You ask your spouse for a plate,
and he hands you a cup.
Your spouse seems to get “stuck”
on the same word or phrase.
Your spouse can say words, but
her sentences don’t make sense.
That’s Aphasia: a language disorder
that results from damage to parts of the brain. It
can affect all modes of language including speaking,
writing, gesturing, understanding what others say,
understanding writing, and using numbers. Aphasia
often hides people’s thoughts, ideas, personality,
intelligence and competence – they know what they want
to say, but can’t always get the words out.
Stroke is the leading cause of
aphasia; however, it also can result from brain tumors,
head injuries, brain infections, and other conditions of
People who suffer from aphasia can
have difficulty understanding others, particularly
strangers. Or, they can follow the gist of a
conversation, but lose track easily, or forget the
beginning of a message before reaching the end of it.
They may be able to say individual words, or parts of
words, but struggle to complete the entire word or
sentence. Or, they may speak nonsense quickly.
And background noise or lively conversation among a
group of people can really exacerbate the difficulty
they have understanding conversations.
“Many times, too, a person with
aphasia is so focused on themselves, they are unable to
see that their caregiver is overwhelmed. The
person with aphasia can’t help it; they’ve lost a lot of
control in their lives between the loss of communication
and physical disabilities. They are just trying to
survive,” says Mimi Block, M.S., CCC-SLP, clinical
services manager, University of Michigan Aphasia
“And even if they could recognize
how much their caregiver is dealing with, they cannot
express their gratitude or appreciation,” she added.
It can be an enormously frustrating
condition, for both the individual and the caregiver.
The University of Michigan Aphasia
Program (UMAP) is the oldest and most effective program
of its kind in North America for the treatment of
aphasia. Established in 1947 to assist World War II
veterans who sustained injuries in combat, UMAP has
successfully treated thousands of individuals, offering
as much speech-language therapy during a six-week
session as a person would receive in one year of
Caregiver education and support is a
critical component of the UMAP.
This past summer, UMAP gave Robin
Cox, wife of a (retired) National Guard Lieutenant
Colonel with aphasia, the tools to help her husband with
his therapy and the insight to help herself as his
caregiver. Her husband Mark suffered a stroke in March
2009, just 30 days before he was due to be deployed to
“I know it’s a cliché, but UMAP taught me this is not
the end of the world, there is light at the end of the
tunnel, and the little progress we make each day brings
us that much closer to our goals,” Robin Cox said. “And
those little improvements are exponentially more
important for the caregiver,” she added. “They
bring us ten times the joy.”
One morning, not too long ago, Mark found his glasses
after looking for them for quite some time.
“He said, ‘I found them’ and I said, ‘Say that again!’
and he did! And then I made him say it again. It was
one whole, complete sentence. It’s those little
moments you must celebrate,” Cox said.
During the six-week session at UMAP, there are five
caregiver meetings which focus on:
- Acquiring a better understanding of aphasia, and the
physical disabilities associated with a stroke (the most
common cause of aphasia)
- Facilitative conversation and other ways to communicate
with people who have aphasia
- Effective communication techniques and strategies
- Practicing new communication skills using facilitative
- Options for the future
“Ongoing education is essential for the well-being of
the loved one with aphasia and all the family members,”
Block says. “The caregiver needs to connect with the
speech-language pathologist who sees their loved one to
learn about aphasia and specific techniques to
communicate with him or her.”
To prompt conversation, Block encourages caregivers to
use “topic cards,” which are lists of words or
pictures—like family, sports, friends, birthdates,
hobbies, maps, a calendar—as a starting point to
determine what the person wants to talk about.
“There’s also the WH Chart—who, what, when, where and
why, that can be used to get the person thinking in
terms of sentence structure,” Block said. “The
more information that’s available to them, the more
successful they will be.”
One night when Mark Cox was trying to tell his wife
Robin to change his schedule that week, she said they
both “went round and round and round, and started to get
flustered” until she resorted to using a calendar and
writing down days of the week and appointments to
clarify what her husband was trying to do.
“You have to keep digging to find the right way to get
the point across,” Robin Cox says. “It’s more than
just talking. You can use pictures, calendars or
write words on paper. You’ve got to take a deep
breath and be patient. Yelling isn’t going to do
it. You have to try all of your options.”
UMAP also encourages caregivers to be advocates for
their loved ones, providing them with the encouragement
and motivation to continue on the road of recovery with
realistic goals and expectations, and a better ability
to communicate in their day-to-day living.
Lulu Smith, whose husband Louis suffered a stroke in
2005 and has aphasia, is in two therapy programs,
including UMAP. She accompanies Louis to all of
his therapy sessions, and either watches them or
participates in them directly.
“I watch to see what the therapists are doing, and I
insert their techniques into our daily routine at home,”
Lulu Smith also tries to keep their lives as normal as
possible. Louis is a legendary jazz trumpeter with
an international reputation and many major recordings,
and she regularly takes him to jazz festivals and clubs
where he can interact with other musicians.
They’ve always been great travelers, she said, and they
go to Paris in October each year and to Mexico for two
months in the winter.
“I never get someone to ‘sit’ with him. We’ve
always done things together,” she said.
Robin Cox recently encouraged her husband to go with her
to their 11-year-old son’s football game.
“He didn’t want to go at first. Since he had his
stroke, he’s lost some endurance, too. But he
ended up staying for the whole game. I think Mark
realized he can socialize, and he can talk with
others—not just his wife, his brothers, or people who
are close to him. Physically, he was tired, but it
was great for his spirit.
“He was put out of his comfort zone. I think
that’s what a caregiver does. We try this, and if
it doesn’t work, we’ll try something else,” Cox said.
“It is so important to keep trying,” says Joyce Zeigler,
whose husband Mack suffered a stroke in 2004 and who has
participated in two UMAP sessions in 2006 and 2008.
“Mack continues to make progress. I encourage
people with aphasia and their loved ones to be patient
and have hope. Mack and I have faith that more
progress is in his future. We take it a day at a
time and look forward to each day.”
Lulu Smith adds, “You must understand it takes a long
time to have success. You have to keep working and
working, and never give up. You’ve got to stick
Joanne Marttila Pierson is associate director of the
University of Michigan Aphasia Program, the oldest, most established program
of its kind for the treatment of aphasia in North America. She provides the
leadership and vision for clinical programs for children and adults with
language and literacy disabilities. Her responsibilities include management
of all clinical operations, including, personnel, marketing and development