This post was co-written by Ellayne S. Ganzfried, M.S., CCC-SLP, ASHA Fellow & Executive Director of the National Aphasia Association.
On June 25th, 2012 Senator Tim Johnson of South Dakota sponsored a resolution recognizing June as National Aphasia Awareness Month. Its very powerful and important initiatives included the following:
“Whereas the people of the United States should strive to learn more about aphasia and to promote research, rehabilitation, and support services for people with aphasia and aphasia caregivers throughout the United States.”
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“Whereas people with aphasia and their caregivers envision a world that recognizes the ‘silent’ disability of aphasia and provides opportunity and fulfillment for people affected by aphasia: Now, therefore, be it Resolved, that the Senate…
- Supports efforts to increase awareness of aphasia
- Acknowledges thataphasia deserves more attention and study to find new solutions
- Supports efforts to make the voices of people with aphasia heard
- Encourages all people in the United States to observe National Aphasia Awareness Month”
This resolution captures four primary themes worth exploring: awareness, research, innovation and advocacy.
AWARENESS: “Support efforts to increase awareness of aphasia”
The National Aphasia Association (NAA) defines aphasia as, “an acquired communication disorder that impairs a person’s ability to process language, but does not affect intelligence.”
Based on my many years working with people who have aphasia, the statement, “but does not affect intelligence” really strikes a chord. One of my former clients with aphasia noted:
“The hardest thing about this is that you see the word in your mind, but can’t get it out. You hear a word, and can’t take it in. It is like you are trapped in your own world. People treat you like you are unaware of the problem.”
Causes of Aphasia
The National Institute of Neurological Disorders and Stroke (NINDS) notes that:
- Aphasia is due to damage to the areas of the brain that are responsible for language
- Aphasia is not a disease, but a symptom of brain damage that often results from
- Brain Tumor
- Head Injury
Types of aphasia and the Client Perspective
During my time in the field, I only knew of two forms of aphasia – expressive and receptive. It is important to learn about all forms, as aphasia can affect each person differently. This breakdown provides a summary of these forms, and how they impact quality of life:
Expressive (Broca’s) aphasia: non-fluent
Client Perspective: It is hard to convey thoughts through speech or writing. The client knows what he wants to say, but cannot find the words.
Receptive (Wernicke’s) aphasia: fluent
Client Perspective: It is hard to process (receive) the spoken or written words. The client hears the voice or sees the print but cannot make sense of the words.
Client Perspective: It is hard to find/use the correct name for particular objects, people, places, or events. The word is always on the “tip of the tongue.”
Client Perspective: The client cannot speak or understand speech, nor can he read or write. This is the most severe form of aphasia, typically seen right after injury to the brain.
Primary progressive aphasia (PPA)
Client Perspective: The client has a language disorder that gets worse over time, but maintains ability to take care of himself, pursue hobbies, and, in some instances, remain employed. PPA is a clinical dementia syndrome.
RESEARCH: “Aphasia deserves more attention and study to find new solutions”
Need for improved clinical practice guidelines
When conducting research, I always start by reviewing the most current, validated clinical practice guidelines for diagnosis and treatment. These were difficult to find. I wonder if this due to the fact that aphasia is often considered a “symptom” rather than a condition.
In March of 2013, Alexia Rohde conducted a thorough evaluation of aphasia clinical practice guidelines and noted that:
“Improvement is needed in the quality of methodological rigor in development and reporting within clinical guidelines, and in Aphasia-specific recommendations within stroke multidisciplinary clinical guidelines…The Royal College of Speech and Language Therapists (RCSLT) 2005 guideline provided the most comprehensive Aphasia coverage, but demonstrated lower methodological rigor.”
Similarly, Dr. Neila Donovan of Louisiana State University notes that:
“Aphasia needs to be evaluated outside the medical model and seen not just as an impairment that affects the body, but one that affects a person’s identity.”
So, there is a need for more robust, holistic clinical practice guidelines. But the RCSLT 2005 Guidelines seem to offer our best guide today. Key approaches include:
- Assessment of language, reading, writing, and auditory processing (ability to hear and understand language)
- Speech therapy
- Computer-based therapy
- Multimodal treatment – using multiple forms of communication (see it, hear it, say it, feel it, do it)
- Reading and writing therapy
- Evaluation of client and family goals/perspectives
- Access to support services and peer support
The National Center for Evidence-Based Practice in Communication Disorders and the American Speech-Language-Hearing Association both capture these guidelines in great interactive guideline maps that are worth visiting.
Access to aphasia experts
The National Aphasia Association encourages clients and family caregivers to form an experienced aphasia care team that could include a:
- Speech-language pathologist
- Physical therapist
- Occupational therapist
- Physiatrist (physician specializing in rehabilitative medicine)
- Social Worker(s)
For help building your team, use this national directory of aphasia programs and treatment centers.
Need for more current, robust client and family caregiver surveys
Once again, it was very difficult to find peer-reviewed articles that offered client and family caregiver survey findings. One recent study, published in May, does detail what people living with aphasia think about the availability of aphasia resources. And the NAA did revisit findings from a 1988 survey and published the following key outcomes:
72 percent of clients were unable to work. Those who have re-entered the work force reported taking positions with minimal demands because of language limitations.
70 percent of clients felt that people avoid contact with them because of difficulty with communication.
- “We need to feel welcome to visit people and we do not. Even several family members make us feel as outsiders. We have no visitors…and lead very lonely lives.”
90 percent of people with aphasia felt they were isolated.
- “We found ourselves left out of things we’d enjoyed before.”
- “People, supposedly close friends, ignore my husband who is aphasic.”
- “I find many times, I’m treated as if I’m not there.”
Need for peer-to-peer learning and support
Given the isolation captured above, it is important to drive opportunities for peer-to-peer learning. Online peer connection programs and opportunities can help you find that essential contact.
INNOVATION: “Support efforts to make the voices of people with aphasia heard”
I have always loved the saying, “when one door shuts, another opens.” The American Stroke Association’sStroke Connections spring 2013 publication captures this concept by sharing new, innovative aphasia programs and technologies. Here are a few examples:
“Then and Now – Advances in Therapy for Communication” (Jon Caswell)
Highlights the benefit of social conversation, peer support, communication therapy and guided computer-based therapy
“Talking Tech – Technology Expands Communication Opportunities for People with Aphasia” (Block and Mercado, 2013)
Highlights the following innovative solutions:
- Use of touchscreen/tablet devices
- Use of helpful apps
- Text-to-speech and speech-to-text
- Talking picture dictionary
- Phonemic cues (using letter/word sounds)
- Video call
- Talking dictionary
- Hobby/interest apps
It is also very exciting to see that the National Aphasia Association has partnered with AfterWords to develop a new documentary movie capturing real stories from people living with aphasia.
ADVOCACY: “Encourages all people in the US to observe National Aphasia Awareness Month”
The National Aphasia Association (NAA) and Aphasia Hope Foundation (AHF) offer events and activities that people living with aphasia and healthcare providers can support. This is a great way to drive improved outcomes for people living with aphasia.
National Aphasia Association:
Aphasia Hope Foundation:
American Stroke Association:
Fight Aphasia Solutions Toolkit:
The following interactive toolkit offers immediate access to best practice aphasia tools and solutions:
For Clients and Family Caregivers
Books, CDs, and Videos:
Online Peer Connections
Support for Family Caregivers
For Healthcare Providers
Information and tools for Speech-Language Pathologists:
Quality of Life Assessment Tools:
General Resources and Tools