What Causes Aphasia? Types of PPA

Home , Aphasia

Tools for Aphasia Advocacy, Community Outreach and Education: National Initiatives and Personal Perspectives Course Outline

Ellayne S. Ganzfried, M.S. CCC-SLP Aphasia-Facts/Incidence/Communication Strategies

ASHA Fellow Life Participation Approach to Aphasia (LPAA)

Executive Director NAA Resources/Programs/Services

National Aphasia Association Aphasia Education /Awareness/Advocacy Strategies

Groups and Support Systems-Rationale and Rachel Eagley Programming Person Living Successfully with Aphasia Living Successfully with Aphasia Discussion and Questions

MSHA- March 24, 2012

What is Aphasia? What causes Aphasia?

Aphasia is an acquired Stroke is the most common cause communication/language disorder, usually (25-40% of stroke survivors caused by stroke, head injury, migraines, acquire aphasia) brain tumor or neurological conditions. Head injuries, brain tumors, Aphasia impairs a person’s ability to speak, process language, and sometimes understand migraines, and neurological others. conditions are other causes. Most people with aphasia experience difficulty About 1/3 of severe head injured reading and writing. persons have aphasia Aphasia does NOT affect intelligence.

What Causes Aphasia? Types of PPA

Aphasia can also result from Semantic PPA- can’t understand words Frontotemporal Degeneration, or recognize familiar people/objects

Corticobasal Degeneration and other Agrammatic PPA (Progressive Nonfluent neurodegenerative disorders referred to Aphasia)-omits words that link nouns as “Primary Progressive Aphasia” (PPA) and verbs, i.e., to, from, the; difficulty swallowing; movement symptoms; eventually may no longer speak

May not be reproduced without permission 1 Types of PPA Aphasia Facts

Logopenic PPA-trouble finding the Over 1 million Americans struggle with the words in conversation but can devastation of aphasia. understand words and sentences; There are over 200,000 new cases each year; hesitations/pauses in speech the numbers are expected to rise as the population ages. Those with PPA may experience Aphasia is more common than cerebral palsy, behavioral changes as disease muscular dystrophy or spinal cord injuries, progresses yet most people have never heard of it.

Aphasia Facts Aphasia Facts

Lack of awareness and information is as Can be acquired by all ages, race, genders, devastating as disorder nationalities

People with aphasia are at a Many are prone to depression due to feelings of disadvantage in today’s health care social isolation. system where the ability to access Aphasia can co-occur with other speech resources is closely tied to the ability to disorders- apraxia , dysarthria advocate for oneself Onset is usually sudden 10% have Primary Progressive Aphasia (PPA) which is a FTD

The Brain Other Key Definitions

Agnosia -impaired understanding of the meaning of certain stimuli. People can see, feel, and hear stimuli but cannot understand their meaning. -Auditory, Auditory Verbal, Visual, and Tactile

Alexia -loss of previously acquired reading skills due to recent brain damage

Agraphia -loss or impairment of normally acquired writing skills.

Acalculia -loss or impairment of math/number skills

May not be reproduced without permission 2 Aphasia in the US (2006) Common Misconceptions: People with aphasia are:

Psychologically ill

Mentally retarded

Under the influence of drugs/alcohol

Hard of hearing/deaf

Confused

Unwilling to try

Elderly

Deficits of Communication Deficits of Communication Characteristic of Aphasia Characteristic of Aphasia

• Impaired verbal expression • Impaired prosodic features of speech • Difficulty repeating words, phrases, and/or sentences • Impaired auditory comprehension • Problems with naming and word finding (anomia) • Presence of paraphasias • Impaired reading ability • Perseveration • Impaired writing ability (possibly confounded by loss • Agrammatism, or grammatical errors of use of dominant hand due to hemiparesis)

• Nonfluent speech or nonmeaningful fluent • Pragmatic deficits speech • In bilingual clients, unequal impairment between the two languages

People with aphasia find it difficult: Friends and Family have a Difficult Time with: • take part in a conversation

• talk in a group or noisy environment

• read a book or magazine or road sign • slowing down speech

• understand or tell jokes • resist finishing sentences

• follow the television or radio • adapt the way they communicate

• write a letter or fill in a form • keep the conversation going • use a telephone • understand what a person is saying • use numbers and money • know what to do • say their own name or the names of their family

• express their immediate needs or ideas or words www.ukconnect.org • go out

www.ukconnect.org

May not be reproduced without permission 3 Communication Tips Communication Tips-cont’d

Have the person’s attention before you Give them time to speak, resist the urge to speak. finish sentences or offer words. Minimize or eliminate background noise if Communicate with drawings, gestures, possible (Sirens, TV, radio, other people). writing and facial expressions.

