Helping others understand: Post-stroke aphasia

Helping Others Understand is a series that supports survivors and family caregivers with helping friends and family better understand the nuances, complications and realistic expectations for common post-stroke conditions. If there’s a condition you’d like us to address, let us know at

Until recently, researchers thought anywhere from 1 to 2 million people in the U.S. had aphasia — now they believe in a broad estimate, it could be up to 4 million. This estimate includes aphasia due to stroke, traumatic brain injury, and brain tumor.

Aphasia is language impairment caused by damage to production or processing parts of the brain, and stroke is often the cause. It affects anywhere from 25% to 40% of stroke survivors, and it can range from mild to severe, according to the National Aphasia Association. For most people, the left side of the brain is dominant for language, and lesions there can lead to language and communication problems.

Aphasia primarily affects speech, but it can also impair comprehension, reading and writing, making it challenging to communicate with family and friends and navigate daily life. While aphasia affects speech and communication it does not affect intelligence.

“Even with a mild form, you struggle to speak with efficiency and to find that perfect word to describe your feelings,” said Elizabeth Hoover, clinical director of the Aphasia Resource Center and a clinical associate professor at Boston University. “The consequences of aphasia are really broad and wide-reaching, from social isolation to a higher incidence of depression. There’s a cascade of adverse effects.”

Many stroke survivors with aphasia improve, while others deal with language problems for years to come.

One extremely frustrating aspect is that stroke survivors often think very clearly, but the words won’t come out right.

“Intelligence is thought to be largely intact,” Hoover said. “You have the same thoughts and ideas — you’re just struggling to access and communicate the words.”

The importance of communication

While socializing and communicating can help healing, aphasia can also take its toll on relationships.

“When communication is interrupted, life itself seems to turn upside down,” said Carol Dow-Richards, whose son, David, had a stroke in 1995 at age 10 that damaged two-thirds of the left side of his brain. David, who was diagnosed with global aphasia, was unable to speak or understand what others were saying. He also couldn’t read or write.

The first few years were the hardest, when David went from using one to two words while speaking, but still couldn’t read or write. He was bullied when he returned to school, and Dow-Richards focused on boosting his spirits. Today, Dow-Richards lives in Henderson, Nevada, while David lives in Whiteville, North Carolina.

“I let him know that I knew his intellect was indeed intact,” she said, “and I tried to keep his self-esteem high.”

Emotional adjustments to aphasia can be difficult. After Reed Harris of Cumming, Georgia, had a stroke at age 50 in 2007, he was almost completely unable to talk or to understand others.

At first, Reed and his wife, Mary, wallowed in self-pity, she said. “We felt a bit like, ‘why us?’ Life could be something totally different had this not happened,” she said. But you have to quickly get out of that frame of mind and say, ‘I want to be the best I can be and give back the best that I can.’”

Carol Dow-Richards with her son David

Carol Dow-Richards with her son David

Family members of survivors working with a speech language pathologist should start by getting the therapists’ input about their loved one’s communicative strengths, said Roberta Elman, president and founder of the Aphasia Center of California. “Having that educational piece early on is important.” Some family members video successful techniques used during therapy sessions, then share the video with extended family.

Elizabeth Hoover
Elizabeth Hoover
Roberta Elman
Roberta Elman

When communicating with a survivor with aphasia, think about how you would communicate with someone who speaks a different language, Elman said. “That’s often the closest many of us get to experiencing aphasia.”

Making life bigger than aphasia

Some stroke survivors with aphasia do regain their speech. Today David can read, write and speak following years of intensive speech therapy. He now lives independently.

The same is true for Reed, who now can communicate his needs and ideas verbally. For years, Reed used a well-rehearsed introduction with people he’d meet: “Hi. Reed. Aphasia. Speaking slowly. Stroke years ago.” Now, he skips the aphasia reference and can speak enough to ask people to slow down.

“Regaining speech is more possible for some than others,” Hoover said. “Largely it’s the size of the lesion and area of the brain that’s been damaged that can have a big impact on recovery.” However, she added, it is now believed that speech improvements are possible for much longer than the previously thought three- to six-month post-stroke window.

“Studies over the last 10 years have debunked that myth,” she said. “People have the capacity to improve their language and certainly their communication years and years following a stroke, even 15 to 20 years later. Never underestimate the power of individual motivation and the right kind of intervention.”

