My sister has a fantasy about our old age: She imagines that the seven siblings in our family will be living together again, in a house somewhere. Five will be wandering around in bathrobes, lost to dementia. The other two, their minds intact, will look after the lost ones.
In this whimsical scenario, for some reason I am one of the two who stay lucid and do the caretaking. I have mixed feelings about that.
These days, one brother has a habit of filling our sibling group text with links to articles about Alzheimer’s, what could cause it, what might prevent it, what treatments may be just over the horizon. Could excessive napping be a culprit? Can light therapy restore the brain? My favorite is the piece that, with paper-thin evidence, linked a heightened risk of dementia to — I’m not making this up — nose-picking.
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We laugh, but we also get flashes of anxiety when a name is forgotten, an appointment missed, a road map misread. Is it beginning?
Maybe we seem preoccupied. But that’s what happens to the children of Alzheimer’s.
For more than a decade, we watched our mother dissolve into the miasma of dementia. We stood by helplessly as forgetfulness and confusion gradually engulfed this vibrant, smart, cultured woman, silencing her voice, sucking away her intellect, until her death in 2021 at age 88.
We’re now all in our 60s or getting there, and like so many others who’ve gone through the same ordeal, we think often of our mother’s fate and what it might mean for our own. We know that such illnesses can run in families.
My youngest brother believes he has “a very good chance” of getting Alzheimer’s. One sister is convinced it’s a sure thing for her. Another sister sees our mom’s face when she looks in the mirror, and wonders if the resemblance contains an omen.
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But is there a way to get a clearer view of the future? A test that would show what’s lurking in our genes? And if so, would we even want to know?
I found out that there is, in fact, a test. Anyone can send a saliva sample to a DNA-testing company like 23andMe or empowerDx, to find out if they carry APOE-e4, the gene mutation most strongly associated with a risk of late-life Alzheimer’s. About 20 percent to 30 percent of the population carries APOE-e4, and an estimated 40 percent to 65 percent of people diagnosed with Alzheimer’s have it.
But the gene doesn’t reveal the future. You can carry APOE-e4 and never develop Alzheimer’s, and you can be free of the gene and still get the disease. That’s why the Alzheimer’s Association urges caution before taking the test. The association worries that those who learn they don’t have the APOE-e4 gene will falsely believe they’re safe from Alzheimer’s — when lifestyle, environment, and other genetic variants could be putting them at risk.
Most of my siblings were unaware the test exists, and I had never once considered taking it, but I was curious about the choices that others made. So I asked the Alzheimer’s Association to connect me with some folks whose parents had dementia.
One was Leslee Barbosa, a former private chef who shut down her business to take care of her mother, who lived with Alzheimer’s for 11 years. In a recent phone call, she told me that during that time she often wondered: Is this my destiny?
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About three years before her mother’s death in 2020, Barbosa ordered the test from 23andMe. The kit sat on her dining room table in Bridgewater for six months before she gathered the nerve to send in her sample. And when the results came back, revealing that she did indeed carry the APOE-e4 gene, “It was like a kick in the stomach.”
But within a few days, the discovery became a different kind of kick. “I decided that this was powerful knowledge for me,” she says. “Maybe there’s something I could do to lessen my chances of developing this disease.”
Barbosa became “laser-focused” on her health, following the advice from research that suggests exercise and healthy eating could lower her risk. She cut out all sugar, and only eats organic foods, cooking most of her meals herself. She and her husband built a gym in their house, with bikes, weights, and other equipment. Barbosa, who is now 57, works out twice a day, and also takes brisk walks outside. At 5 feet tall, she keeps her weight at a slim 110 pounds.
“It doesn’t have to be terrifying to know you have a genetic risk of Alzheimer’s,” Barbosa tells me, “because there’s so many things that you can do to take care of yourself and to have that power behind you.”
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Evan Mallett, though, isn’t interested in that knowledge. His mother and grandmother both suffered from Alzheimer’s disease, but he doesn’t plan to seek out genetic testing. “I’m fine with not knowing,” he tells me. “I don’t want to spend a lot of time stressing about whether I’m going to have it or not.”
