CHAPTER 1
Let's Talk about Aphasia
Ellayne S. Ganzfried, MS, CCC-SLP
Ask ten people on the street if they know what aphasia is, and it is likely that half have never heard of it. It is also likely that those who have heard of it cannot give an accurate definition. Aphasia is an acquired communication disorder that impairs a person's ability to speak and understand others but does not affect intelligence. Most people with aphasia also experience difficulty reading and writing. Because people with aphasia can think as they always have but have lost the ability to use language to convey their thoughts and/or understand others, they often use the word "prison" to describe their condition. Imagine the frustration of knowing what you want to say but not being able to say it and/or saying things that others cannot understand.
Aphasia is experienced in 21-38% of all individuals with acute strokes (Berthier, 2005), and about 795,000 Americans each year suffer a new or recurrent stroke (strokeassociation.org), making stroke the most common cause of aphasia. Other causes include head injuries, brain tumors, migraines or other neurological conditions. Aphasia can also result from frontotemporal degeneration (FTD), corticobasal degeneration (CBD), and other neurodegenerative disorders referred to as primary progressive aphasia (PPA), which is a clinical dementia syndrome.
Aphasia knows no boundaries and can be acquired by all ages, races, genders, and cultures. It is difficult to get an accurate statistic of incidence, but most agree that there are between one and two million Americans with aphasia, or 1 in 250 people. Despite these numbers, aphasia typically is not recognized or understood, even by some health professionals, compounding its devastating consequences. Too often people with aphasia are discharged from a hospital without knowing their condition has a name or that they can improve with time, speech-language treatment, and community support. People with aphasia are at a tremendous disadvantage in today's health care system, where the ability to access resources is often closely tied to the ability to advocate for oneself.
Because it involves communication, aphasia affects almost every aspect of a person's life. In a survey done by the National Aphasia Association (NAA) in 1988, many people reported that friends and even family members stopped coming to visit, because they could not communicate with the person with aphasia (PWA).
Family members may also feel strong emotions — anxiety, anger, confusion, depression, despair — and family roles may be reversed. Marriages change, and partners may feel a sense of loss. There may be tension among family members and feelings of frustration and helplessness. The condition may seem hopeless. Children may feel neglected and may find it difficult to have a parent dependent on them. It is natural to go through a grieving process when a family member develops aphasia, and family members need to be helped through this process. According to G.A. Davis "an individual's aphasia is a family problem" (1983).
Many people with aphasia cannot continue to work at jobs that require extensive reading or speaking. Health insurance coverage for services may be limited. If a person pays privately for speech therapy or other rehabilitation services, aphasia can be financially ruinous. Many people with aphasia are prone to depression due to the feelings of social isolation that result from their communication difficulties.
People with aphasia report significantly worse health-related quality of life (QoL) than stroke survivors without aphasia, and worse QoL than healthy controls, particularly in the areas of independence, social relationships, and aspects of access to the environment (Hilari, Needle, & Harrison, 2012). While people with aphasia report prioritizing communication goals in their overall rehabilitation process, they also emphasize social, relationship, leisure, and work goals, as well as the need for information tailored to their needs (L. Worrall et al., 2011).
Communication partner training should be provided to improve the communicative environment provided by frequent communication partners for the PWA. Communication partners can be caregivers, family members, friends, volunteers, students, etc. Training can be provided in strategies to facilitate communication and education regarding aphasia, as well as counseling to deal with the psychosocial aspects.
"Communication partner training was shown to be an effective approach for improving communication activities and/or participation of some communication partners and is probably effective in improving communication activities and/or participation of some persons with chronic aphasia when they are interacting with trained communication partners" (Simmons-Mackie et al., 2010).
There are many misconceptions about aphasia, including the belief that people with aphasia are:
• psychologically ill,
• under the influence of drugs/alcohol,
• hard of hearing/deaf,
• confused,
• unwilling to try, and/or
• elderly.
We all must work hard to dispel these myths and provide accurate information about aphasia. Organizations like the NAA (aphasia.org) were created to educate the public to know that the word "aphasia" describes an impairment of the ability to communicate, not an impairment of intellect. The NAA makes people with aphasia, as well as their families, support systems, and health care professionals aware of resources to aid in recovering lost skills to the greatest extent possible, compensating for skills that will not be recovered and minimizing the psychosocial impact of the language impairment.
Aphasia can co-occur with other motor speech disorders like apraxia and dysarthria. Apraxia is a motor planning disorder in which the messages from the brain to the mouth are disrupted. Even though the muscles are not weak, individuals with this disorder cannot coordinate the muscle movements to say the intended sounds correctly. Dysarthria results from impaired movement and weakness of the muscles used for speech production. Individuals with this disorder may have slow, slurred, and/or imprecise speech. As with aphasia, the type and severity of the apraxia or dysarthria depend on the nature of the brain damage.
There are many different types of aphasia, and categorizing different subtypes can be complicated. Below are some of the most common classifications, as well as additional resources for accessing more comprehensive descriptions (Davis, 2015).
Global Aphasia – This is the most severe form of aphasia and is applied to those who can produce few recognizable words and understand little or no spoken language. Persons with...
