Setting the record straight on 3 common aphasia myths
I think aphasia is one of the most misunderstood medical conditions out there. If you or someone you love are experiencing aphasia, you deserve to know the facts. Today, we’re setting the record straight on 3 common misconceptions about aphasia.
Misconception #1:
Aphasia is a rare condition.
Correction: Estimates suggest over 2 million people are living with aphasia in the United States (National Aphasia Association, n.d.). That is about twice as many people as who are living with Parkinson’s Disease or Multiple Sclerosis in the United States (Marras et al., 2018; Nelson et al., 2019). Does that surprise you? It certainly surprised me!
Many people have heard of Parkinson’s and Multiple Sclerosis, but far fewer have ever heard of aphasia. Why is that??
I can think of 2 reasons. The first one is because aphasia is often not a visible injury. Many people are familiar with physical stroke symptoms like reduced movement in an arm or a leg because it’s something that we can SEE. In contrast, a person with aphasia might have no visible, external sign of injury while still having significant symptoms of aphasia.
The second reason that the public may be less familiar with aphasia is that it’s a difficult condition to explain …especially if you are having communication difficulties! People with aphasia may have trouble explaining what it’s like to have communication difficulties. I suspect the combination of aphasia being less “visible” and being talked about less makes the public less aware of aphasia as a medical condition.
Misconception #2:
Aphasia only affects older adults.
Correction: While it’s more prevalent among older adults, aphasia can affect a person of any age. Young people can experience aphasia if the brain experiences trauma, such as from an accident, stroke, or infection.
I remember working with a stroke survivor with aphasia who was in their 30’s. They asked me, “Am I the youngest person you’ve ever met with aphasia?” They didn’t know anyone else who had aphasia and none of their friends had ever experienced it. What an isolating feeling to think you are the “only” person in their 30’s with aphasia! I told this individual, “No, you’re not the youngest. You’re not alone.”
I’m seeing more and more young people sharing their experience with aphasia recovery on the internet, and I think this is starting to improve awareness!
On a related note, I’m very passionate about increasing awareness of genetic conditions or medical predispositions that can result in strokes or heart attacks early in life. Talk to your doctor if multiple people in your family have had heart attacks or strokes early in life. Ask what YOU can do to lower your risk. It’s really important.
Misconception #3:
If a person with aphasia can’t say it, then they don’t “know” it.
Correction: Just because your loved one can’t SAY a word, doesn’t necessarily mean they don’t “know” it! People who have aphasia are often perceived as not being intelligent. Aphasia affects a person’s ability to use and interpret language, but aphasia does not necessarily affect a person’s memory or thinking skills. This means there are likely many things your loved one is thinking, feeling, and wanting to express that they just can’t say.
I remember working with a family member whose loved one had just experienced a stroke. She came to me quite distressed, saying, “I’m not sure they remember me. They can’t even say my name.”
I had the opportunity to sit down with the family member and the person with aphasia. I wrote the first letter of the family member’s name and provided a “lead-in” phrase (e.g. “Your sister’s name is…?”)
Given these cues, the person with aphasia was able to say their loved one’s name! The family member was SO relieved!
Have you ever made an assumption that your loved one doesn’t know or remember something when they are not able to tell you about it using words?
We probably have all done this at one time or another. It’s important to remember that just because your loved one can’t say something doesn’t mean they don’t know it or aren’t thinking about it!
Conclusion:
So, it turns out there are a lot of people in the US and across the world who are living with aphasia, but there is still limited awareness of what aphasia is within the general public. I think this is (in part) because aphasia is a difficult condition to explain and that it’s not as “visible” as other common symptoms of a stroke or brain injury.
While you might think of aphasia as a condition that affects people in their 60’s or older, aphasia can actually affect people of just about ANY age. It’s very important to talk to your doctor about what you can do to reduce risks of stroke if you have multiple people in your family who have had strokes at an early age.
And finally, if you have a loved one with aphasia, please know that there are likely many things your loved one is thinking and feeling that they can’t say. Give them some time to try to express those things. Look out for ways they might be trying to express them – even through gestures or actions. In the same way, make sure you are letting your loved one know how much you care about them in both your words and your actions.
That’s it for today. Practice early, practice often, and have a great week!
Q: Should you start communication practice for aphasia at home even if you don’t have consistent access to therapy?
A: YES!Are there are things you can start doing now? YES!!
Download our FREE resource to get started:
5 Easy-to-Lead Exercises for Aphasia
References:
Marras, C., Beck, J. C., Bower, J. H., Roberts, E., Ritz, B., Ross, G. W., Abbott, R. D., Savica, R., Van Den Eeden, S. K., Willis, A. W., & Tanner, C. M., on behalf of the Parkinson’s Foundation P4 Group (2018). Prevalence of Parkinson’s disease across North America. Npj Parkinson’s Disease, 4(1), 1–7. https://doi.org/10.1038/s41531-018-0058-0
National Aphasia Association. (n.d.). Aphasia fact sheet. Retrieved January 23, 2025 from https://www.aphasia.org/aphasia-resources/aphasia-factsheet/
Nelson, L. M., Wallin, M. T., Marrie, R. A., Culpepper, W. J., Langer-Gould, A., Campbell, J., Buka, S., Tremlett, H., Cutter, G., Kaye, W., Wagner, L., & Larocca, N. G., for the United States Multiple Sclerosis Prevalence Workgroup (2019). A new way to estimate neurologic disease prevalence in the United States: Illustrated with MS. Neurology, 92(10) 469-480. https://doi.org/10.1212/WNL.0000000000007044
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