Instead, Mallett focuses on what he can control, directing his energy to activities that can make a difference. He’s working to raise money for research that might someday give him and others “a fighting chance.” He served on the executive leadership committee for the Walk to End Alzheimer’s on the Seacoast, which took place in Portsmouth, New Hampshire, on Oct. 1, and will chair next year’s event. It’s among the 600-plus such fund-raising walks held around the country by the Alzheimer’s Association, which is investing $360-plus million in research.
Mallett, who is 55, owns the Black Trumpet restaurant in Portsmouth and lives in Berwick, Maine. He calls himself a person of action. He isn’t trying to discern the future, but he is also taking a sensible precaution in case the worst happens: looking into long-term care insurance to avoid burdening his wife and two adult children.
To get a better understanding of the risk of developing the disease, I also spoke to a couple of experts in Alzheimer’s genetics. Dr. Daniel Z. Press, chief of the division of cognitive neurology at Beth Israel Deaconess Medical Center, says the APOE-e4 gene is just one factor among many, and not even the most important one.
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The strongest risk factor for Alzheimer’s is old age — your risk goes up the older you get. People with lower education levels also seem to face a higher risk than their more educated peers. The very process of learning could strengthen the brain and formal education is thought to boost “cognitive reserve,” the ability to compensate for the damage that occurs as one ages. There may also be a socioeconomic factor at work: Highly educated people often have better-paying jobs that give them access to healthy environments, quality food, and good medical care.
Other risk factors for Alzheimer’s are the same ones that lead to heart disease: high blood pressure, high body-mass index, high cholesterol, and lack of physical activity. In fact, Press says, high blood pressure alone raises your risk the same amount as the APOE-e4 gene does. You can’t change your genes, but you can certainly bring down your blood pressure.
You can also try to get enough sleep, which Press says is critical. That’s when the brain clears out the amyloid plaques that are the hallmark of Alzheimer’s.
Dr. Rudolph Tanzi, director of the Genetics and Aging Research Unit at Massachusetts General Hospital, also tells me that lifestyle choices matter: “Getting enough sleep and getting enough exercise, adhering to a Mediterranean diet, which is more plant-based, being more interactive and not lonely, learning new things, building up your cognitive reserve,” he says. “All these things seem to lower the risk of Alzheimer’s.”
There are other genes, different from APOE-e4, that do lead directly to Alzheimer’s. But they are very rare, accounting for about 1 percent of Alzheimer’s cases, and these inherited forms typically strike people in their 40s and 50s. (Our mother was about 77 when she first started showing symptoms.)
So, genetics are rarely as important as many people assume. “If you’re in a family where, let’s say, your mom and uncle both got Alzheimer’s but got it in their 80s, there’s probably some genetics going on there, but it’s weak genetics,” Tanzi says. He also cautions people against taking the test for APOE-e4. While some might find it motivating, for others it could cause undue stress, which itself is unhealthy for the brain. “By stressing over that information,” he says, “you might be accelerating your path to Alzheimer’s.”
Press has these words for the worriers: “Unless a close relative developed Alzheimer’s before the age of 60, my general recommendation would be to take a deep breath,” he says. “Having seen it firsthand is a scary thing, but it doesn’t mean your risk of getting it is significantly increased.”
Press has that right — watching Alzheimer’s take a loved one is a scary thing. And conversations I’ve had with my three brothers and three sisters in recent weeks revealed how deep the fear runs. None expressed an interest in finding out their genetic risk, but most said our mom’s illness had changed their lives. Mostly positive changes, moves toward better health — lots of exercise has been happening, lots of attention to nutrition.
My brother Christopher, for example, now has a treadmill desk and once walked 26 miles — a marathon! — on a particularly busy workday. Eight months ago, my sister Amy went on a rigorous diet and started walking two or three miles a day, losing 41 pounds. She does Lumosity brain exercises on the computer and plays Spelling Bee, the New York Times online word game, every day.
