A life without words … How can you help?
What could possibly have a greater negative impact on a person’s quality of life than Cancer or Alzheimer’s Disease? I bet your first guess would not have been aphasia. Moreover, I bet that many of you reading this have no idea what aphasia is.
Lam & Wodchi (2010) examined the impact of 60 different diseases and 15 conditions on quality of life of 66,193 people. They concluded that aphasia had the largest negative impact on quality of life, more than cancer and Alzheimer’s disease.
What is Aphasia?
Aphasia is a language problem, and can affect both talking and understanding, as well as the ability to read and write (Kagan & Simmons-Mackie, 2013).
Aphasia is usually the lasting result of a stroke or brain injury. According to Aphasia Institute, one in three stroke survivors are diagnosed with aphasia. Further, there are over 100,000 Canadians living with aphasia today (Dickey et al., 2010).
Many adults with Aphasia know exactly what is going on, have opinions on issues, have the desire to socialize, and are capable of participating in decisions that pertain to them. Aphasia affects a person’s ability to communicate feelings, thoughts and emotions, or the ability to understand what others say (Kagan & Simmons-Mackie, 2013). Intelligence is NOT affected (American Speech-Language-Hearing Association).
Why is Aphasia so devastating?
Imagine knowing exactly what you want to say, with no way to get the words out. Without the ability to participate in conversation, every relationship, every life role and almost EVERY life activity is at risk (Kagan & Simmons-Mackie, 2013). Imagine sitting in a room of loved ones and being completely unable to follow along with what is being said — Watching and following along your favorite movie is now exhausting, taking a trip to the grocery store, one you took many times prior, now fills you with complete terror. You’re ignored, lost, scared, judged, and often times laughed at. It is no doubt that without words to express yourself, comes an inevitable loss of self-esteem and a profound sense of social isolation. Through working with WJS- Acquired Brain Injury (ABI) division, I have witnessed, first hand, the lack of knowledge that is in our communities when it comes to language deficits and supporting those with Aphasia, and how we can all better serve those with any form of communication difficulties.
While physical impairments can be clearly seen and identified with symbols to provide assistance, this is not the reality for those with language impairments. Imagine being admitted to the hospital with no words, not one hello your entire stay (people assume you don’t understand or speak and therefore don’t acknowledge you), no one taking the time to make sure you understand what is happening to you, and no way to communicate your needs or your questions, all the while, knowing exactly what it is you want to ask and say, if only someone would just take the time to listen.
What can you do to help?
Working closely with Daralynn Swensrude, a speaker and advocate for those with Aphasia, through our ABI program, I have picked up some great, easy to use strategies we all can adopt in order to improve the lives of those with Aphasia.
Your first step is treat anyone with aphasia as intelligent adults (doesn’t seem that hard…right)
- Do not be scared, do not panic, and most importantly do not ignore them. If they are with someone who is offering assistance, remember to always speak directly to the person, not the person with them. I have witnessed this all first hand; people unsure of what is being said, panic and end up ignoring the person with Aphasia.
- Take the time to think of alternate strategies: Can you write the question down? Rephrase your question? Break it down into smaller pieces? Do they have an iPad they use? Can you use gestures to help? Pictures? Alphabet board? Can you re-enact instructions?
- Check back for understanding on both parties: Make sure you’re being understood and so is the person. It is always best to ask questions… “How is the best way to communicate with you? Can you repeat that? I don’t quite understand…Can you rephrase that?” Remember silence can be deafening.
- The extra time you take, could mean the world to someone with Aphasia: Can you simplify consent and information forms? Can you go into a quiet room? Can you book longer appointments? Be patient and remember the extra time you spend means the world to someone with Aphasia.
- Look up resources: Help understand what those with aphasia are going through and ways to make your environment aphasia friendly I.e. http://www.cdacanada.com/
References
Dickey, L., Kagan, A., Lindsay, M. P., Fang, J., Rowland, A., & Black, S. (2010). Incidence and profile of inpatient stroke-induced aphasia in Ontario, Canada. Archives of physical medicine and rehabilitation, 91(2), 196-20
Kagan, A. & Simmons-Mackie, N. (November 2013). From My Perspective: Changing the Aphasia Narrative. The ASHA Leader, Vol. 18(11), 6-8. doi: 10.1044/leader.FMP.18112013.6. Retrieved from http://leader.pubs.asha.org/article.aspx?articleid=1788363&resultClick=1
Lam, J. M. C. & Wodchis, W. P. (2010) The relationship of 60 disease diagnoses and 15 conditions to preference-based health-related quality of life in Ontario hospital-based long-term care residents. Medical Care, 48, 380–387.
http://www.asha.org/public/speech/disorders/Aphasia/