BALTIMORE – “How old are you, Sister?”
Sister Agnes Barbara Hettel smiles.
“I’m 92,” she replies. “I’m one of the young ones.”
That’s an inside joke. Dr. David Snowdon gets it. Probably only God knows more elderly nuns.
Snowdon, a Kentucky neurologist, makes his way through the halls of Villa Assumpta, a converted mansion north of Baltimore that is headquarters – “the motherhouse” – for the School Sisters of Notre Dame.
About 80 retired nuns live here. Most are former teachers and administrators. In younger days, they taught students in Catholic schools here and shaped careers at the College of Notre Dame. Some keep busy staffing the reception desk or maintaining archives. Some are occupants of the third floor, a licensed medical unit, that is home for sisters with Alzheimer’s disease.
That’s where Snowdon, 54, is now.
Twenty years ago, Snowdon began research that now encompasses nearly 700 School Sisters across the U.S. As participants in his “Nun Study,” these sisters undergo annual physical and mental tests that gauge the effects of aging. Snowdon will track them until the day they die – and beyond.
Their hope is to unravel the mysteries of Alzheimer’s, the creeping dementia that affects 4.5 million Americans and, at a cost of $100 billion annually, ranks among the country’s most expensive health problems.
The School Sisters in Snowdon’s study left the classroom long ago. Now they’re teaching a larger audience what it means to age well and with dignity.
That’s a lesson worth imparting. America, like the School Sisters, is going gray. Millions of baby boomers are completing their long trip from rock ‘n’ roller to Social Security recipient – and potential Alzheimer’s patient.
The Nun Study has been the subject of a Time magazine cover story, a Nightline broadcast, radio shows, innumerable articles and one book, “Aging With Grace,” written by Snowdon. It has been credited with two landmark findings: establishing a link between vascular episodes – such as strokes – and the onset of Alzheimer’s, and confirming a belief that intellectual activity helps ward off the disease.
A gift after death
Continuing his rounds, Snowdon taps on Sister Helen Fellenz’s open door. She is 94 and taught music at the order’s schools in Japan.
“I feel honored for you to come see me,” Sister Helen says softly.
“Thanks for all you’ve done being part of the study,” Snowdon tells her. “The book just last year was translated into Japanese. How do you say ‘thank you’ in Japanese?”
“Arigato.”
Before Snowdon can visit her again, Sister Helen will die of heart failure, reducing the number of living Nun Study participants to about 150, less than a quarter of the original total.
Like all School Sisters, Sister Helen received the traditional Mass of Christian Burial, and was laid to rest wearing her SSND pin, a crucifix and rosary. But as a Nun Study sister, she had a parting gift for Snowdon: her brain.
“We have it down to a system,” says Sister Bernice Feilinger.
Sister Bernice, coordinator for the Nun Study at Villa Assumpta, makes sure the bodies of all sisters in the study are immediately transported to Johns Hopkins Bayview Medical Center. A lab assistant removes each brain, placing it in a container of formaldehyde, where it sits 10 days before being shipped inside a foam-lined cardboard box.
In the Notre Dame community, the School Sisters who have volunteered for the study have a saying: “When we die our souls go to heaven, but our brains go to Kentucky.”
Snowdon stores the brain specimens, chronologically by death, at the University of Kentucky Medical Center in Lexington. It is believed to be the largest, most thoroughly documented collection of its kind: 520 human brains and counting. Snowdon, by training an epidemiologist – a “disease detective” – is their keeper.
Why study nuns?
In 1986, while completing his doctorate at the University of Minnesota, Snowdon began a pilot project on aging. For his control group, he chose a community of School Sisters of Notre Dame in Mankato, Minn.
Nuns make ideal research subjects. They have nearly identical lifestyles in terms of health care, diet and routine. Variables such as smoking, drinking and sexual activity are all but nonexistent.
