Bruce Willis’ family announced just a week ago that the film star, known for his roles in classics like “Pulp Fiction” and “Die Hard,” would be stepping away from acting after he was diagnosed with aphasia.
Most people in the U.S. haven’t heard the term “aphasia,” according to the National Aphasia Association. But you likely know someone who has this common communication disorder. Or, you might know that there is a connection between brain damage, strokes and difficulty communicating.
Senior speech-language pathologist Heather Coles, M.A., CCC-SLP has treated a wide range of communication disorders in her 25 years at the University of Rochester Medical Center and specializes in aphasia. She addresses common questions and misconceptions about this condition.
What is aphasia?
Aphasia is a disruption of language that typically results from damage to areas of the brain that support communication related to how we express ourselves and the words we use. It can also affect how we understand words, sentences and conversation, and it can affect reading and writing. It does not typically affect cognition or intellect.
Strokes are the most common cause. We also see people who have brain tumors, people who have had a resection surgery to remove a brain tumor, and individuals who’ve had traumatic brain injuries.
There are two main types of aphasia. The first is called sudden onset, which is caused by damage to the brain, usually in the left hemisphere. The other is primary progressive aphasia (PPA), a rare syndrome in which an individual experiences a gradual worsening of communication and language over time, due to degeneration of tissue in parts of the brain that control receptive and expressive language. The exact cause for PPA is not known.
What can a patient expect when being evaluated and treated for aphasia?
With a sudden onset of aphasia, we conduct a thorough evaluation of the individual’s spoken and written communication, understanding and reading. This can include evaluating how well you can name common items or things in your environment, repeat phrases, list items in a category, describe a picture, answer “yes or no” questions, or follow directions. From there, we determine strengths and challenges, set goals with the individual, and come up with a treatment plan using evidence-based treatment techniques.
Individuals with PPA might work with a speech pathologist to slow the progression of aphasia, and speech pathologists can provide communication support when the disease is progressing. For example, in a speech therapy session, you might create visual scene displays to plan for communicating in certain situations, such as going to the nail salon and picking the manicurist you want to see, or asking for a certain color of nail polish.
What are some common misconceptions about aphasia?
Aphasia is not a loss of intellect; it has more to do with how we express language through speaking and writing, and how we understand language through listening and reading. If you have trouble communicating and expressing yourself, people make assumptions that there’s something wrong with your thinking, and that may not be the case at all. You may have trouble getting out the words that you want — that’s one of the hallmark characteristics of aphasia — but there’s nothing wrong with your thinking.
There is also a lack of knowledge about aphasia among the general public. While Bruce Willis’ diagnosis is difficult news, I do believe it’s helping to increase awareness. The word “aphasia” itself is not common, but the condition itself is. More than 2.5 million people are living with aphasia in the U.S.
What are some tips you share with caregivers for communicating with a loved one who has aphasia?
- Be patient. Give the person who is communicating lots of time, without interrupting them.
- Speak slowly in simplified language, with lots of pauses to give a person with aphasia time to process what you’re communicating.
- If someone has trouble with a word that might feel like it’s on the tip of their tongue, let them get out as much information as they can before you help.
- Try not to ask too many questions. This can overwhelm the other person. Instead, use supports like choices of words, pictures, or having the person gesture.
Is there anything else you’d like people to know?
When you come to speech therapy for aphasia, we know that you have knowledge; what we do here is try to help you communicate that knowledge. We understand that you’re still the same smart, knowledgeable person you’ve always been.