Aphasia: It's Never Too Late to Offer Patients Hope
According to current estimates, 1 in 250 persons in the United States--about 1 million total--struggles with aphasia.1 Because the inability to communicate clearly affects not just the patient, but also everyone around him or her, it becomes easy to appreciate aphasia's significant ripple effect.
Aphasia is an end-product of left brain injury. About two thirds of all cases of aphasia--especially those occurring in elderly persons--are caused by stroke. Most of the remaining third can be traced to head trauma, infection, or tumors.1 A small percentage of persons have primary progressive aphasia, a slowly worsening form of aphasia that is unrelated to stroke, trauma, tumor, or infection.2
Although aphasia does not compromise a person's intellect, it can affect multiple avenues of communication. There are several different types of aphasia, depending on the location of brain injury (Table 1).3 Understanding these helps differentiate aphasia from other neurologic conditions with which it can be easily confused (Table 2).3
For about half of persons, aphasia is transient, resolving completely and spontaneously within hours or days. When symptoms persist for longer than 2 to 3 months--as is often the case for the remain- ing half of those affected--complete recovery is unlikely. However, patients can improve with prolonged treatment, even when aphasia begins years after symptom onset.4,5
The foundation of treatment is speech therapy, a behavioral approach in which a speech-language pathologist (SLP) teaches patients how to communicate using their remaining skills. For speech therapy to work best--and results are not guaranteed--patients must be motivated and have some capacity for learning. Their families and/or significant others should be involved as well, since they can help the patient with "homework" between therapy sessions and work with the patient to create the communications framework that will be followed at home.
The SLP also helps patients to develop compensatory methods of communication, including gesturing, use of pictures and drawings, and writing, to convey information. The cooperation of others is essential to the success of compensatory communication. Focusing on the patient, allowing extra time, and taking steps to reduce unnecessary noise or distractions while the patient is trying to communicate reduce frustration for everyone involved.6
Electronic/computer devices are available that can help supplement individualized, personal work with a therapist. These include computers for at-home language practice, devices to enhance communication, and products to help persons adapt to their home, social, and work environments. Resources are available to help determine which products are most suited for the patient's abilities.7
A SAMPLING OF PROGRAMS
There are various aphasia programs throughout the United States, each with its own approach to patient care and recovery.
The MossRehab Aphasia Center, part of the Albert Einstein Healthcare Network of Philadelphia (www.einstein.edu/yourhealth/ physicalrehab/aphasia), offers both acute and advanced clinical therapy programs. The acute program provides skilled, individualized treatment to persons during their first months of aphasia. The advanced program is for patients who have had aphasia for 6 months or longer. Treatment is short-term and focuses on a specific communication skill, such as speaking, writing, or reading. Patients are required to commit to long-term practice at home.
Computer-based training is an integral part of both the acute and advanced programs offered at MossRehab. MossTalk Aphasia Therapy Software, developed by MossRehab researchers and clinicians, uses audio prompting, audio-visual feedback, and customizable exercises to help patients with aphasia and other language disorders rebuild their communication skills. The software will run on a personal computer.
The Aphasia Center of California (www.employees.org/~accadmin) was the first independent aphasia center in the United States. Roberta Elman, PhD, CCC-SLP, was inspired to start the program after she completed a study showing that persons with aphasia demonstrate dramatic linguistic and psychosocial improvement even when treated 5 years after a stroke.8 "At our center, we try to undo some of the psychological damage that occurs when patients are told they cannot improve after 6 months of symptoms. Our patients make impressive changes, even after years of aphasia." Her program provides services that include weekly communication treatment groups, Internet-based classes, individual speech-language pathology sessions, a monthly educational series on stroke, and a caregiver's group. Fitness/relaxation and art classes are available at no charge.
"Our patients are free to pick whatever classes and services they want," explained Elman. One unique offering is a Book Club (reading and writing) at which participants meet weekly to discuss selected readings. Elman plans to make the supplementary materials used in this activity available online to professionals at other treatment centers. The Aphasia Center of California also provides community outreach, including information about local services for patients and about aphasia education/training for health care professionals, individuals, and organizations.
The Adler Aphasia Center (www.adleraphasiacenter.org) is unique from other centers in taking a psychosocial approach to recovery. "We're a hope center," explained Karen Tucker, executive director. "Patients are often told that they are not going to get better. This robs them of the hope that there is a tomorrow. Our members aren't willing to accept that. We tell them that having aphasia is not the end--it's the start of a long process. They'll have to work at it, but we help them realize what's possible."
