The Nun Study
In the first years of the 20th century, Alois Alzheimer, a German neurologist, cared for a middle-aged woman with a marked personality change, characterized by bizarre behavior and memory loss. This woman died about five years after he first met her, years characterized by an inexorable decline to a final stage in which she was bed-bound, required total care and was unable to communicate meaningfully. After her death, Dr. Alzheimer studied the brain of his patient and described the changes in intellect, behavior and brain structure that characterize the disease now known by his name.
Alzheimer’s disease is a particular type of dementia. Dementia, when used as a diagnostic term in medicine, refers to the progressive loss of cognitive function in an individual. Thus dementing illnesses affect memory, language, the ability to recognize and name individuals, sense of direction, personality and other aspects of what it means for us to think and reason. There are various kinds of dementing illnesses, but Alzheimer’s is by far the most common. (Others include vascular dementia from multiple strokes and very unusual dementias like those caused by mad cow disease.)
Because there is no specific diagnostic test for Alzheimer’s disease, diagnosis is made by exclusion. In other words, a physician examining a person who has evidence of a cognitive problem will perform a physical exam, order laboratory tests (including neuroimaging studies like a CAT scan or MRI) and make a presumptive diagnosis of Alzheimer’s after ruling out multiple strokes, vitamin deficiencies (Vitamin B12 is the common one), thyroid abnormalities, depression, brain tumors or subdural hematomas (a collection of blood pressing on the brain). The diagnosis of Alzheimer’s disease is certain only after brain tissue has been examined under the microscope.
The whole topic has great significance for our future, both as individuals and as a nation. Dementing illnesses are highly prevalent with increasing age. (The fastest growing age group today includes people 85 and over.) Alzheimer’s disease afflicts individuals, wears down their families and taxes the social support and health care structures of our nation. It is difficult not only for the afflicted individual, but also for those who love them. However, in some cases patients have a gentle decline, become progressively more forgetful and, in earlier times, would probably have been called senile before they succumbed to a peaceful death ascribed to old age. But for other individuals, there is no mildly amusing Arsenic and Old Lace kind of batty confusion, but profound changes in the ability to think, relate to others, deal with emotions and perform some of the most basic functions of life like eating, bathing and using the toilet. Especially distressing are behaviors like running away, becoming violent or wandering and yelling.
But not everyone who becomes old develops Alzheimer’s. Some older individuals whose brains look pretty bad at autopsy (lots of tangles, plaques and missing neurons) were spry and active in life. Other individuals whose brains look quite well preserved spend their last few years appearing to have advanced Alzheimer’s. What is going on? No one is quite sure, but there are a lot of researchers trying to ask the right questions, figure out the answers and give some clues as to ways to prevent, cure and better help those with the disease.
One of these researchers is the epidemiologist David Snowdon, who has written Aging With Grace: What the Nun Study Teaches Us About Leading Longer, Healthier, and More Meaningful Lives, a deeply moving account of a group of women he studies as part of his work. You may have seen some of the hoopla in the media about the Nun Study where Dr. Snowdon and his co-investigators looked into the lives, habits, histories and brains of women from the School Sisters of Notre Dame. Part of that work involved the fascinating comparison between essays these women wrote as novices prior to taking their religious vows, and their subsequent development of Alzheimer’s disease. In some cases, these essays were written well over a half century before any clinical evidence of Alzheimer’s disease appeared. Women with richer vocabularies and syntactically sophisticated linguistic styles appeared to fare better than those who had a paucity of polysyllabic words or complex sentences. (I am hoping this last sentence is predictive of remaining cognitively intact in my 90’s!) Aging with Grace is not only about different aspects of the nun study; it is a rich description of a group of women, a scientific quest and an excellent popular account of our current knowledge about Alzheimer’s.
Dr. Snowdon is a very engaging writer who clearly cares about science but cares at least as much about the women who are permitting him to do his research, allowing him to explore their past, their current knowledge and, even, after death, examine their brains. Regrettably, some review accounts of Aging with Grace have been quick to giggle about studying nuns and seem to delight in trivializing the religious commitment of a group of women. What makes Snowdon’s book so wonderful is that he clearly cares for these women, admires their commitment, is respectful of their way of life and is aware that their selfless generosity, manifest across their lifetime of work, continues after death by the donation of their brains for painstaking study and analysis.
Snowdon neatly combines a good story, some well-explained science and a nicely developed spiritual sense. The pursuit of scientific research provides the bare bones of the story. Snowdon has used the School Sisters of Notre Dame as research subjects for a variety of reasons that make them an excellent group for study. Many who study Alzheimer’s disease, or, for that matter, other conditions that afflict humans, are bedeviled by the presence of what are called confounding variables, specific habits or traits of individuals that may predispose them to a particular illness. As a group of human beings, however, there is a uniformity in the lives of the School Sisters of Notre Dame that decreases some of the most common confounding variables. They did not smoke. They did not drink. There are good records of their lives that explain what they did in common and when individuals had unusual experiences. These characteristics make the sisters a remarkably good research group. Snowdon writes about hypotheses and testing data with verve and full of a sense of the excitement of good research. He provides the best popular account I have read of what we know about dementing illnesses and how to minimize or avoid them, and offers excellent explanations of some of the basic scientific principles that could lead to cures in the future.
But the best thing about this book is the stories of lives spent in service to God. Snowdon is very sensitive to the spiritual lives of these women: he honors their commitments and, in telling their stories, makes clear that God is present and active even in those who are confused or unable to remember. Hope and love can remain alive even when cognitive function declines. Aging With Grace is a realistic, honestly hopeful and grace-filled book about a difficult illness. It combines good science with wise advice and thought-provoking stories.
I would recommend it to all who are at risk for Alzheimer’s diseasein other words, anyone with a brain. The book will be especially helpful for persons with early Alzheimer’s disease (yes, people with early Alzheimer’s can read, think and enjoy life fully), as well as family members and caregivers of individuals who are in any stage of the disease.
This article also appeared in print, under the headline “The Nun Study,” in the October 8, 2001, issue.