Photo by Caitlin Abrams
Sisters at the Benedictine monastery at the College of St. Benedict
No idle hands here: Sisters Bernadette, Jane, and Helen Weber.
Half an hour into my conversation with Sisters Jane, Helen, and Bernadette Weber, I finally get around to asking their ages. We’re sitting outside the chapel at the sisters’ Benedictine monastery, next to the College of St. Benedict, in St. Joseph. I’m expecting to jot down numbers in the 70s.
“I’ll be 89 in December,” Sister Bernadette says.
“I’ll be 91 in November,” Sister Jane says.
“And I’ll be 83 in November,” Sister Helen says.
I exchange glances with the photographer who has joined me for this visit. The three siblings—these Catholic nuns are sisters in both senses of the word—have just described how they spend their days, and it’s quite an itinerary. Sisters Bernadette and Helen work at secretarial jobs in the monastery. And all three take walks, garden, perform communal tasks such as washing dishes, play Scrabble, read the newspaper, and perform crafts like embroidery. Sister Jane recently retired, at age 90, so she spends more time playing Scrabble. (She also sleeps past 6 am, unlike her sisters.) As they chat, hands folded in their laps, the Webers appear relaxed. All three wear slacks and bright tops, sensible shoes, and short haircuts.
Once a year, they take a break from this pleasant routine and line up in makeshift appointment rooms at the monastery for their annual exam as part of the Religious Orders Study (ROS). This is a longitudinal Alzheimer’s and dementia research project, begun almost 25 years ago, and the second aging study to rely exclusively on religious orders. The first, the Nun Study, started in 1986 at the University of Minnesota, and collected data from the School Sisters of Notre Dame, in Mankato. Most of the participants in that study have died, although researchers continue to analyze the data. The ROS is run by researchers at Rush University Medical Center, in Chicago, plus other medical centers across the country, and includes more than 1,000 participants.
Why nuns (and now monks and priests)? For one thing, the studies require postmortem brain autopsies on all subjects, and the scientific gift of a brain donation seemed in keeping with the altruistic nature of religious orders. It’s an essential—and unique—element of the research: Those who don’t exhibit clinical symptoms of Alzheimer’s help researchers identify key traits of the disease when compared to the volunteers who develop it.
Also, this population may be more likely to feel “comfortable thinking about their own mortality,” says Dr. Robert Wilson, a neuropsychologist at the Rush Alzheimer’s Disease Center, who has been a co-investigator on the Religious Orders Study since its inception. Plus, most live communally, which makes for one-stop shopping when researchers travel in from Chicago to conduct the annual exams.
For the Weber sisters, joining the study was a no-brainer: The annual exam is lengthy but painless (they admit to enjoying the memory tests), and they’ve seen firsthand the suffering that often accompanies Alzheimer’s and memory loss.
Sister Jane, one of the original ROS participants, signed up when she was 65. “I thought, I don’t mind going in if it helps any study for Alzheimer’s,” she recalls.
“We don’t really do anything,” Sister Helen says. “There’s a person in charge who takes care of all that.”
As for donating their brains, they shrug. “It doesn’t show when the body is shown,” Sister Bernadette says. But, she acknowledges, “It’s a gift. It’s a gift of life.”
While the Weber sisters have a passing interest in the research that has resulted (“Sometimes I happen to notice articles,” Sister Jane says), they don’t pore over each new finding.
But, for researchers, the ROS has proved to be an incredibly rich set of data. Hundreds of scientists around the world have employed it to examine such issues as risky decision making in older adults, the effect of education level on brain function, and the link between social isolation and mortality.
Why nuns? the studies require postmortem brain autopsies, and the scientific gift of a brain donation seemed in keeping with the altruism of religious orders.
The “big shocker,” though, Wilson says, has been a different discovery: “The numerous brain pathologies that are the main targets of research only explain 40 to 50 percent of cognitive decline and dementia.” In other words, examining brain tissue for the plaques and proteins that signal Alzheimer’s disease leaves much unexplained. In response, “we’re looking at lifestyle factors that may explain memory problems: how often people read, how lonely they are, personality traits like conscientiousness,” Wilson adds. “That can help us find lifestyle factors that can offer protection.”
Another significant finding is that some of Alzheimer’s pathologies—brain cell death, plaques, and shrinkage—show up in people without any clinical symptoms of the disease.
Understanding Alzheimer’s likely involves yet-to-be-identified proteins, lifestyle factors that influence how you use your brain, and even personal traits. Researchers hope their studies may help target some of the proteins that may be responsible for cognitive decline, creating the possibility for clinical drug trials. (No effective medications for Alzheimer’s have emerged since 2003.)
If there’s one overarching lesson from the Religious Orders Study, however, it’s that the disease has proved incredibly complicated.
“Perhaps the biggest challenge is that so many factors are involved,” Wilson says. “And we now understand that, without that brain autopsy, we only have a few clues into what’s going on.”
Buoyed by the success of the ROS, the researchers have started a similar study of laypeople. It turns out many seniors demonstrate an altruistic streak. Older laypeople, the ROS staff report, tend to stay less busy than older religious folks.
It would appear that participating in the research every year has encouraged the Weber sisters to more conscientiously pursue lifestyle choices that may help ward off dementia. These behaviors include crossword puzzles, Scrabble, physical exercise, and socializing with their housemates.
“I try to be more attentive to what is happening and listen better, so I can focus on what’s being said,” Sister Bernadette explains, the faint glow of a stained-glass window behind her. “Sometimes I have a list of people to call, and I try to remember the phone numbers.”
Are the study participants supposed to practice between their yearly exams (the most recent was last month)? There’s some debate on this point, with the sisters shushing each other and laughing with a hint of guilt. But they’re nothing if not energetic and diligent.
At dinner, they will remind each other of the test details they’ve been asked to remember (yes, they recall most of the specifics a year later). In the quick-recall test, they may be asked to list all the animals or fruits or vegetables they can conjure up in a minute. For this test component, the sisters may brush up beforehand on uncommon mammals.
After so many years, Sister Bernadette doesn’t express any worry about the results, she says. “As long as they tell us we’re in the normal range, we’re OK with that.”
