, in a person who feels completely fine. Who's working. Raising kids. Planning a retirement she's going to lose.

Nobody experiences that gap. You can't. That's what makes it a gap.

The second gap 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 absolutely, obviously there — and still nobody says the word.

Sandy was forgetting things at work. Her employer of forty years noticed enough to start pulling her duties. Her family noticed. She noticed.

And the machinery that's supposed to catch this did not engage. Not because we were stupid or in denial, but because in that era there was no simple, accessible test to hand a fifty-eight-year-old who says something feels off. Confirming Alzheimer's meant a spinal tap or a PET scan — expensive, invasive, not something a primary care doctor orders on a hunch.

So you get told it's stress. It's menopause. It's normal aging. It's a lot on your plate right now.

We did have one researcher take a picture of her brain, somewhere around 2007, with a new imaging test that was supposed to catch Alzheimer's early. Sandy took it. It came back negative. My dad and I looked at each other even then and said, that test is going nowhere. And it hasn't.

And the years go by, and the window closes, and by the time anyone puts a name to it, the name doesn't help anymore.

Those two gaps are why early detection is the entire ballgame. Because everything we have — every treatment, every financial plan, every legal document, every honest conversation with your family about what you want — every single one of those things only works if you are inside the window.

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

The twelve million

Terry: Let me tell you what happens on the other side of that wall, because this is the part of Alzheimer's policy that gets treated as a footnote, and it is not a footnote. It's the whole load-bearing structure.

More than twelve million Americans are unpaid caregivers for someone with Alzheimer's or another dementia. Last year, they provided an estimated nineteen point six billion hours of care.

Nineteen point six billion hours. The Alzheimer's Association puts the value of that labor at four hundred forty-six billion dollars a year.

Unpaid. Absorbed entirely by families. That is not a gap in the American dementia care system — that is the American dementia care system.

And I want to say something about dementia caregiving specifically, because it is not like other caregiving and we keep pretending it is.

If you're caring for someone through surgery or through chemotherapy, it's brutal, but the person is still there. They know you. You're in it together.

With this, at some point the person stops being there. They stop knowing you. They may accuse you of things that never happened.

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. And the thing about Alzheimer's is that you cannot argue with it. You can't correct the record. You can't produce evidence. You just pat them on the hand, agree that it sounds hard, go out to your car, and cry — because the person you love isn't in there, and she's still going to be not-in-there tomorrow.

She brought a date to my father's funeral. Her own husband's funeral. She was too far gone to know where she was, or who we were burying.

Now — here's the part where I have to be honest about my own limits, because I think a lot of adult children are carrying guilt they shouldn't be carrying alone.

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 was a miniature schnauzer that terrified Sandy. There were stairs. I did not have the house. I did not have the hours.

And I would have taken everybody. As a kid I genuinely wanted my whole family to live on one cul-de-sac, and I still think community is one of the most beautiful things there is. But wanting it and being physically able to do it are two different things, and twelve million Americans are currently standing in that exact gap.

That's not a personal failing. That's a policy failure. We built a system that assumes a family member — almost always a woman — will simply absorb a five-year illness with no money, no training, and no relief. And then we act surprised when caregivers get sick themselves.

One more thing, and then I'll get to what we do about it. My parents waited too long to move near me. They came kicking and screaming, at seventy-three, when Sandy was already mostly gone.

So if you are of retirement age and you're listening to this: go be near your children. Please. Not because they don't love you — because they are working and raising kids and they physically cannot relocate their whole life to you when the emergency comes. And it will come as an emergency. It came as one for us.

Go early, while it's your choice and not a crisis.

The plastic

Terry: They arrived so late that I had to place them the day the country shut down.

I got a call three days out: if your parents aren't here by six o'clock, there is nowhere for them to go. That was the choice. Move them into assisted living immediately, sight mostly unseen, or have no placement at all.

