June is aphasia awareness month. The National Aphasia Association 2016 survey revealed that a huge 84.5% of people have never heard the term “aphasia”. Only 8.8% can identify it as a language disorder. Aphasia is a disability affecting speech, understanding, reading and writing to varying degrees, and it is commonly caused by stroke. According to the Stroke Association, in the UK around a third of stroke survivors live with aphasia. It has a huge impact on social participation and quality of life.
When conversation breaks down the impact of aphasia hits home very abruptly for people and their families and friends. People with aphasia and their families tell us that a key goal is to regain the ability to have conversations that go beyond conveying basic needs [Wallace et al 2016]. They want to be able to have ‘deeper conversation’ and ‘more in-depth discussion’ [p.9]. We all value our ability to have conversations like that. So it should come as no surprise that people with aphasia and their conversation partners want this too.
So as a speech and language therapist, what three things can you do today to promote better conversations with aphasia?
Use Video Feedback
- Get to grips with using video feedback so your clients can evaluate their own conversation successes and challenges.
- If you avoid using video in your clinical practice, identify the barriers and commit to explore a solution – Are the barriers personal? Service-based? About Resources?
- Harness the power of colleagues and friends who are into technology
Promote Conversation Practice
- Follow-up advice to your clients on good communication strategies with practice, practice, practice
- Don’t just model good strategies and expect people to automatically pick them up
Try out the Better Conversations with Aphasia free e-learning resource
- Work through sections with colleagues as a continuing professional development activity
- Try the modules called “What is conversation therapy?”, “Does conversation therapy work?”, “What is conversation?” and “What is conversation like when you have aphasia?”
- See our Quick Links User Guide to help you navigate to more content
- You can access Better Conversations with Aphasia for free here
Want to know more about what conversation is and how it works? How it can break down in aphasia? And what can be done to help? Read on!
Conversation is a skill we don’t remember learning. We take it completely for granted, until it is gone. Been on holiday with little or no grasp of the local language? Then you have some insight into what can go wrong. We hold conversations for a significant part of each and every day. Short and long. Mundane and extremely serious. Gossipy, chatty, stilted or formal. At home, at work, in interviews or as part of accessing healthcare. Conversation is the way we make decisions in our lives, and it is the glue of relationships and community participation.
When we have a conversation with someone, we follow rules. But we are largely unaware of this. Rules about who talks when (turn taking), about how and when to fix misunderstandings or correct ourselves and others (repair). Rules about how we put together what we want to say to ensure someone understands us (turn construction). Even rules about where and when to use words like ‘oh’ and ‘well’, and even ‘umm’ and ‘er’ (fillers). You thought conversation was a messy, free-for-all? Think again!
People with aphasia pretty much retain their knowledge of the rules of conversation, even when words and sentences are extremely difficult. People with aphasia are competent social actors. Which is extremely good news – a real strength on which to build. But aphasia makes people vulnerable to unsatisfactory conversations in other ways. These tend to fall into two categories, problems with finding the words, phrases and sentences, and problems caused (however unintentionally) by the conversation partner. Most of us have a painful memory of trying to use our one or two words of a foreign language to attempt to buy something in a shop, or even worse to try to find a solution to an unexpected situation. It can be tough – remember feeling stupid, fearful, frustrated, nervous, unsure, quick to give up and leave? I certainly do! But do you remember also how much worse or better the person on the other side of the counter could make it? This scenario is the reality of aphasia for many people from the moment they wake up until they go to sleep, every day.
Research into how conversations work when people have aphasia has shown that there are things people do that act as ‘barriers’, and strategies that people can use that act as ‘facilitators’. Both affect the flow of conversations and how enjoyable they are. Some examples of barriers for people with aphasia include word finding difficulties (‘I know it but I can’t say’), and taking a turn in conversation can be very slow and laborious. For conversation partners, barriers include the temptation to fill all the silences, and to ask a question when they already know the answer (a test question). This becomes a ‘test’ for the person with aphasia to answer correctly. Facilitators used by people with aphasia vary, but writing, gesture and saying a key word to introduce a topic can all help. For conversation partners, leaving space to talk, prompting writing or gesture, and offering comments instead of test questions are all useful strategies. But the reality is that conversations are very individual to particular speakers, so one-size-fits-all strategies are not as good as strategies fitted to the conversational style of the partnership.
