The aphasia was pushed into the public discourse by the news of Bruce Willis’ diagnosis. For many it was the first time they had heard of the disorder. Aphasia expert, Jamie Lee, professor of communication sciences and disorders, fills in some of the gaps in media coverage and provides valuable insights into aphasia and available support.
What is aphasia? How do they affect people differently?
Lee: Aphasia is an acquired communication disorder that disrupts a person’s ability to process and access language. Aphasia can impair language functions needed to speak, understand, read and write. Some people describe aphasia as the phenomenon of the tip of the tongue where one knows the word but cannot find it.
Those of us in the aphasia community – who study aphasia and work with people with aphasia – were saddened to hear of Bruce Willis’ diagnosis. It has also become clear from the recent media coverage of the case that there is a need for more dialogue and education about the different types of aphasia.
Although relatively rare, aphasia can result from a neurodegenerative disease, known as primary progressive aphasia or PPA. Language abilities are affected and worsened over time. Because of the underlying brain disease, cognitive skills such as memory and awareness are also affected.
The most common type of aphasia is caused by an acute brain injury such as a stroke or head trauma. In these cases, aphasia appears suddenly. While the person has difficulty communicating, it is important to know that aphasia occurs not affect intelligence. A person with aphasia is still able to make decisions and participate in their lives. Although there is no cure for aphasia, people do recover, regain their language abilities, and improve their communication, particularly with speech and language therapy.
More than two million people in the United States have aphasia. Why is there no awareness of this disorder?
Lee: That’s a great question. The National Aphasia Society 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 due to the inability of people with aphasia to advocate for themselves or educate their communities due to the difficulty of accessing language. Language forms the basis of how we communicate, share knowledge, communicate with others, and tell our stories. It is helpful for public figures to come forward with a diagnosis of aphasia because it really helps raise awareness. People with aphasia are the real experts, but we rarely hear their voices.
Your research looks at how to improve the quality of life for people with aphasia. Tell us more.
Lee: Aphasia is a state of extreme isolation. After an initial period of support, we hear friends stop visiting. Relationships deteriorate. Even close family members do not know how to communicate with their loved ones. One of the best ways we can improve the quality of life for people with aphasia is by teaching their friends and family how to support communication. There are tools and techniques that help aphasic people communicate their ideas and ways a communication partner can reduce the frustration of aphasic people. Even something as simple as typing in keywords, crafting a question so the person can answer “yes” or “no,” and using pictures can be helpful. These are all techniques we used in JMU’s aphasia conversation group.
What is an aphasia conversation group and how can people with aphasia resist isolation to stay in touch?
Lee: Before the pandemic, we facilitated a weekly group for people with aphasia in the community at the Speech-Language Clinic at JMU. The whole idea was to bring people with aphasia together and provide a supportive environment where they can communicate with each other and have a conversation about everyday topics. For some, joining the group was the first chance they had to meet another person with aphasia. This alone can be very impressive.
Many aphasia groups across the country have gone online as a result of Covid-19 precautions. It turns out to be a great way to engage more people with aphasia who may not be able to travel or who don’t have an aphasia center nearby.
One of my research interests has been to consider the use of electronic Forms of communication for people with aphasia. Texting is pervasive in our community and a major way to stay in touch with friends and family. I’m interested in looking at ways we can help support texting in people with aphasia with the long-term goal of helping them maintain and strengthen their social bonds. My research focuses on examining patterns within the text messages of people with aphasia to ultimately determine texting communication support.
I just started a recent text-based version of the Friend Messenger. How did the program work and what are you still hoping to learn?
Lee: Our new research program brings together students at JMU studying communication sciences and aphasia disorders for a text messaging project. Participants with aphasia have the opportunity to practice reading and generate 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 shared a few “Text Buddy” pairs, but so far, the experience has been very positive for both students and participants with aphasia.
Although the news frenzy about aphasia has faded, the turmoil remains. What resources are available to those living with aphasia in our community?
Lee: We offer speech and language services free of charge at the JMU Speech-Language Clinic. Assessment and treatment by our graduate students are provided by clinicians who are supervised by licensed clinical speech-language pathologists.
The National Aphasia Association is a great educational resource that allows a person to search for aphasia services and support by region.
Aphasia Access is another great resource with training videos on how to provide communication access for people with aphasia.
Finally, virtual connections via the aphasia recovery connection host a variety of online aphasia groups (7 days a week!)