1. HELPING CLIENTS AND THEIR CAREGIVERS IN MANAGING APHASIC DEFICITS
EXPRESSIVE APHASIA AND PRIMARY PROGRESSIVE APHASIA
RUONA BERTACCINI, MS, CCC/SLP
DECEMBER 11, 2008
HELPING CLIENTS AND THEIR CAREGIVERS IN MANAGING APHASIC DEFICITS

2. WHAT IS APHASIA?
APHASIA IS AN AQUIRED LANGUAGE DISORDER CAUSED BY BRAIN DAMAGE WHICH AFFECTS A PERSON’S ABILITY TO COMMUNICATE.
THE PRIMARY SYMPTOM OF APHASIA IS AN IMPAIRMENT IN THE ABILITY TO EXPRESS ONESELF WHEN SPEAKING. THE UNDERSTANDING OF SPEECH, READING, WRITING AND GESTURE ARE ALSO OFTEN IMPAIRED.
IT IS AN IMPAIRMENT IN THE USE OF WORDS AND OTHER LANGUAGE SYMBOLS IN ALL MODALITIES.
APHASIA IS NOT AN IMPAIRMENT OF INTELLECT OR MEMORY WHICH ARE TYPICALLY PRESERVED.

3. WHAT CAUSES APHASIA?
APHASIA IS MOST OFTEN THE RESULT OF A STROKE, BUT IT CAN ALSO RESULT FROM HEAD INJURY, CEREBRAL TUMOR OR FROM INFECTIONS.
APHASIA TYPICALLY OCCURS WITH SUDDEN ONSET.
IT MAY OCCUR IN PERSONS OF ANY AGE, SEX, RACE OR ETHNICITY.
VOCATION, EDUCATION AND INTELLECTUAL LEVEL ARE NOT DETERMINING FACTORS.

4. ARE THERE DIFFERENT TYPES OF APHASIA?
THERE ARE MANY TYPES OF APHASIA, BUT THEY CAN GENERALLY BE GROUPED INTO TWO CATEGORIES: NONFLUENT AND FLUENT APHASIA
Nonfluent Aphasia, often called “Expressive Aphasia” or
“Broca’s Aphasia” is characterized by an effortful production of speech in a telegraphic style marked by pauses. There is an overuse of nouns and verbs and minimal use of prepositions, articles and pronouns. When severe, use is restricted to a small single-word vocabulary. Writing is similarly affected. While articulation is often accurate, it can be effortful and language-based errors can appear as misarticulations. The understanding of speech (comprehension) is usually spared or superior to expression.

5. TYPES OF APHASIA CONTINUED
Fluent Aphasia (also known as “Wernicke’s aphasia or “Receptive Aphasia”) is usually characterized by a normal rate of speech and intonation without pauses or hesitations. While they may speak in full sentences, there is an obvious inability to use precise nouns, resulting in circumlocution, production of word substitutions, irrelevant words and jargon. There is a lack of content and cohesion in expression. Despite the fluency of utterances, there is typically a relatively greater impairment in comprehending the speech of others.
Anomic aphasia refers to persons with a primary deficit in naming or use of specific nouns and verbs. Speech is fluent in grammatical form, but content is vague and circumlocutory. Writing is similarly impaired. However, comprehension is spared and superior to expression.
Global Aphasia refers to a severe impairment in all language modalities (speaking, writing, reading and listening comprehension) and is the most severe form of aphasia with few recognizable words produced and minimal comprehension of others. It is often seen immediately post-CVA or injury, but may improve rapidly to a milder form of aphasia.
All aphasias are determined by the site of injury, degree of damage and can be mixed in form and vary in level of severity from very mild to very severe. Symptoms typically evolve and diminish with time, treatment, and adjustment, with fairly good functional progress achieved.

6. WHAT IS PRIMARY PROGRESSIVE APHASIA (PPA)?
PRIMARY PROGRESSIVE APHASIA is a RARE neurological syndrome in which language capabilities become slowly and progressively impaired.
PPA has been defined by Mesulam and colleagues as a progressive disorder of language, with preservation of other mental functions and activities of daily living, for at least two years.
Most people with PPA maintain the ability to care for themselves, pursue hobbies and in some instances, remain employed.
PPA may take various forms. It may initially appear as a difficulty in articulating speech, progressing to a near total inability to speak, while comprehension remains relatively preserved. It may also begin with impaired word-finding, with progressive deterioration of naming and comprehension, while articulation is spared. Writing and spelling can also reflect declines similar to that observed in speech production.