The center does not offer structured speech therapy, although SLPs are on staff. Instead, the center helps patients develop functional communication skills through participation in discussion groups, lectures, workshops, social events, art and music classes, exercise classes, and computer-based programs. Support is also available for caregivers, family, and friends. "Everything we do is member-driven," explained Karen. "Our members tell us what they'd like to work on, and we help them. This approach works well--I've seen improvement in all of our members, whether they've had symptoms for a month or 5 years. The environment here, especially our peer groups, provides a safe environment where people can try to build their communication skills without feeling embarrassed."
The Aphasia Support Group, based at Greenwich Hospital in Greenwich, CT, is led by a speech pathologist and features periodic guest speakers. The monthly meetings offer opportunities for persons with aphasia to share experiences and to communicate in a supportive environment. Family members are welcome to attend. The program is offered free of charge.
The Aphasia Treatment Program (ATP) offered at the University of California, East Bay, provides 6 hours of group treatment and 2 hours of socialization/lunch time weekly. Jan Avent, PhD, CCC-SLP and program director, described the Cooperative Group Treatment program, which she developed. "A clinician teaches 2 persons with aphasia to be 'clinicians.' They learn how to cue each other, critique the treatment, and customize it to improve results. It's a favorite with our patients." Patients at ATP also can participate in a reading and writing group, a conversation group, and a community group, in which patients choose a project to work on together. "We focus on evidence-based treatments and provide pre- and post-treatment testing to track progress. That way, we can monitor improvements and make recommendations for future treatment," Avent said.
The University of Michigan (www.umich.edu) is the only institution to offer a residential aphasia program (RAP). The RAP, based in Ann Arbor, MI, is a 6-week program offered 8 times a year to groups of 12 to 15 patients. Participants receive 15 hours of individual therapy, 5 hours of group therapy, and 3 hours of computer-assisted training each week. The program also offers 1- and 2-week intensive programs targeted at specific areas of language deficit, music and art therapy, and such social activities as weekly dinners and group outings. "We want our patients to take what they learn here and use it when they go home," said Joanne Marttila Pierson, PhD, CCC-SLP, associate director of the program.
BARRIERS TO CARE
Reimbursement is always a concern for persons dealing with aphasia. Third-party reimbursement for speech-language therapy usually expires long before the patient has recovered sufficiently to manage independently or with help from family and friends. Also, third-party reimbursement is typically available only for the first few months that the person is aphasic, even though persons with aphasia can benefit from treatment years after the onset of symptoms.
Patients should be encouraged to join groups that provide social interaction, information, and support. They should look for university-run speech clinics, which provide individualized services from student clinicians (supervised by a licensed SLP) at a reduced rate. Furthermore, they should investigate opportunities to participate in university and/or hospital-based research studies.
Information about studies is available from the American Speech-Language-Hearing Association (phone: 800-638-8255). Patients should also be encouraged to take advantage of computer-based rehabilitation programs.
Financial issues are not the only barriers to progress for patients with aphasia. Education is another, for both patients and those around them. As Karen Tucker explained, "I've noticed that nobody tells persons with aphasia what to expect once they're discharged from the hospital. This can increase their depression and frustration." Other SLPs agree. Roberta Elman noted, "Persons with aphasia have not lost their intelligence. Yet they're often treated like retarded citizens by others. These people deserve respect." Aphasia awareness, and education about how to communicate with aphasic persons, would benefit everyone, including such emergency response personnel as EMTs, firefighters, and police officers.6
Personal issues can impede a patient's progress. Losing the ability to communicate causes grief, anger, depression, and frustration. Knowing that help is available, becoming proactive about recovery, overcoming isolation by participating in peer groups and activities, and getting support from family, friends, and coworkers can help persons along the road to recovery.
SOURCES OF HELP AND INFORMATION
SLPs are the principal resource for helping patients learn communication skills. They can work with the patient regularly or, if reimbursement or finances are an issue, at longer intervals. The American Speech-Language-Hearing Association offers an online service, "Prosearch," that provides a list of local certified audiologists and SLPs. The patient or a family member might also consider getting help from a university-based speech-language department or clinic, which will generally offer services at a less expensive rate than a private practitioner.
