June Is Aphasia Awareness Month … But Do You Know What Aphasia Is?

Aphasia – a disorder of language - is estimated to occur in roughly 1/3 of people who experience a stroke. This means it is quite common, yet it is relatively unknown.

Aphasia impacts language - not cognition/intellect. A person with aphasia will know what they want to say, but will have difficulty finding words, speaking, reading, writing and/or understanding. The most common and noticeable symptom is word finding difficulty.

“I know it… I just can’t speak it” says one person with aphasia.

Many of us experience this “tip of the tongue” phenomenon, but with aphasia, it is significant. If we think about our brains having an organised library of words that we can easily access; with aphasia the library has been shaken up, the books have fallen off the shelves and become mixed up; you know the word/book is there, you just cannot find it.

The impact of aphasia is huge. As well as making it hard to express your needs and wants, aphasia may lead to social isolation (even within families), difficulties with relationships, difficulty finding work, and depression (present in 60% of people with aphasia post-stroke).

Aphasia is caused by damage to the language centre in the brain (usually in the left hemisphere). The most frequent cause is stroke, but infection, traumatic brain injury or a brain tumour can also lead to aphasia.

Says Kate Milford, one of the Founding Trustees of AphasiaNZ, “with roughly 89,000 New Zealanders currently living with the effects of stroke and an estimated 1/3 of people with stroke having aphasia, we think over 29,000 people are living with aphasia - and this only accounts for aphasia due to stroke.” For comparison, roughly 13,000 people are living with Parkinson’s Disease and 70,000 are living with dementia mate wareware.

With New Zealand having the fourth highest stroke incidence in the OECD, a trend in younger people with stroke, and with Maori and Pacific Peoples experiencing stroke 10-15 years younger than others, aphasia may play a part in the lives of more New Zealanders than in known.

Despite aphasia being common and consequential, awareness and knowledge are low. International studies find 1% - 66% of populations report awareness of ”aphasia”, but only 5% - 17% hold basic knowledge. The latest study in New Zealand (2013) suggested 11% of the general population were aware, but only 1.5% had basic knowledge of aphasia; in the health care sector, 68% were aware and 21% had basic knowledge of aphasia.

So why is awareness so low? Milford says, “I think awareness is low for a few reasons. Aphasia is a difficult concept to get your head around – we think about ‘speech’ and not being able to talk, but we don’t necessarily think about ‘language’ and what the loss of that actually means. Our awareness slogan reflects this - Until you have met it, you just don’t get it!

Also, when you have aphasia, it is difficult to explain it to other people. And many people with aphasia feel embarrassed at not being able to communicate – there is a perception that saying the wrong word, or being unable to reply to a question means that the person is cognitively impaired. So people with aphasia withdraw from activities and social events.

Awareness and knowledge matter, as it is the response of others, to people with aphasia that can make the most positive difference to their lives. Milford notes “other people CAN help – they can adapt their communication, and get to know the person’s own way of communicating. People with aphasia all have strengths – and never cease to amaze me – but you have to stop, spend time and really meet them.”

For more information and/or support for aphasia, individuals should contact a local Speech Language Therapist via their GP, or go to aphasia.org.nz.

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