7. THE CONTROVERSY OVER PPA
Other neurological disorders exist in which progressive deterioration of language is only one component of a broad and progressive decline of mental functions including memory, attention, initiation, visuo-spatial skills, reasoning and carrying out of complex motor activities.
These disorders, such as, dementia, Alzheimer’s, Pick’s, and Creutzfeld-Jakob diseases, and others, should be excluded by appropriate neurological assessment when a person experiences progressive language decline.
Differential diagnosis of aphasic impairment versus PPA can be difficult, just as diagnosis of the above disorders can be complex and lengthy, being dependent upon observation over several years.

8. CONTROVERSY OVER PPA (CONTINUED)
As speech is highly sensitive to mental status, and disturbances in verbal performance are often early signs of mental decline associated with dementia, Alzheimer’s and other disease processes, there exists controversy within many disciplines as to whether the client has PPA or a broader spectrum of deterioration.
As PPA most often does devolve into generalized mental decline, many researchers and clinical programs treat it as a phase in the progressive disease process rather than a separate impairment.
The time frame within which verbal performance declines can vary greatly between patients from 1 to 10 years before spreading to other areas of function. Assessment and management must occur and be adaptive over many years.
As life expectancy has risen and the aging population increases, there has resulted an increase in the number of persons evidencing these deficits, and a greater demand and focus on research and management of these deficits. Currently, however, medical insurance does not typically cover progressive impairments, and there are few facilities which offer treatment, counseling or differential diagnosis.

9. HOW DO EXPRESSIVE APHASIA AND PPA COMPARE?
SIMILARITIES:
MENTIAL STATUS IS ESSENTIALLY INTACT,(MEMORY, ORIENTATION, REASONING, ETC.)
SPEECH REFLECTS RELATIVELY INTACT ARTICULATION.
SPECIFIC WORD-RETRIEVAL IS DELAYED AND CAN BE IN ERROR WITH SUBSTITUTIONS USED WHICH ARE PHONEMICALLY OR SEMANTICALLY RELATED, (HE/SHE, MAY/JUNE, TAB/CAB).
FUND OF VOCABULARY IS REDUCED.
INITIATION OF SPEECH IS SLOWED IN RATE AND REDUCED IN FREQUENCY.
WRITING AND SPELLING REFLECT ERROR TYPES SIMILAR TO SPEECH.
SENTENCE STRUCTURE IS MORE SIMPLISTIC AND INCOMPLETE IN FORM.
LISTENING COMPREHENSION IS SUPERIOR TO EXPRESSION.
CALCULATION SKILLS ARE RELATIVELY INTACT, BUT USE OF NUMERICAL SYMBOLS CAN BE IN ERROR.
AFFECTUAL DISPLAY IS NORMAL.
PERFORMANCE IS SUPERIOR IN SMALL GROUPS OR ONE-ON-ONE.

10. DIFFERENCES
WITH PPA, EXPRESSION, MENTAL STATUS, INITIATION AND AFFECT WILL TEND TO WORSEN.
EXPRESSIVE APHASIA TENDS TO IMPROVE OVER TIME.
EXPRESSIVE APHASIA IS TYPICALLY ACCOMPANIED BY RIGHT HEMIPLEGIA. PHYSICAL STAUS IS INTACT FOR PPA.
WHILE SPEECH THERAPY IS BENEFICIAL FOR BOTH, SPEECH THERAPY WILL BE MORE INTENSIVE AND CONTINUE OVER A LONGER TIME FRAME FOR EXPRESSIVE APHASIA.
COMPENSATORY TECHNIQUES NEED TO BE TRAINED EARLY FOR PPA, PRIOR TO DECLINE IN MENTAL AND SPEECH STATUS.
MEDICAL INSURANCE TYPICALLY COVERS SPEECH THERAPY AND OTHER TREATMENTS FOR EXPRESSIVE APHASIA FOR A SHORT DURATION, BUT NOT FOR PPA.
PERIODIC RE-EVALUATION IS REQUIRED FOR PPA TO MONITOR DECLINE.
THERE ARE FEW RESOURCES FOR PPA FOR DIAGNOSIS, TREATMENT, OR COUNSELING.
THE GRIEVING PROCESS AND ADAPTIVE PROCESS ARE REVERSED.

