When the actor Bruce Willis was diagnosed with aphasia it drew attention to a common yet widely misunderstood condition. For Willis, it was a symptom of frontotemporal dementia but for other sufferers, aphasia may be the result of a stroke, head injury or brain tumour.
Around a third of people who have a stroke will experience aphasia and it is estimated to affect at least 30,000 NZ stroke sufferers. However, a 2013 study found that only 1.5% of the population and 21% of those in the healthcare sector had a basic knowledge of the condition.
Speech therapist Kate Milford is one of the founders of Aphasia New Zealand (AphasiaNZ), an organisation that aims to raise awareness of the communication disorder and support those living it.
“If you have aphasia, you can’t easily tell people about it,” Milford says. “Also, people with aphasia often withdraw from social events so it’s kind of hidden.”
Aphasia is caused by damage to parts of the brain responsible for language processing. It can affect speaking, reading, writing or understanding, and differs from person to person.
With non-fluent aphasia, someone might struggle to find the words they want to say or form complete sentences. Meanwhile those with fluent aphasia are able to speak but what they say is nonsensical and they might have difficulty understanding others.
“People with fluent aphasia can end up in secure dementia care facilities because they’re misdiagnosed as having a cognitive impairment,” says Milford.
For sufferers, as well as those around them, aphasia can be devastating and frustrating to manage.
“It will improve slowly over time but it’s not going to vanish. You have to learn to live with it and learn how to have a good life despite the fact that your language has been thrown into disarray.”
Starting therapy early is important. International research has shown that it is most effective when rehabilitation is given within a month of experiencing aphasia. Frequent sessions and at-home practice result in the best recovery, and those under age 55 are likely to improve the most.
Unfortunately, language difficulties aren’t always picked up as early as they should be. “After a stroke, people are focused on other things. Can they stand up, can they go to the toilet, can they swallow properly?” says Milford. “Then they get home and think they’re going nuts because they want to say ‘yes’ but it comes out as ‘no’, or they just called their wife their daughter. And that’s when people start to withdraw and become more and more isolated.”
In 2000, the “life participation approach to aphasia” was established. Now, rather than focusing purely on impairments, a therapist will consider what is most important to the individual, and what strategies will help most.
“It’s about how well your family adapt, how they talk to you, how your friends deal with it, and if you can still work,” says Milford. “Not only is your aphasia dependent on exactly where in the brain the damage occurred but also who you are, how frustrated you get, how important language is to you and how you used words beforehand.”
Digital technology supports therapy and offers a way of communicating. Images can be useful. For example, one sufferer recently cancelled a meeting with Milford simply by sending her a photograph of his positive Covid test. AI is now shaping up to be a promising tool.
Peer support is important, too, and AphasiaNZ has community groups – or kōrero clubs – in centres around the country where sufferers and their whānau can socialise.
“It’s a space where people with aphasia don’t have to be embarrassed,” says Milford. “The first words they come out with are often swear words and that can be difficult if you’re someone who has never spoken that way before.”
Supporting someone with aphasia is all about giving them enough time to communicate, rather than jumping in helpfully with the words they seem to be trying to say. “There’s nothing wrong with a bit of silence,” says Milford. “Having said that, I never go anywhere without a pen and paper, so if they do want help, I can write a key word down.”
