Features, Science

BU’s Aphasia Resource Center serves as a guide to create community and belonging

Eight people sit around a table in room 257 at Boston University’s Sargent College of Health and Rehabilitation Sciences for their weekly meeting — they’ve come to play the board game Clue.

Before the murder mystery begins, they chit-chat about their lives and a particularly interesting Star Wars shirt with Michael Scimeca, a clinical fellow in the Aphasia Resource Center and a Sargent doctoral candidate. Sometimes one of them struggles to find the right word or has to use hand signals to communicate, but everyone is always supportive.

The eight people in room 257 are clients of Boston University’s Aphasia Resource Center, a center free to the public and housed in Sargent. Aphasia is “a disorder that results from damage to portions of the brain that are responsible for language,” according to the National Institute of Health. The clients are attending, as Scimeca calls it, their weekly “language games” group.

Sargent College, where the Aphasia Resource Center is located.
Sargent College, where the Aphasia Resource Center is located. The center has the longest-running aphasia support group in the country. PAIGE WARD/DFP FILE

“Everybody is here for a similar goal, and that’s to get better in an environment that’s welcoming, socially interactive and also very acknowledging [of] what people’s limitations might be, and helping them reach a bigger goal in mind,” Scimeca said.

Elizabeth Hoover, the clinical director of the ARC and a clinical professor at Sargent, described aphasia as “an acquired communication disorder.” It affects people’s language capacities, she said, but not their intellect.

A patient never fully recovers from aphasia, she said. People with aphasia can make “significant improvements,” but if their condition is moderate or severe, it is “extraordinarily rare” to return to pre-stroke ability, Hoover said.

“There’s a need, then, as people age and as they recover, to have access to care and access to a community that’s supportive,” Hoover said. “What we see in our medical healthcare system is that increasingly, rehabilitation for stroke-induced aphasia is shorter … But, you know, people aren’t done with their rehab at that point.”

Bill, one of the patients in room 257, described his experience while other members of the group nodded and agreed.

“We cannot remember the words we want to say,” Bill said. “I can’t say the word I want to say, and it can be very frustrating. But I’ve certainly gotten much better than I was. It took a while. I’m certainly not articulate but I’m getting better and better.”

Christina, another patient who sat across from Bill, told him he is “very articulate.”

The center started at BU in 2006 and has four core aspects. First, comprehensive diagnostic sessions examine patients’ language and recommend specific interventions, Hoover said.

The second and largest part of the center is the “language groups,” Scimeca said. Like “language games,” the center holds 15 weekly groups on Mondays, Wednesdays and Thursdays. Half of the meetings are held over Zoom and vary from public speaking tips to book clubs to conversation groups.

Third, Scimeca said the center offers individual therapies where clients work one on one with a master’s student supervised by a speech pathologist or just a speech pathologist. The final piece of the center is a training program for BU graduate students, which allows the center to be free of charge.

The center is affiliated with the Aphasia Research Laboratory, which focuses on “efficacy studies” and researching the “mechanisms of recovery,” while the ARC works with “group treatments and more of a participation based approach,” Hoover said.

“My favorite part about the center is just seeing people re-engage with others and to recognize that their life isn’t over,” Hoover said. “They’re in a community of people who understand what that means and are here to help.”

The center also has the longest running aphasia support group in the United States. Jerome Kaplan, a clinical supervisor at the ARC, started the Aphasia Community Group in 1990 out of a house, then it moved to Spalding Rehabilitation Center and then to BU when the ARC opened.

Before COVID, the group met once a month for three hours. Now, the group meets on Zoom for 90 minutes twice a month. Around 30 to 40 participants, down from 60 to 80 pre-Zoom, attend from all over the country. They listen to local, national and international speakers, hear information about other ARC groups or break into smaller Zoom groups to share experiences, Kaplan said.

Aside from the Saturday meetings, Kaplan runs five other groups. In his conversation group, Kaplan started mixing clients with less severe and more severe aphasia. To his surprise, the “less-impaired folks saw themselves as teachers and they welcomed and supported” the other clients.

“People with aphasia are my teachers,” he said.

When asked about one aspect of the ARC that has impacted them, the group in room 257 gave mixed responses, but they agreed on at least one thing — “It’s Jerry.”

“I started wearing my heart on my sleeve, and I think if I’m remotely accurate, I’m very open about who I am,” Kaplan said. “I think you have to have empathy for these folks. You can be the smartest researcher, brilliant speech pathologist, which I am not, but if you don’t have any ability to relate to people as people as opposed to just disorders, the connection really isn’t there.”

The ARC has over 450 people in their database, Hoover said, with about 75 people who participate on a weekly basis and 30 referrals sent every year for new people. Of the two and a half million people with aphasia in the United States, Hoover said the vast majority “don’t know what aphasia is before it happens to them.”

“What’s been so rewarding is that most people with aphasia think they’re the only ones who have it when they’re first diagnosed,” she said. “It’s the most common disorder nobody’s ever heard of.”

Back in room 257, Betty and Christina sit next to each other. The pair met this summer.

“The language games is the best. Fall semester and spring semester, I found a dear old friend, Betty,” Christina said.

Christina teared up and Betty took her hand. Betty continued where Christina left off.

“This has taught me so much,” Betty said. “I know I’m not alone and communicating with Christina, I now feel we made friendship beyond this. I will continue to reach out to her. It’s progress.”

DISCLAIMER: The last names of the Aphasia Resource Center patients have been removed to respect their privacy. 

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One Comment

  1. Francesca DiBernardo

    So nice to hear about this under recognized community! Great work Ava!