11. WHAT IS YOUR ROLE?
IT IS NOT YOUR ROLE TO DIAGNOSIS THE COMMUNICATION DEFICIT.
IT IS YOUR ROLE TO GUIDE THE CLIENT AND CAREGIVERS TO THE SERVICES AND SPECIALISTS THAT CAN PROVIDE A DIAGNOSIS AND TREATMENT PLAN. THESE INCLUDE NEUROLOGICAL EXAM, NEUROPSYCHOLOGICAL EXAM, SPEECH AND LANGUAGE EVALUATION, AND IF NEEDED PSYCHIATRIC EVALUATION.
BE INFORMED REGARDING APHASIA AND PPA AND OBTAIN A GOOD HISTORY OF THE SYMPTOMS FROM THE FAMILY.
AS THESE DEFICITS GREATLY AFFECT THE CLIENT AND THOSE CLOSE TO HIM WITH RESPECT TO COMMUNICATION , SOCIALIZATION, SELF-CARE, WORK, ROLE WITHIN THE FAMILY, ETC. WITH FEW SERVICES AVAILABLE, YOU ARE INVALUABLE IN PROVIDING THEM WITH SUGGESTIONS AND RESOURCES FOR DEALING WITH DAY TO DAY FRUSTRATIONS AND DIFFICULTIES, DEALING WITH THE HEALTHCARE SYSTEM, AND SUPPORTING THEM IN BOTH THE GRIEVING AND ADJUSTMENT PROCESS (TO BOTH LOSSES AND GAINS.)

12. YOUR ROLE CONTINUED
WHETHER SYMPTOMS IMPROVE OR WORSEN, APHASIA WILL PERSIST OVER MANY YEARS. THE CLIENT AND FAMILY WILL NEED YOUR SERVICES FOR A LONG PERIOD OF TIME, AND THEIR NEEDS AND ABILITIES WILL EVOLVE.
BE SENSITIVE TO CHANGES IN STATUS.
COORDINATE YOUR GUIDANCE WITH FINDINGS AND RECOMMENDATIONS OFFERED BY MEDICAL AND THERAPUTIC PROFESSIONALS INVOLVED.
INFORM YOURSELF AND YOUR CLIENTS AS TO ONGOING RESOURCES (SUPPORTIVE, FINANCIAL, STIMIULATIVE, THERAPUTIC, SOCIAL, ETC.)

13. RESOURCES: THE NATIONAL APHASIA ASSOCIATION (NAA)
website:
THE AMERICAN SPEECH AND HEARING ASSOCIATION (ASHA)
Website:
APHASIA NOW - Website:
StrokeNet ONLINE SUPPORT- website:
Yahoo! Aphasia Group - website:
A CAREGIVER BLOG - website:
NORTHWESTERN UNIVERSITY- Feinberg School of Medicine
PPA CLINICAL AND RESEARCH PROGRAM
website:
UNIV. OF MICHIGAN APHASIA PROGRAM - website:
ADLER APHASIA PROGRAM - website:
THE HAROLD GOODGLASS APHASIA RESEARCH CENTER –
website:
Aphasia Hope Foundation – website:
APHASIA Information for the Layperson – website:

14. WHAT RESOURCES CAN OFFER:
MORE SPECIFIC INFORMATION REGARDING EXPRESSIVE APHASIA AND PPA
LOCATING SPEECH PATHOLOGISTS AND TREATMENT PROGRAMS IN YOUR AREA.
PEER SUPPORT FOR BOTH THE CLIENT AND CAREGIVER, AS WELL AS, RESPITE SERVICES
ONGOING RESEARCH FINDINGS AND CLINICAL TRIALS
ONGOING STIMULATION ACTIVITIES