Keep your own voice at a normal level.

Keep communication simple, but adult. “It’s Still Me!” Video Confirm that you are communicating successfully with “yes” and “no” questions.

Repeat statements or directions when necessary

Metacogntive Processes Important to Treatment Neural Plasticity Outcomes

Self-awareness and Insight The adaptive capacity of the Central

Motivation Nervous System

Self-monitoring The mechanism by which the brain encodes experiences and learns new Self-initiation behaviors Goal-oriented Behavior The mechanism by which the damaged brain “relearns” lost behavior in response to rehabilitation

Kleim & Jones 2008

ExperienceExperience--DependentDependent Principles of ExperienceExperience--DependentDependent Neural Plasticity Plasticity (Kleim & Jones, 2008)

“The ability of the nervous system to wire 1. Use It or Lose It and rewire itself in response to lasting 2. Use It and Improve It changes in experience has become known as experience-dependent plasticity.” 3. Specificity 4. Repetition Matters

5. Intensity matters

6. Time Matters

7. Salience Matters Experience can increase or decrease the synaptic gain of a particular sensory 8. Age Matters pathway in the cortex 9. Transference

10. Interference

May not be reproduced without permission 4 Life Participation Approach to The Life Participation Approach to Aphasia (LPAA) Aphasia: Statement of Values*

General philosophy and model of “LPAA places the life concerns of those affected by aphasia at the service delivery center of all decision making; it empowers the consumer to select and participate in the recovery process, and to Focuses on re-engagement in life by collaborate on the design of interventions that aim for a more strengthening daily participation in rapid return to active life.” activities of choice *LPAA Project Group Statement, ASHA Leader 2/15/00 The LPAA Project Group-Roberta Chapey, Judith Duchan, Roberta Places the life concerns of those J. Elman, Linda J. Garcia, Aura Kagan, Jon Lyon and Nina- affected by aphasia at the center of all Simmons-Mackie http://www/asha.org/public/speech/disorders/LPAA.htm decision making

Core values of LPAA

Explicit goal is enhancement of life participation All those affected by aphasia are entitled to service Measures of success include documented life enhancement changes Both personal and environmental factors are targets of intervention Emphasis is on availability of services as needed at all stages of aphasia

Domains Domains

Language and Related Impairments Domain The Participation Domain Life roles ( e.g. mother, teacher); Responsibilities (e.g. managing Auditory comprehension (e.g. pointing to pictures named); Reading finances, performing a job); Relationships (e.g. engaging in (e.g. matching a written word to a picture); Speaking (e.g. word conversation, making friends); Activities of Choice (e.g. leisure and recreation, community participation) and Tasks engaged in by an finding, sentence formulation) and Writing (e.g. writing the names of individual e.g. writing letters, cashing a check objects) Personal Factors/Identity Domain Communication and Language Environment Domain Factors such as age, gender, culture but expands the ICF domain to include internal factors that vary as a consequence of aphasia such as Aspects of external context that might facilitate or impede language, confidence and personal identity communication or participation of PWA such as: Physical environment Living with Aphasia Domain (signage, lighting, written supports); Social environment ( attitudes of Dynamic interaction of multiple life domains; captures elements of people, skills of partners) ; Political environment (policies supporting quality of life ( how satisfied someone is with their life) participation)

May not be reproduced without permission 5 Supported Conversation for Goals of Supported

Adults with Aphasia (SCA TM ) Conversation

Communicating with people who know The Conversation Partner can: more than they can say Acknowledge the competence of the adult with aphasia Ensures accurate exchange of opinions, Help the adult with aphasia to reveal his or her information and feelings competence Developed in Ontario by the Aphasia Goals for healthcare professionals:

Institute in Canada Increase communicative access to your services www.aphasia.ca Increase the efficiency and effectiveness of your service

Acknowledging Competence Revealing Competence

Indirectly: Techniques to get and give accurate Tone of voice (sounding natural and not patronizing) Respect information Choosing adult or complex topics to discuss In Integrating supports (techniques) into natural talk Directly: Out “I know that you know” Verify Explicitly attributing breakdowns to your own limitations as communicator (often using humor) CONVERSATION= two or more people (not Deal openly with situations in which you have to communicate with a partner one- sided!) It is an EXCHANGE of information!

