Alzheimer’s disease is an insidious killer, robbing its victims of their memories, their thoughts and the very consciousness of who they are before stealing away with their lives.
No one wants to live with it, and no one wants to see someone they love suffer its effects.
Sinsinawa Dominican Sister Christiane Althaus saw the effects of Alzheimer’s disease on an elderly aunt. So when she turned 65 in 1999, she signed up for a study in which members of Catholic religious orders agree to undergo physical and cognitive testing each year and donate their brains for research after death in the hopes of learning how to prevent Alzheimer’s disease.
“When I heard about this, I thought maybe I could help so other people would not have to go through this,” said Sister Althaus.
She is one of more than 1,150 religious sisters, brothers and priests who have participated in the Religious Orders Study coordinated by Rush University in Chicago since 1993. More than 500 have died and donated their brains for further study.
So far, there is no cure for Alzheimer’s disease and no way to prevent it. As of now, the only sure diagnosis comes after death, if pathologists find the tell-tale plaques and tangles in the brain.
Alzheimer’s, the most common form of dementia, affects an estimated 5.3 million Americans and is the nation’s seventh-leading cause of death, according to the national Alzheimer’s Association, which is based in Chicago. The number of cases is rising, as Americans live longer due to healthier lifestyles and improved health care — and is expected to rise higher as baby boomers reach old age.
Dr. David Bennett, the study director, said the study has been very productive, yielding insight on the relationship between clinical diagnoses of Alzheimer’s disease, as well as stroke and Parkinson’s disease; pathological evidence of such diseases in the brain; and the lifestyles of the study subjects who want to help change that.
Bennett said he originally approached religious congregations because he thought that they would do it, despite the inconvenience of annual testing and the requirement that they donate their brains for research.
“We thought their altruism would lead them to do it,” Bennett said.
He was right.
Sister of St. Joseph Adrienne Schmidt of LaGrange Park, Ill., was 65 years old, the minimum age, when the study began, and she was one of the first volunteers from her congregation.
“It was my being able to help someone else, being able to give some hope,” Sister Adrienne said about her decision to participate. “Not everyone would care to do it.”
‘One with all’
But it fits with the mission of her community, to be “one with one, and one with all,” Sister Adrienne said. “You give yourself to your neighbor.”
Divine Word Father Charles Schnieder, who was a missionary in Ghana for decades, said as a Christian he is called to do whatever he can to help others.
Father Schneider, 91, has macular degeneration and other health problems, but he still ministers at the Techny, Ill., headquarters of the Society of the Divine Word by hearing confessions and taking on other duties.
One of his Divine Word brothers, Father Richard Kamp, 90, said he believes God expects him to use whatever resources he has to help others. Father Kamp has had his share of health problems — a doctor gave him three to five years to live after a heart bypass in the 1970s — but now is relatively well and is able to drive. He assists at area parishes on weekends and ministers in a hospice program.
Sinsinawa Dominican Sister Alyce Kelly, who joined the study five years ago after moving to the Mound, as the Sinsinawa motherhouse is called, said she signed up as soon as she could after hearing some of the other sisters talk about it.
“I have a prayer that I saw every morning; ‘Lord, send me to someone who needs me,’” Sister Alyce said. “And here was someone who needed me.”
Sister Alyce, 80, said she had no qualms about donating her brain to science. “I’ve also donated all parts of my body that are in good enough condition that they might be useful to someone.”
Bennett said religious men and women make good candidates for such a study for a number of practical reasons. Because they live communally, it’s easy to find them each year, and they take their commitments seriously, so few drop out once they have started.
So far, 95 percent of participants have followed through with the annual testing, and 94 percent have had their brains autopsied. Other studies have had autopsy rates as low as 20 percent, at least in part because participants’ survivors objected.
In the case of religious communities, members take the wishes of their deceased brothers and sisters seriously and see it as a problem if they are not able to follow through on them, Bennett said.
Sister Adrienne pointed out that the lifestyles of religious women are stable, with few changes as they age.
They are also similar to one another in diet, activity level, education and other lifestyle factors, which can be an advantage when researchers want to control for those factors.
The tests used by the Rush researchers are intended to reveal whether a participant has some of the symptoms of dementia. In Alzheimer’s, early stages include an inability to remember recently learned facts. Eventually, it progresses to general confusion, language breakdown, long-term memory loss, personality withdrawal and increasing reliance on caregivers to accomplish basic daily tasks such as getting dressed.
In their annual testing, participants generally are told a story, and asked to repeat as many details as they can, Sister Alyce said. Then they are given groups of numbers — some strings as long as seven numbers — and asked to put them in order.
Then the researchers might ask them to go back and repeat the details of the original story.
Much of the value of the study comes with being able to correlate how a participant’s test results progressed with the physical state of the brain after death, Bennett said.
Virtually all the brains that have been donated show some physical signs of Alzheimer’s, he said, even though nearly half had no clinical signs of dementia or cognitive impairment. Over the years, researchers have found that people with active intellectual and social lives are less likely to show clinical symptoms of Alzheimer’s disease, even as their brains have the physical pathology. They are now turning their attention to how such lifestyle factors are expressed in the physical brain.
One of the biggest things the Religious Order Study taught researchers is how to conduct such a study. In 1997, Bennett and other researchers started the Memory and Aging Project, which now has about 1,400 participants from Chicago and surrounding counties. That group is more diverse in terms of socioeconomic status and lifestyle. As the original religious order participants pass away, they will be the future of Alzheimer’s research.
“Unfortunately, there are not a lot of younger religious,” he said.
The other thing Bennett said he has learned from doing this study?
“There’s no such thing as a retired nun,” he said.
Michelle Martin writes from Illinois.
Body Donation (sidebar)
Can a Catholic donate his or her body to medical science?
The short answer is yes, just as Catholics are permitted to donate their organs to living people after they die.
According to the Catechism of the Catholic Church, “Autopsies can be morally permitted for legal inquests or scientific research. The free gift of organs after death is legitimate and can be meritorious” (No. 2301).
Just as organ donation for transplants into living people is permitted (see No. 2296), giving one’s organs or one’s whole body for research has the potential to benefit a great number of people.
However, Catholic teaching offers several caveats. For donation of a body or organs to be legitimate, it must be done with the consent of the donor or his or her proxy, and human remains must always be treated with dignity and respect.