Until recently, many Americans were unfamiliar with the disability condition known as aphasia. Approximately two million people in the United States suffer from aphasia in various forms. A language disorder, whether mild or severe, can be debilitating. Actor Bruce Willis’ latest diagnosis has led to his retirement from his decades-long career in cinema.
“Bruce Willis’ recent diagnosis of aphasia highlights a much-needed communication disorder,” says Dr. Jacqueline Loris-Gurr, director of the Laboratory for Aphasia and Speech Movement Disorders at Georgia State University. “Public awareness of aphasia is poor despite it being more prevalent than Parkinson’s disease and multiple sclerosis.”
Loris Goure and colleagues conduct research and develop new interventions to improve communication options and treatments for aphasia. Here, she and Dr. Amy Dietz, chair of the Department of Communication Sciences and Disorders and Georgia State aphasia expert, offer some insights into the diagnosis and what it means.
Not many people have heard of aphasia until recently, but it affects millions of Americans. What is it and how is it usually diagnosed?
Loris Goure: Aphasia is a neurogenic language disorder (often caused by a stroke) and can affect reading, writing, verbal expression and understanding others (auditory comprehension). It is not a sensory problem or a mind problem. Aphasia can affect many aspects of a person’s life including work, leisure, and relationships within the family and with friends. Aphasia is diagnosed by a speech-language pathologist who is trained to perform tests that engage the individual in different language tasks, such as describing an image, answering questions, and following directions. They also collect information about a person’s health history. Brain imaging through MRI (for example) and consultations with neurologists can also be helpful in the diagnosis. Speech-language pathologists who diagnose aphasia are certified clinical aptitude by the American Hearing-Speech-Language Association.
What are some myths or misconceptions about aphasia that you can help clarify?
Dietz: Among the common hashtags in the linguistic community, “Aphasia is a loss of language, not of thought.” People easily exchange words with language and cognition, and this is detrimental to aphasia sufferers. People with aphasia are usually able to live a full life, including participating in decisions about their lives and medical care, with appropriate amenities. Thanks to the Americans with Disabilities Act, we have lifts, ramps, wheelchair seating, and sign language interpreters everywhere we go. People with aphasia need “ramps” to get into society as well.
One of the myths about aphasia caused by stroke is that recovery occurs only in the first year after a stroke. This is 100% wrong! There are many stroke survivors who have worked hard in recovery for decades after a stroke and they are shining examples of neural plasticity. Most studies of aphasia are done in the chronic phase of stroke recovery, which is at least 6 months after the stroke – but most are 12 months after the stroke or longer. This is because at this point, much of the swelling and spontaneous healing have slowed, allowing the researchers to assign any language improvement to treatment. Over the past few decades, there has been an explosion in the development of aphasia treatment and the documentation of behavioral change. It is important to distinguish between (1) slowed recovery and spontaneous brain healing with (2) treatment-induced recovery that the brain is capable of as long as the person lives and has access to rehabilitation services.
In the case of severe aphasia, what do you expect the patient and family to experience?
Loris Goure: For the person with aphasia and their family and friends, there is a period of adjustment that requires first understanding what aphasia is and then how to communicate better. Everyone involved will learn how aphasia affects a person the most. For example, reading is affected more than verbal expression, or the understanding of others is affected more than writing. Each language impairment is accompanied by psychological and social changes including changes in identity and relationships. Also, due to the lack of public awareness of what aphasia is, the person with aphasia and the family will experience a lack of awareness and understanding in their community.
New research explores how alternative communication and other mind-body interventions can help. What is the science behind these treatments?
Dietz: In the Language Recovery and Communication Technology Laboratory, we develop and test alternative interventions for people with aphasia, including augmentative and alternative communication (AAC), mental and physical interventions. More specifically, a National Institutes of Health-funded laboratory is currently examining the role of AAC as a language recovery tool for people with chronic aphasia, using neuroimaging techniques to identify neural indicators of AAC-induced language recovery. We believe that the AAC may function as a dual-purpose tool—a tool that supports communication and facilitates self-direction by harnessing the brain’s relatively healthy visual and motor systems. As a result of this pandemic, we have added a focus on understanding how to successfully manage AAC for people with aphasia via telemedicine.
I am also a certified yoga teacher and in collaboration with researchers, clinicians, stroke survivors, co-survivors, and practitioners across the United States, we have developed a new line of research that seeks to understand how mind-body practices, including modified yoga, build resilience and coping in people with post-stroke aphasia. ischemic and other survivors. Currently, we are conducting a longitudinal study to examine how an adapted yoga program, delivered in a hybrid format, can affect flexibility, stress, sleep quality, pain management, and word fluency in stroke survivors with aphasia.
Stress and other lifestyle factors can affect the severity of the condition. What are some treatment options and interventions that you have discovered that might be helpful for aphasia sufferers?
Loris Goure: We explore the effect of stress on language performance in people with aphasia. Stress can be bad and it may not be permanent; It could be that pressure activates the language system. My lab is working to clarify this issue. We are developing methods for measuring stress including self-assessment, use of stress biomarkers, and questionnaires to assess coping strategies. Integrative health practices, including meditation, spiritual healing, laughter, and yogic breathing may be helpful for aphasia, but we are only just beginning to explore these approaches. We will learn more in the coming years as we study these interventions. Also, support can be very helpful for recovery in people with aphasia and family/friends. The Georgia Speech and Hearing Clinic offers aphasia support groups in addition to individual therapy.
There are several different types of aphasia, can you share their difference?
Dietz: When people have aphasia due to a stroke, tumor, or head injury, they experience a sudden onset of language impairment. This type of aphasia tends to be chronic, but stable (or improve with rehabilitation), as long as the underlying medical condition that led to the aphasia is well managed.
On the other hand, primary progressive aphasia, or PPA, is a progressive language disorder that can be subtle in nature and not result from a stroke, tumor, or head injury. Instead, PPA is due to atrophy or wilting of brain tissue in the areas responsible for language – the underlying cause is often unknown, but there could be a genetic component. Often, over time, a person develops dementia due to persistent brain atrophy.
What does recovery look like for people with aphasia? Is full recovery possible?
Loris Goure: There are many variables associated with recovery from stroke-related aphasia. Neuroplasticity is influenced by age, participation in speech and language therapy, access to services, motivation, and other factors. Because every aphasia and every person is different, there is no definitive answer to this question. Recovery really looks different for everyone.
Dietz: There are reports that approximately 30% of people with aphasia after a stroke “completely recover,” but this is determined by testing. It is important to remember that the test cannot tell who has recovered because risk is not the only indicator of recovery. In fact, some of the deadliest aphasia stories are those in which ‘light’ and nearly undetectable cases of aphasia have emerged. Depending on their occupation or hobbies, the slightest challenge in word retrieval may force them to retire or be expelled from recreational activities. In other situations, I’ve watched people with very severe aphasia live their lives to the fullest – which makes it hard for me to keep up! We’ve seen some patients found nonprofits such as the Aphasia Restoration Connection. They also participate in research and participate in public speaking events to raise awareness. In essence, they have learned how to renegotiate their self-identity, which is the essence of resilience and recovery.
To learn more about aphasia, please visit the National Aphasia Association website.