A new documentary is helping to bust myths about language and communication disorder, aphasia – including the assumption that it is a rare condition, and that it only affects elderly people.
Aphasia impacts people's ability to speak, use numbers, read, and/or write, and most commonly affects people after a stroke – with over a third, of the UK's 1.3 million stroke survivors, struggling with the condition.
It can also result from neurodegenerative diseases, such as Alzheimer's – leading many people to believe that aphasia causes memory loss, which is not the case.
And whilst there is no cure for aphasia, one in ten mistakenly believe the condition cannot improve.
Meanwhile, a survey of 2,000 adults found that over half (54%) have simply never heard of aphasia.
And one in five admitted that if they encountered someone who had difficulty communicating, they would assume that person had learning difficulties – another common misconception about aphasia.
Of those who have heard of aphasia, 72% would struggle to identify the symptoms – and even of those who felt they could, three in five were unable to spot one of the most common symptoms.
Juliet Bouverie OBE, chief executive of the Stroke Association, which has also produced a documentary, “When the Words Away Went”, said: “Aphasia is very common, affecting over a third of stroke survivors – so it’s disheartening to see such low awareness and knowledge of aphasia among the general public.
“Most of us can’t imagine living with aphasia, but it makes everyday tasks like getting on the bus or talking to a friend daunting – made worse by misconceptions that people with aphasia lack intelligence.
“This can often lead to anxiety and depression, feeling excluded from society, and difficulties with personal relationships.”
The research also found 71% of adults think being able to speak or communicate well is a sign of intellect – which can cause huge barriers for those with aphasia.
Meanwhile, 28% owned up to judging people too quickly if they notice they are struggling to communicate.
Other misconceptions around aphasia include 22% believing aphasia only affects someone’s ability to talk – with just 4% feeling very confident in communicating with someone who had aphasia.
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However, 73% said they would feel deep frustration if they found it hard to understand written or spoken language, speak, read, or write letters and numbers.
More than half (54%) would feel isolated, 43% embarrassed, and 38% would consider it a loss of their identity.
To raise further awareness of aphasia, 51% of those polled, via OnePoll, would like to see it publicised more in the news, while 37% think affected celebrities talking about it could raise its profile.
Juliet Bouverie, from the Stroke Association, added: “We want to encourage everyone to watch our new documentary, featuring stories from three inspiring stroke survivors impacted by aphasia, so the public can better understand the condition and become an ally to those affected.
“Together, we can help make the lives of those living with aphasia a little bit easier, and provide support and an important reminder that there is hope.
“Aphasia can and does improve, and with the right help people with aphasia can live normal lives.”
TOP APHASIA MYTHS BUSTED:
- “It’s a rare condition” – Aphasia affects more than 350,000 people in the UK.
- “It only affects elderly people” – One in four stroke survivors are of working age.
- “It affects a person’s intelligence” – People with aphasia know exactly what they want to say, but they can struggle find the right words or get the words out. It can change the way someone communicates, NOT their intelligence.
- “Aphasia causes memory loss” – Aphasia from stroke doesn’t cause memory loss. However, it can result from neurodegenerative diseases, like Alzheimer's and Huntington's, which affect a person's memory.
- “People with aphasia can’t recover” – While there is no cure for aphasia, many have made progress with their ability to speak, read and write, and understand numbers, and gain a sense of independence again. However, raising awareness and treating people with kindness, patience, and inclusivity – alongside therapy and wider support – will have a huge impact helping people to live their lives.
APHASIA ETIQUETTE TIPS:
- Ask: Face the person when speaking to them. Speak slowly and clearly, keeping sentences short. Ask them what helps – for example, that could be drawing or making gestures.
- Wait: Without interrupting, wait for their reply. If they seem confused, try repeating your sentence, or simply rewording it. You could try writing down key words, or making key gestures or drawings.
- Listen: Check whether yes/no responses are reliable, as answers can get mixed up. A simple thumbs up or down could help.
Don’t pretend to understand when you don’t. Write down the options – yes, no, and “I don’t understand” – so they can point to the right answer.
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