Helping to Get the Message IN- Is Your Message Clear? OUT

Use short, simple sentences and expressive Give sufficient time to respond voice Ask “yes/no” questions Use gestures that person can easily understand Ask one thing at a time Write key words/main ideas (e.g. “pain” in Ask for clues by gesturing or pointing to bold print) objects, pictures and written key words Use pictures-focus on one at a time (e.g. “can you show me…? Eliminate distractions Observe person for comprehension Go from general to specific

May not be reproduced without permission 6 VERIFY : Have you Checked to Make Sure you are Understood? Goals to a Social Approach:

1. Help the PWA reengage in life by giving them Summarize slowly and clearly what you opportunities to reenter larger communities, think the person is trying to say (e.g. and personally relevant activities “so let me make sure I understand”) 2. Supportive environment 3. Client takes an active role: empowering Add gesture or written key words as 4.4. Minimize declines in relationships, give access necessary to prior roles/identities, prevent exclusion and seclusion Reflect, Expand, Summarize 5. Improve quality of life by unmasking competences: improve communication through SCA!

Practical Considerations: Using LPAA

Assessment: Look at how the PWA does with support-look at competencies Treatment: Facilitate the achievement of life goals Work on making the PWA’s environment more “aphasia- friendly” Look at all those that are affected by aphasia as legitimate targets for intervention (family, friends) and educate Expand your role as a clinician: coaching and support to help the PWA reengage Document quality of life and life participation changes

Chapey, R. et al..(2008) Life Participation Approach to Aphasia: A Statement of Values for the Future. In Language Intervention Strategies in Aphasia and Related Neurocommunication Diorders , 5 th Edition, R. Chapey (ed), pp. 279-289.

May not be reproduced without permission 7 Ways to Measure Participation National Aphasia Association and Social Outcomes (NAA)

ICF: International Classification of Functioning, Disability and NAA is a consumer-focused, not-for-profit organization Health (World Health Organization, 2001) that was founded in 1987 as the first national Quality of Communication Life Scale CADL-2: Communication Activities of Daily Living (Holland et al.) organization dedicated to advocating for persons with CETI: Communicative Effectiveness Index : Measure for Caregivers aphasia and their families. Resources include: The Aphasia Quiz on www.aphasia.org A-FROM: Living with Aphasia: Framework for outcome measurement (Kagan et al, 2007) NAA Hotline (800-922-4622) helps over 4,000 Impairment families a year. Environment NAA National Registry links to over 440 aphasia Participation US support groups. Personal Factors ALA: Assessment for Living with Aphasia NAA State Representative Network of over 220 volunteers

NAA Mission NAA Resources

The Mission of the NAA is to www.aphasia.org receives over Promote Universal Awareness 30,000 hits per month, potentially and Understanding of Aphasia helping over 200,000 families a year. and Provide Support to All Persons With Aphasia, Their Families and Caregivers.

New Website Landing Page http://www.devaphasia.dreamhosters.com/home

May not be reproduced without permission 8 NAA Resources NAA Resources

The Aphasia Handbook: A Guide for Stroke and Aphasia Bill of Rights adopted in Brain Injury Survivors and Their Families -- with its simple, illustrated design and practical, non- 2006, available on www.aphasia.org technical content – this award-winning, National Aphasia Awareness Month internationally acclaimed book is a user-friendly, easy-to-understand resource. in June E-News Bulletin

Caregiver’s Bill of Rights (author unknown)

I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.

I have the right to seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.

I have the right to maintain facets of my own life that do not include the person I care for just as I would if he or she were healthy. I know that I do everything that I reasonably can do for this person and I have the right to do some things just for myself.

I have the right to get angry, be depressed, and express difficult feelings occasionally.

Caregiver’s Bill of Rights (author unknown)

I have the right to reject any attempt by my loved one (either conscious or unconscious) to manipulate me through guilt or anger.

I have the right to receive consideration, affection, forgiveness, and acceptance for what I do for my loved one as I offer these attributes in return.

I have the right to take pride in what I am accomplishing and to applaud the courage it has taken to meet the needs of my loved one.

I have the right to protect my individuality and my right to make a life for myself that will sustain me in times when my loved one no longer needs my full-time help.

