Analysis: one third of stroke patients experience aphasia, a language difficulty which affects their ability to understand and express themselves
Social media is awash with people pondering which of their favourite restaurants they will frequent now that we are finally permitted to venture out and socialise again. We’ve all been grieving the loss of socialising and going out somewhere else for a simple cup of tea or coffee is mind-consuming.
"How’s your cocooning?", I overhead Susan ask Mary, leaning out their respective car windows while their loved ones shopped for them. "Awful", Mary said. They continued chewing over where they will go and what they would eat when "this" is over. "Chocolate Eclairs at Christies", said Susan. Mary did one better: "scones at Christies, The Aunties for lunch and elsewhere for dinner". They laughed and sat back into their separate cars – the new norm.
But allow me to pause your pondering for just one moment. Imagine arriving at your favourite café, sitting at your favourite table, and suddenly going blank and unable to think of the name of your favourite dish when you go to order. You know what you want, but the words won’t come to you.
Aphasia is a silent disability where someone may recover physically post-stroke yet struggles are only noticed when they start to speak
This is the everyday reality for many people following a stroke. There are approximately 7,500 strokes every year in Ireland with around one third of people experiencing post-stroke aphasia. Aphasia is a language difficulty that occurs when the language part of the brain is damaged. It affects a person’s ability to understand and express themselves so they may not understand words they hear or read, or be able to say what they want to say, in the way they want to say it.
Some experience mild aphasia where they occasionally can’t remember words while conversing. For others, the words may sound ‘jumbled’ and not make sense - Roald Dahl’s wife Patricia Neal had aphasia and inspired words used by the author in The BFG. Others experience severe aphasia, completely unable to speak.
It is important to highlight that aphasia causes difficulties communicating but intelligence is not affected. Aphasia is a silent disability where someone may recover physically post-stroke yet struggles are only noticed when they start to speak. As you can imagine, aphasia makes it challenging to have conversations and even ordering a drink in a café becomes arduous if not impossible for many, resulting in isolation and limited opportunities to socialise.
Helen Kelly discusses the Aphasia Home Cafe
Launched in 2017 and facilitated by UCC Speech and Language Therapy students, the Aphasia Café runs monthly from The Haven in Cork. As with the rest of the nation, the café paused due to Covid-19 social restrictions and an already isolated community became further isolated.
In response, we moved online to a fortnightly Aphasia Home Café, where our patrons with aphasia sip their favourite cuppa in the comfort of their homes while socialising and practicing conversations via Zoom. From pets to politics, the discussions were fun and supportive and the beauty of being online meant that location was not a barrier for our patrons from Kerry, Cork, Dublin and the UK.
Online group discussions can be tricky with challenges more accentuated by the complexities of aphasia. This is what we have learned:
· Complex instructions are challenging for people with aphasia, so providing a one click link simplifies access to meetings.
· Emailing topics before the meeting allows people time to think about what they want to say. If preferred, opinions can be emailed to be read to the group; particularly useful for severe aphasia.
Technology can prevent physical distancing becoming social distancing, even with aphasia
· Family help in setting up technology or supporting communication during the discussion can be helpful.
· Calling people by name ensures everyone is included in the conversation.
· Allot plenty of time for people to process information.
· Get comfortable with pauses/delays due to word-finding or sentence formulation difficulties.
· In conversation, filler words show we are listening (e.g. yeah, OK) but becomes distracting online, so instead use nonverbal encouragers such as nodding and smiling.
· Around 90% of communication is nonverbal (e.g. eye-contact, voice tone, body posture) so be vigilant for indications that people want to contribute to the conversation. That said, online nonverbal behaviours can be misinterpreted. Eye-contact is unclear as people may look directly at the webcam or computer screen. Someone leaning forward could mean the topic interests them or they can’t hear the conversation. A frown could mean disagreement, focussing to understand the discussion, or that their cat has jumped onto their laptop!
· Encourage all ways of communicating – writing, drawing, gesturing, miming – people with aphasia are very skilled at getting their message across using Total Communication.
Technology can prevent physical distancing becoming social distancing, even with aphasia, so let’s reduce isolation for our nations’ cocooners now and after ‘this’ is all over.
The views expressed here are those of the author and do not represent or reflect the views of RTÉ
