New research from the Stroke Association reveals over half of the British public (54%) have never heard of aphasia, despite it affecting over 350,000 people in the UK.
What is aphasia?
Aphasia is a language and communication disorder – with stroke being the biggest cause. The condition often has a profound effect on someone’s ability to speak, read, write and/or use numbers.
There are 1.3 million stroke survivors living in the UK, and over a third (40%) will experience aphasia after their stroke. This means many aren’t elderly and it can affect people of all ages.
People with aphasia know exactly what they want to say, but they can struggle to find the right words or get the words out. It can change the way someone communicates NOT their intelligence.
Aphasia from a stroke doesn’t cause memory loss. However, it can result from neurodegenerative diseases like Alzheimer’s and Huntington’s, which do affect a person’s memory.
Whilst there is no cure for it, 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 on helping people to live their lives.
Aphasia etiquette tips
1. 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
2. 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
3. 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
Most Brits lack awareness of aphasia
The new research from the UK’s leading stroke charity highlights that most Brits don’t know about the disorder and the huge impact it has on people’s lives. Moreover, half (50%) of those who have heard of it are unclear as to what it actually is.
To help raise awareness of aphasia, the Stroke Association has launched When the Words Away Went, a documentary about three stroke survivors living with aphasia embarking on their journey to find their voice and rebuild their lives.
The documentary aims to equip people with the knowledge, understanding and confidence to support those living with aphasia. Currently, most people (72%) lack confidence in recognising its symptoms and less than half of people (42%) would feel confident in communicating with someone with the disorder.
Whilst aphasia does not affect intelligence, the majority of Brits (71%) think being able to speak or communicate well is a sign of intellect, which can create huge barriers for those with aphasia. In fact, a fifth of adults (20%) also admit that, if they met someone who had problems communicating, they would assume that person had a learning difficulty.
Juliet Bouverie OBE, Chief Executive of the Stroke Association 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 amongst 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.
We want to encourage everyone to watch our new documentary When the Words Away Went, 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.”
The research also highlights other common misconceptions around aphasia including, over a fifth (22%) of Brits believing that aphasia only affects someone’s ability to talk and one in ten people mistakenly thinking that aphasia can’t improve.
A stroke survivor’s experience with aphasia
Steve Smith had a stroke in December 2020. He had a cardiac arrest at home in Essex and then went on to have a stroke a few weeks later. Steve, 39, is supported by his wife Vicky and two young children.
Vicky woke up one morning to find Steve unable to speak or move his body. Steve woke up in hospital with severe aphasia and right-sided weakness.
As Steve’s stroke occurred at the height of the pandemic, he was only able to see Vicky a few hours a week and their phone calls were limited because of his speech. It was the longest they’d been apart since they first met.
Vicky remembers the day that Steve came back home “like it was yesterday”. The whole family was so excited. But they quickly realised that things wouldn’t just go back to normal.
Vicky said: “I thought to myself: ‘How are we going to do this?’ Steve couldn’t string a sentence together, the kids couldn’t have a conversation with their dad, and my partner of 15 years is a different man. At that very moment, I pulled myself together and told myself I couldn’t give up… Steve is my rock, and I wasn’t going to include ‘can’t’ into our vocabulary.”
Juliet added: “The Stroke Association is here for everyone affected by aphasia, providing 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.”
Watch When the Words Away Went online at stroke.org.uk/film or stream on Channel 4 from Friday 26th May.
Visit the Stroke Association website to find out more about aphasia and how you can support those affected.
Do you, or someone you know, live with aphasia? Share your experiences in the comments box or on social media.