I have the right to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers. Quarterly Newsletter

May not be reproduced without permission 9 Business Survey

Supportive Materials Certified Aphasia Friendly

May not be reproduced without permission 10 Aphasia Advocacy and Outreach Current and Future Initiatives

Multicultural Task Force (MTF)

Aphasia Awareness Training for Emergency Responders

Annual Regional Conferences

Institutional Affiliates

PPA Survey

Needs Assessment http://survey.constantcontact.com/survey/a074 hxb9aygqtp7mw0/a01h4gu096a05/questions

Current and Future Initiatives MTF Accomplishments

Increased Outreach and Visibility Creation of MTF web page Recruitment of multicultural state representatives Revised Information Packet/Resources Fostering the creation of multicultural support groups Aphasia Friendly Businesses Newsletter articles on multicultural topics “I Am The Voice of Aphasia” Videos Translation of NAA brochure into Spanish, Greek, Chinese, Tamil, Portuguese, Hebrew, Korean , Public Awareness of Aphasia Survey Russian, French and Arabic Joint Funding/Collaboration Revision of NAA Mission and Bill of Rights Legal Advocacy

The After Words Project

????

MTF Accomplishments MTF Accomplishments

Collaboration with related organizations

Created subcommittees for Language Bank and and outreach to international aphasia Outreach Plan community http://issuu.com/latinonewyorkmagazine/docs/april_2010 Received ASHA Multicultural Project Grant for Sigo http://issuu.com/latinonewyorkmagazine/docs/marchissue Siendo Yo! Aphasia Film Project for Hispanic Persons with Aphasia

May not be reproduced without permission 11 Annual Regional Conferences Annual Regional Conferences

Expanding successful Speaking Out! Conduct Needs Assessment conference format to offer more Create Manual as a template frequent, regional meetings Standard components of each conference st 1 held in October 2009 in Tulsa, Oklahoma Retain unique features of Speaking Out! June 12, 2010 in Washington, DC in a one day conference June 26, 2011 in Chicago, IL Serve a wider community; eliminate Ramp up over next 5 years physical and financial constraints

Regional Speaking Out Conference

Annual Regional Conferences Collaborative Efforts to 2012-NAA 25 th Anniversary Empower People with Aphasia

Pittsburgh, PA- July 28, 2012 Collaboration between two Regional

Atlanta, GA Community Aphasia Programs Stroke Comeback Center Orlando, FL-May 27, 2012 The Snyder Center for Aphasia Life Las Vegas, NV-June 29, 2012 Enhancement (SCALE) Oklahoma City,OK To highlight members using technology Madison, WI -2013 to facilitate communication

May not be reproduced without permission 12 Presentation Themes- Empowering Others to Live Five Key Points Well with Aphasia

1. Get back your life Process- Topic Selection 2. Everyone should be able to get help Members from both centers determined points to share 3. Success = a better life Small groups met to generate themes using the 4. You and your world should be included acronym “EMPOWER” 5. You should get help at all stages of Center members conferenced by SKYPE to plan your recovery (in the hospital, at home SCALE members created video of their personal and in the community) messages Members from both centers volunteered to share their personal stories

Empowering Others to Live Well with Aphasia

Process- Message Delivery

Members were supported in formulating their stories

Members practiced their speeches with VAST is an innovative application of video technology to facilitate volunteers and with each other via Skype and improve communication abilities for individuals with apraxia Some members used technology to deliver and nonfluent aphasia. The simultaneous combination of visual their speeches and auditory cues allows these individuals to produce speech for live scripted communication and for therapeutic practice. Members who were unable to attend the Developed at the Stroke Comeback Center. Visit conference sent video recordings www.speakinmotion.com for further information.

Presentation Themes- Increasing Awareness & Knowledge of EMPOWER Aphasia

Engage yourself in everyday activities Improving understanding of the public Make new friends, community and relationships awareness of aphasia in different cultures and communities is particularly relevant for: Practice, practice, and be positive ••Efforts to improve and extend services Other ways of doing things •• Efforts to increase research support and Working on new interests, teach others •• To encourage improved social inclusion of Exercise and recreation aphasic people Religion

May not be reproduced without permission 13 Where did you hear about aphasia? Results EnglishEnglish--speakingspeaking data International Comparison - 22% Where Do People Hear About Aphasia?

