A guide to new technology for people with aphasia
Technology has been a saving grace in helping us stay in touch during lockdown.
However, the Covid-19 pandemic has left many people with aphasia at risk of becoming more isolated than ever before.
Aphasia is a language and communication disorder, of which stroke is the most common cause.
There are 1.2 million stroke survivors in the UK and around a third (33 per cent) have aphasia.
The condition can affect a person’s ability to speak, read and write; they may also struggle to understand speech and use numbers.
But aphasia only affects language, not intellect.
In a bid to help people through lockdown, the Stroke Association has launched a new guide.
Getting Online for People with Aphasia aims to arm stroke survivors with the tools they need to get online and use tools, such as Skype, WhatsApp, Facebook and Zoom, so they can stay in touch with family and friends.
It will also enable stroke survivors to connect with others in the same situation.
Explaining why the association felt the need to launch the guide, Juliet Bouverie, the charity’s chief executive, said: “The coronavirus pandemic has created an epidemic of loneliness, particularly among stroke survivors with aphasia.
“Everyone’s world has shrunk due to the pandemic but imagine the agony of being confined to the walls of your own head.
“A third of stroke survivors have aphasia but they don’t have to feel imprisoned by it.
“Our guide provides a vital lifeline to give people the skills and confidence they need to get online.
“It’s particularly helpful for keeping in touch with loved ones, guiding people through things like video calling.
“Aphasia doesn’t go away and that’s why we’ve developed a tool to help overcome the challenges that people face.
“It opens up a world of opportunities that may not have been previously accessible to stroke survivors with aphasia.
“The guide will also help people access My Stroke Guide, an online community of stroke survivors where you can share experiences and find solutions.
“Stroke is a lonely experience but we want people to know we’re here to support them to rebuild their lives after stroke.”
Aphasia is estimated to effect as many as 350,000 stroke survivors in the UK today.
Among their number is Arthur Bisset from Glasgow, who had a stroke two years ago at the age of 57.
Arthur was at work in a call centre when he started to feel ‘funny’. He had a strange sensation down one side of his body. He didn’t think anything was seriously wrong but colleagues called the emergency services.
He had, in fact, suffered a stroke – and Arthur was later left with aphasia.
He said: “I didn’t realise why I was reading things wrong or saying the wrong thing – it was so frustrating. I remember feeling lost.
“Somebody told me that it was aphasia. I’d never heard the term before.
“Knowing the difficulty I had communicating had a name helped me accept things.”
Arthur is delighted the new guide will help people who, like him, struggle to communicate.
He added: “Before my stroke I used a lot of technology – it was a big part of my job. But after my stroke, it was so difficult.
“My family helped me and would show me how to use the computer.
“A guide for people with aphasia to get online is useful, especially now during lockdown when people are using more technology.
“It is good to have a guide to help you work through new information and explain terms in a simple way.”
The digital guide has been designed following a UK-wide consultation of stroke survivors with aphasia.
It contains helpful information and step-by-step guidance on how to get online and search the internet.
The guide uses aphasia-friendly text, supported by pictures and key words.
It can be used with a text reader and many devices including PCs, laptops, tablets and smart phones.
The guide is available at www.stroke.org.uk/aphasiaonline. It is the first element in a suite of digital resources for people affected by aphasia which the Stroke Association is producing.
Those who would like a printed version should contact the Stroke Helpline on 0303 3033 100.
It’s a struggle to be understood
Prior to lockdown, stroke survivors with aphasia said their disability was misunderstood by those closest to them, as well as the wider community.
They also reported that isolation had impacted their mental health and well-being, leaving them frustrated and low in confidence.
These findings were part of a report, commissioned by the Stroke Association last year.
So the charity launched the online aphasia guide, amid fears the pandemic would lead people to withdraw even further from loved ones.
Kamini Gadhok, chief executive of the Royal College of Speech and Language Therapists, is among those who have supported its launch.
She said: “We know that a third of stroke survivors have aphasia and problems communicating and understanding how to use those little things that we take for granted, such as online technology to keep in touch with others.
“Even being able to read a phone number can be a huge struggle.
“These barriers often leave individuals feeling isolated and alone, so this new tool will help them to stay in touch with loved ones, keep connected with friends and find support from the aphasia community.”
Stroke strikes every five minutes in the UK and it changes lives in an instant.
The Stroke Association works across the UK to support people to rebuild their lives. With the support of the public, it also funds research and campaigns for change.
From local support services and groups to online information and support, anyone affected by stroke can visit www.stroke.org.uk or call the dedicated Stroke Helpline on 0303 3033 100 to find out about support available locally.