June 17, 2008 Features

Aphasia: The Great Leveler

Although research indicates that people who survive strokes can continue to improve with rehabilitation, traditional speech and language services usually are reimbursed by insurance only for a few months. Across the country, new alternatives focus on group treatment for stroke survivors who are no longer considered "acute."

Such treatment models help people with aphasia because they can learn from one another as they explore new ways of communicating to resume their interests and relationships.

In 1998, the Life Participation Approach to Aphasia Group formalized ideas about a consumer-driven service-delivery approach for individuals with aphasia ("Life Participation Approach to Aphasia: A Statement of Values for the Future," The ASHA Leader, Feb. 15, 2000). A sampling of aphasia treatment centers around the country reveals common threads that draw on this approach, despite variations in setting, reimbursement, and programming.

Patient to Patient

"[Patients] can teach each other in ways that you or I can't. They model from each other so much better than they could model from us," said Jan Avent, professor and director of the Aphasia Treatment Program (ATP) in the Department of Communicative Sciences and Disorders at California State University East Bay (Hayward).

Avent noted opportunities for creative treatments. One ATP group connects members with an aphasia support group in South Africa by e-mail. Another program focuses on food tastings, an activity that patients take home.

"We used a rating scale, from 1 to 5. I watched a member—she was practicing counting," she said. "It was striking to me that watching [a fellow patient] helped, where my showing [counting] wasn't enough to learn it."

The Stroke Comeback Center (SCC, Oakton, Virginia) sponsors 21 speech-language pathologist-led groups each week. Speech-language pathology students from local universities participate as interns and nursing students observe. SLPs lead the groups in various drills, using photos or lists of words to stimulate conversation.

"The beauty of group treatment is that members who have more difficulty in communication do wonderful things when they see the example of other group members," notes Darlene Williamson, SCC executive director.

One of the oldest aphasia treatment centers in the country, University of Michigan Aphasia Program (UMAP, Ann Arbor), includes a daily group meeting. The clients also receive three hours of individual treatment a day.

"One of the real powers of the program is it helps clients to risk attempting language again," said Joanne Marttila Pierson, UMAP associate director. "We have [participants] talk about the power of being in community with others who have aphasia."

Group Activities

"We use therapeutic methods that are evidence-based," SCC's Williamson said. "But we're not measuring the number of words they are able to say; we are measuring how they are able to actively participate in life."

In one group earlier this year, the topic was each member's "bucket list," a reference to a movie in which two terminally ill men write and then carry out their wish list of things to do.

"The young people joined right in," she said, referring to two men in their early 20s who attend the center. Both had strokes as a result of aneurysms. "They said, ‘Hey, I'm 23—anything, anything [would be on my bucket list].'"

Pierson echoed the life participation approach, saying, "We get [clients] out, experiencing life, so they can practice and move into similar activities back home."

The UMAP group eats lunch together daily, and goes out to dinner on Wednesdays. Staff members join the dinner group and assess treatment outcomes informally. On weekends, the group shares activities such as movies, bowling, or shopping.

ATP includes a unique system—reciprocal scaffolding treatment—that Avent devised, which places people with aphasia who have special skills into teaching situations. The treatment can be used for any expert or novice.

It began with one of her patients, Wilson Talley. As a nuclear physicist, Talley taught university classes, co-authored books with Edward Teller, father of the hydrogen bomb, and served as a presidential advisor. In 1998 at age 63, Talley had a stroke. He became the first in ATP to attend preschool as both a student and a professor. By practicing basic communication with the students, he taught them basic science.

"Aphasia is the great leveler," Avent said. "In that dynamic interaction with children, he had to learn on his feet to communicate more effectively."

The reciprocal scaffolding was so successful the preschool asked Talley to stay on, for which he received recognition as a White House Fellow. Avent accompanied Talley and his wife and daughter to Washington, DC, on Oct. 26, 2007, for the award ceremony.

"For him to ask three women to be his voice [at the event] was one of the highlights of my career," said Avent, who also made a presentation and discussed the effects of stroke.