10% 70

60 Argentina 30% Rel/Friend 50 Croatia TV/Radio 40 Greece Paper/Mag Norway 30 Work Slovenia Other 23% 20 English-Sp Mean 37% had heard 10 about aphasia 0 through the media Media Work Rel/Fr

14%

((Simmons Mackie, Code & Armstrong et al., 2001)

Conclusions and Implications Targeting Where and to Whom

We found significant variability in knowledge of ‘Service providers’… aphasia between the countries surveyed. • ‘service encounters’ in pubs/restaurants, shops, As with previous studies, this appears to provide churches, cinemas, public transport, community venues further evidence of differences in levels of awareness • TV/Radio, newspapers/magazines of aphasia in different cultures, though our survey method has in-built reliability issues. Our combined Professionals…

sample is larger than previous surveys. • health & social services, residential homes, hospitals, Variation in awareness may be related to local media conversation partner training, lobbying & advocacy with impact, regional variations in incidence/prevalence of ‘purse holders’

aphasia and socio-economic and educational Family & Friends… variations and cultural differences in attitude to disability . Such information is vital for targeting • conversation partner training, relatives’ workshops, awareness raising. family counseling

Aphasia Awareness Training for Increasing Public Awareness Emergency Service Providers

Use the word “aphasia “ to describe aphasia Grant received from Christopher and Encourage and support PWA, family and Dana Reeve Foundation to initially friends in promoting public awareness fund project Participate in public awareness campaigns- Training of Police Officers, June is National Aphasia Awareness Month Firefighters and EMTs in NY, NJ and Bombard the media CT Look for public venues to educate Distribution and recognition of Involve students in aphasia advocacy Aphasia Sticker Influence public policy and legislation Go National!

May not be reproduced without permission 14 RECOGNIZE THE DECAL Social Networking/Blogs Windshield/Window Decal Part of a National MKCREATIVEBlog Campaign

Place decal for vehicle in the left rear passenger side of car

At home place at front and back entrance

Groups, State Reps, Programs/Centers

Reversing the trend… Connecting with the Community

What we know… •Greater than 70% of individuals with aphasia are unable to return to work.

•70% of individuals with aphasia felt that people avoid contact with them because of their difficulty with communication.

•90% of individuals with aphasia are socially isolated!

May not be reproduced without permission 15 So what will it take? Abilities

What “CAN” the PWA “It takes a village” … do? Awareness / Understanding / Training Strength based Confidence on behalf of the PWA assessment and treatment planning. (Person with Aphasia) and all potential Consider the Communicative Partners! journey…not the destination! Bridges to successfully re-engage… or perhaps…never dis-engage!

Barriers Bridges …the village… your community!

Individualized Hierarchies for each “I belong to ______” We recognize the challenges of LPAA goal Access to communities returning to vocational, Addresses avocational, and recreational life Communicative Strength in numbers for the individual with aphasia are Confidence Evening out the playing MULTIDIMENSIONAL and Can generalize from Ask yourself how require more than support, one goal to another many communities field: the bi-lingual encouragement and desire… it because of success you belong to… advantage…if everyone requires = a hierarchy! “speaks Aphasia”

What is a Communication Support Team?

Neighbors A Communication Support Team©, or CST, is a trained group of volunteers, selected by the Person Faith Based With Aphasia and their family members. The Team Congregation can be made up of friends, neighbors, members of a church or social group … models Care Teams that many faith based organizations have been using for Friends years! (childhood, Individual Family work, kids, with Aphasia etc.) What kind of activities can the CST do with the Person With Aphasia?

Club or Team Colleagues Who does the training? The LPAA (Life Participation Approach to Members Aphasia) states that any activity in which Civic A Speech / Language Pathologist Organization communication is a barrier to the full Social groups familiar with the Individual’s enjoyment of that activity, is appropriate for Communicative Strengths, support and intervention. Opportunities and Interests

May not be reproduced without permission 16 Queens College-NSSLHA Bake The Adler Aphasia Center Sale in Maywood, NJ

The Aphasia Center of HealthSouth MountainView West Texas in Morganstown, WV

As a fundraiser for our Aphasia Club, area restaurants and affiliated companies donated gift cards that we used for Aphasia Bingo. Staff paid to play at lunch time. The cards were designed with Aphasia Terminology and emotional words that express how our members with Aphasia describe their feelings. Throughout the course of the game, we would define some of the words or talk about those emotions and how staff can better communicate and support individuals with Aphasia. -Mary Burleson, Coordinator

