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Aphasia: Making Their Voices Heard

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  • 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 Orange Arrow Button: Minimizes or expands the GoToWebinar control panel.
  • 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 EW SOCIAL M EDIA ADVOC ACY © 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
  • 13. LIT REVI EW SOCIAL M EDIA ADVOC ACY © 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:
  • 14. LIT REVI EW SOCIAL M EDIA ADVOC ACY © 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/
  • 15. LIT REVI EW SOCIAL M EDIA ADVOC ACY © 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
  • 16. LIT REVI EW SOCIAL M EDIA ADVOC ACY © 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
  • 17. LIT REVI EW SOCIAL M EDIA ADVOC ACY © 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 AC 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." LIT REVI EW SOCIAL M EDIA ADVOC ACY www.aphasiacorner.com
  • 19. LIT REVI EW SOCIAL M EDIA ADVOC ACY 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
  • 20. LIT REVI EW SOCIAL M EDIA ADVOC ACY 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
  • 21. LIT REVI EW SOCIAL M EDIA ADVOC ACY 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 IEW SOCI AL 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 1. Click to expand 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 National 24x7 Care Line: 800-GRISWOLD www.GriswoldHomeCare.com Brought to you by: Extraordinary Home Care at Affordable Rates Since 1982 Griswold Home Care offers access to affordable non-medical care options to assist your loved one. CareAssure Screening System™ The Griswold Golden Rule: We only approve caregivers we would trust in our own homes. QuickCare Placement™ We give each family access to the most experienced caregivers available. ValueCare Commitment™ Simple Rates. Unmatched Value. Our all- inclusive rates are among the most affordable. 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.

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