What is Aphasia?
Aphasia (pronounced “uh FAY zhuh”) is an impairment in language following neurological (brain) damage. “Language” refers not only to the ability to express yourself verbally (i.e. to “speak”), but also to the abilities to listen and understand, read and write. All of these abilities depend to some degree on the language centres of the brain, and are vulnerable to damage to these areas or to other areas of the brain that connect with these areas.* In aphasia, any or all of these abilities (speaking, listening, reading and writing) can be affected to various degrees.
The specific symptoms and severity of aphasia vary widely. Truly, each person’s aphasia is different from all others. Because of this, it is difficult to describe aphasia in a way that includes all people with aphasia. In very general terms, a person with aphasia will have some degree of difficulty with speaking, listening, reading and/or writing.
The range of difficulties for people with aphasia is vast. For some people, speaking might be extremely difficult but understanding what they hear might be relatively easy. Others may have limited ability to understand speech. Some may be able to read better than they can understand, whereas others may lose the ability to read entirely. Many people with aphasia will not be able to write, but others may be able to write better than they can talk. People may struggle to say even common, short words, or may misunderstand some of what they hear.
Aphasia can be very mild – for some people, for instance, their aphasia may cause them to have words on the tip of their tongue more frequently than is normal, or to have occasional incorrect words come out. Aphasia can also be devastatingly severe – some people are not able to speak at all and are also not able to understand speech. For most people with aphasia, their symptoms are between these two extremes.
*As you may know, our knowledge of the brain, its functions and its complexities is growing daily; this description of aphasia is greatly simplified.
What Causes Aphasia and Who Gets It?
Stroke is the most common cause of aphasia, but it can also be caused by traumatic brain injury (such as from a car crash or a gunshot wound) or disease processes such as tumours. Almost 25% of people who have a stroke will experience some degree of aphasia. Aphasia is seen approximately equally in men and women. Because stroke occurs more commonly in older individuals, we tend to see more aphasia in older people than in younger people. However, young adults, teens and even children can have a stroke or brain injury that results in aphasia.
Congresswoman Gabrielle Giffords, famously developed aphasia after a gunshot wound to the head in January, 2011. Her interactions with her speech-language pathologist are described in her book “Gabby: A Story of Courage and Hope”.
How Long Does Aphasia Last?
For some people, aphasia will be temporary, resolving in the first few days or even hours after their stroke or brain injury. Others will have a long recovery of months or years. Some people may improve to a degree in the first few months, but will still live with a severe aphasia that affects their ability to communicate for the rest of their lives. It is rare for people to make no improvement at all.
The typical pattern of recovery is for aphasia to be at its worst initially, with spontaneous recovery occurring most rapidly in the first few days, weeks and even months. Spontaneous recovery is a term used to describe the improvement that happens as the brain heals from a stroke or brain injury. Traditionally, experts have advised people that there was a finite period of time during which the brain would heal, after which improvement was no longer likely. While they disagree over the length of time, some saying that spontaneous recovery would occur in the first three months and others saying a year, there has long been general agreement that there was a “window of opportunity” for improvement to be capitalized on by therapy, after which people improved mainly by adapting to their aphasia. More recently, some experts have questioned this idea of a limited window of opportunity for improvement. Scientists now talk about “brain plasticity” and the ability for the brain to “rewire” itself.**
Many speech language pathologists who work with people with aphasia have seen people benefit from treatment years after their stroke. However, even with treatment that might improve the condition somewhat, people who still have a significant aphasia after a year has passed (known as “chronic aphasia”) are likely to always have some degree of aphasia. For these people, or for people who struggle to communicate early on in their recovery from aphasia, it is important to use various tools and techniques to augment their communication; it is also very important for friends and family members to receive training on how to adapt their own communication style to allow for the person with aphasia to participate in conversations and social activities. (For more information on this, please visit http://itawc.com/communication-tips/ )
** For some references on this subject, please visit http://itawc.com/links-and-references/
Where Can We Go For Help?
Registered speech-language pathologists are clinical professionals, usually trained to the master’s level or beyond, who provide assessment and treatment of aphasia. Other important members of the rehabilitation team for people with aphasia may include their own family doctor, a neurologist, a physiatrist (rehabilitation medicine doctor), neuropsychologist, occupational therapist, physiotherapist, social worker and community organizations like the Stroke Recovery Association of BC.
The person with aphasia and their family members and close friends are always the most important members of the team and should be involved in treatment decisions. In British Columbia, most major hospitals and rehabilitation centres have at least one speech-language pathologist on staff; ask for a referral to this person. Many hospitals also provide outpatient treatment, where people can come in to the hospital for appointments after discharge in order to receive speech and language therapy. A list of publicly funded speech-language pathologists in BC who work with adults with aphasia will be posted on this page shortly.