Amy, whose work with the Literacy Network of South Berkshire requires her to manage several complex databases, wonders how long her mental acuity will last. “I’m constantly wary of when I will start forgetting how to do this stuff,” she says.
My sister Jennifer, an art director in the fashion and textile industry, eliminated salt from her diet and resumed long walks and yoga after her blood pressure spiked during the pandemic, bringing it down to normal without medication. Hoping to improve the understanding of Alzheimer’s, she volunteered for a years-long observational research study involving numerous brain scans, questionnaires, and blood tests, although it’s unlikely she will ever know what the tests reveal.
But there are other effects that aren’t as positive. Jennifer, who is single, says her concern about Alzheimer’s even shapes her relationships. When she meets someone new, someone who might grow old with her, she worries about when to bring up that dementia could be in her future. She says she would rather die than live with Alzheimer’s.
My brother Rick, a composer whose day job is associate director of operations at a large law firm, expressed similar feelings. He has advised his wife and son that he does not want to go on living should Alzheimer’s strike him. “If there ever comes a time when I’m no longer myself, I don’t want to stay alive,” he tells me. “I don’t want to be around when I’m not me any more.”
Two of my siblings are convinced it’s just a matter of time. Chris, the treadmill walker, who works as a copy editor, also sweats on a rowing machine — but believes the exercising can only delay Alzheimer’s. “Nothing I’m doing is going to stop me from getting it,” he says. And my youngest sister, Nancy, a librarian, also has a fatalistic view. “I’m going to get Alzheimer’s. I don’t think there’s any way around it,” she says flatly. “When I forget something . . . I figure this is another step in the process.”
These strains of pessimism unsettled me. I thought, Either they’re vastly overestimating their risk — or I’m living in serious denial. Because most of the time I don’t believe it’s going to happen to me. I began to wonder if I should worry more.
The last sibling I spoke to was my older brother Gene, a graphic artist who lives in Pennsylvania. Like me, he exercises faithfully, but he’s been doing that since long before our mother’s illness. Like me, he works out in the hope of warding off the many depredations of old age, mental and physical, not just Alzheimer’s.
“So what do you think is the likelihood that you’ll get it?” I ask him.
“I don’t think about that,” he says quickly. “It’s pointless worrying and I’m not going to engage in that.”
I’m not quite so adept at pushing away worries, but hearing Gene’s healthy attitude was a relief. When I contemplate my future, I prefer to focus on the many people in public life who remain active and productive into their 80s and 90s. Nancy Pelosi, 83, is running for reelection. Dick Van Dyke is still acting at 97. Clint Eastwood, 93, expects to direct and produce yet another film this year.
I could go on — Tony Fauci! Martha Stewart! — but there are even examples among our own relatives. Our father lived to 90. Though he was bent and hobbled by arthritis, his mind was sharp until his last few days. His sister, our beloved Aunt Phyllis, is doing even better. After retiring, Phyllis Behar embarked on a new career as a watercolor painter, and she continues to create, exhibit, and sell new works. She’s 88 now, still physically and mentally limber. Her husband, Henry, is about to turn 99 and still writes us clever emails.
I want to believe I can be like my aunt and uncle. There’s no reason to think I can’t.
Except, there is one fact that I cannot deny. Nearly every one of my siblings mentioned it: Our mother, who feared dementia, did all the right things to prevent it. And still it got her.
In many ways, Frances K. Freyer fit the profile of someone who should have escaped Alzheimer’s. She was highly educated, having earned her bachelor’s and two master’s degrees while bearing and raising the seven of us. She was a teacher who founded and ran a school-based program for children with learning disabilities, all while managing our busy household, cooking dinner every night, and always being there for us.
She quit drinking and smoking many years before her symptoms arose; we don’t know whether those habits played a role. (I mean, look at Mick Jagger.) But she was always attentive to diet and exercise. She stayed slender, avoided meat, and ran road races into her 60s.
Genes may not be destiny, but clearly years of healthful living are no guarantee.