“Initially, I was probably a little hesitant or shy getting to know them,” Snowdon says. “Over the years, the nuns have turned me into a cream puff.”
In 1990, Snowdon joined the University of Kentucky Medical Center’s faculty and its Sanders-Brown Center on Aging. By then his study had widened to include the order’s sisters from all over the United States. Conversely, his focus had narrowed – to Alzheimer’s.
Snowdon’s timing was nearly perfect. In the early 1990s, substantial government funding was flowing into Alzheimer’s research. According to the Alzheimer’s Association, 10 percent of people over 65 exhibit some degree of the disease; by 85, that number jumps to 50 percent. These are among the fastest-growing segments of the population.
In religious communities today, age is a delicate issue. Of 300 School Sisters spread from New Jersey to Florida, three-quarters are 65 or older.
Much of the Alzheimer’s landscape remains terra incognita, though two signature characteristics are well-known. Minute fragments of beta-amyloid proteins – “biological roadside litter” – collect outside brain cell walls and around brain neurons. Similarly, protein-based microtubules (threads connecting neurons) inexplicably tangle and knot.
It’s uncertain whether plaque debris and tangles are a cause or an effect of Alzheimer’s. There’s no doubt they multiply. In advanced stages, plaque and tangles can be so extensive that the brain shrivels.
In 1991, Snowdon made a bold request of all U.S. School Sisters who were 75 or older: Would you give me custody of your brain after you die?
To his amazement, 678 sisters consented – an extraordinary compliance rate of 66 percent. He has followed this group ever since.
“Once vital women”
Embryonic stem-cell research violates Catholic Church doctrine, but no prohibitions apply to organ donation. The giving of brains became the Nun Study’s trademark.
“When he came up with this design, it was absolutely innovative, no question,” says Dallas Anderson, a program director at the National Institute on Aging in Bethesda, principal source of the $12 million in grants the Nun Study has received.
The Nun Study underscores a conclusion reached by less-ambitious research efforts: the importance of staying intellectually and socially engaged through the arc of adulthood. Some vibrant School Sisters lived to be 100 without sliding into dementia, though autopsies showed their brains to be riddled with plaque and tangles. Alzheimer’s seems to be stymied by an active mind.
After analyzing the autobiographies the School Sisters write upon entering the convent, Snowdon made a startling connection: Those young women whose prose was least creative and optimistic were most apt to develop Alzheimer’s – an 80 percent correlation. Why? His guess is that, decades before symptoms appear, these brains have been “compromised” by the disease.
“In some respects, the School Sisters’ motherhouse operates as a senior citizens center with staff nurses and physical therapists, organized games and Sister Clara Beall’s hobby room.
Five worktables are squeezed into the former chapel, surrounded by storage cabinets and mounds of supplies.
“The good holy nuns think it’s a bit of a mess,” acknowledges Sister Clara, 73, who can be found amid the clutter from dawn until dark, filling pottery molds, running the sewing machine, doing fine-detail painting that’s too difficult for hobby room attendees.
About 15 sisters show up Monday, Wednesday and Friday mornings. Some are physically and mentally sharp. Half use walkers or wheelchairs. A few have Alzheimer’s.
“Deterioration is hard to watch,” Sister Clara says. “These were once vital women.”
She can spot the first flickers of dementia before a diagnosis. Sisters mismatch paint colors or talk to long-dead mothers.
It’s as if the mind turns a corner, says Sister Clara – and she finds easier craft work for that sister to do. There’s no such thing as failure in her hobby room.
No hobbies, no naps
Sister Mary Agnes Klug, a small, scrappy Orioles fanatic, manages the motherhouse gift shop.
“I like to keep busy. It keeps my mind off myself,” Sister Mary Agnes says.
Customers can buy hobby room crafts, used books and bric-a-brac, greeting cards, Blessed Mother figurines and bargain-basement junk food.
