Often a celebrity diagnosis will bring a little-known disease or condition into public discussion and awareness. When actor Bruce Willis’s family announced that he had been diagnosed with aphasia, many people probably went straight to their favorite search engine to find out what aphasia is.
What’s Aphasia?
It might help to know what aphasia is not: aphasia is not dementia or a mental illness.
“Aphasia is a condition that affects your ability to communicate,” the Mayo Clinic explains. “Aphasia typically occurs suddenly after a stroke or a head injury. But it can also come on gradually from a slow-growing brain tumor or a disease that causes progressive, permanent damage (degenerative).”
These are the symptoms of aphasia as listed by Mayo Clinic:
- A person with aphasia may start to speak in short or incomplete sentences
- Listen for sentences that don’t make sense
- This person may start substituting one word for another or speak unrecognizable words
- Notice if they write sentences that don’t make sense
- The person with aphasia may not be able to understand other people’s conversations
It is recommended that you contact a healthcare provider immediately if these symptoms appear as they can be related to a serious health issue such as stroke.
There are different types of aphasia, usually related to the cause of this condition, and will be defined by the severity of the symptoms. There can be temporary aphasia due to migraines or seizures.
It is possible for some cases of aphasia to develop into dementia or other similar cognitive problems, according to Mayo Clinic. For some people, aphasia is a permanent condition whereas others may only experience the symptoms temporarily and regain close to full functionality after a period of time and treatment.
Caregiving and Aphasia
Someone who is living with aphasia may need to rely on a caregiver to assist with communicating successfully and understanding communications. It is possible to regain some speech and comprehension skills through therapy and use of various medical devices.
Lingraphica, a company that manufactures devices to assist people who are living with speech and language impairments, conducted a survey in 2020 of family caregivers to those who are living with aphasia. Like other types of care, the survey showed increased stress levels for the family members and deteriorating relationships with their loved one.
Among the biggest caregiving challenges were:
- Inability to communicate or converse with the person with aphasia.
- Adjusting to increased dependence by the person with aphasia.
- Finding time for self-care and keeping with household activities or chores.
- Financial resources.
The American Speech-Language-Hearing Association provides these tips for communicating with a person who has aphasia:
- Get their attention before you start speaking and make eye contact.
- Minimize distractions when talking; turn off the TV or radio and find a quiet place.
- Shouting or talking loudly is not needed or necessarily helpful.
- Be respectful and down talk down to them, but try to keep the words simple.
- Be patient when this person is trying to say something.
- Consider using other ways to communicate such as drawings, writing, and facial expressions, which can sometimes be more easily understood than words.
- Ask “yes” or “no” questions.
- Allow them to make mistakes as they re-learn this skill and don’t get frustrated.
There can be different challenges for people who are bilingual or multi-lingual and they may be able to communicate better in one language than another.
Moving Forward with Aphasia
There are various treatment options that a doctor may recommend after they make a diagnosis of aphasia. There are medications, therapy, and brain stimulation that may be prescribed depending on the severity of the symptoms.
A caregiver may be needed to help with setting up appointments for treatments, transportation to and from therapy and follow-up medical appointments, medication reminders, and help at home with reading instructions on things like how to cook certain foods or a doctor’s prescription.
Like people who are living with other chronic conditions, people who are living with aphasia may be at risk for depression and loneliness as they withdraw from previously enjoyable activities and familiar exchanges with friends and family.
Bobbi Dempsey wrote an article about her aphasia for HuffPost in which she stated, “It has gotten to the point where I often just avoid interactions requiring me to speak.”
Dempsey noted that her experience did give her a new sympathy and understanding for others like her own mother who was diagnosed with Parkinson’s and Lewy body dementia. “…[those] significantly affected her ability to communicate and often left her struggling for her words.”
Finding a support system of therapy, medical professionals, and quality in-home care services can alleviate feelings of frustration and despair after a diagnosis of aphasia, Dempsey and others say.