In the decade after Mom retired, we started seeing the signs of what lay ahead. The earliest hints came when, mid-sentence, a word would sometimes escape her. Aware and frustrated, she played computerized brain games to try to restore her abilities. But the words continued to flee, one by one, year after year, until there were hardly any left at all.
Rick recalls a New Year’s Eve where Mom became flummoxed by a board game that would normally have been easy for her. Chris remembers talking with her on the phone about a model airplane show where our father had successfully flown one of his creations — and she soon began describing it as if he had been inside a real plane piloting it through the skies. Nancy’s young daughter realized something was amiss when Grandma could no longer name the colors.
And when our strict vegetarian, sports-averse mother took to attending Mets games with our father, and cheerfully eating hot dogs, no doubt remained that she was no longer herself.
I was living 150 miles away and relied on reports from my brothers and sisters. So I didn’t have that moment of recognition that each of them can describe in detail now, even years later. And it kills me that I can’t remember my final conversation with Mom, the last time we talked when she still knew me and knew herself.
Maybe it was the time she was reading a novel that I had just read, and asked me questions about it that made no sense. Some time later, my father gave me her Kindle. I didn’t think much about it at first, and then one day it hit me — she was losing one of her greatest sources of enjoyment, the ability to read.
Still, she continued to sit on the deck with a book open in her lap, turning the pages. It hurts to think of it. I, too, love sitting on my deck with a book.
Maybe I will continue to enjoy my outdoor book browsing far into the future. Or maybe not. Any number of afflictions might befall me, tomorrow or years from now. I’d prefer almost any illness to Alzheimer’s, but that could happen too.
I could also end up in some version of my sister’s fantasy, not sick with Alzheimer’s but caring for someone who is (hopefully not five people!).
That’s what happened to my father, who devoted his last years to the increasingly arduous task of caring for our mom. In December 2019, we finally persuaded him to move both of them from their house into an assisted living facility. He settled into a first-floor apartment, while she went upstairs to the fifth-floor memory unit. It was the first time in 67 years they had slept apart, but the move proved to be a good thing: He got to be her husband again instead of her caretaker.
Every evening after dinner he went up to the fifth floor, met her in a lounge, and instructed the Echo to play the Frank Sinatra songs they used to listen to in the car. He held her hand as they sang. Yes, she could still sing some of the lyrics — music has a way of ferrying words into even a stricken mind.
Three months later, the pandemic came, and everyone had to stay in their rooms. My father could not visit his wife. Evening after evening, she waited, unable to know what had become of him.
These wrenching memories will never leave us.
Even as they shadow me, I hang onto hope that something — my jogging and veggie-munching perhaps, or a lucky roll of the genetic dice, or maybe even advances in medical care — will allow my final years to include the clarity and serenity my mother was denied.
I’m lucky that, unlike my siblings, I got to talk with Dan Press, the Beth Israel Deaconess neurologist, who offers up a note of optimism that makes my hopes seem less foolish. Dementia, he tells me, is more common these days because more people are living into their 70s, 80s, and 90s. “But the risk for having Alzheimer’s when you turn 70 or 80 is actually lower than it used to be 30 or 40 years ago,” he says. “We have started to bend the curve in terms of getting Alzheimer’s disease.”
That’s apparently because people are controlling their blood pressure and cholesterol and possibly getting more exercise. Educational levels are also increasing, he says. Alzheimer’s, it seems, can yield to individual and societal effort, even in the absence of a cure.
I learned another surprise while reporting this story: One of my siblings has taken the genetic test.
Rick sent his saliva to 23andMe a couple of years ago, mostly for ancestry research. When he got the results, he studied his ethnographic origins, but skipped over the medical section. The unread part probably reveals, among other things, whether he carries an APOE-e4 gene.
Rick has never looked at it. He says he doubts the trustworthiness of such results. But mostly he just never got around to it.
Perhaps he also senses that some kinds of knowledge are merely another way of not knowing.
Felice J. Freyer can be reached at felice.freyer@globe.com. Follow her @felicejfreyer.