The good news is that strategies that facilitate conversations with aphasia can be learnt. There is good evidence from the world of speech and language therapy research that training conversation partners, be they spouses, hospital staff or carers, makes them better at using facilitative strategies [Simmons-Mackie et al 2016]. And it most likely also helps people with aphasia to be more involved in conversations. But we know less about how best to train people with aphasia themselves to use helpful strategies in their everyday conversations. We still tend to suggest things like ‘if you can’t say it, try writing it down’. But we don’t give people with aphasia the opportunity to practise actually doing this successfully in a real conversation. It’s like any new thing someone tries to learn, it takes practice to get it right.
Do people with aphasia get enough practice and feedback from speech and language therapists about their use of conversation strategies with family and friends? No, I don’t think they do. I firmly believe that some people with aphasia can learn excellent strategies to compensate for their communication problems, and can get back to having enjoyable conversations. But we need to offer more targeted support to help them and their conversation partners to get this right.
Better Conversations with Aphasia (or BCA) is a therapy that trains a person with aphasia and a key conversation partner to develop the best strategies for them, as decided by them with the support of a speech and language therapist. My colleagues and I decided to develop Better Conversations with Aphasia to give people with aphasia and their families that ever so important practice of having a conversation. And we wanted to help them to learn to independently problem-solve solutions to those daily road blocks to communication.
We always suspected that video feedback would be a really good way of making ‘conversations about conversation’ accessible. If someone asked you to reflect on a conversation you had yesterday – what went well and what was less successful about your communication – I’d be willing to bet that you’d struggle. I know I would. So we can’t just ask people with aphasia to think back, we have to find a way of making it possible to re-live actual conversations that meant something to them. Video does this beautifully.
In preparation for Better Conversations with Aphasia therapy, the person with aphasia and their chosen conversation partner make a few short videos of themselves at home having a chat. This can be on their own device like an iPad, or we lend a camera. Filming works best at a point in the day when people have something to decide on, plan or catch up about, or even to reminisce about. It’s best to avoid videoing a conversation about something that has already been discussed or decided, because then it becomes stilted and artificial, a performance for the camera. And we don’t do the filming – people do it themselves without us hanging around making them self-conscious.
We asked people who had Better Conversations with Aphasia therapy what they thought about making and seeing videos of their conversations. They rightly said it could be tough, and it needed handling sensitively. But they were very clear that it was often the thing that changed their conversations the most. People told us it convinced them they were still able to talk to each other, despite the aphasia. And they saw that they were already using some good strategies. So it wasn’t all about learning what the barriers to conversation were – it was just as much about seeing the positives. This proved much more powerful than just being told they were doing something well.
The Better Conversations with Aphasia therapy is freely available to speech and language therapists via our online resource of the same name. This also has learning materials including ‘What is conversation?’, and ‘What is conversation like when you have aphasia?’. A lot of this material is aphasia friendly. There are videos of real-life conversations between people with aphasia and family members. Also, people with aphasia telling us in their own words about their experiences of conversation, what it means to them, how it has changed, and what BCA therapy was like.
You can access Better Conversations with Aphasia for free here.
National Aphasia Association Aphasia Fact sheet https://www.aphasia.org/aphasia-resources/aphasia-factsheet/ Accessed 28/06/17
Simmons-Mackie, N., Anastasia Raymer, A. and Cherney, L.R. (2016) Communication Partner Training in Aphasia: An Updated Systematic Review. Archives of Physical Medicine and Rehabilitation, 97, 12, 2202-2221.e8, http://dx.doi.org/10.1016/j.apmr.2016.03.023
Stroke Association (2017) State of the Nation: stroke statistics. https://www.stroke.org.uk/resources/state-nation-stroke-statistics Accessed 28/06/17
Wallace, S.J., Worrall, L., Rose, T., Le Dorze, G., Cruice, M., Isaksen, J., Pak Hin Kong, A., Simmons-Mackie, N., Scarinci, N. & Alary Gauvreau, C. (2016) Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF. Disability and Rehabilitation, 39, 14, http://dx.doi.org/10.1080/09638288.2016.1194899