M.A.G.I.C. in Iowa City , IA HealthSouth MountainView in Morgantown WV "To follow up on the theme of ARTS (Aphasia Recovery Through the Senses), we decided to create a “paper quilt”. During our first meeting of the summer, each participant contributed a square symbolizing what their aphasia recovery has meant to them. Some of the images are more symbolic, some are literal. Some of our participants just wanted to portray a feeling of contentment and enjoyment. We posted the finished squares in a quilt pattern on the bulletin board in the lobby of the Wendell Johnson Speech and Hearing Center, where they will remain until the end of the summer. " -Jean Gordon, Facilitator M.A.G.I.C. ( Modalities Aphasia Group - Improving Communication

May not be reproduced without permission 17 M.A.G.I.C. in Iowa City, IA SCALE-Snyder Center for Aphasia Life Enhancement in Baltimore, MD

SCALE members participated in Annual Baltimore Herb Festival. They manned tables With educational information on aphasia. Flowers and vegetable plants grown by horticulture program were featured for purchase

Aphasia Awareness in the News

Special Supplement Section in The Washington Times about Aphasia Awareness Month.

http://www.print2webcorp.com/news/washingtontim es/AphasiaAwareness/20090611/p1.asp

Congresswoman Gabby Giffords Interview

May not be reproduced without permission 18 Aphasia in the Comics

Lynn Johnston “For Better or For Worse”

Garry Trudeau “Doonesbury” strip from 2/18/2008:Toggle has come back from Iraq with some serious brain damage, and the classic symptoms of Broca's aphasia .

Aphasia Camp Manitou-Eau Claire, WI Aphasia Film Forum

These materials consist of a variety of helpful tools for therapists, and partners of people with aphasia to use before, during, and after watching movies. In this way, people with aphasia can have a more enjoyable experience and be supported in a relevant conversation about the movie afterward. Each packet also includes a set of clinical practice exercises that are optional, but may be used in conjunction with the movie packet. Currently, we are offering a variety of film packets. http://www.speakingofaphasia.com/productsnew.html

May not be reproduced without permission 19 Not Voiceless Dance Project

Created and choreographed by CTRS

Based on writings/interviews with PWA

Sections performed in July2012

Collaborating with Amalgamate Dance Company in NYC to create other aphasia related dance pieces

Why Are Groups Needed?

NAA Priority-Development of a National Directory of Aphasia Community Groups Majority of individuals with aphasia and families:

Lack opportunities for socialization and support

Unaware of resources

Become socially isolated

Why Are Groups Needed? Beyond the Plateau …

Wepman, JM, 1953, JSHD Insurance coverage for speech therapy “Aphasic patients left to their own devices tend to plateau in the limited resolution of their language deficits. With this plateauing comes the development of a whole series Few can afford to pay privately of so called secondary reactions to their condition. Accepting their disability usually means a withdrawal from the social ACGs are low cost option environment. Anxiety and depression become increasing problems. Comfortable environment to “practice” A sense of worthlessness, feelings of futility and an over-all attitude of insecurity becomes pervasive. In sheltered Research demonstrates that speech can environments they tend to become overly dependent, invalidized and infantilized. continue to improve years after reaching a “plateau”

May not be reproduced without permission 20 Beyond the Plateau… Beyond the Plateau…

Wepman, JM, 1953, JSHD (cont) With apologies to Audrey Holland, “Therapy that is supportive as well as Holland, A (2011…in person) instructive is the only way in which these patients can again regain a wholesome “Wepman said…when a PWA “plateaus” self-concept which permits them to they should find another therapist…it is function in society as whole people. They must be stimulated to action. Their the clinician that plateaus, not the physiological readiness must be utilized. PWA.” Their motivational levels must be understood and constructively used.”

Value of Aphasia Center Beyond the Plateau… Participation

Most aphasia TX studies are done with Increase in Aphasia Centers in past 2 people with “chronic aphasia” to decades (Elman, 2010) remove the impact of spontaneous recovery… Most employ “social approach” and at least some group TX/conversation TX (Elman, 2007) So why are we telling people they will

have 1 year to recover??? Enhance identity /adjustment

(Simmons Mackie and Elman, 2010)

Value of Aphasia Centers Value of Aphasia Centers Participation (Elman, 2007, 1999) Participation (Elman, 2007, 1999)

Some Benefits of Conversation TX: Benefits of Conversation/Group TX:

Conversation groups promote interaction among • Supportive environment improves psychosocial members function (Elman and Bernstein-Ellis, 1999) • Turn-taking • Initiation • Help PWA establish new positive identity; (Simons- Provides different communication partners and more Mackie, 2008; Elman, 2007) typical/natural communication task May foster transfer of gains and generalization • Narrative helps with adjustment to post-stroke (complexity theory) changes (Shadden & Hagstrom, 2007)

