When it comes to A-list actors who deliver unforgettable (constantly quotable) lines, it doesn’t get any bigger than Bruce Willis. His most famous, expletive-laden “Die Hard” line (which can’t be recited here for obvious reasons) was the perfect mixture of whip-smart, comedic timing and testosterone-driven confidence — a result, no doubt, of the actor’s preparation for the role, his wordsmithing savvy and his overarching experience as a Hollywood thespian.
But earlier this year, Rumer Willis (Bruce’s daughter) posted on Instagram announcing to the world that her father was diagnosed with aphasia, a condition that “affected his cognitive abilities.” Overnight it seemed, the actor who’d once made an indelible mark on Hollywood for his charismatic speech was silenced. Heartbreakingly, Rumer stated that her father would be stepping away from acting permanently.
For many Americans, Willis’ aphasia announcement was the first time hearing about the debilitating mental disease. But it’s fairly common, affecting nearly two million Americans (or approximately 225,000 people). (By comparison, roughly one million Americans have Parkinson’s disease, another devastating illness famously afflicting actor Michael J. Fox).
And, as the experts we spoke to outline, the disease can affect a wide swath of folks and manifest symptoms in very different ways. Here’s what to know about aphasia, including how the disease is diagnosed and treated and how caregivers can help older loved ones facing a diagnosis.
What exactly is aphasia?
Essentially, as James Giordano, a professor of neurology at Georgetown University Medical Center, explains, aphasia is the result of external disruptions of the brain processes that help a person understand and express communication. “The individual will also have problems comprehending conversation, explanations and other types of expressive communication,” he explains.
“Aphasia can cause difficulty with speaking, understanding language, reading and writing,” adds Emily Braun, a certified speech pathologist affiliated with Boston University’s Aphasia Research Laboratory.
Aphasia has a number of variations, according to the National Aphasia Foundation (NAF). These include:
- Global aphasia: The person can form or comprehend very few words (this is the most severe form of the disease).
- Broca’s, or non-fluent, aphasia: The person can form some words, but the delivery is strained and often unclear.
- Mixed non-fluent aphasia: This person has strained speech but is also limited in understanding speech and reading and writing.
- Wernicke’s, or fluent, aphasia: This person can produce speech, but sentences might not string together properly and words used can seem irrelevant.
- Anomic aphasia: This person has particular difficulty with forming, and articulating the significance, of certain nouns and verbs. Sentences might seem grammatically correct, but have confusing meaning.
- Primary progressive aphasia: Unlike other aphasia forms, this is caused by a neurodegenerative disease (like Alzheimer’s).
The NAF notes that these six categories are only a baseline for diagnosis. Many patients exhibit symptoms that don’t fit the definition perfectly. “There are many different types of aphasia and every person with aphasia has their own communication strengths and challenges,” explains Braun.
“Aphasia is most often caused by a stroke, but can also be caused by a traumatic brain injury, a brain tumor or a brain infection.”
— EMILY BRAUN, A CERTIFIED SPEECH PATHOLOGIST
What causes aphasia?
A number of factors can contribute to an aphasia diagnosis, says Giordano, including neurodegenerative disorders (like dementia), a stroke, a brain tumor or a traumatic brain injury.
Most commonly though, Braun notes, is a stroke causing aphasia. “Aphasia is most often caused by a stroke, but can also be caused by a traumatic brain injury, a brain tumor or a brain infection,” she explains. The NAF says that 25% to 40% of all stroke survivors develop aphasia.
And while some types of aphasia can’t be prevented, you can reduce your risk for a stroke (which, in turn, reduces the chance of developing aphasia). This means taking steps to keep cardiovascular health high. Here are some ways caregivers can help improve the heart health of a senior they’re caring for.
How aphasia is diagnosed, and what early symptoms look like
As Dr. Laurie McWilliams, a neurologist and medical director for Novant Health in Charlotte, North Carolina notes, aphasia can start small — and is sometimes barely even detectable. She says that person in early stages of aphasia might exhibit:
- Difficulty finding words (saying, “what’s that person/place/thing again?” or similar phrases in sentences)
- Challenges in engaging in back-and-forth conversation (maybe the cadence of back-and-forth doesn’t feel smooth)
- A reduced ability to read and write efficiently (maybe it’s taking a person longer to finish a newspaper article or book)
Braun adds that aphasia follows a similar pattern to mental lapses you might feel on a daily basis at first. “We all have times when a word is on the ‘tip of our tongue,’” she says, explaining that this is called anomia. “People with aphasia often know what they want to say but can’t get the words out.”
