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June is National Aphasia Awareness Month
Educational efforts focus on support resources
Education about aphasia is needed for both the general public and health care professionals. While most people have not heard of the word "aphasia," when the disorder is described, they know what it is or know someone who has had it, says Ellayne S. Ganzfried, MS, CCC-SLP, executive director of The National Aphasia Association, based in New York City.
Aphasia impairs language and affects the production or comprehension of speech, as well as the ability to read or write. It is a result of injury to the brain, usually from a stroke, but also from head trauma, brain tumors, or infections.
Part of the educational efforts of The National Aphasia Association is to help people learn the word that is attached to this communication impairment, says Ganzfried.
Aphasia describes an impairment of the ability to communicate and not an impairment of intellect. Yet often people react as if the person is psychologically ill, drunk, or mentally unstable, explains Ganzfried.
"The person with aphasia is perfectly intelligent, and they know what they want to say - but they are just not able to retrieve the words. It is extremely frustrating for everyone, including the person with aphasia, their families, and all the people who interact with them," she adds.
A second aspect of the education is to make people with aphasia, their families, their support system, and health care professionals aware of the resources available to help people with this impairment recover lost skills to whatever extent possible, to help them compensate for the skills that won't be recovered, and to minimize the psychosocial impact of the language impairment.
"We do a lot of community outreach and education; that is a big focus," says Ganzfried.
As part of these efforts, the association has made the month of June National Aphasia Awareness Month. The campaign is to heighten public awareness.
Aphasia affects more than one million Americans. One in 250 people will have aphasia, and 25% to 40% of all stroke victims will have aphasia, says Ganzfried.
"It is a big issue for a lot of people. It impacts people's vocational choices and their social choices, causing them to become socially isolated. They don't feel comfortable communicating, or people don't understand them. There is a lack of sensitivity, so it is critical for people to be more aware of it," explains Ganzfried.
It is particularly important that emergency workers are aware of aphasia. That is why the association created an awareness training program for emergency responders with grant money from the Christopher Reeve Foundation. Currently, they are training police officers, firefighters, and emergency medical technicians in New York, New Jersey, and Connecticut and will make the program nationally available. Ganzfried says they have trained the entire New York City police department.
This training would work in hospital emergency departments, rehabilitation centers, and long-term care facilities, she adds.
A sticker is available from the association for people with aphasia to place in their car or house window. It was created after a man with aphasia was stopped by a traffic officer because the taillight on his car was broken. The officer thought the man was drunk, and the resulting encounter was very demeaning.
Encounters with health care professionals can be difficult, as well, if steps are not taken to overcome barriers to communication.
To communicate effectively, first eliminate all background noise, such as other people talking or television. While it is important not to talk down to a person with aphasia, sentences must be simplified and key words emphasized. Using various modes of communication in addition to speech is helpful, says Ganzfried. These might include writing, drawing, gestures, and facial expressions.
"People with aphasia need extra time to get their message across, because they can't find the word," she says.
In addition, health care professionals must confirm that the person with aphasia has truly understood, because frequently people with this condition will answer "yes" but not mean it.
Sometimes forms are too complicated and may need to be modified by adding graphics. Several pages of reading material would not be helpful for people with aphasia.
A speech pathologist could work with a patient education coordinator to help modify forms and assist with the patient education process, says Ganzfried.
To assist people diagnosed with aphasia, it's a good idea to have information on the condition available in the emergency department, as well as in the social work department. Ganzfried says there is a lot of information on the association web site [www.aphasia.org] designed to help people with aphasia, their caregivers, and health care professionals.
A registry of aphasia community support groups is available online, so people with this condition and their family members will have the support they need. Ganzfried says insurance usually runs out before rehabilitation is complete, and support groups serve as a way for people with aphasia to practice speech in a very comfortable and supportive setting. There also are resources to help people start support groups.
Also available is a network of representatives throughout the country that includes health care professionals, as well as people with aphasia and their families who volunteer their time to respond to questions within their geographic area. The people within this network are able to connect people to resources within their own communities.
A multitude of patient and family education materials can be found on the web site, as well as a bill of rights for people with aphasia. This document states that people with aphasia have the right to be told that aphasia is part of their diagnosis and given access to outpatient therapy deemed appropriate by a qualified speech-language pathologist, among other rights. The complete document is online.
People with aphasia can continue to participate in most of the activities they once enjoyed, but often it requires that those around them are taught tips for effective communication. Sometimes new activities that don't require extensive speech will need to be developed, such as attending the symphony or gardening. Ganzfried says people often find new ways to express themselves, such as with photography.
"No two people with aphasia are the same. Some people have difficulty speaking, while others have more difficulty understanding. Sometimes it is very mild, and you might not even notice it. And in other cases, it can affect everything including speech, reading, writing, and listening. You have to look individually at each person and never assume because someone is speaking with you fluently that what they are saying is going to make sense and they understand what you are saying," says Ganzfried.
For more information about aphasia and resources for educating patients, their families, and health care professionals, contact:
Ellayne S. Ganzfried, MS, CCC-SLP, Executive Director, National Aphasia Association, 350 Seventh Ave, Suite 902, New York, NY 10001. Telephone: (800) 922-4622 or (212) 267-2814. E-mail: Ganzfried@aphasia.org.