Reduce isolation caused by aphasia

May not be reproduced without permission 21 Value of Aphasia Centers Value of Aphasia Centers Participation Participation (Elman, 2007, 1999) (Simmons(Simmons--MMackieackieet al., APM&R, 2010

Benefits Group TX: Communication Partner Training in Aphasia: A • Aphasia Group TX are effective Systematic Review. (Wertz et al., 1981; Elman and Bernstein-Ellis, 1999; Elman, 2007) “Communication partner training is effective in improving communication activities and/or participation • Provide opportunities for interactional of the communication partner and is probably effective (interpersonal content) and transactional (factual in improving communication activities and/or content) uses of language participation of persons with chronic aphasia…” •(Elman, 2005; Simmons-Mackie 2001)

•Cost-effective (Wertz et al., 1981; Elman and Bernstein-Ellis, 1999; Elman, 2007)

Getting Started-Needs What do Groups Do? Assessment

Empower 1. Who should be served by the group?

Combat social isolation and friendship 2. How will potential members be

Promote conversation identified?

Build Optimism 3. What areas of focus best meet the needs of group? Provide setting to learn new things 4. How will emerging interests be Move person out of “patient” role accommodated?

Needs Assessment, cont’d. Needs Assessment, cont’d.

5. Who are the group facilitators? 10. Are there sub-groups within potential Expertise? membership?

6. Who will take over if facilitator (s) is 11. Will there be group goals and/or away? rules?

7. Are there volunteers to assist? 12. How will various communication

8. What must volunteers know? modalities i.e. drawing, gesture, Training? writing, be incorporated?

9. Is there need for an advisory board? If 13. Is there a space that can be regularly so, composition, size? scheduled?

May not be reproduced without permission 22 Needs Assessment, cont’d. Recommendations

14. What transportation is available? Helpful to start with small group that wants group to succeed 15. What will be the group funding source? “Acknowledge competence” then trust it 16. How often should the group meet and Provide venues for participants to for what length of time? tell/retell their stories 17. How will ongoing group development Help people with aphasia find ways to take place? advocate for themselves 18. How will feedback be solicited and Group should be a safe place where used? judgment is suspended

More Recommendations What is the Group Focus?

Establish leadership within group and Social Community Re-entry delegate

Create cohesion amongst the group

Create structure within the group so members can work toward achievable goals Language stimulation Educational/Entertainment Be interactive and incorporate meaningful activities

Get people interested and involved in educating others

What is the Group Focus? What is the Group Focus?

Peer Support Enhancing communication, confidence and supported conversation Emphasizing personal narratives Sharing opinions Education and Advocacy Nonverbal communication skills Listening skills Caregiver support Etc, etc.

May not be reproduced without permission 23 Group Activities Group Activities

Music and movement activities Category Story

Sharing news of family/friends Practice ordering food, giving Flash cards with themed questions directions, taking phone messages

Current evnts discussion Mock Court Holiday luncheons/birthday celebrations Educate students/provide inservices Guest speakers/performers Cooking Pen Pals Store/Gift shop Watch films followed by discussion Theatre/Drama

Games Computer Group Activities

Board Games- Using special effects and cranium, pictionary animations

Bingo Expression about their interests Interactive Games Creating a personal slide show Crossword Puzzles Filming funny skits ( written and Name that Tune spontaneous to view on computer) Jeopardy Teaching basic computer skills Bowling

Computer Group Benefits Computer Group Video

Facilitating new learning Love life to the fullest video

(directions , vocabulary related to Computer Group video (skits and technology ) jokes)- Start -9:00 Engaging in a fun social activity

Encouraging creativity

Stimulating word finding skills

Independence

May not be reproduced without permission 24 Literature Group Activities Literature Group Benefits

Selecting interesting literature to Discussing literature read as a group ( poetry , short Facilitate recall of information about stories, plays, novels) authors and playwrights Enhance inferencing skills Utilize reading skills Stimulate memory skills Discuss literature Expand knowledge base Act out segments of a play Assist with word finding through discussion

Promoting a real world, social activity

Music Group Activities Music Group Benefits

Reading about a composer/singer- Stimulate right brain activity classical , popular, Broadway Facilitates word finding

Recalling information about music Stimulates cognitive skills- ( eg recalling information about the selected Singing/ humming familiar music, word recall through a familiar melodies melody)

Discussing a singer, composer, Involves reading skills about the music musician selection & lyrics Provides a normalizing activity & socially gratifying

Mind/Body Group Activities Mind/Body Group Benefits

Relaxation techniques presented Relaxation /use of music to relax through creative channels- Creative visualization to enhance visualization, music , meditation, meditation and promote relaxing Expressing feelings about their body Gentle yoga and stretching Facilitating word finding Discussion before/after group Participating in an activity that is social about feelings, pain, body changes, and fun etc.

