aphasia: making their voices heard

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Making TheirVoices Heard

Aphasia Solutions

© 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


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 WRITINGSolutions

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Presented by:Ellayne S. Ganzfried, M.S., CCC-SLPASHA FellowExecutive DirectorNational Aphasia Association

Barbara MartinPerson Living with Aphasia

Dan MartinFamily Caregiver

Chris Kelly, MEd Director of Learning & DevelopmentGriswold Home Care


Thank you for your courage, energy, and dedication!

Professional CaregiversHealthcare Providers

Family Caregivers Living with Aphasia


June isNational AphasiaAwarenessMonth

“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

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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

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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 StrokeBlockage of blood vessels

Hemorrhagic StrokeRupture of blood vessels

DEMENTIA

INFECTION


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Types of Aphasia


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.

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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.

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Advocacy

Solutions Webinar & Toolkit

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- 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

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There is a great need for best practice:• Treatment guidelines• Tools for the diagnosis and management of aphasia

“Improvement is needed inthe quality of methodological

rigor in development andreporting within clinicalguidelines and Aphasia-

specific recommendations.”

Rodhe, 2013

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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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Lit Review Aphasia Treatment:

Speech TherapyReading and

Writing TherapyTechnology

Access to CommunityServices and Support

Life ParticipationApproach to Aphasia

Multi-modalTreatment

using multiple forms of communication (ex. gestures,

pictures, sound)

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http://www.asha.org/Practice-Portal/Cinical-Topics/aphasia/

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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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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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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)

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Social Media


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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AdvocacyA Care Team that Speaks Your Language


aphasia.org • (800) 922-4622

• Speech-Language Pathologist

• Occupational Therapist

• Psychiatrist• Social Worker

• Neurologist• Physiatrist

• Physical Therapist

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Advocacy


Talking PictureDictionary

Phonemic Cues

Text-to-Speech andSpeech-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


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

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Breaking through the barriers to find real solutions

Recent survey uncovers key client barriers

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Feel free to contact the National Aphasia AssociationEllayne S. Ganzfried

(212) [email protected]



Tools that help people living with aphasia

NAA - YouTubehttp://bit.ly/142IKsX

NAA - I Have Aphasiahttp://bit.ly/14bpcnm

Stroke ConnectionEveryday Survivalhttp://bit.ly/12fpy0I

NAA - Facebookhttp://on.fb.me/16UsgXG

NAA - Aphasia Bill of Rightshttp://bit.ly/115Vf61



Tools that help family caregivers

I AM A CAREGIVERNational Aphasia Associationhttp://bit.ly/13Ylhvz



Tools for healthcare providers

Practice Guidelineshttp://bit.ly/17sq9hi

I AM A PROFESSIONALNational Aphasia Associationhttp://bit.ly/11Rv0Qd

Aphasia Evidence Maphttp://bit.ly/13g19Du


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


Open Q&A

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2. Type questions here

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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 AssociationEllayne S. Ganzfried

(212) [email protected]


National 24x7 Care Line:800-GRISWOLD

www.GriswoldHomeCare.com

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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

[email protected]

Aphasia a�ects 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.

aphasia: making their voices heard

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