Around 140,000 Australians have aphasia. What is it?

Actor Bruce Willis, famous for his roles in Die Hard and The Sixth Sense, has announced his retirement from acting after being diagnosed with aphasia. In a statement, his ex-wife Demi Moore announced that Willis is “stepping away” from acting due to his diagnosis.

Actor Emelia Clarke of Game of Thrones experienced aphasia after having an aneurysm in 2011 while actor Sharon Stone had aphasia after a stroke in 2001. But this is not a Hollywood problem. In fact, more than 140,000 Australians are living with the disorder, according to the Centre of Research Excellence in Aphasia Recovery and Rehabilitation at La Trobe University in Melbourne, even though it is not widely understood.

So what is aphasia, exactly? What effect can it have on people? And what treatment is available?

What’s aphasia?

Aphasia is a language disorder after a brain injury. While strokes are the major cause of aphasia it can also be brought on by a tumour or head injury or by a degenerative brain disease known as primary progressive aphasia (PPA) (more on these below). The origin of the word ‘aphasia’ is Greek meaning “speechless”, but not in the sense of ‘mute or dumb’ but in the sense of being rendered speechless.

Aphasia occurs when there is an insult to the brain that affects the language structures, says Dr David Foxe, a clinical neuropsychologist and researcher with the Frontier Research Group at the Brain and Mind Centre at the University of Sydney. These structures are on the left (or dominant) side of the brain and are used for activities such as speaking, comprehending, reading and writing.

Foxe, who is a specialist in primary progressive aphasia, says aphasia can cause problems with “the ability to converse, articulate complicated words or put together a string of sentences”. “However, aphasia in and of itself is not a diagnosis – it does not tell us the underlying condition responsible for the language problems. For example, is the aphasia due to stroke, tumour or a neurodegenerative disease? Determining the underlying cause is important to ensure the individual is provided with the correct treatment.”

“They think of everything they want to say, but it just doesn’t come out.”

People with aphasia may talk in small, broken phrases because they struggle to put the whole sentence together, says Linda Worrall, Emeritus Professor at the University of Queensland. “They think of everything they want to say, but it just doesn’t come out,” she says.

The most common misconception is that people with aphasia have an intelligence problem. “With most cases of aphasia, it’s not an impairment of their intellect, it’s just a language problem where they struggle to communicate,” says Worrall.

Although not directly related to aphasia, people who have aphasia may experience other difficulties such as weakness to the muscles that produce speech, known as dysarthria, and an inability to perform learned movements, known as verbal dyspraxia.

Are there different types of aphasia?

The most common, as mentioned, is the result of a stroke, which causes brain damage due to a loss of blood supply to an area of the brain. Aphasia can also be caused by a brain tumour – or by a serious head injury that occurs, for example, in a car crash.

The least known and understood cause of aphasia is primary progressive aphasia, a rare type of younger-onset dementia. Like other dementias, PPA is caused by a build-up of abnormal proteins in the brain which cause cell death otherwise known as brain atrophy. So, while aphasia caused by strokes, tumours, and head injuries is not a form of dementia, PPA is. Within the umbrella term of PPA, there are three variants. The first two affect speech output and are known as the logopenic variant and the non-fluent variant; the third is called the semantic variant, and it affects language comprehension.

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There is little known about what causes PPA and its variants, but it is commonly found in people aged between 50 and 70.

Foxe says that through his research he has discovered that “cognitive difficulties in PPA extend beyond language” and that, by testing patients in areas other than just language and comprehension skills, such as attention and visuospatial abilities (identifying visual and spatial relationships among objects) they can better understand what variant of aphasia people have and how to treat them.

Is aphasia preventable?

The only way to stop aphasia is to prevent the medical conditions that cause it. Diabetes, high blood pressure and smoking are all common factors that can lead to a stroke, says Worrall, and therefore to prevent aphasia, a person would need to manage or avoid these high-risk health conditions.

However, she says that things like tumours and brain injuries are not often, if at all, avoidable and, as far as PPA goes, they still don’t know enough about it to be able to say exactly what causes it and what the preventative measures are.

What’s the treatment?

Of the people who have aphasia as the result of a stroke, about 60 per cent still have it one year post-stroke; treating it is crucial to maintaining a high quality of life.

For these people, speech therapy is the most successful form of treatment because they help rehabilitate language, says Worrall.

“It’s important not to raise your voice and speak quickly but rather slow down your speech, give the person time to respond.”

“Speech pathologists help people recover their language through different therapies, they help them with communication through compensatory approaches, and they also help the family adjust to the change,” she says.

Compensatory approaches include people drawing or gesturing; or using devices that can help write a text or email, or “the device may say the word or sentence for them”, Worrall says.

Helping families adjust is known as “conversation partner training”, Worrall explains, and it involves teaching families what “communication strategies work best for their partner or the person in their family”. When speaking with someone who has aphasia, she says, it’s important not to raise your voice and speak quickly but rather slow down your speech, give the person time to respond and have a piece of paper and a pen available where possible.

However, in the case of PPA, while speech therapy will maintain communication skills for longer, there is no cure. “It is our hope that researchers will discover pharmacological interventions which will be able to modify the disease process,” says Foxe but, in the meantime, “speech therapy and things like iPads and cue cards can help a person get through life and keep them living independently for longer.

“Treatments for PPA are emerging and relatively under-explored at this point,” he says. “We need to improve in that field.”

For information and support on aphasia go to www.aphasia.org.au