May not be reproduced without permission 25 Outcomes /Value of Using Arts Mind/Body Group Video with PWA

Aphasia and the Arts CD Empowers

Participation regardless of severity, physical impairment, previous experience

Collaborate, coach and support

Encourages spontaneous communication

Outcomes/Value, cont’d University/College Based

University of Arizona

Discover new talent Cal State-East Bay

Boston University Learn a new skill Western Michigan University

Kean College- NJ Return to valued and meaningful University of Washington

activity The Aphasia House -University of Central Florida

CW Post- Brookville,NY Gains in linguistic, psycho-social, Duquesne University-PA emotional and recreational skills UNC –Chapel Hill DaZy Aphasia Centre- University of Toledo

MGH Aphasia Center-Boston

Aphasia Center of Acadiana-University of Lousiana/Lafayette

Residential/ Intensive Hospital/Rehab Based Treatment Programs

University of Michigan Rehabilitation Institute of Chicago www.aphasiahelp.com St Joseph’s Carondolet Hospital-Tucson Dalhousie University, inteRACT Moss Rehabilitation Center-Philadelphia (spring and summer only) www.aphasiaaction.com National Rehabilitation Hospital –D.C. PIRATE -The Program for Intensive Residential Aphasia Treatment & Education Luther-Midelfort-Mayo Health System-WI www.pittsburgh.va.gov/PIRATE/index.asp Gaylord Hospital, CT North Memorial Medical Center- MN Center for Aphasia & Related Disorders-CA http://northmemorial.com/strokeCenter/speechPrg.cfm

Rehabilitation Institute of Chicago http://aphasiatherapy.org/

May not be reproduced without permission 26 Aphasia Centers/ LPAA Aphasia Center/LPAA Approach Approach

Aphasia Institute-Toronto www.aphasia.ca Stroke Comeback Center-Vienna, VA www.strokecombackcenter.org Aphasia Center of California-Oakland Snyder Center for Aphasia Life Enhancement www.aphasiacenter.org www.scalebaltimore.org

Adler Aphasia Center-Maywood, NJ HARC-Houston Aphasia Recovery Center www.adleraphasiacenter.org www.harctx.org

Aphasia Center of West Texas -Midland, TX Austin Speech Labs www.aphasiawtx.org www.austinspeechlabs.com

Steps Forward, LLC-St. Petersburg, FL Speaking of Aphasia-Montclair , NJ http://stepstherapy.net/ www.speakingofaphasia.com Triangle Aphasia Project-Raleigh, NC Aphasia Community Friendship Center-Ann Arbor, MI www.aphasiaproject.org www.aphasiacentermi.org

Online Groups Personal Perspectives

Aphasia Toolbox Rachel’s story Pittsburgh , PA 15212 (724) 494-2534 [email protected] www.aphasiatoolbox.com

Local Initiatives What You Can Do

Contact the National Aphasia Association and obtain aphasia ID cards/ stickers and distribute identify gaps in the state them to the community Create resource book / updates Become an NAA Affiliate Link websites … include map Train Emergency Responders/Businesses Consider joint funding opportunities Educate the community and each other Start aphasia group/program Lending libraries Fundraising events Graduate education and presentations Collaborate Eliminate any perception of territorialism

May not be reproduced without permission 27 At the end of the day… National Aphasia Association

“It’s about believing so strongly in 350 Seventh Avenue-Suite 902 people that their awareness of your New York, NY 10001 belief in them causes them to rise to (212) 267-2814 new heights of individual growth and achievement.” Ron Willingham from (212) 267-2812 (fax) The People Principle (800) 922-4622 www.aphasia.org [email protected]

For More Information

Ellayne Ganzfried, M.S., CCC-SLP Executive Director [email protected]

Amy Hsiao Information/Administrative Coordinator [email protected]

Stephen Symbolik Project Coordinator [email protected]

May not be reproduced without permission 28