The Stroke Association in Northern Ireland shares survey to mark Aphasia Awareness Month

The fear of being unable to communicate has been laid bare in a new survey⁽ⁱ⁾ of over 2,000 people across the UK. Research conducted by the Stroke Association reveals that nearly half of the respondents (41 %) can’t imagine living in a world where they couldn’t communicate. A world without communication is an everyday reality for the 350,000 stroke survivors across the UK ⁽ⁱⁱ⁾ like Jessie McConkey from Coleraine, living with aphasia – a communication disability, that is most commonly caused by stroke.

The research has been carried out by the Stroke Association to mark Aphasia Awareness Month and to encourage stroke survivors living with aphasia to use the information and support that’s available from the charity so they can navigate the challenges aphasia brings.

Aphasia can affect a person’s ability to speak, read, write and use numbers, but it does not affect intellect.

The charity’s latest survey also reveals people’s biggest fears if they lost their ability to communicate:

• Over a quarter (27%) of people feared not being able to carry out everyday activities
• Over a quarter (27%) of people feared how it would affect their relationships with family and loved ones
• Around one in five people (19%) feared being lonely
• 12% feared not being able to express their emotions
• 4%feared losing their job or losing their friends.
• Nearly half (45%) of people said they rely most on meeting face to face or talking in person
• One in five people (20%) rely on email, text or instant messaging
• Around one in ten (13%) depend upon talking on the phone
• Almost one in ten (8%) rely most on reading for work or leisure.

Jessie McConkey is aged 67 and lives with her husband Crawford in Coleraine. Jessie had a stroke whilst at home one evening in August 2019 and now lives with aphasia and fatigue as a result.

Jessie says: “The evening it happened, I remember cooking a family meal for my daughter Amy’s birthday and shortly after that I remember just not feeling right. I didn’t know what it was but I just took myself off to bed to see if I could sleep it off. The next day, I didn’t feel any better and I found my speech becoming difficult. I knew the FAST signs of a stroke but to me, it didn’t seem to be that. Eventually I said to my family that I just wasn’t well. A friend of mine who is a nurse told me to get to the hospital immediately. So I went to Causeway Hospital and after a scan, they confirmed that I’d had a stroke.”

Jessie stayed in Causeway Hospital for four days and although she didn’t seem to have any lasting effects in terms of mobility, Jessie had lost the ability to speak.

Jessie continues: “I knew the words I wanted to say but I just couldn’t say them and I could hear myself making no sense at all. I had to learn to speak all over again. It was just awful. Even now, if I can’t say the right word at the right time, I get very stressed and annoyed with myself. I loved to chat with family and friends and so this new reality for me was so hard in the beginning. I had to learn to read again too. Going right back to the start. Looking at pictures of dogs and cats and having to relearn the word ‘dog’ or ‘cat’. I knew what I needed to say but I just couldn’t say it.”

“It was so hard for my family too. My husband and daughter had to cope with this from day one. Before the stroke I was so outgoing and chatty and now I’d get so cross and frustrated when I couldn’t make myself understood. I would say things like ‘I’m not stupid. It robbed me of my self-confidence.”

“After three months of speech and language therapy from my Health and Social Care Trust, I was contacted by Sharon Millar from the Stroke Association’s Speech and Language Therapy team. I started attending small group sessions with Sharon and three other stroke survivors. It was so good to be able to explore communication in this way. We were able to share our experience and how we really felt and work on ways to improve our speech and communication again in a safe space. My confidence started to return and I could tell my communication was getting better. Of course then the pandemic hit and we could no-longer meet up face to face but Sharon and the team switched to running the group sessions online using Zoom. It was an absolute lifesaver. I really do get a lot out of them. We do exercises and quizzes to help us practice finding words and communicating in other ways.”

“The team at the Stroke Association have given me my life back again. I’d lost so much after my stroke and my confidence was so low. The people I met at the Stroke Association sessions are like a part of my family. If I didn’t have this aphasia group I don’t know what I’d do.”

The Stroke Association’s Communication Plus programme is a professionally led service that supports people living in Northern Ireland with communication difficulties following a stroke. Using a range of creative approaches, our team works with groups of stroke survivors to improve memory, enhance communication skills and build confidence after stroke.

The charity’s survey also highlighted how vital communication is to our everyday lives⁽ⁱ⁾:

For many stroke survivors with aphasia, these commonly used communication tools are either a challenge or impossible to use.

Juliet Bouverie, Chief Executive of the Stroke Association said:

“Aphasia is incredibly common after stroke, affecting one in three stroke survivors. It robs you of the ability to talk to loved ones, to do everyday tasks such as go shopping, use public services or get online - things we all take for granted. People with aphasia often feel lonely and isolated too, which can impact their relationships.

“But there is hope and the brain can recover and adapt. Stroke survivors with aphasia can make improvements as well as developing alternative ways of communicating. Get in touch with the Stroke Association to find out how we can help. We’re here to support people with aphasia to rebuild their lives and to regain their confidence and independence. Our “Getting Online for People with Aphasia” guide equips you with the skills you need to get online, keep in touch with family and friends and to connect with the stroke community. Support is also available through our stroke support groups, My Stroke Guide and communication support service.

“It’s also incredibly important for the public to be aware of what aphasia is, the things to look out for and to learn strategies that might help those with aphasia living in their community. We all have a part to play in adapting our communication to be inclusive for all.”

If you or someone you know is living with aphasia, visit stroke.org.uk/aphasia for information and support.

The ‘Getting Online for People with Aphasia’ guide is available at: www.stroke.org.uk/aphasiaonline

My Stroke Guide is available at: https://www.stroke.org.uk/finding-support/my-stroke-guide

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