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Rehab Insights is a weekly blog written by Burke Rehabilitation professionals to offer practical information for patients, families and the community. Its goal is to educate the reader on relevant topics in rehabilitation, general health and wellness.

Aphasia Should Not Equal Invisibility

June 18, 2019

Verbalizing our thoughts and being understood is something most of us take for granted. It’s easy to order a cup of coffee, to make a doctor appointment, to ask for thinly sliced turkey at the deli. Communicating with others is effortless, as long as we speak the same language.

An estimated 2.5 million Americans have lost that basic ability, due to stroke, brain injury or dementia. For them, simple verbal communication is like hearing and trying to speak a foreign language.

The impaired ability to produce and comprehend speech, or to read and write, is called aphasia. It is always due to brain injury—most commonly from stroke. Head trauma, brain tumors, or infection are other causes.

June is National Aphasia Awareness Month, notably because aphasia, which impacts more people than Parkinson’s disease or Multiple Sclerosis, is one of the least understood medical conditions.

The lack of understanding about aphasia compounds the anguish of those who suffer from it. In her book, Love Stroke,  a 36-year old stroke survivor from Cincinnati gives a firsthand account of being essentially ‘invisible’ in social situations: “They talked to each other, and they all talked to {my husband} about me … It was as if I weren’t sitting right there in front of them.” writes Kelly Marsh.

That sense of invisibility–of being ignored–stems from lack of understanding about how to communicate with aphasia victims. Caregivers and family who are on the front line need tools to interact with their loved one. At Burke, caregivers are individually trained and equipped with tools while the patient receives speech and language therapy. 

“For patients with profound aphasia, we train caregivers to use all modes of communication, including drawings, simple pictures, gestures and facial expressions-- and to encourage the same from their loved one,” explains Burke Speech and Language Pathologist Naomi Favreau.

Of course, aphasia affects each individual differently. It may be severe, or mild. It may affect a single aspect of language use, such as recalling the names of objects or putting words together in sentences, but it commonly impairs multiple aspects of communication and comprehension.

These variations are why treatment for aphasia patients is customized to the individual, rather than a one-size-fits all approach. According to Favreau, “In therapy, we often practice social situations by using scripts where the clinician and person with aphasia develop a scripted monologue or dialogue of an activity of interest. Then we practice it intensely, until producing the scripted speech is automatic and effortless.”

Patient support groups also provide opportunities to practice social interaction.  Favreau also equips her patients with wallet cards that can be shown to strangers, if they need help. 

Even if you’re not a family member, you may encounter someone with aphasia. If they don’t have a card to show, what can you do to help make that person feel visible?

  • Don’t talk about him/her, as if he/she isn’t there.
  • Don’t assume he/she can’t understand you, even if he/she’s totally non-verbal.
  • Make and maintain eye contact.
  • Get his/her attention before you speak.
  • Use short sentences, but don't "talk down" to him/her.
    • Use a normal level and tone.
    • Use words that are simple, but adult.
  • Give him/her extra time to speak.
    • Try not to finish him/her sentences (unless asked for help).
    • Ask him/her to draw, write, point, use pictures, gestures (if helpful).

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Burke's Rehab Insights blog is intended to provide general information about rehabilitation and other health care topics. It should not take the place of medical care. Burke staff cannot comment on individual medical cases or give medical advice.

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