June is Aphasia Awareness Month: Do Your Part to Help People Who Cannot Speak be Seen and Heard
On August 30, 2009, at only 36 years old, Kelly Marsh, a successful businesswoman with roles at the Cincinnati Museum Center and, most recently, chief marketing officer at Thomas More College, suffered a debilitating stroke. One effect of the stroke was aphasia, a language disorder that affects a person’s ability to communicate.
In their memoir, Love Stroke (2016), Kelly and her husband Brad, a successful entrepreneur and businessman, chronicle the challenges the couple faced from both the survivor and the primary caregiver viewpoints, from their life before the stroke, to the day everything changed, and through the first two years of recovery.
One of the biggest challenges they discovered is that Kelly became, in a figurative yet very real sense, invisible to the people around her. Kelly and Brad tell how, after she was able to get out to social gatherings again, people would direct all their questions to Brad, even though Kelly was right there in front of them.
She described the feeling as “a phenomenon in which you are the center of attention or one of the main attractions of other people’s concern, discussion, or visual attention, but they all operate as if you aren’t even there.”
I bring up Kelly’s story today because June is Aphasia Awareness Month, and while approximately two million people in the United States have aphasia, 84.5% of Americans say that they’ve never heard of aphasia before. How’s that for invisibility?
Of course, for those of you who are friends, family members, or caregivers of someone with aphasia, you know all too well how challenging the condition can be for everyone involved. And that’s not to mention other possible effects of the initial cause of the aphasia, which is often a stroke (as in Kelly’s case) or a traumatic brain injury.
In today’s post, I’d like to share a variety of ways you can help someone with aphasia to better communicate with those around them so they’re both seen and heard.
Augmentative and Alternative Communication (AAC) Approaches for People with Aphasia
Aphasia communication tools and approaches come in all shapes and sizes and at all price points, from zero on up. The key is to be flexible and have a variety of strategies ready to use for any given situation.
This approach, called “multimodal communication,” is about using a number of communication techniques, from verbal language to written language, from gestures and body language to sign language, from simple tools like rating scales all the way up to sophisticated AAC photo-to-speech and text-to-speech apps.
And since no two situations are the exact same, I want to provide you with a range of options from which you can choose, depending on the situation you find yourself in.
I’ll divide these strategies into three groups:
- No-Tech AAC Strategies—things you can do to improve communication that don’t require any technology at all.
- Low-Tech AAC Strategies—strategies that use some simple tools, but still don’t require anything electronic or digital.
- High-Tech AAC Strategies—More robust technology that can improve communication significantly in just about any situation.
Alright, let’s dive into the strategies…
No-Tech AAC Strategies
I’ll start off with a few basic strategies Kelly and Brad Marsh talk about in Love Stroke, then I’ll add some others to the list. All of these strategies are extremely basic and can be used in just about any situation in which someone with aphasia finds themselves.
- “Hey, I’m Right Here”—When someone would direct a question at Brad that was really for Kelly, Kelly learned to simply speak up and say, “I’m here. You can talk to me.”
- “Why Don’t You Ask Him/Her?”—Alternatively, Brad would simply point at Kelly in these situations, as if to say, “She’s right here. Why don’t you ask her?”
- “Give Me a Minute” Card—Another approach the Marshes found helpful was to have a card made up in advance that says, “Let me answer that. You’ll just need to give me time to form my words due to my aphasia.” When someone asks the person with aphasia a question, they simply hold up the card so the other person can see it.
- Everyone On the Same Level—The Marshes also encourage people to get on the same eye level with the person with aphasia. It’s hard to have an equal conversation, for example, when one person is seated in a wheelchair and everyone else is standing. In such a situation, pulling up chairs so everyone can sit and look at each other while they talk leads to more inclusive conversations.
- Augmented Input—Once a conversation has started, it’s a good idea to keep in mind that many people with aphasia have challenges not only with speaking, but also with comprehending oral language. One helpful strategy in these situations is to make your communication richer by drawing pictures, writing, using gestures or pantomime, and/or using objects in the environment to enhance your message. The richer the input, the more likely the person being spoken to will be able to understand your message. Of course, if the person you’re speaking to has no problem understanding normal speech and just has difficulty responding, don’t use augmented input because it will come across as patronizing.
- American Sign Language (ASL)—If the person with aphasia understands sign language and someone else in the group does, as well, this can speed up communication significantly, as the person without aphasia can then translate into speech for the rest of the group.
- Tagged Yes/No Questions—If the person with aphasia has difficulty answering yes/no questions, one helpful strategy is to add the tag, ”Yes or no?” on the end of the question. For example, “Are you married, yes or no?” Speak slowly and nod your head when you say “yes” and shake your head when you say “no.” This more clearly communicates your question and also tells the person with aphasia that they may either respond verbally or by nodding or shaking their head in response.