15. COMMUNICATION STRATEGIES WITH APHASICS/PPA
USE SUPPORTED CONVERSATION:
NATURAL TALK IN TONE AND CONTENT
SENSITIVITY TO PARTNER, SETTING AND CONTEXT
VERBAL AND NON-VERBAL ADAPTATIONS - LIMIT RATE AND QUANTITY OF YOUR SPEECH, USE SIMPLE, DIRECT STATEMENTS,PAUSES BETWEEN UTTERANCES, USE GESTURES, WRITTEN WORDS, PICTURES, DRAWINGS, PROPS, ETC.
RESPONSE TO COMMUNICATION CLUES –GAIN ATTENTION, EYE-CONTACT, NOTE STATUS AND MODIFY AS NEEDED.
VERIFICATION – CONFIRM THAT YOU HAVE UNDERSTOOD
BUILD COMMUNICATION RAMPS:
ACKNOWLEDGE COMPETENCE OF YOUR CLIENT VIA MANNER, TONE AND CONTENT, CONFIRMING THEIR INTACT INTELLECT
REVEAL COMPETENCE- GIVING AND GETTING INFORMATION , USING ALL MODALITIES (VOCAL, GESTURAL, WRITING, PICTURES, PROPS, ETC.)
VERIFY THE ACCURACY OF THE EXCHANGE OF INFORMATION, ESTABLISHING THE MOST RELIABLE RESPONSE MODE FOR YES/NO OR MULTIPLE-CHOICE, THEN REPEAT THE MESSAGE, EXPAND AND SUMMARIZE THE MESSAGE.

16. HANDLING BREAKDOWNS
SOMETIMES YOU CANNOT SUCCEED IN EXCHANGING INFORMATION
ALWAYS CONVEY THAT YOU WANT TO UNDERSTAND THEIR MESSAGE
ACKNOWLEDGE THE CLIENT’S COMPETENCE, FRUSTRATIONS AND CONCERNS AND YOUR OWN FRUSTRATION
TAKE THE RESPONSIBILITY FOR THE FAILURE ON YOURSELF; USE HUMOR WHEN POSSIBLE
DEAL OPENLY WITH THE CLIENT TO OBTAIN OR GIVE INFORMATION TO OTHERS
CONFIRM WHETHER THEIR MESSAGE IS URGENT; IF IT IS NOT, SUGGEST WAITING SOME TIME AND TRY AGAIN LATER
COMMUNICATION IS ALWAYS MORE DIFFICULT FOR PARTNERS WHEN THEY ARE TIRED, STRESSED OR FRUSTRATED
HELP CAREGIVERS TO USE THESE METHODS

17. GENERAL SUGGESTIONS
KEEP IN MIND THAT THE CLIENT IS LIKELY TRYING TO CONVEY A VERY “NORMAL” MESSAGE GIVEN THEIR SITUATION.
THEY MAY UNDERSTAND YOU BY THE SAME MEANS THAT YOU UNDERSTAND THEM, RELYING GREATLY ON THE CONTEXT, YOUR MANNER, AFFECT AND TONE.
DO NOT SPEAK ABOUT THE CLIENT IN HIS PRESENCE - INCLUDE HIM.
THEY TIRE EASILY AND DO MORE POORLY WHEN TIRED, STRESSED, FRUSTRATED OR ILL.
THEY PERFORM BEST WHEN GIVEN TIME TO PROCESS INFORMATION AND TO MUSTER A RESPONSE.
THEY PERFORM BEST IN A ONE-TO-ONE CONVERSATION AND A QUIET SETTING WITH LIMITED DESTRACTIONS. LIMIT THE NUMBER OF SPEAKERS.
COMMUNICATION BOARDS AND BOOKS CAN BE DESIGNED AND THE CLIENT TRAINED IN USE, BUT THESE ARE MORE COMPLEX THAN MAY BE EXPECTED, REQUIRE NEW LEARNING AND ARE LIMITED FOR CONTENT. ONLY CERTAIN CLIENTS CAN MAKE USE OF THESE AND REQUIRE AN ACTIVE COMMUNICATION PARTNER TO MAXIMIZE THEIR USE.
USE CLIENT’S NATURAL SYSTEMS AS CUEING AND COMPENSATORY PROMPTS, (CALENDARS, ADDRESS BOOKS, TV GUIDE, PHOTO ALBUMS, ETC.)
MOST IMPORTANTLY, IT IS OUR GOAL TO MAINTAIN AND RETURN THE CLIENT TO A SOCIAL CONNECTION TO OTHERS, A POSITIVE SELF-IMAGE AND MAXIMAL FUNCTIONAL INDEPENDENCE.