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Lately I've been losing things — my phone several times a day, sometimes while I'm on it. The point I was making 30 seconds ago. The names of people I've known for years, like my neighbor with the Bernedoodle. Of course, I remember his dog's name — Sunny.
Maybe it's nothing to worry about. At 61, this could be normal aging, or ADHD, which I have, or the gabapentin I take for nerve pain, which can cloud thinking.
But maybe it is something to worry about. More than 7 million Americans have Alzheimer's. The memory-robbing disorder has taken my mother and aunt. My sister and brother have concerns about their memory issues, as well. Am I next?
The biggest known risk factor for Alzheimer's is already working against me — age. So is my family history — having a parent or sibling with the disease raises the odds.
So I looked to genetics to get a straight answer — I didn't get one.
A small percentage of cases stem from gene changes that can cause early-onset Alzheimer's. But most cases are murkier. Age, family history and susceptibility genes — variants that can increase risk — are all in the mix.
To answer my question, I needed something more solid than "increased risk" but less of an ordeal than the PET scans or spinal-fluid tests doctors can use to look for Alzheimer's-related changes in the brain. For me, a blood draw sat in that tempting middle.
My annual physical was coming up — I'd decided to ask my doctor about one of the new blood tests I'd been reading about. It involves looking for biomarkers, measurable biological signs linked to the disease, in a vial of blood. The FDA had cleared one to help diagnose Alzheimer's, another to help rule it out. It would be easy. He'd be taking blood anyway — what's another vial? A few days later, he'd call to tell me about my cholesterol, whether my blood sugar was high and whether I had signs of a terminal brain disease.
The panic didn't set in right away. Not when my doctor walked me through my risk factors, the test's accuracy, the false-positive rate. Not when he asked, "Are you sure you want to do this?," and I said, "Yes." It wasn't until I called my husband that it hit.
"I wish we'd talked this through more," he said. "If it comes back positive, are we telling the kids? What would that mean for them? For us?"
My hands tingled. I hadn't thought about that. I'd only thought about the movie version of getting a positive result: my husband and I crying in the kitchen, cut to a plane landing in Paris, then a montage of us eating our way through Europe.
Maybe with a last stop in Switzerland for my prepaid, poignant final farewell. Roll credits.
In my movie, there's no scene of my kids googling their own risk. No montage where I'm denied life insurance because of a positive result or my husband flinching if I forget a word.
None of that made my script.
But as Alzheimer's blood tests start showing up in more doctors' offices, those are the scenarios to consider.
Unlike a blood draw, a result can have a blast radius that reaches far beyond the exam room — into your family, your finances, your future. Once this information is out, cautioned Joshua Grill, a professor at the University of California at Irvine and director of UCI MIND who has received research funding from makers of Alzheimer's drugs and diagnostic tests, "you cannot put the toothpaste back in the tube."
A couple of hours, one panic attack and half a Xanax later, I called my doctor's office. "Can you stop the test?" I asked. "I'm not ready to know."
My near-test experience left me wondering — why was I more prepared to take the test than to live with the result?
There are compelling reasons to take it. Jason Karlawish, co-director of the Penn Memory Center at the University of Pennsylvania, said that for people experiencing "frightening lapses in memory or confusion, having an explanation can settle that uncertainty and allow them to make a plan."
In her research, University of Pennsylvania bioethicist and legal scholar Emily Largent found participants used the information to ask themselves practical questions — "should I retire sooner or should I work longer," for instance — and to consider whether to move closer to an adult child, update wills, talk about future care wishes or begin building support networks.
Test results can also help determine whether you're eligible for clinical trials or treatment with one of the two FDA-approved anti-amyloid drugs — which, while not a cure, may slow decline for some people in the early stages. I understand the appeal, but I wish I had paused and asked these questions first.
Is this the right test at the right time?
My doctor and I had talked extensively about the different blood tests, my family history, and the memory slips that concerned me. But Karlawish told me I had mistaken a careful conversation about testing for the step that should come first — a clinician's assessment of whether my memory concerns amounted to cognitive impairment.
The Alzheimer's Association's guideline draws the line clearly — blood biomarker tests should be used as part of a diagnostic workup for people who already have objective memory or thinking impairment — not as a first step for people trying to predict their risk.
When used as stand-alone screening in cognitively healthy people, Sheena Aurora, vice president of medical affairs at the Alzheimer's Association, cautioned, "The results could be misleading."
"There is no single, stand-alone test to diagnose Alzheimer's disease today," Aurora said.
However, getting a cognitive assessment at a specialty memory clinic can mean waiting months, while a blood draw takes minutes. I've since learned that a primary care doctor is a first step to discuss differences between forgetfulness and cognitive decline.
David Reuben, director of UCLA's Alzheimer's and Dementia Care Program, told me that visit can include a short preliminary evaluation as well as bloodwork to assess thyroid issues or other possible causes of memory or thinking concerns.
What can a test actually reveal?
I knew why I wanted the blood test. I just didn't fully understand what it would tell me.
I was thinking about the actor Chris Hemsworth — more specifically, the genetic testing that revealed he carries two copies of APOE4, a gene variant linked to higher Alzheimer's risk. That kind of test can identify the increased future risk of developing the disease.
These blood tests do something different. Instead of estimating future risk, they look for signs of Alzheimer's-related pathology in the body — "a snapshot of our brain," as Largent put it.
But even a snapshot has limits — it can't tell you when cognitive impairment might begin, or how fast it might progress.
How will you live with knowing?
I'm an obsessive ruminator. Tell me "don't think about polar bears" and I immediately see them everywhere. Was I an outlier? Could other people learn their result and still go about their day? The research is reassuring. Grill said that in the trials in which he was involved, study participants did not show clinically significant depression or anxiety or have thoughts of suicide after learning their results. But they were also psychologically prescreened and received education, counseling and in-person disclosure by an expert.
I'm married to someone who, after 34 years, still enjoys being with me — most of the time. A positive Alzheimer's blood test could change that — I'd no longer be the partner who steadies and annoys him, but someone who might worry or weigh on him.
I also kept coming back to my kids, ages 26 and 30. A positive finding could burden them twice: worry about me and worry about what it might mean for their own risk as my biological children.
A positive result could follow me into medical records, work, and housing and insurance applications — where stigma and discrimination can follow.
Before the blood draw, I should've asked — would the result affect whether I could get insurance or what I'd pay for it, just when I might need it most? Largent's advice was direct: think about life, long-term care and disability insurance before you test — not after.
The test is still on hold for me. If I decide to take it, I want to do it after a cognitive assessment — at the right time, in the right order, without shortcuts that could make the result less reliable.
For now, I need to keep the possibility of an incurable disease in the background, so it doesn't crowd out the life I've got happening in the foreground — my husband easing my worst worries with a joke, usually at my expense. Our dog Walter, who howls if we leave the house for more than 10 minutes. My kids, perpetually annoyed by my unsolicited advice and loud swallowing.
Karlawish described Alzheimer's as "a chipping away of autonomy." So this is how I'm using mine. Taking the test is a choice. Not taking the test is, too. And I'm okay with that. Besides, I remembered the name of Sunny the Bernedoodle's dad — it's Josh. I'm sure I'll forget it again before our next walk.
Sharon Schindel has raised two kids into adulthood and is also a documentary film producer, a wife, and a mom to an excitable labradoodle.
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