I put Sandy in assisted living rather than memory care so she could keep a cat. Looking back, she probably needed memory care sooner than I admitted. But she was still her enough that it didn't feel right yet.

Then the doors closed for a very long time.

I want to talk about what COVID did to people with Alzheimer's, because I don't think this country has ever really reckoned with it.

Here's the thing nobody accounted for: you cannot explain a pandemic to someone with dementia.

Everyone else in America in 2020 was afraid. We understood why we were isolated. We had a reason to hold onto — a bad reason, a frightening reason, but 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 you to hold a threat in your head. There was no patience, because patience requires you to believe the thing will end.

There was just: my family stopped coming. Every day. For months. Fresh each morning, with no explanation that stuck.

That's not isolation. That's abandonment, experienced brand new every single day.

And when they finally opened things up a crack, what we got was this. They put a sheet of plastic outside. And they gave us a karaoke microphone. One microphone, which you passed back and forth to each other so you could hear through the plastic.

So I'd go behind the plastic. I'd unwrap the sandwich we were supposed to be having lunch together with. I'd hand her the microphone and walk her through turning it on, which was its own complicated procedure. Then I'd walk back around to my side, and she'd talk. And then she'd get confused and put the microphone down. Or forget to talk into it at all.

My son James finally just walked around the plastic and sat down next to her. He said, Mom, I just want to sit by Nanny. I don't want to talk into this dumb microphone.

He was right. It was ludicrous.

And I want to be fair — 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. But this is what happens when we write policy for the average patient and forget that there is a person behind every patient. Sandy declined faster in those months than she would have otherwise. I am certain of it. So is every family I've talked to since.

The test

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

The FDA has now cleared blood-based tests that detect the biological markers of Alzheimer's. The Lumipulse pTau217 amyloid ratio test. The Elecsys pTau181 test. Cleared 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 — all of it collapsed down into a blood draw.

Now I want to be careful here, because this is where a lot of well-meaning advocacy gets sloppy, and I'm not going to do that to you.

A blood test is not a treatment. And finding amyloid in someone who has no symptoms at all does not, today, make that person eligible for anything.

The treatments we have for Alzheimer's are approved for early symptomatic disease. That means mild cognitive impairment due to Alzheimer's, or mild Alzheimer's dementia. You have to have symptoms — but early ones. And you have to have the biology confirmed.

So the gate is not your age. The gate is your stage.

The stage

Terry: Let me walk you through what qualifying actually requires, because almost nobody says this out loud and every family deserves to know it.

You need to be in the early symptomatic stage — mild cognitive impairment or mild dementia. Not moderate. Not advanced.

You need confirmed amyloid pathology — that's a PET scan or a spinal fluid test, and increasingly a blood test to decide whether those are even worth ordering.

You need genetic testing beforehand, to understand your risk of a specific brain-swelling side effect.

You need a baseline MRI, and certain findings on it rule you out.

And certain medications rule you out, including common blood thinners.

That's a real workup. It's not a vending machine. And I'm telling you all of it because I want you to understand the actual shape of the thing we're fighting for.

Now put Sandy inside that.

At fifty-eight she was forgetting things at a job she'd done for nearly forty years. Her employer noticed enough to start pulling her duties. She noticed. We noticed.

That is mild cognitive impairment. That is the treatable stage. That is exactly, precisely the window these therapies are built for.

Her age was never the barrier — the trials for these drugs enrolled people from around fifty on up. She was young for it, not old for it.

What she didn't have was a test that worked. Not a test nobody ordered — a test that wasn't there yet. One experimental scan that told us nothing, and beyond that a spinal tap or a PET scan, which no primary care doctor sends a fifty-eight-year-old for on a hunch. So she got told it was stress, it was age, it was a lot on her plate. And by the time the word Alzheimer's got said out loud, she was years past the stage where any of this would have mattered.

Sandy 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.

