Here’s what the designers of the Alzheimer’s study didn’t think about
Content warning: curse words (justified, but still)
I’m not normally given to crying fits
I mean, they happen, but it takes a lot. So when my husband returned home from running errands and found me slumped against the bathtub, my eyes swollen and red, he knew something was wrong. As in way-beyond-a-writing-rejection-or-a-bad-haircut wrong.
He knelt beside me and took my hand, letting me find the breath to answer him when he asked, “What is it?”
I held up the envelope. “I qualify,” I said, my voice choking. “I’m in the study.”
He put his arms around me. “I’m sorry,” I said. “I’m so sorry.”
He held me as I dissolved into tears again. “Well,” he said, his voice hoarse, “we’re taking that trip to Paris.”
I hadn’t foreseen anything like this when I volunteered
When I saw the ad recruiting participants in a clinical research trial to investigate a possible treatment for Alzheimer’s, I saw it as an opportunity. They wanted people in a certain age range — check — and those in good health — check — who had one or more family members with the disease.
Check.
One of my sisters has Alzheimer’s. She’s twelve years older than I am, and in hindsight, I can see that she was showing early symptoms nearly that long ago. It took me a long time to abandon other explanations for my artistic, polymath sister’s lapses. She was so good at compensating and covering that when she was finally diagnosed, it was almost a relief.
Dementia in various forms seems to stalk my family of origin. My mother was mentally sound, an avid reader and social activist until she had a devastating stroke at age 92.
It left her alive but bedridden and addled with vascular dementia, the massive bleed inside her skull depriving her brain of oxygen. She lived another four years in a nursing home, a shadow of her former self, one of the “poor souls” she used to visit while serving as a deacon in her church.
My other sister has a rarer, more confounding brain disorder: corticobasal syndrome, which has steadily attacked her motor and cognitive functions for over seven years.
There is neither cure nor treatment for corticobasal syndrome, merely a progression of doomed attempts to control its symptoms: anticonvulsants, antianxiety meds, analgesics for painful muscular contractures. It’s a disease that is as yet little understood. It may be a variety of Lewy body dementia.
This goes to show that not all dementia is caused by Alzheimer’s. And Alzheimer’s is not necessarily as bad as dementia gets.
But it’s still a shitty disease.
So, a study? Count me in
At last, there was something positive I could do, beyond supporting my sisters and their adult kids in whatever inadequate ways available to me. If I could assist in research for an Alzheimer’s treatment, it probably wouldn’t change anything for my sister. But it could help change things for someone’s loved one, somewhere down the line.
So I did the whole online portal thing. That got me an appointment at a local research clinic. I showed up, bright-eyed and optimistic, filled out the long questionnaire, and was welcomed into the exam room by a lab tech.
The lab tech couldn’t tell me much about the study except that its criteria were exacting, which made finding qualifying participants very challenging. Most of the applicants were not selected. She appreciated my willingness to go through the screening process.
A tiny chill crept around the edges of my enthusiasm. Almost everyone I know is related to somebody with dementia. What was the problem?
She was very kind as she took my vitals, asked me yet more questions, and then took my blood samples. Lots and lots of blood samples.
That was okay. I’m not squeamish about needles. But that further round of questions had deepened the chill.
Yes, I was willing to undergo an MRI if required by the study.
Yes, I had someone at home who could drive me to appointments and assist me in filling out periodic questionnaires as the study continued.
Why would I need someone to do that?
The lab tech also had me fill out a form allowing me to receive some compensation for my time and mileage — an amount so modest that I tried to decline it.
At some point, I would also be mailed a $25 gift card as a thank-you for participating in the study. I tried to decline that as well, figuring I’d rather see those funds go to research, but it was part of the protocol and she had no authority to change it.
Next came the neurologist
A man in his early 50s, lean and athletic-looking in his lab coat, entered the room. He introduced himself as the consulting physician in charge of administering the study in our region.
We chatted. He was very personable. Then he launched into another round of questions, some of them repeats of those I’d already answered. He reiterated the point that an investigative trial like this one was very exacting and that very few volunteers qualified.
There was something in his manner, something about his penetrating, curious gaze, that seemed to be asking a question he couldn’t say out loud: Are you sure you really want to do this?
By this time it had belatedly dawned on me that they weren’t just looking for healthy subjects to serve as controls.
They were looking for subjects who were at high risk for Alzheimer’s.
It was just as the chill settled heavily in my midsection that he gave me a list of five words to memorize, which he would ask me to repeat in a few minutes.
I’d sat with my mother and sisters as they were given these cognitive exams. Privately, I always aced them. But that was when I wasn’t in the hot seat, having my mental faculties tested by someone in a white coat.
I passed, but barely: one point above the threshold score. The chill in my middle descended another notch.
Then the neurologist explained that my blood would be tested for a variety of indicators, including genetic markers and certain protein levels. If I met the criteria, I would be notified and then the real study protocol would begin.
“The hope is that you don’t qualify,” he said
Because if I did, he explained, it would mean that there was a high likelihood — which his expressive metadata assured me was more like a certainty — that I would “begin to exhibit symptoms within three years.”
Shit.
“When will I know?” I asked, trying to keep my voice even.
“The directors of the national study are constantly making updates to the protocols,” he said. “And they don’t share with me if your scores are way outside the criteria, or very close to the criteria. Only if you’re in or out. That’s just how these things go. Anyway, it’ll likely be weeks before you hear anything.”
