1. TM
TM
Making Their
Voices Heard
Aphasia Solutions
© 2013 Griswold International, LLC

2. © 2013 Griswold International, LLC
Our Goal for Today
• Increase awareness and understanding of aphasia
• Provide tools and solutions that drive improved
quality of life for clients and family caregivers

3. © 2013 Griswold International, LLC
Brainwriting is…
• a fun, engaging way to brainstorm
• sharing as many ideas as possible within a short timeframe
Brainwriting Process
• Listen for our questions
• When prompted, enter your solutions using the webinar chat function
• Don’t overthink or agonize…There are no right or wrong answers
Brainwriting Outcomes
• Peer-to-peer learning and sharing
• A publication that benefits others who are living with aphasia
Important
• Avoid sharing any information that you would not want others to see
BRAIN WRITING
Solutions
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4. © 2013 Griswold International, LLC
Presented by:
Ellayne S. Ganzfried, M.S., CCC-SLP
ASHA Fellow
Executive Director
National Aphasia Association
Barbara Martin
Person Living with Aphasia
Dan Martin
Family Caregiver
Chris Kelly, MEd
Director of Learning & Development
Griswold Home Care

5. © 2013 Griswold International, LLC
Thank you for your courage, energy, and dedication!
Professional CaregiversHealthcare Providers
Family Caregivers Living with Aphasia

6. © 2013 Griswold International, LLC
June is
National
Aphasia
Awareness
Month
“The NAA envisions a
society in which aphasia is a
commonly understood word and
where all persons with aphasia
have access to appropriate
education and resources that
would enhance their
potential for an acceptable
quality of life.”
National Aphasia Association Vision

7. © 2013 Griswold International, LLC
On June 12th, 2013 Senator Tim Johnson of South Dakota sponsored
a resolution recognizing June as National Aphasia Awareness Month.
“Whereas the people of the United States should strive to:
• Learn more about Aphasia
• Promote research, rehabilitation, and support services
• Recognize the ‘silent’ disability of Aphasia
• Support efforts to increase awareness of Aphasia
• Acknowledges that Aphasia deserves more attention and study
• Supports efforts to make the voices of people with Aphasia heard
• Encourage all people in the United States to observe National
Aphasia Awareness Month.”
An Important Resolution

8. About 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.”
Aphasia is not a disease, but
a symptom of brain damage
that often results from:
HEAD INJURY
STROKE
BRAIN TUMOR
Ischemic Stroke
Blockage of
blood vessels
Hemorrhagic Stroke
Rupture of blood vessels
DEMENTIA
INFECTION
© 2013 Griswold International, LLC

9. Types of Aphasia
© 2013 Griswold International, LLC
Expressive (Broca’s)
Aphasia: non-fluent
Speech is effortful and it is hard to convey thoughts
through writing. The client knows what they want to say,
but cannot find the words.
Receptive (Wernicke’s)
Aphasia: fluent
The client speaks fluently, but the words often do not
make sense. It is hard to process (receive) spoken
or written words as well.

10. © 2013 Griswold International, LLC
Anomic Aphasia
Global Aphasia
Primary Progressive Aphasia (PPA)
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.”
The client cannot speak or understand speech, nor
can they read or write.
This is the most severe form of aphasia, typically seen
right after injury to the brain.
The client has a language disorder that gets worse
over time, but maintains ability to take care of
themselves, pursue hobbies, and, in some instances,
remain employed. PPA is a clinical dementia syndrome.

11. © 2013 Griswold International, LLC
Lit Review
Social Media
Advocacy
Solutions Webinar & Toolkit

12. - Lou Gehrig
“I just can't understand. I am not sick. My eye is
sharp, yet I was not swinging as of old. I reduced
the weight of my bat from 36 to 33 ounces, thinking
a change might work to my advantage, but it didn't.”
- Lou Gehrig
LIT REVI
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© 2013 Griswold International, LLC
Lit ReviewLit Review
There is a great need for best practice:
• Treatment guidelines
• Tools for the diagnosis and management
of aphasia
“Improvement is needed in
the quality of methodological
rigor in development and
reporting within clinical
guidelines and Aphasia-
specific recommendations.”
Rodhe, 2013

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© 2013 Griswold International, LLC
Lit Review
Assessment of –
Language
Reading
Writing
Auditory Processing
(the ability to hear & understand language)
http://www.asha.org/Practice-Portal/Cinical-Topics/aphasia/
Aphasia Diagnosis:

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© 2013 Griswold International, LLC
Lit Review Aphasia Treatment:
Speech Therapy
Reading and
Writing TherapyTechnology
Access to Community
Services and Support
Life Participation
Approach to Aphasia
Multi-modal
Treatment
using multiple forms of
communication (ex. gestures,
pictures, sound)
http://www.asha.org/Practice-Portal/Cinical-Topics/aphasia/

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© 2013 Griswold International, LLC
Lit Review
“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.”
Donovan, 2013