And that is exactly why innovation matters — and why I will defend it on this show every single time. Somebody spent twenty years and a great deal of money figuring out how to find this disease in a tube of blood. That is a genuine achievement. 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.

So here's where I get impatient. We solved the hard part. The science is done. What's standing between that woman and an answer is not a laboratory — it's a coverage decision. And if a blood test is the only thing between her and a treatment that buys her more months at her job, more months in her own house, more months before her family becomes her care team — then cover the test. That math is not close.

Cleared, not covered

Terry: And here's the second thing that would have shut the door on her anyway.

She was fifty-eight. She wasn't on Medicare. She was on her employer's plan at the hospital association.

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

So 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, the ones with the most life left to protect — are the people with the least coverage for finding out.

We have an FDA-cleared blood test for the sixth-leading cause of death in this country. A disease that kills more Americans than breast cancer and prostate cancer combined. A disease whose death rate rose one hundred thirty-four percent between 2000 and 2024, while deaths from stroke and heart disease and HIV all fell.

And as many as half the people who have it have never been diagnosed. Not because we can't find them. Because nobody is looking, and nobody is paying to look.

The bills

Terry: There are two bills in Congress right now, and I want you to know both names, because separately each one leaves half these families out.

The ASAP Act — the Alzheimer's Screening and Prevention Act, House bill 6130, Senate bill 3267. It creates a Medicare coverage pathway for FDA-approved blood biomarker screening.

And let me give you the numbers on this one, because they are remarkable. In the House, a hundred and eighty-one members have signed on — a hundred and twelve Democrats, sixty-eight Republicans, one independent. In the Senate, forty-seven — twenty-four Democrats, twenty-three Republicans.

Add that up. Two hundred and twenty-eight members of Congress. Roughly two out of every five people in that building have put their name on this bill.

And it has not moved. It was introduced in November. It went to committee. It is still sitting in committee.

So the next time somebody 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 — House bill 9823, introduced this July. It goes after the other half: requiring commercial health plans and Medicaid to cover biomarker testing for adults over fifty. Pre-Medicare. The stage of life when you're still inside the window.

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

Now let me deal with the objection honestly, because it's coming and it deserves a straight answer.

Somebody is going to tell you that most people who get tested won't qualify for treatment anyway. And they're not making that up. Studies of real memory clinics find that only about eight percent of new patients, and about twenty percent of those already diagnosed with mild cognitive impairment or Alzheimer's, actually meet all the criteria.

Twenty percent. That's the honest number.

But look at what that argument is actually saying. It's saying: because four out of five people won't qualify, none of them should be allowed to find out.

I have never accepted that logic anywhere else in medicine and I'm not going to start here. We don't refuse to biopsy because most lumps are benign.

And here's what gets left out of that statistic entirely — the people who never even get counted, because they were never worked up. Sandy is in that group. She's not in the eighty percent who tried and didn't qualify. She's in the group that never got asked.

As I always say: people don't take medicine they don't need. They don't stay on medicine that doesn't work. They take what works and they stop what doesn't. Let doctors and patients sort out who qualifies.

But nobody qualifies for an early-stage treatment if nobody ever established that they were in the early stage.

The decision

Terry: Between 2000 and 2024, deaths from stroke went down. Heart disease, down. HIV, down.

That is not luck. That is 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 one hundred thirty-four percent.

Seven million Americans are living with Alzheimer's today. By 2050, nearly thirteen million.

This year, Alzheimer's and other dementias will cost this country four hundred nine billion dollars in health care, long-term care and hospice. By 2050, close to a trillion.

And that four hundred nine billion does not include a single hour of unpaid family caregiving. That gets counted separately. In 2025 it came to four hundred forty-six billion dollars.

So the unpaid work families do is worth more than the entire paid care system. Seventy percent of what this disease costs is carried by families — in unpaid labor and money out of their own pockets.

We are paying for this disease on the back end — in nursing homes, emergency rooms, lost wages, and all of that unpaid family labor — instead of on the front end, in labs and blood draws.

