By Kathy Parker, MS, OT, American Stroke Foundation
You may have never heard of aphasia. In fact, most people have not heard of it until someone they care about has a brain injury or stroke.
Aphasia is a disorder of language and communication that makes it difficult for a person who has it to talk, read, and/or write. A person with aphasia can generally think perfectly but they are not able to get thoughts past their lips in a manner that makes sense to them or others. Other people with aphasia have difficulties understanding what someone says to them. Some people have a combination of each.
Aphasia is generally caused by a stroke. A stroke is sort of like a heart attack in the brain. A stroke occurs in a couple of different ways. An ischemic stroke is caused by a clot building up and blocking an artery or embolus; a clot formed in another part of the body. The clot breaks off and travels along a blood vessel until it gets stuck. About 80% of strokes are ischemic strokes. The other type of stroke is called a hemorrhagic stroke. It is caused by blood leaking out of a blood vessel into the surrounding tissue. Hemorrhagic strokes are generally caused when a weak part of an artery, called an aneurism, begins to leak.
Strokes can happen at any age. Babies in utero have strokes. However, most strokes occur in older people. The age at which people have strokes is decreasing. At the American Stroke Foundation, we have found that most of the stroke survivors who come to us are in their mid to late 50s. Stroke is the number one cause of disability in adults, and the fourth leading cause of death.
Strokes generally affect one side of the brain. One side of the brain controls the opposite side of the body, so that people who have strokes in their right brain may have left-sided paralysis, and people who have strokes in the left side of the brain have right-sided paralysis. A person who has a stroke in the right side of the brain generally has problems in spatial awareness as well perception, because the brain processes information incorrectly. These folks might also have problems of judgment and insight. People who have damage to the left side of the brain may have problems with communication. This can cause problems expressing themselves and/or understanding what is said. In addition to strokes, aphasia can also be caused by a traumatic brain injury.
After a person has a stroke, if he/she gets to the hospital in time and they’ve had an ischemic stroke, they may be eligible for the clotbusting drug called tissue plasminogen activator (tPA), which breaks up the clot and reduces the effects of the stroke. Not everyone is eligible for this drug and some may receive further medical intervention. It’s important for people to get to the hospital as quickly as possible once there is a suspicion of a stroke.
Generally a stroke survivor is admitted through the emergency department, then to ICU, and then to the neurological floor, if the hospital has one. Some stroke survivors go to inpatient rehabilitation (rehab), day hospitals (if available) and outpatient rehabilitation. Along the way a stroke survivor will interact with many different health care providers, i.e., occupational therapists, physical therapists, and speech therapists. Once a person has stopped making progress in rehab, they may be able to attend a wellness program designed for stroke survivors. The American Stroke Foundation provides this kind of program.
At the American Stroke Foundation (ASF), stroke survivors interact with a group of people who have been through similar experiences, as do spouses and other caregivers. The ASF has locations in Mission, Kan. and in Blue Springs, Mo. The foundation serves 120 people a month including 55-60 stroke survivors and their family members. There are sessions for every stroke survivor.
One of the groups that we are proudest of is our verbal communication class that is led by a speech pathologist, who has volunteered for the foundation three mornings a week for the last 12 years, because she loves what she does, and because the stroke survivors are like family to her.
The verbal communication class is varied depending on the day. Each person is supported by the leader and by other stroke survivors. They talk about what they had for breakfast, what they watched on TV the night before, what movies are opening this week, or anything else of interest to them. One frequent activity involves introducing themselves to the others at the table. Another is ordering from a menu where one of the survivors plays waiter and the other orders.
Everyone in the group has a different kind of aphasia, or in some cases apraxia (difficulty putting sounds and syllables together in the correct order to form words). Most people would not be able to recognize the difference between aphasia and apraxia and often lump the two together.
Bob and Bill tend to not speak much outside of the verbal class but occasionally they will participate in a conversation by trying to get words out, other times words just come out automatically. Sometimes they struggle a lot and we have to give them time or use one of the other suggestions that follow. Bobbie and Alice can communicate very well but they still have problems coming up with words, often they will write the first couple of letters of the word on the back of their hand just to get them started. Joseph and Jenny have problems understanding what is said to them and they work best when things have been repeated many times. Often in the group they will be the last to speak so they get the benefit of lots of repetition as others answer the questions ahead of them.
Aphasia is often bewildering for the person who has it and for their families. Communication is strained and both the person with aphasia and their spouse or caregiver may become depressed. It is very important that the stroke survivor and their caregiver receive support. The ASF has a caregiver support group that meets on the third Wednesday of the month at 10:30 a.m., and a stroke support group at 1 p.m. on Thursdays. Some would argue, correctly, that the ASF is a giant support group. Check out the foundation’s website at americanstroke.org to learn more and find a schedule of activities. The Mission location is open five days a week from 9 a.m. to 3 p.m., and the Blue Springs site is open from 10 a.m. to 2 p.m. on Tuesday and Thursday.
Here are some tips for communicating with a person who has aphasia:
- Have a pen and paper handy
- Allow plenty of time
- Be flexible to try different ways to get ideas in and ideas out
- Use props like photos, maps, etc.
- Summarize: check that everyone is on the same track
- Leave a written record for everyone to share
- Don’t make assumptions: check things to make sure you understand
- Communicate with one idea at a time, in straightforward language
- Confirm yes or no
- Check understanding
- Stay calm
If a person gets stuck
- Acknowledge the difficulties
- Summarize what’s been said so far
- Decide together whether we’re going to carry on, or come back to it later.