The National Aphasia Association (NAA) is an organization dedicated to reconnecting aphasic persons with their communities through initiatives aimed at public education, development of local resources, and patient advocacy. Currently, the NAA is the only national organization that is committed solely to addressing the needs and rights of persons with aphasia (see "The Aphasia Bill of Rights"). The NAA Web site, www.aphasia.org, lists a directory of local support groups and includes a host of resources, including The Aphasia Handbook, for patients, families, caregivers, and interested members of the public. *
1. National Aphasia Association. Do you know the facts? Available at: www.aphasia.org/ NAAquiz.html. Accessed December 16, 2005.
2. Le Rhun E, Richard F, Pasquier F. Natural history of primary progressive aphasia. Neurology. 2005;65:887-891.
3. Aphasia Fact Sheet. Available at: www. aphasia.org/NAAfactsheet.html. Accessed December 16, 2005.
4. Holland AL, Fromm DS, DeRuyter F, Stein M. Treatment efficacy: aphasia. J Speech Hear Res. 1996;39:S27-S36.
5. Aftonomos LB, Appelbaum JS, Steele RD. Improving outcomes for persons with aphasia in advanced community-based treatment programs. Stroke. 1999;30:1370-1379.
6. Will MA, Peters JF. Law enforcement response to persons with aphasia. The Police Chief. 2004; 71(12). Available at: http://www.policechiefmagazine.org/magazine/index.cfm?fuseaction= displayarch&article_id=465&issue_id=122004. Accessed December 16, 2005.
7. National Aphasia Association. Technology resource information. Available at: www. aphasia.org/NAAtechnology.html. Accessed December 16, 2005.
8. Elman RJ, Bernstein-Ellis E. The efficacy of group communication treatment in adults with chronic aphasia. J Speech Lang Hear Res. 1999; 42:411-419.
The Aphasia Bill of Rights
The Board of Directors of the National Aphasia Association (NAA) recently passed the Aphasia Bill of Rights, a document that specifies the information and services that aphasic persons need to conduct their lives. The NAA plans to present this formally at their fifth biannual "Speaking Out" conference, which will be held from June 15 to 17, 2006, in Boston. (Conference details are posted on the NAA's Web site: www.aphasia.org.) Here are some excerpts from the Bill of Rights:
PEOPLE WITH APHASIA HAVE THE RIGHT TO . . .
• Be told, as soon as it is determined, that they have aphasia. This information should be conveyed both orally and in writing, preferably by a qualified speech-language pathologist (SLP). Patients should also be offered an explanation of the meaning of aphasia.
• Be provided, upon release from the hospital, with written documentation that aphasia is part of their diagnosis.
• Be informed, orally and in writing, about local resources available to them. This includes local aphasia community groups, as well as the NAA.
• Have access to outpatient therapy to the extent deemed appropriate by a qualified SLP.
• Give their informed consent in any research project in which they are participating.
• Demand that accrediting health care agencies and health care facilities establish requirements for, and competency in, caring for people with aphasia.
Treatment programs help persons with aphasia find a voice
Ample evidence from the literature supports the value of treating persons with aphasia, regardless of when therapy begins after symptom onset.4 This appears to be true, whether that treatment is delivered in an academic/research or clinical setting.
In a landmark study, Aftonomos and colleagues5 evaluated the efficacy of aphasia treatment delivered in a community-based setting. Their group of 60 patients represented all types of aphasia, impairment levels, and symptom durations. Each patient received an average of 41 treatment sessions, delivered at 1 of 2 comparably managed and equipped programs. Therapy consisted of individualized sessions with a speech-language pathologist plus home- and community-based self-directed practice and activities. Patients were released from the program when they achieved a functional plateau, ran out of funding, or had conflicting medical problems.
The results of the study showed that patients' mean performance scores improved significantly--from 6.6% to almost 20%--in response to treatment assessed at both the impairment and functional communication levels. All program participants improved comparably, regardless of aphasia status (acute vs chronic), severity of involvement at the start of care, type of aphasia, functional level, or treatment center. There were no significant differences in results between patients who were in the acute or the chronic stages of aphasia at the time of treatment.
Tips for communicating with aphasic persons
• Get the person's attention before trying to speak.
• Keep the communication simple but adult, and repeat statements when necessary.
• Simplify sentence structure and speak slowly.
• Keep your voice level normal and emphasize key words.
• Augment speech with gestures and visual aids when possible.
• Give the person time to talk and respond. It may take the person some time to get through a sentence.
• Avoid finishing the person's sentences.
• Use all types of communication, such as gesturing, writing, and drawing, and try to use yes or no responses for questions that don't need comprehensive answers.
• Be mindful that the person may have trouble understanding you, so confirm his or her answers to your questions.
• When possible, eliminate distracting noise such as that from a radio or television.