Author: Brett McCardel, MS, CCC-SLP
Ask anyone who has ever been in a hospital acute care floor before, and they will tell you without a doubt—there is a lot of jargon in healthcare. From appendicitis to xerostomia, it can be overwhelming to keep track of all the terms being thrown around. It’s even more difficult to keep track when you have the stress of a loved one in the hospital from a neurological event such as a stroke or traumatic brain injury. If your loved one is having difficulty communicating due to their neurological injury, one term you may hear being used is aphasia.
Though there are several different ways to conceptualize aphasia, my favorite definition comes from Papathanasiou, Coppens, and Davidson (2017):
“Aphasia is an acquired selective impairment of language modalities and functions resulting from a focal brain lesion that affects the person’s communicative and social functioning, quality of life, and the quality of life of his or her relatives and caregivers”
What I especially appreciate about this definition is that it highlights several important concepts to keep in mind when considering the impact of aphasia. To get a more complete understanding of what aphasia entails, it will help to further discuss each of these concepts in depth.
Impairment of Language Modalities
The first key concept in this definition is that aphasia impacts language modalities. In aphasia, we typically categorize any language difficulties into one of four categories: Speaking, Reading, Writing, and Auditory Comprehension (or understanding what others are saying). One important aspect to note about aphasia is how unique every person’s strengths and weaknesses in these different areas are.
Some people with aphasia may only have problems when it comes to speaking, however their reading, writing, and auditory comprehension may be relatively preserved. Others may have difficulties in all four language modalities and have severe challenges in each, such as not being able to understand or produce single words.
Meanwhile, others may have difficulties in all the language modalities as well, however their challenges are considered milder; for instance, they may produce and comprehend language fairly well, except for in high-demand or stressful situations. In reality, most people with aphasia are likely going to have issues with each of these modalities to some degree.
Again though, every person with aphasia is unique in terms of their strengths and weaknesses, and that makes it all the more important that they receive a thorough evaluation by a Speech and Language Pathologist so that their unique language profile can be determined, and a comprehensive treatment plan can be developed from that.
Resulting from a Focal Brain Lesion
Returning to our definition of aphasia, the next major point is that aphasia is a result of a focal brain lesion. As so nicely explained by Brookshire (1992):
Aphasia is NEUROGENIC and always results from some form of damage to the brain like a stroke or traumatic brain injury. Different areas may be affected, but the underlying cause is always neurologic
Aphasia is also ACQUIRED: It is not a developmental disorder and an individual is not born with it. It is characterized by the loss or reduction of language function in a person who had previously developed language abilities.
Importantly, it EXCLUDES other deficits: Aphasia is not a problem of sensation, motor function, or intellect. It may be accompanied by a number of other deficits, but it is not defined by it.
With all that being said, aphasia is most common following a stroke (Simmons-Mackie, 2018). Other potential reasons a person may acquire aphasia includes a host of etiologies, including: traumatic brain injury, complications from brain surgery, infections, tumors, degenerative conditions, and neurotoxins.
Quality of Life
So now that we’ve talked about what aphasia is and how it is acquired, let’s spend some time talking about the effect that aphasia has on a person in regards to communicative functioning and quality of life.
Approximately 30-35% of stroke survivors upon discharge from hospital have aphasia , with approximately 2.4-4 million people with aphasia (PWA) living in America (Dickey, et al., 2010; Engelter et al., 2006; Simmons-Mackie, 2018). THIS IS MORE THAN PARKINSON’S, HUNTINGTON’S, and ALS COMBINED. There has been some discussion as to why aphasia is so relatively unknown compared to these other diagnoses. Some people believe that it is because aphasia is more of an “invisible” disorder, in the sense that there are no immediate physical symptoms. Others speculate that it’s because there has not been a big name celebrity to have the disorder themselves (such as Michael J. Fox and Parkinson’s Disease). Additionally, advocacy for yourself and the disorder is difficult if you have trouble communicating that message to others.
Research and anecdotal reports illustrate that aphasia causes significant changes in self-image, social life, and work relations (Hilari et al., 2009; Cruice, 2006). Some people may grapple with major changes in their identity, as they can no longer fully take part in activities that helped define who they were as a person before their neurological event. Additionally, some people with aphasia report that friends may disappear from their social networks, as their friends don’t know how to communicate with them and choose to silently step back. Given all this, it’s no wonder that aphasia is strongly correlated with depression (Kauhanen, 2000; Vickers, 2010).
Aphasia does not just impact the person with the condition, however. Once a member of a family acquires aphasia, the entire family dynamic may change (Brown et al, 2011). Whereas the person with aphasia may have played a role in family functions such as paying the bills, helping out with homework for kids, and a whole host of other functions, more of these responsibilities may have to be shifted to other members of the family.
Additionally, if a person with aphasia requires a caregiver, that role will typically be assigned to the spouse. Research supports that spouses also experience feelings of loss, stress, frustration, and isolation when being the primary caregiver for a person with aphasia (Ostwald et al, 2009). There are often feelings of anger and guilt, and the couple may experience greater marital difficulties (Luterman, 2008; Draper et.al., 2007). Important to note, if a caregiver’s well-being declines, so too may their ability to care for the person with aphasia, thus increasing their risk for poor health (Ostwald et.al.,2009).
Given this, there is a critical need for people with aphasia to receive services to help them re-integrate back into their community and return to living a meaningful life.
Progress and Recovery
With all this being said, what outcomes can we expect for people with aphasia in their recovery? Aphasia prognosis is difficult to predict; however, initial stroke and aphasia severity appear to be helpful indicators in predicting language recovery (Plowman et al, 2012). As you might expect, the less severe someone’s aphasia is upon first acquiring aphasia, the better their chances for regaining more and more language function. However, this is not to say that people with severe aphasia can’t make incredible gains, or that people with mild aphasia don’t have it that bad—even mild difficulties can contribute to significant difficulty navigating day-to-day life.
Perhaps the most important thing to know however, is that there is a myth that after a certain amount of time (whether this be a couple months, 6 months, or a year), recovery from aphasia stops and people are stuck with what they have. This is referred to in the literature as the Recovery Plateau Myth, and has been shown time and time again to be untrue (Fitzpatrick et al., 2011; Nicholas et al, 1993; Moss et al., 2006). Spontaneous recovery is greatest in the first few months following the neurological event, however significant improvements can be made throughout life.
The most recent Cochrane review (systematic reviews that are internationally recognized as the highest standard in evidence-based health care) supports this, and recommends that speech and language therapy is effective for people with aphasia in regards to regaining language skills and improving QOL (Brady et al, 2016). Additionally, all the studies used in this Cochrane review only included participants who were in the chronic stage of aphasia (so at least 6 months after their stroke), again supporting the notion that significant and important improvements can be made in aphasia regardless of timeline.
Next Steps
Aphasia is a complicated condition, with many factors to consider when deciding what the next best steps forward are. Thankfully, many organizations and specialists are available to help people with aphasia and their loved ones move forward with living meaningful and full lives. To find a qualified Speech-Language Pathologist in your area, you can use a registry such as the American Speech-Language-Hearing Association’s ProFind tool (https://www.asha.org/profind/) or the National Aphasia Association’s Affiliate Network (https://www.aphasia.org/site/). Additionally, groups such as Aphasia Recovery Connection (https://www.aphasiarecoveryconnection.net/) can help to offer social support and advocacy resources.
Know that you are not alone in your journey, and that we at Archways are here to support you in any way we can! Living in the Seattle, WA area? Click here to learn more about the services we provide, or contact us at (206) 395-4259 / Brett@archwaysrehab.com
References:
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