So here is what deciding would look like.

Cover the tests. Both bills. Both populations. Medicare and commercial and Medicaid. If we have a tool that sees this disease before it takes someone's career, use it.

Fund the research at a level that matches a trillion-dollar problem.

Recognize working-age diagnosis for what it is. If someone is diagnosed early enough and the disease is far enough along to end their career, the disability system should meet them there without a two-year fight. Sandy shouldn't have had to lose that job the way she lost it.

Support caregivers as the workforce they are. Respite care. Tax relief. Paid leave written for a five-year illness, not a five-day one.

And write the emergency rules better next time. Whatever the next crisis is, someone in the room needs to be asking what this does to the person who cannot remember why the door is locked.

What you can do

Terry: And there's the part that's yours.

I want to be careful here, because this is where these conversations usually go sideways.

We do know more than we used to. The Lancet Commission — the standing international panel on this — concluded in 2024 that around forty-five percent of dementia cases could potentially be prevented or delayed by addressing fourteen modifiable risk factors across a lifetime.

Big number. Let me be honest about what it means and what it doesn't.

It's a population estimate, not a promise to any one person. Do I think someone genetically predisposed to Alzheimer's escapes it because they did the crossword every morning? No. I don't. And I am not going to stand here and suggest anybody's mother got this disease because she didn't do enough sudoku. That's cruel and it isn't true.

But look at the actual list.

Hearing loss. Untreated vision loss. High cholesterol. High blood pressure. Diabetes. Depression. Head injury. Physical inactivity. Smoking. Heavy drinking. Social isolation. Education. Air pollution.

Read that as a healthcare person. That is not a list of character flaws. Most of that is a list of things you need a doctor for — and several of them are things this country has made genuinely hard to get. Hearing aids. Vision care. Ongoing management of blood pressure and cholesterol and blood sugar. Treatment for depression.

Those are coverage fights. Every one of them.

So when people talk about personal responsibility and access to care like they're opposing teams — on this disease, they're the same argument in two different jackets.

So yes. Move your body. Stay in the world — keep your people, keep working if you want to work, don't let your circle shrink. Get your hearing checked, and if you need aids, get them and actually wear them. Get your eyes checked. Take the blood pressure medication. Wear the helmet.

And I'll be straight with you: the evidence is much stronger for staying curious, engaged and connected than it is for any app promising to train your brain. Do the puzzle if you love the puzzle. Don't mistake it for insurance.

You do these things to change your odds. Not to buy a promise. Plenty of people who did everything right still got sick, and Sandy is one of them.

But the twenty-year window we talked about isn't only a window for finding this disease. It's a window where what you do still counts for something.

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

So 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, 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 we mean by be the CEO of your own healthcare. Not that you should have to fight this hard. But until the system changes, the person most likely to catch this in time is you.

There is a person behind every patient. With this disease that isn't a slogan — it's the entire fight. Alzheimer's takes the person first and the patient last, and every single thing we do has to be aimed at the years when the person is still in there.

They call it the long goodbye. Sandy never got to say hers, and neither did we. That's the part the phrase leaves out.

She 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. She has a thousand cats waiting for her, and I'd like to think she's already found them.

Seven million Americans. Twelve million caregivers. A test that exists, and a system that won't pay for it.

That's the state of the patient.

If this episode meant something to you, follow State of the Patient wherever you're listening — Apple Podcasts, Spotify, YouTube, wherever you are. It's free, it takes one tap, and it's the single best way to make sure stories like these keep getting told. And if you know someone caring for a parent or a spouse through this — send them this one.

Free markets should innovate. Safety nets should catch people. This show keeps both honest.

I'm Terry Wilcox. Thanks for listening.

The State of the Patient Podcast is produced by Patients Rising. This transcript has been lightly edited for readability. Listen to the full episode and read the recap: [LINK].

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.