And if I heard nothing? I could consider that good news.
“Thanks for coming in,” he said and shook my hand again before leaving the room. “I’ve enjoyed meeting you, but in all honesty, I hope I don’t see you again.”
I drove home from the clinic in a daze
I told myself if Alzheimer’s was coming for me, better to know so I could start treatment ASAP. For my loved ones, especially my husband, it would be best if they had as much time as they could to adjust to the idea, and to plan accordingly.
And I’d want to make plans of my own.
One might involve a one-way plane ticket to Switzerland.
Weeks passed with no word from the study organizers
Life continued in its attention-seeking way. The cold lump of dread I’d pushed to the back of my mind melted into a negligible particle.
After three months, I figured that was it. I was in the clear. How much in the clear, who knew, but that wasn’t the point.
Take the win, I told myself.
Until that morning on a summer Saturday, when my stroll to the mailbox turned up a manila envelope addressed to me. It was from the study organizers.
Instantly, the cold lump re-materialized.
The envelope contained a $25 gift card and a one-page letter.
“Thank you for enrolling in the (name redacted) Study! Your participation is vital to helping blah blah blah . . .” The words wavered into a meaningless blur.
I don’t remember how or why I ended up on the floor in the bathroom, clutching my knees to my chest, but that’s where my husband found me.
After the initial shock came fury
“This is how they let me know?” I fumed. “A fucking gift card?”
“Does the letter say anything else?” asked my husband. Gently.
It contained next to no information except how to redeem the card. If I had any questions my study supervisor was available anytime during business hours Monday through Friday.
It was a long weekend.
I called first thing Monday morning
My contact was one of the research assistants, a young woman named Kristina. I explained I’d received the gift card and the letter.
“I assume that means I’m in the study,” I said.
“I don’t know about that,” she replied. “Let me check. Can you hold?”
I held.
She came back on the line. “At this point, what I’m seeing is that it hasn’t yet been determined that you meet the criteria.”
“But what about the gift card?” My voice was beginning to fray.
“Oh — no, they send those out to everyone who goes through the intake. It’s just to thank you for your time. It doesn’t necessarily mean you qualify.”
DON’T YOU THINK IT WOULD HAVE BEEN NICE IF THE GODDAMN LETTER, OR YOU, OR ANYBODY, WOULD HAVE MADE THAT CLEAR? is what I did not shout, or even say aloud.
“In fact,” she continued, “we haven’t had anybody who’s applied at our clinic qualify. It’s been very challenging to find subjects, which is why we appreciate —”
“I know,” I said, interrupting. “So does this mean I’m not in?”
“Ah,” she said, and I heard a curtain of protocol-induced caution descend. “All I can tell you is that your status is undetermined. The criteria keep changing as the study goes on.”
“So these criteria,” I said, an edge creeping into my demeanor, “are they expanding or getting narrower? I mean, are my chances of qualifying increasing or decreasing?”
“I can’t tell you that either.”
I said nothing. She heard me.
“What I can do,” she said, “is keep checking for you.”
“I’d appreciate that,” I said. I went on to suggest the study organizers rethink their communications with volunteer subjects — but I did so politely and calmly. None of this was Kristina’s fault.
The call ended, and I breathed a sigh of — something
Not relief, exactly. More like appreciation for a stay of execution. For a week or so, I checked my emails with a degree of anxiety, scanning for one from Kristina.
None came.
After several weeks, I called her again. She had no more official information than she did the last time, but she managed to convey, with plausible deniability, that my prospects of qualifying were receding.
She assured me she’d contact me when she had any kind of confirmation.
Weeks more passed. Then months.
Nothing.
The study receded to the back of my mental closet. Still, they took up space there. When I got an automated email, six months after I’d initially volunteered, informing me that my online “study hub” password was about to expire, I emailed Kristina again.
She emailed back:
I apologize for neglecting to reach back out to you, your pTau still does not meet criteria. I appreciate your patience, hope you have a wonderful day!
I’ll take that as good news, I responded.
That was a year and a half ago. I’ve heard nothing since
I don’t see ads for that study anymore. Maybe the drug they were testing was a dud. I haven’t checked.
Have I abolished all fear of dementia? Of course not. Nobody my age is entirely free of that anxiety; that’s why we all make nervous jokes when we forget something stupid.
Meanwhile, my sister who has Alzheimer’s slips further, if gently, into its dreamlike realm. Her husband of nearly 60 years has joined her on the journey. When I visit them, they still know me and are delighted to see me. But they tire in less than an hour — it takes enormous energy for them to maintain a conversation. The assisted living facility worries about their reluctance to shower or change clothes and suggests they’ll soon be moved to memory care.
As for my other sister, she’s now bedridden and unable to do anything for herself. Her mental faculties occasionally spark but mostly ebb, like dying embers.
Will I end up like either of them?
Uncertainty is something I’ve learned to live with. So does everyone my age. The older I get, the more I understand life’s fragility, and the more I appreciate each day I’m granted.
Meanwhile, I would never wish to discourage anyone from volunteering for a clinical study. It’s a good and prosocial thing to do. Research is our best hope for combatting Alzheimer’s along with many other afflictions.
Just be very clear on what exactly it means when you sign up.
And yes, we took that trip to Paris. As for the gift card, I shredded it.