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Aphasia: guide to digital communication tools

Posted in Industry News on 29th Jun 2020

The Stroke Association launched the Getting Online for People with Aphasia’ guide on June 16th, to mark Aphasia Awareness Month. The guide will:

  • Equip stroke survivors’ who have aphasia with the skills they need to get online and use tools, such as Skype, WhatsApp, Facebook and Zoom, so they can keep in touch with family and friends
  • Enable stroke survivors to connect with the stroke survivor community

This new digital guide has been designed following a UK-wide consultation of stroke survivors’ with aphasia2. 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 covers the use of many devices; computer, laptop, tablet and smart phone. It is the first element in a suite of digital resources for people affected by aphasia which the Stroke Association are producing.

As many as 350,000 stroke survivors with aphasia, a common communication disability, are at greater risk of becoming lonelier and more isolated during the pandemic, according to the Stroke Association1. While people across the UK have been able to keep in touch with their loved ones thanks to technology, the charity is now highlighting the struggle that stroke survivors’ with aphasia face getting online.  

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%) have aphasia1. Aphasia can affect a person’s ability to speak, read, write – and sometimes understand speech and use numbers. Aphasia affects language not intellect.

Pat Sweetingham (57) from Basingstoke, Hampshire had a stroke in June 2003 which left her with aphasia and epilepsy.

Pat said: “Aphasia can feel like an invisible disability. I can talk but I couldn’t write and reading is hard. Aphasia has been hard. At first I could not talk at all. I just had a few words. When you say you have aphasia most people do not know what you are talking about. Simple tasks like getting the bus, following directions or ordering coffee were challenging but have improved over time. Some days are better than others. Some days I am tired and it makes it worse.

“Technology will not be for everyone and some people will need extra support to use it. People with aphasia must be allowed to try things out for themselves and see what works for them. One person might find a tablet easy to use while another person would prefer a laptop. Lockdown has been especially hard for people with aphasia.

“My stroke group has been using online video calls to keep in touch but this does not work for everyone. We have a few members who are on their own and they do not know how to even use a computer. They have no one to talk to and have been cut off from their normal support. We have 6 group members who are now using video call. It makes a difference to all of the group members to connect with others who understand what they are going through. Our members enjoy coming to the group because they feel normal. 

“People with aphasia have smaller social circles and lockdown has taken away many of their support lifelines like the gym, grandkids or their stroke groups. They have no one to talk to and have been cut off from their normal support.”

Juliet Bouverie, Chief Executive of the Stroke Association said: “When stroke strikes part of your brain shuts down and so does part of you. A third of stroke survivors have aphasia, which can rob you of your ability to read, write or speak. This 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.”

According to the Revealing Reality report (2019)3 commissioned by the charity, stroke survivors with aphasia said their disability was misunderstood by those close to them, as well as by the wider community. They also reported that isolation had negatively impacted their mental health and well-being, leaving them frustrated and low in confidence. The charity fears that aphasia may lead people to withdraw further from friends and family, putting them at even greater risk from isolation during the pandemic.

Juliet continues: “You don’t have to feel imprisoned by aphasia. This guide provides a vital lifeline and gives you the skills and confidence to get online. It’s particularly helpful for keeping in touch with loved ones, guiding you 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 you might face.

You don’t have to feel imprisoned by aphasia.

Juliet Bouverie, Chief Executive of the Stroke Association

“It opens up a world of opportunities that may not have been previously accessible to stroke survivors with aphasia. I’m urging you to use and share this guide. If you’re a stroke survivor with aphasia who needs help getting the guide or would like a printed version, please contact the Stroke Helpline (0303 3033 100). Stroke is a lonely experience, but we’re here to support you to rebuild your life after stroke. The guide will also help you to access My Stroke Guide an online community of stroke survivors where you can share experiences, ask questions and find solutions.”

Kamini Gadhok MBE, Chief Executive of the Royal College of Speech and Language Therapists 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.” 

References

1. Stroke Association (2018) State of the Nation. (February 2018) Available at https://www.stroke.org.uk/sites/default/files/state_of_the_nation_2018.pdf

2. Aphasia Suite (2018): Consultation with People with Aphasia. Report for the Stroke Association on the Consultation with People who have Aphasia.*

3. Revealing Reality (2019). Life with aphasia – Stage 2 report.*

*These reports are not yet publicly available. If you would like further information please contact: Sokina Miah PR & Media Officer at the Stroke Association at Sokina.miah@stroke.org.uk