Support for Caregivers

Family members are quite involved in Virginia's SCC, volunteering time, donating books and other resources, or helping with fundraising. The family presence led to a weekly two-hour caregivers support group. Members also sometimes meet elsewhere for dinners or card games.

At ATP, family members are not as involved as Avent would like. It is difficult in the crowded San Francisco Bay area to bring people together, she said. Some family members meet for lunch once a month.

UMAP includes a weekly caregivers' support group, recognizing that "we are social beings," Pierson said.

"It's why we develop language. [That's why] you don't just work with a person who has aphasia," she added. "You encompass all aspects of their lives."

Funding for Treatment

SCC charges on a sliding scale and will not turn away anyone. The center, funded mostly through public and private donations, has obtained some grant money. Williamson credits much of the center's success to a former client, Janice Rodriguez, a lawyer and computer tech who works pro bono for the center.

As a university training program, ATP charges fees on a sliding scale and also will not turn away applicants. However, at times, participants may have to wait for a new session because it is important for everyone in groups to be present from the first day, Avent said.

UMAP is private-pay, Pierson said. Clients file for insurance reimbursement themselves. Some attend shorter treatment sessions, some receive vocational rehabilitation funding, and UMAP provides a limited amount of scholarship money.

Future Directions

"We're experimenting with telegroups, Skype visual phone interactions, and long-distance e-mail buddies," Avent said. "I think all of these types of social connections, along with other Internet-based communication, will become increasingly important."

UMAP is working on caregiver handbooks and developing workshops to train not only caregivers as is currently done, but also members of a client's home community.

"It would allow a client to build an intensive treatment program on their own [at home]. Their program would be managed by an SLP," Pierson said.

Improved emergency treatment for stroke is increasing the number of people who survive strokes at the same time health care dollars are shrinking, Williamson notes.

"A whole category of people are being limited by communication impairments," she said. "These centers are really where it's going to be in the future."

Dee Naquin Shafer, an assistant managing editor of The ASHA Leader, can be contacted at dshafer@asha.org.

Janet Brown, director of health care services in speech-language pathology, also contributed to this article. She can be reached at jbrown@asha.org.

cite as: Shafer, D. N.  & Brown, J. (2008, June 17). Aphasia: The Great Leveler. The ASHA Leader.

"A Life-Changing Experience"

The Stroke Comeback Center in Oakton, Virginia, relies on volunteer work from Janice Rodriguez, a lawyer and computer technician. Rodriguez is also an effective mentor for the center—she survived a stroke on Sept. 13, 2000.

"I was reviewing a brief when suddenly I knew that something happened but didn't know what," she said in an e-mail. "I did not know that I had lost my language until much later in the hospital. I thought that saying 'I don't know' was a very reasonable reply for everything."

Rodriguez returned to work part-time after 15 months. Although her firm was supportive, she said her language skills were insufficient, and her auditory processing poor. After eight months of part-time work, she developed seizures and knew it was time to leave the firm.

"A stroke is a life-changing experience," she said. "You have to let yourself be angry, sad, and the other myriad emotions you feel. Acceptance is important. Of course I still grieve for my old life, my old communication skills. But my life now is rich and satisfied in a way that I had not imagined. Being part of the center is part of that." 



Aphasia Support Centers

Stroke Comeback Center, Oakton, Virginia (2005)
Darlene S. Williamson, executive director, dswill50@aol.com
Fees: sliding scale, insurance accepted
Sessions: 9 weeks, 1-5 hours weekly
Average number of participants: 50-60
Age range: 30s to 50s; average in the 50s

Aphasia Treatment Program, California State University East Bay, Hayward (1996)
Jan Avent, director, jan.avent@csueastbay.edu  
Fees: sliding scale, insurance accepted
Sessions: 10 weeks, 8 hours weekly
Average number of participants: 16-22
Age range: 30s to 80s; average in the 50s

University of Michigan Aphasia Program, Ann Arbor (1947)
Joanne Marttila Pierson, associate director, jpierson@umich.edu
Fees: Private-pay, non-participating with insurance
Sessions: 6 weeks, 23 hours weekly
Average number of participants: 10-12
Age range: 16 to 80s; average in the 50s  



  

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