Increasing awareness about aphasia

Aphasia was thrust into the public discourse with the news of Bruce Willis’ diagnosis. For many it was the first time hearing about the disorder. Aphasia expert, Jaime Lee, a professor of communication sciences and disorders, fills in some gaps in media coverage and offers valuable insights into aphasia and the support available.  

What is aphasia? How does it affect people differently? 

Lee: Aphasia is an acquired communication disorder that disrupts a person’s ability to process and access language. Aphasia can impair the language functions needed for talking, understanding, reading and writing. Some people describe aphasia as that tip of the tongue phenomenon where one knows the word, but can’t find it. 

Those of us in the aphasia community — who study aphasia and work with people with aphasia — were saddened to hear about Bruce Willis’ diagnosis. It has also become clear with recent media coverage about the condition that there needs to be more conversation and education about the different types of aphasia.

While relatively rare, aphasia can be caused by a neurodegenerative disease, known as Primary Progressive Aphasia or PPA. Language abilities are affected and worsen slowly over time. Because of the underlying brain disease, cognitive skills like memory and awareness, are also impacted.

The more common type of aphasia is caused by an acute injury to the brain such as stroke or head trauma. In these cases, aphasia comes on suddenly. While the person has trouble communicating, it is important to know that aphasia does not affect intelligence. A person with aphasia is still able to make decisions and participate in their life. Though there is no cure for aphasia, people do recover, regain language abilities, and improve their communication, particularly with speech-language therapy. 

There are more than 2 million people in the United States living with aphasia.  Why is it that there is so little awareness of the disorder?    

Lee: That’s a great question. The National Aphasia Association conducted a nationwide survey a few years ago and reported that only 8.8% of respondents knew what aphasia was and were able to correctly identify it as a language disorder. This lack of public awareness is likely because people with aphasia are not as able to advocate for themselves or educate their communities because of their difficulty accessing language. Language forms the basis for how we communicate, share knowledge, connect with others and tell our stories. It’s helpful when public figures come forward with an aphasia diagnosis because it really does help raise awareness. People living with aphasia are the true experts, but it’s seldom that we hear their voice.

Your research looks at how to improve the quality of life for people with aphasia. Tell us more. 

Lee: Aphasia is extremely isolating. After an initial period of support, we hear that friends stop visiting. Relationships deteriorate. Even close family members don’t know how to communicate with their loved one. One of the best ways we can improve quality of life for people with aphasia is to teach their friends and families how to support communication. There are tools and techniques that help people with aphasia communicate their ideas and ways the communication partner can decrease the frustration of the people with aphasia. Even something as simple as writing key words, phrasing a question so the person can answer “yes” or “no,” and using pictures and images can be helpful. These are all techniques we’ve used in our JMU Aphasia Conversation Group. 

What is an aphasia conversation group and how can people with aphasia combat isolation to stay connected?  

Lee: Prior to the pandemic, we facilitated a weekly group for people with aphasia in the community at the JMU Speech and Language Clinic. The whole idea was to bring people with aphasia together and provide a supportive environment where they could connect with one another and have conversation about every day topics. For some, coming to group was the first opportunity they’d had to meet another person with aphasia. That alone can be very impactful.

Many aphasia groups across the country transitioned online as a result of Covid-19 precautions. It’s turned out to be a great way to involve more people with aphasia who may not be able to travel or who do not have an aphasia center nearby.

One of my research interests has been to look at the use of electronic forms of communication for people with aphasia. Texting is pervasive in our society and a major way that we stay connected with friends and family. I’m interested in looking at ways we can help support texting in people with aphasia with a long-term goal of helping them maintain and strengthen their social connections. My research is focused on examining patterns within text messages of people with aphasia to eventually identify communication supports specific to texting.

You’ve started a modern, text-message based version of a pen pal program. How has the program worked and what do you still hope to learn? 

Lee: Our new research program pairs students at JMU studying communication sciences and disorders with people with aphasia for a texting pen-pal project. Participants with aphasia have an opportunity to practice reading and generating text messages and our students have a unique learning experience where they have the opportunity to develop a relationship with a person with aphasia. We only had a few “Text Buddy” pairs participate, but so far, the experience has been very positive for both the students and the participants with aphasia.

Though the news frenzy about Aphasia has died down, the disorder remains. What resources are available for those living with aphasia in our community? 

Lee: We provide speech and language services free of charge at the JMU Speech-Language Clinic. Assessment and treatment is provided by our graduate student clinicians supervised by licensed clinical speech-language pathologists. 

The National Aphasia Association is a terrific educational resource that allows one to search for aphasia services and support by region.

Aphasia Access is another great resource with training videos about how to provide communication access to people with aphasia.

Lastly, Virtual Connections via the Aphasia Recovery Connection hosts a variety of online aphasia groups (7 days a week!)