What is aphasia? The communication disorder caused by an injury to the brain and affecting a person's ability to communicate, has been in the news of late, with actor Bruce Willis announcing he's stepping away from his career after being diagnosed with aphasia.
Today, there are over 100,000 Canadians living with aphasia. One in three stroke survivors are diagnosed with aphasia, and the number of people with the disorder is expected to increase significantly as the population ages.
Elyse Shumway of Canada's Aphasia Institute, describes aphasia as a disorder that results from damage to the language centres in the brain. This can be caused by a stroke, a traumatic brain injury or a brain disease like dementia or brain tumours. People who have aphasia may have difficulties in expressing themselves in words and sentences, understanding words others say, reading and writing. Because it's not well known or understood, aphasia may be classified as an ‘invisible’ disability.
"It's important to remember aphasia is a language problem, not a thinking problem. People who have aphasia know what they want to say, they still have their own ideas and thoughts to convey, and they are still competent adults," said Shumway. "Sadly, aphasia often masks a person’s intelligence and ability to communicate feelings, thoughts and emotions. Many people explain the experience as similar to being in a country where you do not speak the language well."
Shumway says a key piece of dealing with aphasia is using specific communication techniques so family, friends and the person with aphasia can overcome frustrations and continue to talk together. "These help to exchange information more accurately. People who have aphasia can share their stories, opinions, and plans and can continue to live life successfully if they are encouraged to engage in daily conversations and are supported to participate in their chosen activities."
Shumway says when the cause is a stroke, the brain can begin to heal after the incident, with some improvement expected. At other times, aphasia can be caused by a degenerative condition called Primary Progressive Aphasia (PPA) and in this case, communication problems increase over time.
Shumway points to a free video available at aphasia.ca, which explains the Supported Conversation for Adults with Aphasia method, as one aid.
"Aphasia has a devastating impact on human connection," she said. "Without the ability to participate in conversation, the result is often loss of self-esteem and profound social isolation."
Dr. Esther Kim, aphasia expert with the University of Alberta (U of A), says though aphasia will get worse if due to neurogenerative conditions, proactive work early in a diagnosis with strategies to retain function hold promise.
"We know more about the brain and how it recovers, so there's hope--people can continue to improve," said Kim, pointing to a regular Alberta Aphasia Camp run with the U of A; a weekend retreat where those with aphasia, family and friends gain understanding and communication strategies that can serve all. "People come to camp and forget they have aphasia. While living with aphasia for years and decades, people can continue to make improvements with therapy."
Kim estimates nearly 20,000 Albertans may be dealing with aphasia, and she points to group-based treatment services that exist in the Edmonton region at the Glenrose Rehabilitation Hospital and through AHS clinics. Along with the Alberta Aphasia Camp (which accepts self-referral and those from clinicians), there's also the CARE Program and work through the Calgary Aphasia Centre. Kim says she's currently recruiting participants for a tablet-based aphasia treatment study.
Interested Albertans can contact firstname.lastname@example.org with any questions about the fall aphasia camp or tablet-based study.