Results of a Needs Survey
Originally Published: 1988
Reviewed 2005

"So many people don't even know the word aphasia, much less what it does to you."

What is Aphasia?
Aphasia is a speech and language disorder that may result from a stroke, head trauma or other neurological condition. All people with aphasia experience some degree of difficulty talking and comprehending spoken language. Many with aphasia have problems reading, writing and calculating as well. Although symptoms may vary, what is consistent is the difficulties and frustrations that people with aphasia and their families encounter in dealing with communication impairment.

What is the National Aphasia Association?
The National Aphasia Association (NAA) is a non-profit organization dedicated to meeting the needs of people with aphasia and their families. Our goals are to raise public awareness of aphasia and its impact on the person, the family, and society; providing a public resource for information on current research and clinical issues in aphasia, and facilitating the development of community programs designed to meet the specific needs of people with aphasia and their family members.

How prevalent is aphasia?
There are approximately twice as many people in the United States who have aphasia than there are individuals with Parkinson's Disease.

Yet the general public knows very little about aphasia. Of the estimated 400,000 strokes which occur each year, 80,000 result in aphasia. Approximately one million people, or one out of every 275 adults in the United States, have some type of aphasia. Ninety percent of those with aphasia who participated in this survey feel the public's awareness of this disability is minimal.

"There's a need for public education --- the aphasic is the same person as before and should be treated as such. Surprisingly, many health care professionals are not sensitive or knowledgeable about aphasia."

Who has aphasia?
An NAA survey revealed the following general profile:

• They are likely to be elderly, but aphasia can occur in all age groups.
• The number one risk factor for aphasia is hypertension and its connection to stroke.
• The incidence of aphasia was equal for males and females.
• They come from all races, educational and socio-economic backgrounds.

What are the causes of aphasia?
In this survey, they included stroke and head injury related to motor vehicle accidents, brain tumor, and other neurologic illness.

What is the outcome of aphasia?
Approximately 50% of the surveyed individuals had speech-language therapy for over a year. However, 72% are unable to work. Those who have re-entered the work force reported taking positions with minimal demands because of language limitations.

About 70% of those surveyed felt that people avoid contact with them because of difficulty with communication. In the words of one respondent, "We need to feel welcome to visit people and we do not. Even several family members make us feel as outsiders. We have no visitors...and lead very lonely lives."

Ninety percent of people with aphasia felt they were isolated. They said:

• "We found ourselves left out of things we'd enjoyed before."
• "I think I could have been spared a lot of unnecessary emotional strain had I had some kind of support system."
• "Clubs for patients and families would be a big helo; we would not feel so isolated."
• "People, supposedly close friends, ignore my husband who is aphasic."

Few people with aphasia return to the lives they had before. Often they must learn to live with a permanent communication disorder, and the frustration that results.

"I find many times, I'm treated as if I'm not there."

What do people with aphasia say about their needs?
Over 60% of the people with aphasia surveyed indicated that more information about aphasia was needed, both for the general public, and themselves. They reported needs for specific information such as the different types of aphasia and what can be done to help. They also felt health care professionals needed to be better informed about resources for people with aphasia and their families.

"I don't know the amount of people who understand aphasia, but I have run into about 10 people who somewhat understand it in 12 years."

"I was amazed at how little help was available. . ."

Individuals with aphasia need help from other people. Tremendous personal and social adjustments are necessary after someone acquires aphasia. Though people with aphasia have difficulty expressing themselves, amny are full aware of their problems.

Not being able to function as before leaves many individuals with aphasia frustrated and angry. Moreover, many return to families who are not prepared for the abrupt emotional, physical, and psychological changes that occur with aphasia. Family members themselves feel helpless, hopeless, and guilty. Both people with aphasia and family members need immediate attention to help cope. Strategies for coping can be shared in family group meetings and Aphasia Community Groups at the local level.

The National Aphasia Association continues to serve the needs of those affected by aphasia. However, to meet the vast number of problems encountered by people with aphasia, it needs help from local, state, and national organizations. This means that for the NAA to accomplish its goals, you, the public, must get involved.

How can you help?

• Find out more about aphasia through the NAA website.
• Contact your NAA State Representative
• Get involved involved with the nearest Aphasia Community Group or start a new one if there is none nearby.
• Support the NAA