A loss for words...something we all have experienced. Imagine living each day trying to find the words, understand what is being said, having trouble reading and writing. Welcome to the world of aphasia. This book provides much needed insight into this devastating communication disorder through the eyes of clinicians, caregivers and persons with aphasia.
Increase your knowledge of aphasia and learn strategies to increase public awareness of aphasia. Explore innovative approaches to aphasia rehabilitation and groups. Read personal and candid stories of frustration, courage, hope, love and acceptance. Words can escape a person but compassion, respect and humor will always remain.
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FOREWORD, xi,
ACKNOWLEDGEMENTS, xv,
CONTRIBUTOR BIOS, xvii,
INTRODUCTION The Birth of a Program for Aphasia, xxvii,
CHAPTER 1 Let's Talk about Aphasia, 1,
CHAPTER 2 The New Normal: Recovery and Healing, 8,
CHAPTER 3 Professional Perspectives, 20,
CHAPTER 4 Aphasia and the Arts, 32,
CHAPTER 5 The Power of Storytelling, 39,
CHAPTER 6 Voices of Aphasia, 50,
CHAPTER 7 A Helping Hand: Caregiver Stories, 76,
CHAPTER 8 Aphasia Advocacy, 90,
EPILOGUE The Voice of Aphasia, 107,
GLOSSARY, 113,
BIBLIOGRAPHY, 117,
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 global aphasia can neither read nor write. Global aphasia may often be seen immediately after the patient has suffered a stroke, and it may rapidly improve if the damage has not been too extensive. However, with greater brain damage, severe and lasting disability may result.
Broca's Aphasia – This is also referred to as expressive aphasia or non-fluent aphasia. In this form of aphasia, damage is typically in the anterior portion of the left hemisphere. Speech output is severely reduced and is limited mainly to short utterances. Content words (nouns and verbs) may be preserved but sentences are difficult to produce due to the problems with grammar, resulting in "telegraphic speech." In its more severe form, spoken utterances may be reduced to single words. The person may understand speech relatively well and be able to read, but be limited in writing. Broca's aphasia is often referred to as a "nonfluent aphasia" because of the halting and effortful quality of speech.
Wernicke's Aphasia – (This is also referred to as Receptive Aphasia or Fluent Aphasia.) Here, the damage is typically in the posterior portion of the left hemisphere. The ability to grasp the meaning of spoken words is chiefly impaired, while the ease of producing connected speech is not much affected. Reading and writing are also often severely impaired. Comprehension is poor and in many cases the person produces jargon, or nonsensical words and phrases, when attempting to speak. These utterances typically retain sentence structure but lack meaning. The person is usually unaware of how they are speaking and may continue to talk even when they should pause to allow others to speak; this is often referred to as "press of speech."
Anomic Aphasia – The most prominent difficulty in this case is in word-finding, with the person using generic fillers in utterances, such as nonspecific nouns and pronouns (e.g., "thing"), or circumlocution, where the person describes the intended word. It is like having the word on the "tip of your tongue." Comprehension and repetition of words and sentences is typically good; however, the person may not always recognize that a word they have successfully retrieved is the correct word, indicating some difficulty with word recognition. Difficulty finding words is as evident in writing as it is in speech.
Primary Progressive Aphasia – A clinical dementia syndrome in which language function slowly declines, due to progressive, neurodegenerative brain disease, eventually affecting additional cognitive, behavioral, and functional domains. This is in contrast to aphasia acquired as a result of a stroke or brain injury. Mesulam first used this term in 1982; he defined it as a "focal dementia characterized by an isolated and gradual dissolution of language function" (2001). With this type of aphasia, language deficits emerge and progress slowly. It is most prominently manifested in word-finding pauses, paraphasia, agrammatism, and difficulties with reading and comprehension. Other types of mental processes are relatively intact initially, but begin to decline with time.
Some of the characteristics of aphasia may also occur in isolation. This may be the case for disorders of reading (alexia) or disorders affecting both reading and writing (agraphia). Acalculia, or difficulty with math and numerical skills, can often accompany aphasia as well, yet in some instances patients retain excellent calculation skills in spite of the loss of language.
There are many types of aphasia and symptoms can vary greatly, but all people with aphasia have difficulty communicating. Aphasia can range from mild, in which a person is unable to name an object or retrieve a word, to severe, in which any type of communication is virtually impossible. As individuals with aphasia recover, their symptoms may change, which will also change the classification of the type of aphasia. It is best to check with a neurologist or speech-language pathologist to confirm that the correct type of aphasia has been identified. Speech-language pathologists can evaluate and recommend the type of speech therapy that would be most beneficial. It is important that the family understand that their loved one with aphasia is still the same person and has retained his or her intelligence. They need to keep the person engaged in life and in the activities they enjoy. People with aphasia can continue to improve over the years. Improvement is a process that involves helping the individual and family understand the nature of aphasia and learn new strategies to communicate.