Only a few public health units in BC have speech-language pathologists who treat adults with aphasia as most health units offer speech services only to young children. After discharge from the hospital, many British Columbians with aphasia seek the services of private practice speech-language pathologists, who can be found by contacting the BC Association of Speech-Language Pathologists and Audiologists (email@example.com).
Communication Tips for Family and Friends
Here are some ideas that may help you to communicate better with someone with aphasia. Remember that everyone’s aphasia is different, so not all of these suggestions will work for everyone. If your family member is seeing a speech-language pathologist, you may want to print this out and take it to him/her for feedback on which of these suggestions (or others) are likely to be useful for your family member.
- First, be aware that aphasia affects language skills, not intellect. The majority of people with aphasia will not have any decline in their intellectual abilities or memory (exceptions include people who had such problems prior to the onset of their aphasia, and those who had damage to more than just the language areas of the brain in the same incident that caused the aphasia). Although this is not a perfect analogy, it may be helpful to think of a person with aphasia much as how you think about someone who doesn’t speak English; they simply cannot communicate with you efficiently but otherwise are fine intellectually. People with aphasia continue to have ideas, feelings, opinions and preferences that may be masked by their aphasia.
- Have a pen and paper handy. A pen or pencil and blank, unlined paper can be very useful in a number of ways. The person with aphasia can use it to communicate their ideas by writing the word(s) or by sketching a picture or symbol. Family members and friends can use pen and paper to write down a key word to help the person with aphasia understand the topic under discussion, or to draw a picture or map of what they are talking about.
- Use gestures freely. Encourage the person with aphasia to use gestures, hand signals, facial expressions and pointing to help get their message across. Use these same tools yourself to assist the person with aphasia to understand your message.
- Talk naturally, but perhaps a bit on the slower side. Use your natural tone of voice when speaking with a person with aphasia. It is not necessary to speak louder or to use a “babyish” tone of voice; in fact, doing either of these things may offend or irritate a person with aphasia. Over the years many of our clients have complained that people treat them as though they are hearing impaired or intellectually challenged. This just adds to their frustration. It may be helpful, however, to use a slightly slower rate of speech and to pause between main ideas, to give them a chance to process what you have said and to give them a chance to let you know if they need clarification.
- Use direct, straight-forward language, rather than quickly delivered, complicated language.
- Do not assume that someone with aphasia has understood everything you said. Depending on the type and severity of their aphasia, they may or may not have difficulties with comprehension. Even those who understand most of what you say may have some gaps in their understanding. If they are able to verbalize, get them to paraphrase what you said back to you to confirm that they understood. Otherwise, summarize the most important parts of the conversation for them, part by part.
- Have props handy. For people with severe aphasia, it is often helpful to have items like calendars, family photos, newspapers, menus and appointment books available. These can be used to assist the person with severe aphasia to get their message across.
- Facilitate, rather than correct. If someone with aphasia uses the wrong word, or uses a gesture instead of a word, avoid the temptation to correct them. If, however, they are visibly struggling to get a word out and appear frustrated, it may be helpful to give them some kind of hint. For instance, if you think they are trying to say “purse”, you could face them and say “puh”. This kind of cue often helps get the word out. Or perhaps you could try writing down what they are trying to say, as reading may (or may not) help them say the word. If you don’t know what they are trying to say, give them a pen and paper, or a calendar, newspaper or appointment book, to help them get their message out in a different way – for example by pointing, printing or drawing a sketch. Encourage them to gesture; not only might this help you know what they are trying to say, sometimes making the hand movement for something (such as bringing the hand to the mouth to indicate “eat”) helps them to get the word out. In some situations, asking a series of “yes/no” questions may help the person with aphasia to get to the message they want to say.
- Communication, rather than perfection, is the key. People with aphasia are at risk for social isolation due to their communication impairment. It is important that the people in their lives, such as friends and families, keep interacting with them, even if communication may be less than perfect. By understanding that their communication impairment masks but does not diminish their feelings, ideas and opinions, and by being open to any and all ways for your family member to get their ideas and opinions out, you can help your family member with aphasia to remain connected to their community and their families.
Helpful Links for Aphasia
- www.iTAWC.com ( the website of Intensive Treatment for Aphasia in Western Canada program)
- www.aphasia.ca ( the website of the Aphasia Institute in Toronto, Ontario)
- www.brainstreams.ca (an online education and networking site for people in the community of brain injury, including stroke)
- www.strokecenter.org (The Internet Stroke Center is an independent web resource for information about stroke care and research)
- www.aphasia.org (The website of the National Aphasia Association, a non-profit organization that promotes public education, research, rehabilitation and support services to assist people with aphasia and their families.)
- www.columbiaspeech.com ( The website of a private SLP service in the Vancouver/Fraser Valley/North Shore area for people with aphasia and other communication difficulties)
- www.bcaslpa.ca (the website of the BC Association of Speech-Language Pathologists and Audiologists, with information about the professions and about private practitioners)