Saturday, June 28, 2008

Aphasia: The Great Leveler

cite as:
Shafer, D. N. (2008, June 17). Aphasia: The great leveler. The ASHA Leader, 13(8), 26-27.

by Dee Naquin Shafer

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 (see sidebar), 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."

End Article Logo

Secret weapon in mother’s recovery from a stroke

manda McEwan's recovery from a stroke at the age of just 29 has been aided by an unlikely helper - her six-year-old son, Owen.

Nothing could have prepared Ms McEwan for the shock of having a stroke when she was so young.

But setting out how to deal with the aftermath of such a life-changing event is something that can be eased by adequate preparation.

As well as receiving support from the Chest, Heart and Stroke Scotland's group in Kirkcaldy, Fife, Ms McEwan is helped by Owen as they both learn to read and write.

Her case emerged as professional and voluntary bodies today call on the Scottish Government to do more to help nearly one in five stroke sufferers who are failed by the health service.

Speech therapists and support groups say not enough is done to help people who struggle to communicate after a stroke.

It is estimated that around 15% of the 12,500 Scots who suffer a stroke each year fall through the support net and do not receive adequate help to rebuild communication skills, often leaving them frustratingly cut off from family and the wider community.

Ms McEwan, 35, has made a remarkable recovery after doctors feared she may not survive. Hers is an example of how it should be done, and she receives "amazing" help through her Chest, Heart and Stroke Scotland, support group.

"They are amazing, but so is Owen. He makes me read from word to word as he is learning and he is only . . ." She counts out loud, one to six, before adding "six", an illustration of how she must relearn basic tasks.

The Royal College of Speech and Language Therapists in Scotland, the Stroke Association, Chest, Heart and Stroke Scotland and Speakability have joined forces to make sure everyone has the level of treatment Ms McEwan was given. They want improved recording of such communication disabilities, possibly by introducing a "Scottish stroke care audit".

Without knowing the numbers of stroke victims who have problems talking, planning care is hampered. The campaigners are calling for easier routes for patients to have speech therapy support through clear referral procedures and continuing help for as long as it is needed.

They said the call is supported by the Stroke Association's research in its Lost Without Words report.

Maddy Halliday, director Scotland of the Stroke Association, said: "Experiencing a stroke can have many severe consequences. One of the most common and devastating effects can be the onset of a communication disability.

"Chest, Heart and Stroke Scotland and Speakability provide communication support services across Scotland, and this is greatly valued by people affected by aphasia."

But she added: "Because we don't know the numbers of people affected by a communication disability, we don't know if everyone who needs a service is getting one. Lost Without Words is a call to action to address need and catch those who may be falling through the gaps in receiving this vital support."

The report recommends a clear referral procedure into communication support services as the procedures are at present not consistent.

Chest, Heart and Stroke Scotland chief executive David Clark said: "Amanda's story highlights that speech problems, or aphasia, are the real hidden disabilities after stroke. Being unable to communicate normally is incredibly frustrating and, as in Amanda's case, often affects whole families."

A damaged brain

  • A STROKE occurs when the blood supply to part of the brain is cut off and brain cells are damaged or destroyed.

  • Because the brain controls everything the body does, damage to the brain will affect body functions.

  • It can also affect how we think, learn, feel and communicate.

  • A stroke is sudden and the effects on the body are immediate.

  • While strokes mostly affect people over 65, some 20% are experienced by people under that age.

  • Stroke is the leading cause of severe disability among adults.

  • It is the third most common cause of death, killing three times as many women as breast cancer.