Lost for Words? Understanding Aphasia

Just five years ago, most people in the U.S. had no idea what “aphasia” was. In fact, only 13.8% of the population had even heard the word—and most individuals who encountered the term didn’t know what it meant, according to the 2020 Aphasia Awareness Survey conducted by the National Aphasia Association.

But by 2022, approximately 68% of people reported familiarity with the word “aphasia,” and 40% correctly described it as a language disorder. That massive increase in awareness can likely be attributed to actor Bruce Willis, whose family announced his aphasia diagnosis in the spring of 2022.

The actor once known for his quick comebacks and wise-cracking patter has become the public face of a medical condition that affects individuals’ ability to use and understand language. As he’s lost language abilities, Willis has raised awareness of aphasia, which affects 2 to 4 million people in the U.S.

People with aphasia have difficulty expressing themselves. That shows up in a variety of ways, depending on the type and cause of aphasia. Some people may know what they want to say but are unable to get the words out. Others may appear to speak fine, but the words don’t make sense together.

Recognizing and understanding aphasia is key to successful management of this challenging condition.

What Causes Aphasia?

Aphasia is caused by damage to the language centers of the brain. Stroke is the most common cause of brain damage and aphasia. Approximately 30% of people who experience a stroke that was caused by decreased blood flow to the brain develop aphasia.

Other causes of aphasia include:

Traumatic brain injuries, such as a gun shot, car crash or fall
Brain tumors
Seizures
Neurodegenerative diseases, such as Alzheimer’s disease, Lewy body dementia, and frontotemporal dementia (FTD), including the variants of FTD included under the label of primary progressive aphasia (PPA).

Strokes and traumatic brain injuries rapidly damage the brain, so aphasia resulting from these causes typically appears suddenly. A person can go from a keynote speaker to garbling their speech in mere seconds.

In contrast, aphasia resulting from brain tumors or degenerative diseases worsens over time. As a tumor grows, its effect on the brain may also increase. Similarly, neurodegenerative diseases are caused by a buildup of abnormal proteins in the brain. Language ability declines as the language centers of the brain are increasingly affected.

An important note: Dementia and aphasia are two distinct but overlapping terms. “‘Dementia’ is a catchall descriptive term,” said Nicholas Milano, MD, a cognitive neurologist and director of the MUSC Health South Carolina Alzheimer’s Network. “It describes people who are having difficulty with their memory or other aspects of thinking, like problem-solving or language, and whose symptoms are severe enough to affect their ability to perform their day-to-day tasks.”

Some people with aphasia have dementia; others, such as those who experienced a stroke or other brain injury, do not. Some people with dementia have aphasia; some do not. However, many individuals are quick to assume that language difficulties are rooted in memory challenges.

“Oftentimes, patients will describe it as a memory problem,” said Boon Lead Tee, MD, an assistant professor of neurology at University of California-San Francisco. “They will say, ‘I forgot the word,’ when really it’s a language problem rather than a memory problem.”

Similarly, a lot of people also assume that adults who struggle to speak cannot comprehend oral or written language. That’s not necessarily true either.

Types of Aphasia

Health care providers classify aphasia into several types based on how language is affected, oftentimes based on whether someone has difficulty with either speech/expressive language or comprehension/receptive language. Two commonly encountered types—each named after the physicians who first identified the areas of the brain affected—are:

Broca’s aphasia (also called expressive aphasia): People with this form of aphasia may appear to struggle to speak at all. They may have trouble articulating words; their sentences may be simple, including only key words, and sound very halting and labored: “Want … coffee.” “Me go … store … later.” They may have difficulty reading or trouble repeating a sentence, but their comprehension is usually fairly good. Affected individuals are often frustrated by the communication challenges.
Wernicke’s aphasia (also called receptive aphasia): This type is caused by damage to the part of the brain that helps us understand language, so these individuals struggle to comprehend speech. It also affects speech as well, though in a different way. They may speak at a normal speeds, but they may put words together in a way that doesn’t make sense, sometimes termed a “word salad.” People with Wernicke’s aphasia may be unaware of their condition, though they may be frustrated when other people don’t understand them.

Classic Broca’s and Wernicke’s aphasias are usually caused by stroke or another brain injury. Aphasia caused by stroke or brain injury may improve with time and with focused therapies, though the extent of that improvement depends on many factors, including the seriousness of the stroke/injury.

Another type of aphasia is primary progressive aphasia (PPA)—the type of aphasia Willis likely has—is caused by a neurodegenerative disease called frontotemporal dementia (FTD) and has only been clinically recognized for the past 15 years or so.

It often begins with minor speech and language problems and is characterized by progressive decline. PPA can present in different ways, but the three best-known variants usually involve difficulties with producing speech (called progressive nonfluent aphasia, or PNFA), difficulties using words in a meaningful way (semantic variant, or svPPA), and primary difficulties with simple repetition and phonological memory—which is the ability to hear speech or sounds and remember them in the short term—that is expanded to other skills (logopenic variant).

These changes may mimic Broca’s and Wernicke’s aphasia in some ways, although they involve somewhat different networks in the brain. The abnormal proteins driving the changes can also be different for different variants. They affect primarily language in early stages, but they generally affect other skills, such as memory and behavior, in later stages. Another variant of FTD (behavioral variant, or bvFTD) primarily affects behavior and personality in early stages, but it may also affect language in later stages.