- Thumbs Up, Thumbs Down—Similar to the previous strategy, you can ask a question that requires a yes or no answer and give the thumbs up sign for yes and thumbs down sign for no.
Using one or some combination of these strategies can help the person with aphasia better understand what others are saying and participate more fully in the conversation.
Low-Tech AAC Strategies
The strategies in this second category are still quite simple, but they do require one or more simple props:
- Pen and Paper—If the person with aphasia can communicate more easily by writing or drawing than through speech, simply passing pen and paper back and forth can allow them to communicate. A portable whiteboard and marker is another option.
- Alphabet Board—When writing is a challenge, the person with aphasia can point to letters or numbers to spell out their message for the person they’re talking with.
- Pictures/Symbols—A few pictures or symbols that stand for key concepts can be placed on laminated cards. The person with aphasia can then point to the correct picture or symbol if there are multiple symbols on a larger card or choose the correct card to get across their message (if using multiple cards with one picture or symbol each) and hold it up or pass it to their communication partner.
- Communication Book—A more elaborate version of the previous strategy. In this case, a book consisting of multiple pages of pictures and/or symbols, often grouped by categories (food, people, places, etc.) is used. These books should be co-created with the person who has aphasia so the vocabulary will be familiar and personalized.
- Ratings Scales—In this strategy, you can create Likert-type scales (rating things from 1 to 5, for example) for questions or opinions that have a graduated scale of possible responses. For example, you might have one scale that ranges from “Never” (1) at one end, “Sometimes” in the middle (3), and “All the Time” (5) at the other end. If you ask the person, “How often do you go downtown?” the person can simply point to the proper response. Another option might be to have a scale from “Hate It” (1) to “So-So” (3) to “Love It” (5). If you asked, “What do you think about pizza?” they could answer easily by pointing. Adding a few Likert-type ratings scales to a pictures/symbols board or to a communication book could increase the flexibility of the discussion.
- Written Choices—In this strategy, the person communicating with the person who has aphasia says their question out loud slowly and writes it down as they do so. They then add some choices for a response underneath the question. For example, you might say and write, “I know you and your wife are big sports fans. What’s your favorite sporting event to go to?” Then, underneath, you might list “football game,” “basketball game,” “baseball game,” and “hockey game.” You could also add “something else” as an option. The person with aphasia can then point to the best answer. When they answer, circle their answer so you remember what was said in the conversation, then make a relevant comment about their answer of ask a follow-up question using the same technique.
High-Tech AAC Strategies
Finally, if the person with aphasia likes technology and is comfortable using it, the best approach is probably to look into an AAC app that they can use on their smartphone or on a tablet computer, like an iPad.
- A Tablet with an App for Communication—This option allows the user to take advantage of photo-to-speech and/or text-to-speech capability so they can simply touch a photo or select or type a phrase or sentence for the app to speak out loud. Another major advantage of such apps is that many of them can be customized with photos and personalized written communications.
APP2Speak: Our Top Choice for a High-Tech Solution
When it comes to apps for aphasia, we’re admittedly a bit biased, but we believe that APP2Speak is one of the best AAC apps available today.
You can find out why we think this is the case by hopping over to the How It Works page to see all the bells and whistles we’ve incorporated into the app.
But I think a better approach would be to simply re-tell a story I’ve written about before in this Blog about one of our users. This client’s story shows the benefits someone with aphasia can gain from using APP2Speak’s customization features…
I once had a client who was using a APP2speak to communicate, and his wife helped him to create custom photo pages in the app.
He had her take a picture of beer in a mug and when he selected it, the app would say, “Beer me.” They set this up in the app because he would meet up with his buddies once a month at the bar, and he would use the “beer me” photo to order.
This same client also demonstrated his sense of humor by having his wife take a picture of his mustache, and then used the speech output to say, “Honey, can you clean the boogers out of my ‘stache?”
He also used another custom photo of his beard to say, “Honey, I need a trim. Can you help?”
These are just a few examples of the power (and sometimes humor) of using the picture to speech technology built into APP2Speak.
AAC Strategies: Helping People Who Cannot Speak to be Seen—and Heard
As I said at the beginning of this post, June is Aphasia Awareness Month, so there’s no better time to talk about the needs of people with aphasia and what we all can do to help them be truly seen and heard.
Just because they have challenges speaking doesn’t mean they don’t have valuable ideas to contribute to the conversation.
I hope this post has given you a few new strategies to add to your toolbox for communicating with those with aphasia in your life.
And if you’re ready to find out more about APP2Speak, you can schedule a demonstration by filling out the form on our Contact page.
I look forward to hearing from you!