The aphasia broke into the news last week when the family of actor Bruce Willis announced that he was stepping down from his career due to communication difficulties. Also last week, Lady Gaga was praised for her supportive approach to presenting an Academy Award with Hollywood star Lisa Minnelli, who previously suffered from encephalitis and expressed confusion over what she would say on stage.
People with aphasia say that lack of awareness of the condition is one of the biggest barriers they face. Two prominent examples of communication difficulties — one involving a diagnosis of aphasia and the other showing similar symptoms — present an opportunity.
Aphasia is the loss of access to language due to brain damage, most often after a stroke but also caused by traumatic brain injury, tumors, and a type of dementia called primary progressive aphasia. It is a frustrating and isolating condition, disrupting conversations and affecting relationships with family and friends.
But there are ways to help those we love to connect with. Here are five ideas to keep in mind:
1. Recognition of ability
Aphasia affects language, not thought. Ora Kagan of the Canadian Aphasia Institute coined the phrase “I know you know.” This was a breath of fresh air for people who used to treat them as lacking in ability because they couldn’t find the words to express themselves.
Recognizing that people with aphasia remain competent and intelligent lays the foundation for fruitful exchanges and respect.
Read more: What areas of the brain control our language? How do we know that?
Realize that the responsibility to satisfy conversations does not lie solely with the speaker. It is shared equally by those with whom they communicate. Evidence shows that when communication partners are provided with information, strategies, and a little practice, they can enable much better conversations.
Communication partner training is now commonly offered by speech pathologists. It is also being explored for use in people with dementia.
Key strategies in training communication partners include:
Speak in your usual tone of voice
Acknowledge blocking or communication problems and try to fix them respectfully rather than ignoring them
Note down keywords to keep chatting on track
Drawing or using gestures – for example, pointing at an object or person
Using yes/no questions to confirm the meaning
Summarize what was said at regular points in the conversation.
Read more: What is aphasia, the condition that Bruce Willis lives in?
3. Respect the human right to communicate
Communication is an essential and integral part of being human. We express our personalities, histories, aspirations, and achievements through spoken or written language. Communication is recognized as a human right, without it the quality of life is affected.
Humanizing our approach to aphasia—that is, paying attention to human delicate and empathetic needs, not just the basics of survival—has the potential to preserve and validate the person with aphasia and transform health services.
Read more: In the world of gossip, loss of speech can lead to aversion. But there is help
4. Accessibility Guarantee
Everything we do is mediated by language: reading the news, using public transportation, buying coffee, using a smartphone, chatting with colleagues or friends over lunch, negotiating bureaucracy, buying a ticket to a sporting or music event.
Accessibility is about ensuring that the way the language is spoken, written, or presented electronically does not exclude people with communication difficulties. Modifications may modify the speed, presentation, or complexity of the information.
Just as people in wheelchairs should be able to anticipate the arrival of a ramp rather than facing up stairs, people with aphasia should be entitled to a communication ramp (another Aura Kagan term) where a person or agency provides their oral or written information to a friend aphasia; This may be particularly vital in healthcare contexts.
5. Involve people in conversations and events
Inclusion is what keeps people thriving and gives them opportunities to practice and improve their communication. Aphasia can be a single disorder but supported by communication, positive attitudes, friendship, purposeful activity, community aphasia groups, and social opportunities, it doesn’t have to be. Don’t leave people outside because you assume they might feel uncomfortable. Show the options and they’ll tell you.
Awareness of aphasia is key. Although relatively common, the word aphasia is not well known, and it is difficult to treat something when you don’t have a word for it. Knowing the term helps but knowing how to help is even better.
You can find more information about aphasia, training conversation partners, and community aphasia conversation groups online.