Mary and Reed Harris

Mary and Reed Harris

Some survivors care less about getting speech back and more about “making life bigger than aphasia” using the Life Participation Approach to Aphasia (LPAA). Speech language pathologists across the country use this approach. The focus may include things like being successful at work or figuring out how to volunteer in the community.

With the LPAA model, the survivor, family members and a speech language pathologist work as a team to identify life goals and engage in therapy activities to further them.

Elman says friends and family members should encourage their loved one to leave the house and regularly participate in activities they enjoy. Doing so can help with mood and communication.

“People need to have something to talk about,” she said. “All kinds of thing happen when you get out of the house. It’s a much richer environment for language use and the brain.”

Other ways to communicate

Some family members have found success by communicating with a pad of paper and a pen, while others use gestures, pictures, maps, calendars or communication cards. All of these are examples of adaptive and augmented communication.

“Often, people even with very severe aphasia can do quite well indicating things on a map,” Elman said. She also uses a 1-10 rating scale with smiling and frowning faces. Survivors use the tool to answer questions like “how well are you getting along with an aide?”, or “did you like the movie you just saw?”

For years, Reed communicated through a laminated notebook a therapist helped him create. It included his address, phone number and messages like “I am sick, please help” and “Where is the bathroom?”

animated pic.

“There are a lot of apps out there that are really helpful,” Hoover said, especially those that create talking photo albums. With a text-to-speech app, a survivor can type a message and the app will read it out loud.

Just like people with physical disabilities can benefit from ramps, so can those with aphasia, Dow-Richards said. But they’re “communication ramps.”

“We cannot expect the person with aphasia to build the ramps,” she said. “It’s up to the care partners, medical professionals and those who interact with people with aphasia who need to take the time to learn about aphasia and hopefully get some training.”

Communication tips

When communicating with a survivor with aphasia, it’s not one size fits all. The following techniques can help:

  • Set attainable goals — and start small. You might move from communicating with your loved one with no speech, working your way up to them saying two or three words.
  • Praise all attempts. Don’t criticize grammatical errors. Encourage your loved one to keep them motivated.
  • Acknowledge communication problems. Confirm you’ve understood a thought your loved one shares before moving on. But if you don’t understand, don’t fake it. Acknowledge the communication breakdown, be patient and try again.
  • Consider how you’re phrasing questions. Use yes-or-no questions and simple words and sentences when possible. For example, say “fork” and “spoon” instead of “silverware.” Survivors with severe aphasia may respond “yes” when meaning “no” and vice-versa. Be aware of your loved one’s particular language issues.
  • Be conscious of how you speak. Resist speaking louder. Instead, use shorter sentences, speak slowly, add pauses and make eye contact.
  • Be conscious of how you speak. Resist speaking louder. Instead, use shorter sentences, speak slowly, add pauses and make eye contact.
  • Set communication rules. Set ground rules early on. Ask if help is wanted, respect their wishes and let them continue to try on their own.
  • Have props on hand. Keep a pen, paper, maps, calendars, pictures and photos handy to help with comprehension.

The best way to help a loved one is to actively learn as much as possible, while remembering that recovery isn’t easy or fast.

“Stroke recovery is work — and it continues to be work every single day,” Mary Harris said. As you engage with your loved one, always “focus in on the virtues and not the vulnerabilities.”

Common types of aphasia

  • Global aphasia. This is the most severe form, survivors can speak few recognizable words and understand little spoken language, but they can’t read or write. Often, global aphasia is seen immediately after a stroke. Barring major brain injury, it can improve quickly as healing occurs.
  • Broca’s aphasia. Also called “non-fluent aphasia,” those with Broca’s produce little coherent speech, often speaking in fewer than four words. The survivor may understand speech and read, even though writing is difficult.
  • Mixed non-fluent aphasia. Speech is halting, it takes great effort, and speech comprehension is limited too. Writing or reading past the elementary school level is unlikely.
  • Wernicke’s aphasia. These survivors have the most trouble understanding spoken words. Also called “fluent aphasia” because they struggle less with producing connected speech and sentence structure, although speech is marked by jargon or nonsensical words. Writing and reading are also often severely impaired.
  • Anomic aphasia. Speech comprehension and reading are less affected, while finding words, especially the right nouns and verbs, is a challenge. Survivors may depend on generic filler words such as “thing.”

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