Recommended communication strategies include the following (www.aphasia.org):
• Ensure you have the person's attention before you speak.
• Minimize or eliminate background noise if possible (sirens, TV, radio, and other people).
• Keep your own voice at a normal level.
• Keep communication simple but adult.
• Confirm that you are communicating successfully with "yes" and "no" questions.
• Repeat statements or directions when necessary.
• Give the person time to speak; resist the urge to finish sentences or offer words.
• Communicate with drawings, gestures, writing, and facial expressions.
It is often difficult to understand the day-to-day difficulties and frustrations experienced by a person with aphasia. One can get caught up in the technical jargon and forget the practical implications a communication impairment has on the person, friends, and family.
People with aphasia may find it difficult to:
• Take part in a conversation
• Talk in a group or noisy environment
• Read a book, magazine, or road sign
• Understand or tell jokes
• Follow the television or radio
• Write a letter or fill out a form
• Use the telephone
• Use numbers and money
• Say their own name or the names of their family members
• Express their immediate needs, ideas, or words
• Leave the home
Friends and family living with aphasia may find it hard to:
• Slow down
• Resist finishing sentences
• Adapt the way they communicate
• Keep the conversation going
• Understand what a person is saying
• Know what to do
Adapted from (ukconnect.org).
One needs to be sensitive to the needs of the person with aphasia and their family and friends. Professionals should find out what is important to the person with aphasia and focus intervention efforts on those areas. Social interaction and community engagement go hand-in-hand with direct therapy. Everyone is entitled to services, and services must be available as needed at all stages of aphasia. (LPAA, Chapey, Duchan, Elman, Garcia, Kagan, Lyon & Simmons-Mackie, 2000). No two people with aphasia are the same, and each person must be seen as a unique individual. It has been said that if you meet one person with aphasia then you have met one person with aphasia, because no two people are alike. There are many challenges with aphasia, but it is possible to live with it successfully.
CHAPTER 2The New Normal: Recovery and Healing
Mona Greenfield, PhD, LCSW, CCC-SLP
The World of Aphasia
In the land of aphasia, a persistent voice echoes, "Here. Here! No! Yes," pointing to a cup. Does this mean "Want water, yes or no?" "No," says the voice. Maybe it is asking for juice or just trying to make sense of a jumble of language. Here it is challenging to get out the words. Feelings of helplessness prevail, and yet the desire to communicate and connect is still present. What happens to the person who has had a stroke or brain injury resulting in aphasia? As communication skills go awry, the person (s) with aphasia (PWA (s)) is/are, but is/are not, the same person. One person says, "I want to be a doctor." Another struggles with resuming her professional artwork. Yet another, who was married, lost his life partner due to his extensive care needs and a very changed personality. Stroke and brain trauma affect each person differently, but each person's sense of self is altered, resulting in a serious detour in his or her life journey.
In the world of aphasia rehabilitation, there are many therapies to help the PWAs regain skills. Although aphasia affects speech and language, PWAs who have suffered a stroke or brain trauma are also impacted in many other ways due to changes in their communication abilities. After an individual suffers an acute brain trauma and is hospitalized, assessments are made by the therapy team regarding ambulation/gait skills, gross and fine motor skills, and receptive and expressive language skills. Each professional works on the individual's treatment plan and objectives in an effort to facilitate increased skill level and independence for these patients. The PWAs are then introduced to many therapies as needed, such as physical, occupational, and speech-language therapy.
In addition to receiving different therapies, the hospitalized person with brain trauma and/or aphasia receives many visits from the doctor and has nurses coming in and out of the room constantly. He or she experiences a lot of confusion about what has happened, what is occurring while in the hospital, and what will happen when discharged. Many questions arise for the person: Will I be able to walk? Will I be able to speak? Will I be able to listen and understand? Will I be able to work? They may also have trouble requesting help, expressing feelings, and just participating in social activities. There are no clear answers to give to patients, except that it will take time.
Traditionally, when PWAs are discharged from the hospital or an acute care rehabilitation center, they are referred for outpatient therapy. They come for their individual therapy session on the day of their appointment for speech-language therapy, physical therapy, or occupational therapy and then leave the clinic. The therapy sessions offered will vary in frequency depending upon need and insurance eligibility and benefits. These sessions generally last about 30- 45 minutes. Most facilities offer just individual sessions. There are some, however, that provide therapy groups. These groups provide the opportunity for the PWA to meet others who are experiencing similar difficulties. After therapy sessions, PWAs are oftentimes left feeling alone, isolated, and frustrated.
Excerpted from The Word Escapes Me: Voices of Aphasia by Mona Greenfield, Ellayne S. Ganzfried. Copyright © 2016 Mona Greenfield, Ellayne S. Ganzfried. Excerpted by permission of Balboa Press.
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