After a few pleasantries about vegan holiday meals, Jeff Draine cut straight to the awkward business of telling his students what he had already told his bosses and his fellow Temple University professors.
His class of graduate social-work students sat in a semicircle before him in a Center City classroom. They were quiet and focused, as if they sensed that he was trying to say something hard.
“The thing I want to tell you is that I am a person who has Alzheimer’s disease,” Draine said.
Some jaws literally dropped.
Within seconds, Draine was back in teaching mode, asking his students about their experiences with Alzheimer’s. There were many. This was a kind crowd. When one student sneezed, everybody said “Bless you.” Angela Baker, who at 49 is only five years younger than Draine, was the first to say, “Thank you for sharing.” But the Philadelphia woman wasn’t the last.
Draine, an expert on mental illness among prisoners, integrated his diagnosis into the day’s lesson for this class on social justice. A C-SPAN junkie, he showed a film of actor Seth Rogen talking about Alzheimer’s at a Senate hearing. Draine and the students talked about financial support for the elderly, competition among diseases for research funding, and the dysfunctional American health-care system. He had a little trouble finding the charts he wanted on his computer and the break was a tad long, but Draine was an adept, engaging discussion leader.
Some students later said Draine’s classes could be “nonlinear,” but they valued his deep knowledge and his funny, calm demeanor. “He’s an excellent professor,” said Ruthie Cain, 49, of Philadelphia. “I just love him.”
How much longer Draine will be able to teach is anybody’s guess. Alzheimer’s is a progressive disease that slowly destroys the brain. His doctor, David Irwin at Penn Medicine, said testing currently shows “mild” impairment. While Alzheimer’s is known for causing memory problems, people who get it before age 65 often first have trouble with executive function — the decision-making, multitasking part of the brain — or visual processing, he said.
Draine, a former University of Pennsylvania professor who was chair of social work at Temple from 2011 to 2015, has spent a lifetime thinking about inclusion of people with disabilities. Before this semester started, he took the rare step of disclosing his illness to school leaders and asking for accommodations under the Americans With Disabilities Act. To his delight, they readily approved the hiring of Brittani Kaigler, a 27-year-old junior in the school of communications, to help him with the tasks that are harder for him now: organization and time management. His class load was spread out over three semesters instead of two.
“I got nothing but support from throughout the administration on this,” Draine said.
It may have helped that Philip McCallion, director of the school of social work, is an expert on aging and intellectual disabilities. He understood that work is valuable and that dementia does not rob people of all their abilities at the same time or pace. “A person doesn’t become dementia,” he said. “They’re still an individual … and each case really is individual.”
This was McCallion’s first experience with a professor who wanted accommodations because of Alzheimer’s. The law requires employers to help people with disabilities who can still perform the core responsibilities of their jobs. McCallion knew of Draine’s work, but he had just started his job at Temple in July.
“I think part of me was pleased that Temple was seen as an employer where someone could raise this issue and expect that people would listen and try to figure out what was going on with him,” he said. “Often there’s a fear that no one will understand.”
It is, of course, also important to make sure that students are getting a good education, he said, and Draine’s performance will be monitored.
Some coworkers are concerned that Draine’s bravery could backfire. There are likely plenty of imperfect teachers at any university, but Draine’s failings will now be seen through a new lens. At the same time, college is ideally about more than absorbing facts. It is also about learning to cope with challenge and disappointment. Draine is modeling with touching openness and grace how an adult handles heartbreakingly bad luck.
“He still has a tremendous amount to offer to our students,” McCallion said. “Social work is a helping profession, and we need to be clear that sometimes we need help, too.”
Fewer than one in a thousand people get Alzheimer’s before age 65. Draine has no family history of the disease. While it can still be diagnosed definitively only when a pathologist looks at brain tissue after death, new tests are helping doctors make better diagnoses earlier. Draine has Alzheimer’s symptoms and images of his brain show that amyloid, a protein associated with the disease, is accumulating. “As far as we can tell with current technology, he’s at very high risk of progression,” Irwin said. Draine has joined a clinical trial of a drug designed to combat the amyloid.
With earlier diagnoses and with many people wanting to work past the traditional retirement age, more employers are likely to encounter workers like Draine. Julie Thomas, associate director of clinical services for the Alzheimer’s Association’s Delaware Valley Chapter, said she’s seen no evidence that companies are preparing for that. “We don’t have employers calling us asking us what tools might be helpful to support people,” she said. “We’ve never had that happen.”
Draine realized several years ago that he was finding it harder to stay organized and to track what was going on in meetings. Other faculty noted that he was asking a lot of questions about the campus computer system, but just assumed he wasn’t a tech-savvy guy. More recently, one coworker pulled him aside and said: “Something’s up with you. Do you know that?”
His wife, Deb Dunbar, a nurse practitioner who does HIV-prevention research at Penn, noticed that he was retelling stories, but what really worried her was his driving. He would drive through red lights and stop at green. She took him to a doctor for the cognitive problems in 2014, but Draine passed all the tests. By 2015, another doctor said he had mild cognitive impairment, which can be a precursor of dementia.
The driving stopped after an accident in February 2016. Draine takes the train everywhere now. His wife helps keep him on schedule. A psychiatrist referred him to Irwin a year ago after she could find no evidence that a mood disorder was causing his thinking problems.
During conversation now, he has some trouble remembering words quickly while answering difficult philosophical questions or trying to remember the history of his illness. His language is richer and much more fluid when he talks about his research. While he adds new material, he said he can still teach well because he’s been teaching the same set of courses for more than 20 years.
Dunbar said she misses the “rapid-fire verbal volleying” that was part of what drew her to Draine. This is the second marriage for both. They met on the train and married on New Year’s Day 2008. Between them, they have five children.
She said her husband, now freed of many humdrum day-to-day details, is “paying close attention to the things that matter” like social justice, love, and kindness. “It’s a bit like we have the essential oil of Jeff,” she said. “Some of his wonderful characteristics are even more available.”
Draine thought a lot about whether to tell people about his condition, but decided it was important to “be open and obvious about things that might be useful for other people to see.” Once he had told his superiors, he thought he might as well tell others rather than have them wonder why Kaigler is working with him.
“I wanted all my colleagues to know and wanted them to understand if Brittani showed up in a classroom,” he said. She is not helping him in class now, but may next semester. He knows that students have noticed some symptoms. “The worst thing to do is to try to keep these things secret once they’re enacted, because they’re not secret.”
Since he made his announcements, people are treating him the way they always have. “No one’s been especially nice to me or especially mean,” he said.
Draine says he is not depressed. He seems remarkably calm about his bleak prognosis, an outlook his wife says is consistent with his normal, mellow disposition and strong faith.
“The best thing is I have a view of life in which I’m able to accept things,” Draine said. “Every day is just that, is today. That’s basically how I was already living my life before this became part of it.”
The big, looming question is how everyone will know when it’s time for him to quit working. Draine, his wife, and coworkers all say they’re paying close attention to how he is performing.
“There’s a community of people here who are looking out for him,” said Karin Eyrich-Garg, who is program director for the social-work master’s program. She was Draine’s “support human” when he asked for help.
“Perhaps there’s a point where this can’t be sustained,” McCallion said. “I don’t think we’re anywhere close to that yet.”
For now, Draine is taking it semester by semester. He hopes he can teach through the summer. He is proud of the research he’s done and says he could walk away satisfied with the contribution he has made. He thinks he has more to offer.
“I want to make sure that I leave,” he said, “at a time when I feel like it’s a good time to leave, as opposed to being told.”