Just because someone has difficulties communicating, does not mean
they have nothing to say.
Aphasia is a language disorder that is often caused by stroke or brain injury.
According to the Universal Declaration of Communication (International Communication Project, 2014), “Communication is a fundamental of human capacities. People need to be able to communicate to fulfil their social, educational, emotional, and vocational potential”.
Aphasia can affect the ability to talk, write, read and understand. People with Aphasia may have difficulties saying more than 1-2 words in a phrase, be unable to formulate a complete sentence, have difficulties finding the words to say, or may say a different word to the one they were intending on saying. They may also have difficulties understanding words, typing an email or reading the newspaper. Aphasia can affect language in different ways. Every person with Aphasia presents differently.
Aphasia can be very frustrating and only people with Aphasia could understand what it feels like. Can you imagine what it may feel like to understand what people are saying but when it’s your turn to speak, it comes out all wrong? Can you imagine what it may feel like to try and write something but only arrows come out your pen? Can you imagine being surrounding by your loved one’s talking to you in what seems like a foreign language? People with Aphasia may lose trust in their own brain.
A Speech Pathologist is specifically trained to provide treatment, education and therapy to improve Aphasia and the ability to participate in meaningful activities. Speech therapy aims to maximise brain neuroplasticity so that changes in the brain can occur. People with Aphasia can improve their communication as a result of brain plasticity, the ability for the brain to make new neural connections and strengthen pathways, even if damage has occurred in the brain.
Language is an important means for human interaction, social involvement and community participation. Language serves as a window into the mind.
The impact that Aphasia has on an individual’s life is never the same. Since communication is the core of all our daily lives, Aphasia has momentous and widespread impact. Life can be extremely challenging with Aphasia since so much of what we do day-to-day requires the ability to communicate.
The sudden and dramatic onset of Aphasia is associated with major disruptions of everyday life and affects all dimensions of quality of life. The adjustment process is complex and prolonged and people with Aphasia are especially prone to psychosocial challenges. There is a high incidence of mental health difficulties associated with Aphasia, with a prevalence of 70% of people after 3 months, experiencing severe symptoms of depression and anxiety (Kauhanen et al., 2000).
It is common for people with Aphasia to experience changes in their relationships with their significant others, disruption to their social networks, social isolation, unemployment, and disengagement from activities they previously enjoyed.
Being an “invisible” disability, many people do not understand what Aphasia is.
More often, society views an individual’s ability to communicate as a form of intelligence. When we meet someone with communication challenges, we may believe that this means that the individual is lacking in intellect. It is important to understand that people with Aphasia have not lost their intellect. Their cognition is often 100% intact. The invisible nature of Aphasia may be the very reason why the impact of this disability on quality of life is so significant, since there is no “physical” evidence of the challenge. This makes it very difficult to understand what people with Aphasia are going through.
Personal client story
I’ll share a typical example of what transpired to one of my clients, John, in his initial stages of our therapy together. There is no doubt that life suddenly changed for John, following his stroke. He was placed into an unknown world and had no choice but to make significant changes to his life.
John went to the supermarket, well prepared, with a list of shopping items he wished to purchase. He managed well, until he could not find one of the items he was looking for and needed to ask for assistance. He approached a staff member; “Ummm…. No… can’t… shelf… frozen…there is no… umm… frozen…”. John knew exactly what he wanted to say, but was not able to communicate it. The staff member became confused and did not understand what John was trying to explain to him. John was left feeling deflated, very frustrated and unhappy. The magnitude of this experience affected John’s confidence to go shopping by himself again in the future.
An Aphasia diagnosis affects not only the patient, but their entire family. Caring for someone with Aphasia presents with its own difficulties. Caregivers find themselves taking on many unexpected jobs and responsibilities. It is common for caregivers to feel resentment, loneliness, guilt, sadness and complete overwhelm. Although people with Aphasia have an opinion, their ability to express their opinion, provide explanations and sometimes even express their wants and needs is restricted. This may result in caregivers taking much more responsibility for major decisions than expected. John’s wife shared “I used to have a husband who took charge of every decision we made. We were a team. John is still my husband, but I feel as though I have lost my partner”. Educating and supporting John’s wife was equally as important as working with John directly.
Our therapy sessions together focused on recovering John’s abilities and building on additional compensatory strategies to support his communication and maximise his life participation. Our key goal in therapy was to improve the quality and efficiency of John’s communication, using meaningful tasks in combination with evidence based practice. John and I were teammates in his therapy and we set goals together. John expressed his desire to improve his communication so he could read storybooks to his grandchildren, share information about his travel experiences and connect with his loved ones around specific topics. These goals helped me design a therapy program that was going to be meaningful to him. John had difficulties talking, however his strengths included writing, reading and understand. Appreciating and utilising these strengths were an important aspect of John’s improvement. Focusing on real life situations motivated John to work towards his goals and generalise his skills in every day communication with people he connected with.
John’s journey had its highs and lows. It was key for John to have a positive attitude and believe improvement was possible. John soon realised that his brain could make new neural connections and strengthen old and new pathways. As John’s communication improved, so did his mood. He began to re-engage in the life activities that he had previously enjoyed. His optimism helped him to recognise the progress he was making with his communication and today, he still continues to strive and to attain achievable goals. John’s wife is a partner in his recovery and together they celebrate the many victories along the way.
Tasha-Bea Sergay
Speech Pathologist & Director of Specialised Speech Pathology
References:
Brown, K., Worrall, L., Davidson, B., & Howe, T. (2012). Living successfully with aphasia: A qualitative meta-analysis of the perspectives of individuals with aphasia, family members and speech-language pathologists. International Journal of Speech-Language Pathology, 14, 141–155.
Brown, K., Davidson, B., Worrall, L. E., & Howe, T. (2013). “Making a good time”: The role of friendship in living successfully with aphasia. International Journal of Speech-Language Pathology, 15, 165–175.
Kauhanen, M. L., Korpelainen, J. T., Hiltunen, P., Maatta, R., Mononen, H., Brusin, E., et al. (2000). Aphasia, depression, and non-verbal cognitive impairment in ischaemic stroke. Cerebrovascular Diseases, 10(6), 455–461.
Nätterlund, B. (2010). Being a close relative of a person with aphasia. Scandinavian Journal of Occupational Therapy, 17(1), 18-28.