Aphasia might be the biggest condition you’ve never heard of. Here’s why it matters
This post originally appeared on News @ Northeastern. It was published by Molly Callahan.
Bruce Willis is stepping away from acting after being diagnosed with aphasia, a condition that’s “impacting his cognitive abilities,” his family announced recently.
The news represents the beginning of a long journey for Willis and his family. Researchers who study the neurological condition also hope that its occurrence in the public figure will bring about broader awareness of the disorder for the millions of people who suffer from it.
“More than 2 million Americans have aphasia. It’s more prevalent than Parkinson’s disease, multiple sclerosis, muscular dystrophy, or Lou Gehrig’s disease. And yet, most people likely don’t know what it is,” says Erin Meier, director of The Aphasia Network Lab at Northeastern, and an assistant professor in the Department of Communication Studies and Disorders in the Bouvé College of Health Sciences.
Aphasia is an acquired neurological communication disorder that affects people’s ability to understand or express language, or both, Meier says.
And indeed, relatively few people are aware of the condition. A 2020 survey by the National Aphasia Association, a nonprofit organization that advocates for people with aphasia and their caregivers, found that more than 86 percent of people in the United States have never heard the term aphasia before.
The disorder is usually brought on by a stroke—which happens when blood supply to part of the brain is disrupted, preventing brain tissue from getting oxygen, but can also be the result of a tumor or a traumatic brain injury. When damage occurs in the parts of the brain that process language, it can result in aphasia.
Aphasia presents differently in different patients, Meier says, and can range in severity. It may affect a person’s written or spoken language, their understanding of written or spoken language, or both.
Global aphasia is the most severe, and is used to describe patients “who can produce few recognizable words and understand little or no spoken language,” according to the National Aphasia Association. People with global aphasia can neither read nor write.
Anomic aphasia is the least severe. In patients, it manifests as a persistent inability to find the words for what they’re talking about, particularly the relevant verbs and nouns, according to the association.
Some patients, however, have a neurodegenerative form of aphasia, known as primary progressive aphasia (PPA), that develops more slowly, Meier says. In these patients, the parts of the brain responsible for speech and language gradually atrophy.
Willis’ family didn’t explain the cause of his aphasia (or how severe it is), but the cause is an important factor in his, or any patient’s, outlook with the condition, Meier says.
The six months after a stroke, for example, is a critical time for speech therapy, she says. And while not everyone with post-stroke aphasia recovers, their outlook is generally good. In contrast, people who have primary progressive aphasia typically have symptoms that get progressively worse, not better.
“The goal of therapy in patients with PPA is to maintain skills as long as possible, as opposed to regaining them in people who have post-stroke aphasia,” Meier says.
Because it only affects speech and language, aphasia isn’t a life-threatening condition, but it can decrease a person’s quality of life substantially.
“It’s a condition that can be incredibly frustrating even in its mildest form,” Meier says. Imagine the irritation of having a word on the tip of your tongue amplified for every word you want to say, she suggests. “It can cause people to disengage in social situations, or choose not to participate in the things they normally enjoy doing because of this barrier in understanding or communicating language.”
Another way to conceive of aphasia, as Darlene Williamson, president of the National Aphasia Association, describes it, is to imagine being in a country where you don’t speak the language.
“You cannot understand, read, write, or speak,” she wrote in an email to [email protected] “Nothing changed intellectually, you simply cannot manipulate the language. That is aphasia. As a diagnosis, it only involves language.”
The very nature of the condition likely contributes to its relative obscurity in the public consciousness, both Meier and Williamson point out.
“It’s hard to advocate for yourself if you don’t have the language to do it,” Meier says.
In that way, Willis’ announcement went a long way to shed light on the condition, Williamson says.
“Within the first hour after the public announcement, we had over 30,000 hits on our website,” she wrote. This is unprecedented for us. And the media requests have been overwhelming. As an organization representing people with aphasia, we are very grateful to the Willis family for being direct and forthcoming with this announcement.”
In Meier’s lab, researchers are focused on maximizing functional outcomes for people with aphasia as much as possible, she says. In one ongoing project, she and her team are mapping out what, exactly, post-stroke recovery looks like in the brain. Using functional near-infrared spectroscopy (fNIRS), Meier and her colleagues seek to understand how language patterns are associated with changes in the brain. Doing so will enable researchers to differentiate between beneficial and maladaptive brain recovery patterns early on, and create therapies that boost beneficial recoveries during those crucial few months post-stroke, Meier says.
She and her colleagues are also getting ready to launch a study in May that will test patients’ speech and language abilities in their daily lives rather than in a quiet, clinical setting such as a therapy office.
“We want to understand everyday communication difficulties for people with aphasia, and then be able to treat them in real-life situations,” Meier says.
The yearlong study will involve randomly alerting aphasia patients—via smartwatches on their wrists—with images that they’ll identify out loud. Meier and her team will use the audio data to assess whether this type of study, commonly used in other research settings, can be applied to patients with aphasia as a way to capture their language abilities during their day-to-day lives.
And, while Meier and other researchers work tirelessly to understand the condition, Williamson says she hopes more of the public will try to understand people with aphasia in the meantime—a broader understanding that may well come as the result of Willis’ public announcement.
“One of the single biggest desires of individuals with aphasia is that they could go out into their community—let’s say to the coffee shop or the grocery store—and let the clerk know they have aphasia and the person would say, ‘Oh yes, aphasia. I know what that is. Let me slow down and give you extra time to process and speak,’” Williamson wrote. “It would change the world for people with aphasia if everyone knew what it was, knew that it involved language, not intelligence, and knew how to best communicate.”