Common Symptoms of Aphasia

Because symptoms vary depending on the parts of the brain affected and the degree of brain damage, aphasia manifests differently in different individuals.

Symptoms of aphasia include:

Difficulty expressing oneself. Communication problems in aphasia can look like either problems with speech itself or problems with word meaning. Individuals with aphasia may struggle to come up with the right word. They may stumble over their words. They may skip words in a sentence. Some people with aphasia cannot repeat back words or phrases. Some only speak a few words. On the other hand, some people with aphasia may appear to speak easily enough, but their speech may feel very vague, as if they are grasping for meaning.
Difficulty understanding verbal or written language. Although most people associate aphasia with trouble speaking, and trouble with speaking is often present, it may also include difficulty understanding or difficulty with writing or reading, according to Elena Barbieri, PhD, associate director of the Primary Progressive Aphasia Program at the Mesulam Center for Cognitive Neurology and Alzheimer’s Disease and research assistant professor of physical medicine and rehabilitation at Northwestern University Feinberg School of Medicine in Chicago.

Individuals with neurodegenerative diseases causing aphasia often become more and more quiet over time, Dr. Tee said.

Diagnosis: What to Do If You Suspect Aphasia

The sooner you seek help for obvious or suspected language challenges, the better your chances of maintaining (or preserving) the affected individual’s language ability.

If you notice a rapid or sudden change, “drop everything and call 911,” Dr. Milano said. “A sudden change is language is most often due to a stroke, and strokes can be treated. If you get clot-busting medication for a stroke right away, sometimes symptoms resolve completely.” The longer you wait before seeking help, the more injury the brain may experience.

Talk to your (or your loved one’s) primary care provider about gradual changes in speech or comprehension. A thorough medical exam can detect or rule out underlying conditions, such as an over- or under-reactive thyroid gland, which may cause communication challenges.

Unfortunately—and especially when the results of routine medical tests are normal—people are often told, “This is nothing to worry about; you’re just getting older,” Dr. Milano said. If your gut insists something is wrong, ask for a referral to a cognitive specialist. Appropriate specialists include neuropsychologists, cognitive neurologists and speech-language pathologists. Objective testing can reveal the extent of communication challenges and help with a diagnosis.

However, it remains difficult to diagnose many forms of aphasia—including the one affecting Bruce Willis. “Even someone with such visibility and financial means had difficulty getting diagnosed properly,” Dr. Barbieri said. Part of the challenge is finding specialists trained to detect the clinical changes, while another challenge is that our science-based knowledge about aphasia is constantly evolving.

Multilingual, multicultural individuals often face additional challenges when it comes to diagnosis. “The diagnostic criteria and our understanding of aphasia are largely based on native English speakers,” said Dr. Tee, who began studying aphasia in Taiwan before moving to the U.S. “Because language typology and background can shape the way aphasia symptoms manifest, we don’t yet have a very comprehensive or confident framework for diagnosing and supporting the multilingual and non-English speaking populations.”

However, some research shows that in bilingual/multilingual individuals, someone who once frequently toggled between languages may begin to show symptoms by saying less and less in their second language. Because these changes are subtle and initially affect only one language, family members often don’t notice them right away or attribute them to the normal aging process.

Treatment and Management Options

Speech therapy is the mainstay of treatment for aphasia. Regular speech therapy sessions can help individuals with aphasia maintain or recover their language ability (depending on the cause), while helping affected people adopt alternate communication strategies as needed.

“When we talk about treatment and what to expect going forward, the big question is, was the aphasia caused by a one-time injury or an ongoing process?” Dr. Milano said. “If it’s a one-time injury like a stroke, many patients will improve, although they may not get back 100% of their function.”

Recovery after a stroke or other brain injury takes time. Most improvement occurs within the first two to three months, according to the National Library of Medicine, but additional improvement after that is possible, particularly with continued therapy.

Speech therapy is also the recommended treatment for neurodegenerative forms of aphasia, including PPA. “A lot of people may not fully appreciate how helpful it is in slowing down decline and retaining some speech and language functions for PPA patients,” Dr. Tee said.

Medication may help some people with aphasia related to Alzheimer’s disease or PPA. Lecanemab (Leqembi) and donanemab (Kisunla), two drugs recently approved by the U.S. Food and Drug Administration, target and reduce the buildup of specific proteins in the brain, which may limit damage to the language areas of the brain.

Non-invasive brain stimulation, such as transcranial magnetic stimulation, may boost the effectiveness of speech therapy in people with aphasia due to both injury or degenerative disease, but this treatment is not yet widely available.

“There’s some evidence that brain stimulation plus speech therapy is a little bit better than speech therapy alone, but it’s not striking,” Dr. Barberi said. “It’s not yet part of clinical practice because the evidence has not been overwhelming.”

Multilingual individuals may have difficulty accessing services in their native or most proficient languages. But the growing accessibility of telemedicine and online speech therapy now allows people to work with professionals outside their geographic area—and in the future, artificial intelligence (AI) may enable clinicians to offer services in a broader range of languages.

Eventually, AI “may make it easier for people of different language backgrounds to be assessed in their native—or even multiple—languages and receive equitable clinical care,” Dr. Tee said.