What would you do if you woke up tomorrow morning and couldn’t find the words to communicate? For individuals living with aphasia, a disorder affecting the ability to comprehend and produce language, communication is a daily struggle.
Here in Canada, aphasia already affects an estimated 100,000 people — with the number only expected to rise as the population ages.
Barbara Purves, associate professor at UBC’s School of Audiology and Speech Sciences, has been engaged in aphasia clinical practice and research for several decades and says there’s new hope for those with the condition thanks to advances in technology.
What is aphasia and who’s at risk for developing it?
Aphasia is an impairment of a person’s ability to use language. It not only affects your ability to turn thoughts into spoken or written words, but your ability to understand what others are saying or writing.
Aphasia is the result of damage to the language areas of the brain. Most often, it’s the result of stroke — in fact one in three stroke survivors are diagnosed with aphasia. But the disorder can also be caused by other events or conditions, like traumatic brain injury, tumours or infections of the brain. There is also a form of dementia that can lead to progressive aphasia, which begins with difficulty finding words.
Aphasia can occur across the lifespan because brain damage can occur at any age. Because aphasia is most often associated with stroke, it occurs more often in older adults because the risk of stroke goes up with age. Even so, there are many younger people, ranging from late teens onwards, who live with aphasia.
You have been working with people with aphasia for nearly 40 years, first as a clinician working in acute care and rehabilitation, and then as a researcher, seeking to understand the experiences of aphasia from the perspectives of those who live with it. What inspired you to research this condition?
I have always been fascinated by language, so the topic of aphasia, linking language to brain, was particularly intriguing. However, it was meeting people with aphasia during my first practicum as a speech-language pathology student that really brought home to the impact of aphasia — and I was inspired by their resilience and creativity in coping with it.
If a person develops aphasia, how do they continue to communicate with the world around them and participate in daily life?
UBC’s Dr. Barbara Purves
Aphasia is very different from one person to the next. It’s impossible to describe a ‘typical’ pattern. There are large differences in severity — some people might have problems that appear to be quite subtle, having trouble finding a particular word or following fast moving conversations. Others may be unable to say or write any words and have difficulty understanding even the simplest of spoken or written messages.
Just as aphasia varies from person to person, so too do the communication strategies that they use. People who have lost most of their ability to speak or to write words can be excellent communicators, using their voice (even if it’s only sound) to express a whole range of emotions. Many also use their hands to gesture, draw, or write an occasional word. But for them to succeed in this, they need supportive conversation partners who are prepared to take the time to listen and watch closely, to guess, to ask questions, and to acknowledge that the person with aphasia has something meaningful to say.
How are advances in technology helping people with aphasia?
Without language, everyday communication, like writing an email or answering the phone, can become incredibly challenging. As a result, isolation is a real risk for people with aphasia. Fortunately, that’s where technology can be a huge help.
Back in 2002, I became one of the lead investigators on a multi-disciplinary research project (The Aphasia Project), which was a collaboration with computer scientists and cognitive psychologists at UBC and Princeton University. We set out to investigate how people with aphasia could incorporate emerging technologies, like text-to speech software or PDAs, into their everyday communication. I think that one of the most innovative aspects of our research was to include people with aphasia in the design phase of working out how to adapt technologies to meet their particular needs. This meant that everybody on the research team needed to learn how to adapt their own communication so that they could work directly with those participants in designing adaptations.
More recently, new advances in computer technology and software have led to the development of new apps that can give more options for supporting communication and ongoing therapy for people with aphasia. And while there have been some programs developed specifically as communication support for those living with aphasia, I think the biggest impact has resulted from devices such as smart phones and iPads — if you have aphasia and a smart phone, you can send a photo to show what you cannot tell, or you can use software applications, like Face Time or Skype, to add gestures for words you cannot say.
Outside of technology, what’s needed to support people living with aphasia?
While technology can go a long way in supporting people with aphasia, it does not offer the same solutions as it does for people, such as Stephen Hawking, for example, who have lost the ability to speak, but whose ability to use language is not impaired.
Much research, including my own, has shown a supportive environment, including conversation partners who know how to communicate more effectively with people with aphasia, is critical. I’ve started two programs here at UBC that are influenced by this research. The first is an aphasia mentors’ program, which gives people with aphasia the opportunity to serve as mentors to students in speech-language pathology, as well as other health professions. By involving people with aphasia in health professional education, we’ve been able to help students across many professions to understand more about the nature and diversity of aphasia, its impact on people’s lives, and the importance of knowing how to support their communication. Having students learn this firsthand from people with aphasia will help them become much more effective clinicians.
The second program that was started was an aphasia camp, a weekend-long event, which takes place in B.C. every fall and brings together people with aphasia, their families and health care students to explore approaches to aphasia management. The idea for the camp was actually initiated by former UBC alumna, Christy Campbell, who, at 31, developed aphasia as a result of a stroke. Campbell reached out to me about organizing a camp and I was thrilled to play a part in helping it come to fruition — this September will mark the 6th annual meet-up.
Is recovery possible for people with aphasia?
Recovery is not all-or-nothing and, like aphasia itself, it varies from person to person. Depending on many factors, some people regain much of their language ability relatively quickly after a stroke. For others with aphasia, recovery can be a longer, slower process with some abilities never regained. Some recent advances include research in neuroplasticity suggesting that people with aphasia can make gains over a much longer period of time — years, not months as we once thought.