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© 2013 Griswold International, LLC
Lit Review
• May 2013 online survey completed by 302 people living with aphasia
• First validated client/caregiver survey since 1988
• Key findings include:
– Aphasia resources rated as “somewhat difficult to find”
• Topics ranked as most important were:
– How to keep improving
– Communication strategies
– Aphasia treatment techniques
– Coping strategies
– Strategies for family caregivers
– Education for healthcare providers
related to aphasia resources
– Low public awareness of aphasia
Jacqueline J. Hinckley, Amy Hasselkus, and Ellayne Ganzfried, Am J Speech Lang
Pathol; 2013; 22 S310-S317 http://ajslp.asha.org/cgi/content/abstract/22/2/S310
Recent survey uncovers key client barriers

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© 2013 Griswold International, LLC
Lit Review
Key findings include:
“Slightly more than 7 out of 10 clients were unable to work. Those who have re-entered the
work force reported taking positions with minimal demands because of language limitations.”
“7 out of 10 clients felt that people avoided 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.”
National Aphasia Association analyzes
only the second aphasia client/caregiver
survey to date.
“9 out of 10 clients 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.”
(National Aphasia Association, 2005)

18. A
C
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Social Media
© 2013 Griswold International, LLC
http://www.speakability.org.uk/Aphasia+Forum
“All I know is that I can't talk as
freely as I wish to. That has held me
back considerably in my life… I have
trouble finding the words, everyday
words like: people, places,
relationships. Sometimes I wish to
physically shake my head up to put
the sentence back in form. But I
can't. I long for the day when I can
put a couple of sentences together,
and I can talk like I used to."
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www.aphasiacorner.com

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Advocacy
A Care Team that Speaks
Your Language
© 2013 Griswold International, LLC
aphasia.org • (800) 922-4622
• Speech-Language
Pathologist
• Occupational
Therapist
• Psychiatrist
• Social Worker
• Neurologist
• Physiatrist
• Physical
Therapist

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Advocacy
© 2013 Griswold International, LLC
Talking Picture
Dictionary
Phonemic Cues
Text-to-Speech and
Speech-to-Text
e-books
Smartphones and tablets
can help in many ways
Hobby/InterestVideo Call
Raising Their Voices
Through Innovative
Therapy…Technology

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Advocacy
© 2013 Griswold International, LLC
Clients with aphasia struggle to:
• Take part in a conversation
• Talk in a noisy environment
• Read a book/magazine/sign
• Understand or tell jokes
• Follow the television/radio
• Write a letter or fill in a form
• Use a telephone
• Use numbers and money
• Say their own name
• Express needs or ideas
Family caregivers struggle to:
• Slowing down their speech
• Resist finishing sentences
• Adapt the way they communicate
• Keep the conversation going
• Understand what a person is saying
• Know what to do

22. LITREV
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SOCI
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MEDIA
AD
VOCACY
© 2013 Griswold International, LLC
Solutions Webinar
& Toolkit
Breaking through the barriers
to find real solutions

23. © 2013 Griswold International, LLC
Solutions Webinar
& Toolkit
Tools that help people
living with aphasia
NAA - YouTube
http://bit.ly/142IKsX
NAA - I Have Aphasia
http://bit.ly/14bpcnm
Stroke Connection
Everyday Survival
http://bit.ly/12fpy0I
NAA - Facebook
http://on.fb.me/16UsgXG
NAA - Aphasia
Bill of Rights
http://bit.ly/115Vf61

24. © 2013 Griswold International, LLC
Solutions Webinar
& Toolkit
Tools that help family
caregivers
I AM A CAREGIVER
National Aphasia Association
http://bit.ly/13Ylhvz

25. © 2013 Griswold International, LLC
Solutions Webinar
& Toolkit
Tools for healthcare
providers
Practice Guidelines
http://bit.ly/17sq9hi
I AM A PROFESSIONAL
National Aphasia Association
http://bit.ly/11Rv0Qd
Aphasia Evidence Map
http://bit.ly/13g19Du

26. © 2013 Griswold International, LLC
Key Takeaways
Points to remember
There are resources and services available for people
with aphasia and they do not have to remain isolated
More research is needed to inform reliable validated
aphasia clinical practice guidelines
Innovative speech-language therapy combined with
technology open new opportunities for communication
Increased awareness of aphasia is needed and people with
aphasia and their families need to advocate for themselves

27. © 2013 Griswold International, LLC
Open Q&A
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if necessary
2. Type questions here

28. Thanks to: Stroke Comeback Center and March of Dimes Canada
www.strokecomebackcenter.org www.marchofdimes.ca
www.aphasia.org
(800) 922-4622
Feel free to contact the National Aphasia Association
Ellayne S. Ganzfried
(212) 267-2814
Ganzfried@Aphasia.org

29. © 2013 Griswold International, LLC
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Contact:
National Aphasia Association
350 Seventh Avenue -Suite 902
New York, NY 10001
(800) 922-4622 (212) 267-2814
www.aphasia.org
naa@aphasia.org
Aphasia affects talking, understanding, reading and writing. Aphasia is typically caused by
stroke, head injury, brain tumor or neurological disease. Aphasia can occur in people of any age.
1 in 250 people are impacted by Aphasia.