12/2/09 AAC Clinical Pathways for Neurodegenerative Disease Augmentative and Alternative Communication refers to any strategy, technique or tool that enhances, replaces, Chris Gibbons, Ph.D., CCC-SLP augments or supplements an individual’s Melanie Fried-Oken, Ph.D., CCC-Sp Oregon Health & Science University communication capabilities. Portland, Oregon Communication impairments Who is an AAC user? leading to AAC use • Physical impairments • ALS (Lou Gehrig’s Disease) Anyone whose communication is adversely • Cerebral Palsy affected by an impairment in speech, • Spinal Cord Injury • Parkinson’s Disease language, cognition, and/or • Multiple Sclerosis physical abilities. • Cognitive impairments • Traumatic brain injury • Developmental Delay • FTD, AD Downloaded from AAC-RERC.COM 1 12/2/09 Communication impairments Augmentative Communication leading to AAC use Approaches • Language Impairment • Speech • Paper and pencil • Aphasia from a stroke • Vocalization • Communication books • PPA (eventual FTD) • Gestures • Communication boards • Autism • Eye gaze and cards • Body language • Remnants • Sensory Impairment • Sign language • For-purpose software • Blindness • Re-purposed software • Deafness • Voice output communication aids AAC Across the Lifespan AAC Across the Lifespan • Cause and Effect • Peer interaction • Concrete Referents • Academic Participation • Communication Context • Broader Social Access • Dyadic Exchange • Workplace Readiness/Participation • Play • Language Remediation • Cognitive Development • Alternative Language Access • Language Development • Cognitive Cuing Downloaded from AAC-RERC.COM 2 12/2/09 AAC Across the Lifespan AAC Clinical Path • Conversation Context Support • Functional outcome drives goals and • Dyadic Support clinical path • Symbolic Reference • Function of AAC in various populations • Visual/Physical Prompt vastly different depending on • Developmental trajectory • Functional Memory Aid • Assumed course of condition/disease/disability/ • Direct Referent Cuing remediation/cognitive stability • Basic Needs Choice Support • Language knowledge/accessibility, etc. Defining A Clinical Path Crucial Defining the Path for Success • We begin with a Participation Model of service delivery • Participation, not Stimulation • Participation model hinges on thinking differently about disability • Focus on function, not disability per se Downloaded from AAC-RERC.COM 3 12/2/09 Defining the Path Evaluation philosophy • Stress functional outcome • For patients with neurodegenerative disease, • Neurodegenerative diseases warrant well- the purpose of AAC is to provide tools and considered clinical paths strategies so that an individual can continue • Will use 3 specific DX to guide discussion to participate in daily life. • Look for where the lines intersect • AAC treatment is not necessarily based on assumptions to regain skills, improve skills, • Use those points to inform specific or even maintain skills. functional approaches with neurodegenerative intervention 3 Focus DX 1. Amyotrophic Lateral Sclerosis Amyotrophic Lateral Sclerosis 2. Primary Progressive Aphasia 3. Alzheimer’s Disease Group discussion of PD and MS to follow Downloaded from AAC-RERC.COM 4 12/2/09 Our Goals: I Do Not Communicate, Evaluation philosophy: Where Am I? Participation not stimulation • In the presence of ALS, the symphony of speech is problematic and vulnerable. AAC for patients with: • 80% of pALS will lose their speech (Saunders, ALS Walsh, & Smith, 1981). • Language representation • Output mode • “Loss of Speech” most frequently associated • Motor access symptom with “worst aspect of disease” (Hecht et • Microprocessor considerations al., 2002). • Disease trajectory assumptions • Probes for FTD • Devastating breakdown in social interaction, control, independence, identity. Communication and ALS Communication and ALS What Happens What Happens • Musculature enabling speech weakens. Most • Limb onset – 75% often the tongue first. • Bulbar onset – 25% • Concomitant FTD – 20% but may be higher – • Speech volume changes, softer, less able to highly variable presentation modulate with emotion, prosody. • Psuedobulbar effects highly variable • About 10% familial • Speech quality changes, rough, husky. • 90% sporadic (Guam, Italian soccer players, U.S. Military service most popularized risk groups) • Speech clarity changes, slurred sounding, hypernasal, reduced intelligibility, dysarthric. Downloaded from AAC-RERC.COM 5 12/2/09 Communication and ALS: What Does the Communication Perspective Taking Partner Typically Look Like? • Caregivers rate patients as having less energy and • Dominant socially/conversationally (“big more suffering than patients rate themselves. people”). • Patients rate their caregivers as more burdened • Directive overall than caregivers rate themselves (Adelman et al. 2004). • Unresponsive to AAC (avg. 7% response). • Anticipatory • Even basic communication strategies can alleviate such misperception and help relieve emotional • Question after question after question. distress. • Poor communication opportunity creators. How Should the Communication Communication and ALS: Partner Look? • Ask questions appropriate to the • Given the appropriate systems, training and communication system partner participation, pALS can continue to • communicate with their spouse and children • Respond about “mundane” household decisions • Discuss the “rules” of communication • Manage their medical care openly and honestly • Make important financial arrangements • Don’t be afraid to request complicated • Be funny information, but be prepared to wait • Impart comforting words to their caregivers and family • Let the AAC users be who they are first, • Make new friends reinforce their identity and independence Downloaded from AAC-RERC.COM 6 12/2/09 What Does Communication for “Communication competence and pALS Look Like? the control it brings insures that • It is comprehensive, not always complicated, and patients will maintain the ability always changing. to guide, direct, and influence the • Verbal with amplification. • Non-verbal (facial expression, eye blink Y/N, gesture, management of medical and pencil/paper, communication board, E-Tran, etc.). personal aspects of their lives.” • Light Tech – multi-message speech playback. • High Tech – computer-based software driven Yorkston, Miller, Strand, 1996 communication systems, voice output. • It accommodates increasing physical disability. • Alternative access (switch, head mouse, eye control, etc.) Speech recognition Voice Amplification Options • Dragon-Naturally Speaking Microphone • Must have consistent speech production attachments • Mild-moderate dysarthria is adequate for controlling computer with speech input. ChatterVox voice amplifier JustAMP or JusTalk JustMED, Inc. 503-524-4223 Voicette and Mini-Vox from Luminaud Downloaded from AAC-RERC.COM 7 12/2/09 Attention Getting Devices Telephone Options Ameriphone XL25s Amplified Telephone with Outgoing Amplification • Bicycle horns product #: 76563.000 The XL25s™ amplified corded phone, by Clarity®, features Clarity® Power™ technology to Available through make words not only louder, but also clearer and easier to understand. The XL25s™ PUC TDAP: provides up to 18 decibels of outgoing voice amplification, Telecommunication • Cow Bells making it an ideal solution for those with low speech or a mild- to-moderate hearing loss. $99.00 Device Access TTY and Program Oregon Relay System [email protected] • Battery Powered Doorbell Speakerphone with SGD (available through PUC TDAP) Communication and ALS: Options E-Tran Board http://gracemagazine.files.wordpress.com/2007/03/writing450.jpg Downloaded from AAC-RERC.COM 8 12/2/09 The “MegaBee” E-tran Device http://www.bindependent.com/hompg/bi/bindep/store/aisles/s-needs/communication/communic.htm Hard copy print out “Talking Typewriters” DynaWrite Lightwriter SL35 Mayer-Johnson Writing with Symbols Proloquo2go Downloaded from AAC-RERC.COM 9 12/2/09 Dynamic Dysplay Headmouse Adapted Laptop T Eye Control Adapted Laptop Cyber Link Tobii C12 Integrated Eye Control Downloaded from AAC-RERC.COM 10 12/2/09 Single/dual switch access Working while locked in Brain-computer Cyber link interface Stage 1 Normal Speech: Initial AAC staging for pALS and their Consult, Education, Counseling families • Listen (www.dukespeechandhearing.com ) • Begin to build trust and rapport STAGE 1. Normal Speech Processes • Explain your general resources, why you are part STAGE 2. Detectable Speech Disturbance of their intervention team • Depending on person, may or may not bring up STAGE 3. Behavioral Modifications likelihood of speech loss at first visit STAGE 4. Augmentative Communication Use • Assure that resources exist to accommodate loss of communication if conversation goes there STAGE 5. Loss of Useful Speech • Baseline speech/lang eval, cognitive screen and speech sample if possible Downloaded from AAC-RERC.COM 11 12/2/09 Stage 2 Detectable Disturbance: Stage 3 Behavior Modification: Education Basic Implementation • Listen • Listen • Explain what is happening • Explain what is happening • Attempt to determine rate of speech change • Attempt to determine rate of speech change • Speech/lang eval, cognitive screen and speech • Speech/lang eval, cognitive screen and speech sample sample • Augmentative resource education based on • Augmentative resource education and application symptoms (dysarthria vs. low volume) of light strategies based on symptoms (dysarthria • Begin to sketch intervention plan to vs. low volume =