Giordano notes that aphasia is typically assessed by a neurologist and diagnosed through a series of tests meant to measure a patient’s ability to form, express and comprehend language.
One major point made by the NAF: Aphasia is a disease that affects a person’s ability to express and understand communication. It does not affect a person’s intelligence, as neurological diseases like Alzheimer’s do.
What the prognosis for aphasia looks like
As McWilliams notes, the chances for recovery are typically dependent on the underlying cause of aphasia. “The most recovery [is] seen in milder strokes or traumatic brain injury,” she says. “Age also plays a factor. The younger the patient, the greater the recovery.”
Giordano says that the underlying cause of aphasia also dictates what type of treatment path to take — and the likelihood of success. Depending upon the cause of aphasia, certain treatments are available,” Giordano says. “For example, aphasia resulting from a brain tumor may be somewhat reversible if the tumor can be successfully removed without excessive damage to the surrounding brain tissue.”
On the other hand, if the aphasia resulted from a head injury or stroke, he says that language and communication rehabilitative therapy can be helpful in aiding in recovery. This type of treatment can be useful in initiating and fortifying the brain’s capacity for plasticity and redirecting neurological networks that can compensate for existing structural damage, he explains.
But if an underlying neurological disease is at play, Giordano says that symptoms are only likely to worsen with time — so there’s not much that patients or caregivers can do. “Hope for such patients’ treatment is on the horizon,” he notes. “New neurotechnologies are currently being studied, developed and tested in clinical settings.”
McWilliams notes that some medications can help slow the progression of certain types of aphasia. The Mayo Clinic says that these medications (many of which are currently being studied) help improve blood flow to the brain and help the brain recover from depleted chemicals.
7 ways caregivers can help a person with aphasia
As a caregiver for a person diagnosed with aphasia, you play a pivotal role in helping them live a comfortable life. Here’s how to make a positive impact:
1. Change your communication style
Since aphasia is a disease that affects a person’s speech, a caregiver’s speech should shift too, says Braun. Here are her tips for communicating effectively with a person who has aphasia:
- Speak slowly but with a normal tone/volume (they’re not deaf — they can hear you just fine!).
- Keep distractions when communicating, such as a television or radio, minimal when conversing.
- Give the person with aphasia plenty of time to speak without interruption or you filling in words for them.
- Use different strategies, besides words, to communicate. “When they can’t get the words out, they might be able to write down a keyword, use a gesture or show a picture on their phone to get the message across,” Braun explains.
“Establish a daily routine. This will limit any new situations that may be problematic for [your loved one] to comprehend, address and communicate about.”
— JAMES GIORDANO, A PROFESSOR OF NEUROLOGY AT GEORGETOWN UNIVERSITY MEDICAL CENTER
2. Maintain a routine
Giordano says that the less new and novel you present to a person with aphasia, the easier it’ll be for them to communicate their wants and needs effectively. “Establish a daily routine,” he suggests. “This will limit any new situations that may be problematic for [your loved one] to comprehend, address and communicate about.”
For example, maybe you’ve introduced a new food into their diet they have a dislike for. A person with aphasia might have trouble communicating a) what the food is, and b) how they feel about it, which can leave them feeling powerless and frustrated.
3. Label items around the house
McWilliams says that one of the best things a caregiver can do for a person with aphasia (who is able to read) is to keep things labeled. “If they are having word-finding difficulties, but can read, label things around the house,” she says, pointing out that you could, for example, put labels on cabinet doors for items inside the cabinet.
Giordano also says you can keep “adaptive assisting tools” around the house, such as pictures of objects used frequently or emotions that depict their intentions or needs.
4. Keep others informed
From their doctor to family members, the more folks you make aware of a person’s aphasia, the better, says Giordano.
Instruct others on ways to communicate with that person clearly, he says. “Be considerate of the need to make the person feel comfortable, not confused or anxious, and as safe as possible,” notes Giordano.
5. Help them engage socially
One unfortunate byproduct of many aphasia diagnoses, says Braun, is loneliness. She notes that it’s important for those with the disease to stay socially engaged, as the disease can quickly lead to isolation.
She recommends finding a local aphasia support group through the NAF. Check out their national directory here.
6. Be patient
Above all else, for caregivers, it’s important to practice patience, according to the experts we spoke. “Be flexible in adapting daily interactions, routines and activities, as signs and symptoms can vary on a daily or weekly basis,” notes Giordano. “It’s important to be sensitive and responsive to an aphasic patient’s abilities, limitations, needs and desires.”
