What is Aphasia?

The National Aphasia Association conducted a survey six years ago to find out what people knew about aphasia. Only 8.8% of respondents correctly identified aphasia as a language disorder. The other 91.2% had no clue. It was the recent announcement from actor Bruce Willis' family about his diagnosis that pushed aphasia into the spotlight.

"Aphasia is a generic term used to describe impairment of language," says Dr. William Hu, associate professor and chief of Cognitive Neurology at Rutgers-Robert Wood Johnson Medical School Institute for Health, Health Care Policy, and Aging Research. "It affects the production or comprehension of speech and a person's ability to read or write. It's caused by a brain injury, such as a stroke, brain tumor or infection in the brain. Another form is primary progressive aphasia (PPA)."

Aphasia ranges from mild to severe. Some with aphasia have trouble recalling words or putting sentences together.

"Every once in a while, all of us at one time or another have had the word on the tip of our tongue," Hu says. "If we forget once in a while, there's nothing to worry about. If it happens often, then it's a good idea to talk to your doctor. More severe forms make speaking difficult, so much so that [a person's speech] is hard to understand."

Those with aphasia may be hard to understand, however not being able to process language does not affect one's intelligence.

The main symptoms of aphasia include:

• Difficulty speaking
• Struggling to find the right word
• Using the wrong word or words when conversing
• Having trouble finding the right words or using the wrong words when writing
• Speaking in short sentences
• Saying unrecognizable words

The first step is getting a diagnosis, which usually occurs if you're treated for a stroke, brain injury or brain tumor. During the exam, your doctor will ask questions to observe your language skills. Your doctor will look for:

• How you use grammar
• How you form sounds and letters
• Your ability to understand words and sentences
• How you follow directions

Your doctor may also ask you to look at and describe pictures and name objects. A CT scan, an MRI or a PET scan may be prescribed.

"Treatment is based on the type of aphasia," Hu says. "For instance, someone who had a stroke may benefit from speech therapy. And depending on the severity of the stroke, normal speech can return at any given time."

Someone who has aphasia due to head trauma can recover after successful surgery. For instance, removing a brain tumor or curing an infection in the brain can result in return to normal speech.

PPA occurs in adults in their 50s and 60s. It's a progressive neurodegenerative disease that affects language.

"Not all aphasia is from dementia, but aphasia can be a symptom of dementia," says Claire Sexton, senior director of Scientific Programs and Outreach, of the Alzheimer's Association. "Many people experiencing common dementias like Alzheimer's ultimately exhibit symptoms of aphasia as the neurodegeneration in the brain progresses. Primary progressive aphasia is a form of frontotemporal dementia, with aphasia being a primary symptom."

PPA is not the same as Alzheimer's disease. PPA affects language first; Alzheimer's affects memory first. A study published in the journal Neurology found about 40% of people who have underlying Alzheimer's also have PPA. The study also found memory is preserved longitudinally in PPA associated with Alzheimer's disease.

"After a diagnosis of PPA, be certain to put a good medical team in place," says Darlene S. Williamson, president of the National Aphasia Association.  

She recommends meeting with a neurologist who has experience with PPA. "It often takes some time to get a definitive diagnosis of PPA. It is recommended to directly ask any neurologist if they have experience with this diagnosis."

She also recommends working with a speech-language pathologist who has expertise with PPA.

"Again, ask to be sure your therapist has experience because PPA is a very specific type of aphasia. The treatment must be specific for PPA," Williamson says. "When the aphasia is the result of a stroke, the therapy is aimed at restoring language. In PPA, therapy is aimed at preserving language and putting strategies in place to assist the individual as their language declines. Excellent therapy includes family members and other loved ones and friends who regularly communicate with the individual such that they learn best communication strategies and practices that will support the person's communication needs."

Williamson emphasizes the need to get family involved. "It's an essential piece of the follow up," she says. "Not only does the family need communication strategies, they need education and support from a knowledgeable counselor, and ideally from other families who have experienced this diagnosis. There is hardly anything more valuable than being interconnected with other families who share this experience."

The National Aphasia Association provides families with education, interconnectedness with other families, and professional resources to help them find professionals with expertise in PPA.

If you have aphasia, here are some communication tips:

• Use an iPad or computer to type out what you want to say
• Carry picture cards with words and images
• If possible, draw or write pictures or words on a blank pad
• When talking, speak slowly and try to stay calm
• Carry a card to share with strangers to let them know you have aphasia and to know what aphasia means

If you have a friend or family member with aphasia, try the following:

• Speak in short simple sentences so the person with aphasia will understand you
• When providing directions, break each one down into a single step
• Don’t yell
• Don’t talk to someone as if they are a child
• Don’t ask open-ended questions such as, “What would you like for dinner?” Present that person with a choice: Would you like an apple or a banana?
• Be patient and caring

Watching a close friend or family member struggle with language is a challenge. It's an emotional time, not only for the person you care for, but for yourself. If necessary, talk to a therapist and take care of yourself.