Sister Mary Agnes keeps a safe distance from the hobby room: It’s for “retired people.” She also has an aversion to taking naps – they’re for “older people.” Sister Mary Agnes is 97.
Sometimes Sister Genevieve Kunkel, 95, tends the gift shop. The two have known each other since prep school. Both went to the College of Notre Dame and became School Sisters in the 1930s.
Years later, neither woman hesitated when Snowdon solicited donors for his Nun Study.
“I’m a scientist,” says Sister Mary Agnes, who taught chemistry. “What do I care if they take my brain?”
Sister Genevieve bequeathed her whole body.
“I feel whatever I can contribute to the future, I should,” she says. “Otherwise, I’d never have been an educator.”
Snowdon has about a dozen full-time Nun Study employees. One of his first hires was Sister Gabriel Mary Spaeth, a School Sister from Milwaukee. At 74, she says she’s “amazed at and intrigued by” the workings of the brain.
Every nun gets tested each year, in two hourlong sessions over two days. The first involves basic skills: doing step-ups on raised blocks, walking a line as fast as possible, buttoning a sweater.
The second component is a mental aptitude exam that many sisters dread. It entails replicating complex drawings and answering questions about a long story read aloud.
About 7 percent of Snowdon’s subjects have dropped out. The testing got too fatiguing or too embarrassing. An ever-dwindling majority, though, stuck with him.
Test subjects with muddled minds often freeze on memory questions. At other times there are heartbreaking flashes of clarity.
Sister Gabriel Mary recalls one nun who spoke gibberish, then suddenly stopped and whimpered, “Help me.”
Despite their involvement with the Nun Study, the School Sisters – like any family – struggle with the realities of Alzheimer’s. There are sisters who mistakenly believe the disease is a byproduct of old age or that it’s contagious. They’re sometimes taken aback by Alzheimer’s patients, who in later stages can lose inhibitions or become aggressive.
“Some of the sisters were offended by some of the behavior they were seeing,” says Diane Wit, director of education for the Greater Maryland chapter of the Alzheimer’s Association. “If a sister would curse, they would reprimand her or make her feel bad or argue back.”
“Life in the moment”
The leaders of the motherhouse recently formed a Dementia Study Committee. They plan to hold an “awareness day” to educate all sisters. They’re considering aesthetic changes that will make the medical unit more like home than hospital: softening the lighting, eliminating overhead intercoms.
But the greatest resource they draw upon is intangible.
“I love sitting with the sisters who have Alzheimer’s,” Sister Bernadette says. “They teach us about living life in the moment. I think they’re a gift to us. The gift they give is the simplicity, their unconditional love.”
The $5 million grant funding the Nun Study ends in February. Some within the National Institute on Aging think Snowdon has hit a wall. They contend that it would serve him well to add a group of younger nuns.
“People bring that up pretty regularly to me,” he says.
Snowdon is uncomfortable with bureaucrats but enjoys giving briefings to the School Sisters.
“In the future,” Snowdon tells his motherhouse audience, “I see us getting into Parkinson’s and other brain diseases.”
He takes questions. The first hand that shoots up is Sister Mary Agnes’.
“Most of us in the study are in the older phase,” she says. “Aren’t you planning on getting a younger group to start up with?”
“I don’t want to go out and sign up Notre Dame sisters just to get sheer numbers,” Snowdon says.
But it’s not that simple. Part of him is tempted, while part of Snowden feels like a man surrounded by surrogate grandmothers to whom he’s fiercely loyal. Snowdon attends sisters’ wakes, stays overnight at motherhouses, joined the College of Notre Dame’s trustees. When his brother contracted cancer, the sisters included him in their prayer chains.
The sisters also know that questions – like prayers -sometimes go unanswered. Alzheimer’s disease could be a perpetual puzzle.
A cure is a matter of faith, they say. And God’s will.
“All I know,” Sister Mary Agnes says, “is the Lord has been good to me to keep my legs strong – and my brain going.”
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