The brain of a person with Alzheimer's (left) compared to a normal brain (right). [CREDIT: The Commonwealth Scientific and Industrial Research Organisation of Australia]
Not many people can make selling life insurance seem interesting. But Norman Golub can. Even at 83 years old, he’s quick to relate stories about the East Harlem residents who knew him by name, or that time he was strangled in a pizza parlor for telling a guy he was five dollars short on his last payment. He kept on selling, and says he could go back and do it all again.
But occasionally, in the middle of his impassioned storytelling, he’ll stop mid-sentence. Once he restarts, he’s talking about his wife who died four years ago, and the insurance business anecdote remains unfinished.
“All of the sudden, you forget the part of the sentence that you want to use to express your thoughts,” Golub said.
Many outside of the medical community might be quick to guess that Golub has Alzheimer’s disease, an incurable neurological disorder associated with memory loss and an inability to learn. But for doctors it’s not so clear–they have yet to develop a conclusive test to diagnose Alzheimer’s in a living person. Looking at the brain post-mortem is the only way to know for sure that Alzheimer’s was the problem.
That’s why researchers like Barry Reisberg, Steven Ferris, and their associates at the Silberstein Institute for Aging and Dementia at New York University are keeping close tabs on Golub, part of their effort to create the largest Alzheimer’s patient database in the world. The database helps them develop better diagnostic tools and techniques for a disease that affects about half the population over 85 years old. Launched in 1978, NYU’s database actually predates a similar one at the National Institute of Health by nearly a decade.
Differentiating Alzheimer’s disease from other forms of dementia is difficult when its biological basis is still not fully understood. That is why researches have started studying people before they develop Alzheimer’s. For the database, Reiseberg and Ferris repeatedly administer memory tests that evaluate how well a patient can recall short stories, word pairs, and drawings.
Because the tests focus on remembering words, Christine Weber, a clinical neuropsychologist who performs these evaluations, noted that Alzheimer’s patients are better at remembering the pronunciation of phrases rather than the actual meaning. This bias means that Weber can notice when words start losing their meaning to early Alzheimers patients. When someone has trouble recalling lists or identifying images without prompts, “there’s an indication that maybe something is going on with this person,” Weber said.
The center also monitors patients like Golub for progressive memory loss and physical impairment every one or two years. The changes in their responses are stored in the database along with blood and spinal fluid samples and brain images, which the researches use to look for a biological signature of Alzheimer’s.
Barry Reisberg, the clinical director of aging and dementia research, has led the center through a quarter-century of Alzheimer’s research. In 1982, Reisberg and executive director Steven Ferris published what is known as the Global Deterioration Scale, or GDS. Patients evaluated for Alzheimer’s are rated on this scale, which ranges from a completely normal score of one, to a score of seven representing complete incapacitation.
In the absence of a biological test, the GDS is now the gold standard for evaluating Alzheimer’s patients. The scale, Reisberg explained, proved useful when drugs now used to treat Alzheimer’s, including Namenda and memantine, underwent major clinical trials. “The scale is every bit as important today as it was when it was first penned,” he said.
The close monitoring of patients’ symptoms in the database has allowed Reisberg to notice commonalities in Alzheimer’s patients, including the severity of symptoms and their duration within each stage.
The center is trying to study the disease from all angles. Isabel Monteiro, assistant professor of psychiatry at NYU, performs clinical interviews that focus on non-verbal, real-life skills like maintaining relationships, knowing current events, cleaning the house and paying bills on time.
To her, forgetting the name of the last mayor of New York City isn’t necessarily cause for concern. “Just because he or she misses one question doesn’t mean I’m going to flunk her,” Monteiro said. But she stresses that the best option for someone who performs poorly on memory tests or neglects their personal life is to inquire about treatment options.
That’s what Golub did when he began to notice lapses, but many patients deny memory loss long enough to leave researchers little time to slow the disease with medication or cognitive exercises.
This can make the research team feel a little helpless despite their successes. When a former NYU Medical Center physician came to the Silberstein Institute for the first time, his memory tests and clinical interviews already placed him at five on the GDS, signifying moderate to late stage Alzheimer’s disease.
Pamela Joseph, an internist at the center who tested the physician’s reflex skills, couldn’t help but feel frustrated that those close to the patient didn’t have him evaluated sooner. “He was seeing a family physician,” she said, “so why didn’t he come in at stage three?”
Golub understands how hard it is to admit to the problem. “I was in denial,” he said. “I am coping with it, but you can’t help but get depressed at times.”
That’s why the Silberstein Institute offers a support group for study participants and those who want to know more about the disease that affect them or their loved ones. Norman Golub can be found there each week, chatting about his work and his wife over a cup of coffee. In addition to world-class research, it’s the human touch that makes the trips worthwhile.