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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

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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

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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

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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

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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.

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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

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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

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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

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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

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Dynamic Dysplay Headmouse Adapted Laptop

T

Eye Control Adapted Laptop Cyber Link Tobii C12 Integrated Eye Control

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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

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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 = TX or amplification, etc.) comprehensively address needs and maximize • Continue to formulate intervention plan to resources comprehensively address needs and maximize resources

Stage 4:Augmentative Stage 5: Alternative Communication Communication • Listen • A person no longer has any use of functional • Explain what is happening speech; AAC is an alternative for their verbal • Attempt to determine rate of speech change communication. • Speech/lang eval, cognitive screen and speech • Include many techniques from no tech sample (vocalizations) to low tech (alphabet board) to • AAC serves as a means to augment residual high tech (SGDs and ECUs). speech and writing. • Our role: integrate AAC into their daily lives at a • Speech rate: rapid deterioration of intelligibility pace suitable to their functional needs, often occurs when speaking rate reaches 45-60% environmental support and emotional capacity. of habitual rate or 85-125 wpm. (Ball L, Willis M, Beukelman D, Pattee G. A protocol for identification of early bulbar signs in ALS. J Neuro Sci, 191, Oct 2001, 43-53.)

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Why do we intervene? 4 Social Purposes of Communication 4 purposes of social interaction 1. Expression of needs/wants. (Light, 1988)  Regulates behavior of listener, content important, accuracy Basic Needs and Wants important, often rated as more critical by AAC practitioner and communication partners than users 2. Information transmission. Share New Information  Share information, content important, tend to be more novel messages – more difficult for AAC user Social Closeness 3. Social Closeness  Develop social bond, content less important, interaction quality Social Etiquette important – good use of voice banking 4. Social Etiquette  Fulfill conventions, predictable content (e.g. please and thank Fried-Oken M, Fox L, et al. Purposes ofpALS communicating with technology. you) – many systems pre-loaded with this, or voice banking Augmentative and Alternative Communication. 2006.

How successful is AAC? Competencies Supporting AAC Acceptance of AAC by pALS • Linguistic: What code used? What is knowledge • In a sample of 50 pALS, of code? How will it be represented? How will it be learned? • 90% accepted AAC technology immediately (no sig. diff by gender, spinal vs. bulbar ALS, or age.) • Operational: How does the technology work? Who will support it? • 6% accepted AAC technology after some delay • Social: What are the rules of social intercourse? • 4% rejected AAC technology (due to lack of support How does the AAC user characterize those rules? from family or recommendation from physician) • Strategic: How well does the AAC user Ball L, Beukelman D, Pattee, G Acceptance of augmentative and alternative communication comprehend the limitations of the system? How technology by persons with amyotrophic lateral sclerosis. Augmentative and Alternative are those limitations dealt with? Communication. 2004. 20(2), 113-122.

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Clinical impressions Employment and AAC

• AAC use puts pALS (and other • Do pALS use AAC at work? neurodegenerative Dx groups) in a “bilingual speaking situation” • pALS who can adapt jobs for text-generation • Most pALS are capable of learning to use AAC remain employed longer multi-modal system, adapt to motor access changes as needed • pALS express satisfaction with employment and • But not without significant counseling and motivation to continue contributing in the support using a participation-based approach workplace Fried-Oken M. AAC and employment for individuals with neurodegenerative disease. Pittsburgh Employment Conference for Persons • No “one best way” to intervene – “optimal” a who Use AAC. 1988. moving target

Language Representation What is current AAC technology

Alphabet intervention? Message-based Or Or Pictographic Letter-based symbol

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Quickfires: Formal Rate Enhancement Techniques

• Quickfires by Dynavox • Word and phrase prediction • Visual Scene Displays • Natural Language Processing with closed vocabulary sets • RFID or some facsimile thereof, server- based vocabulary?

Expanded Quickfires: Hi. Phrase Prediction for H

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Word Prediction

abbreviated expansions (macros)

• AAC = Augmentative and Alternative Communication • 3S = 3 spades • 3C = 3 clubs • 3H = 3 hearts • 3D = 3 diamonds

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Morse Code

• 2 switch option

Visual Scene Displays: Support Benefit of visual scene displays for storytelling • Highly naturalistic organization of communication vocabulary • Decreased memory load • Less need to re-work system with cognitive decline • Establish a shared communication space • Serve as a platform for co-constructing messages • Allow for integration with other types of communication supports

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Contextually-based NLP Output Mode

• Access large vocabularies for specified • Voice banking topics • Off-the-shelf speech synthesis • Use in word or phrase prediction • Personalized speech synthesizer • Use with location-specific or partner- specific messages (e.g. messages related to preschool when talking with 3 y.o. grandson)

Voice Banking Voice Banking Procedure • Allows communication in pALS’ voice and • Before starting remind yourself to be sensitive to intonation patterns to retain personality during psychological demands of voice banking nonspeaking condition “Yeah, right!” • Be prepared to stop if too emotional • Reduces depersonalization of AAC • Determine messages to be saved for later use • Reduces feelings of loss of control, helplessness; • Consider • Reduces anxiety and fear • Personal, idiosyncratic messages pALS takes active role in care • • Question words • Gives family a concrete way of assisting in care • Purposes of communication by choosing messages • Digital recording best option (http://audacity.sourceforge.net/) Source: Costello, John. (2000). AAC Intervention in the Intensive Care Unit: The Children's Hospital Boston Model. AAC, 14: 144-153. • Transfer to speech generating device later

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Digitized Speech Devices Speech Synthesis Bluebird MightyMo/MiniMo • Quality of synthetic speech: • Multilingual options for same SGDs • As speech science advances, so does the quality of speech output. • Synthetic vs. Concatenative • Customized synthetic speech: • The concept: Synthesize a voice based on the parameters of an individual user. • Record samples of user’s voice and use as data for speech synthesis. • http://www.modeltalker.com/ Chat Box Macaw Family (9 +minutes)

Speech Output Software Example

Synthetic speech • Next Up Talker • Many voices • Download program

Dynavox VMax from Internet for $99 • Speaks everything written on screen • www.talkforme.com

PRC Pathfinder Lightwriter SL40

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Motor Access Positioning

• Alternative access options • Majority of time in power chair = huge • Switches potential for chronic pain, injury, terrible support for access, high fatigue, gross • Eyegaze options underestimation of potential. • BCI (brain-computer interfaces) options • Variations in tone throughout body (high in • Always consult an OT/PT with ALS some regions, low in others) requires experience extensive assessment and support. • Reflex patterns can be controlled to a degree via positioning/support.

Positioning Head Mouse Access

• Attempt to achieve symmetry • While placing a switch imagine what it would be like to use it. • Stabilize trunk and extremities. Don’t ask someone to extend their arm into space or crane their neck. • Minimize residual movement (usually by providing good support). • Allow resting position.

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Eye gaze as input www.cogain.org

Catalogue of currently available eye trackers for interactive applications within AAC • Alea Technologies Gmbh Intelligaze IG-30 • DynaVox Technologies EyeMax System • Eye Response Technologies ERICA • EyeTech Digital Systems EyeTech TM3 • H.K. EyeCan VisionKey (5+, 6V/H, 7) • HumanElektronik GmbH SeeTech • LC Technologies The Eyegaze Communication System, Eyegaze Edge and Eyegaze Edge Tablet • Metrovision VISIOBOARD • Opportunity Foundation of America EagleEyes • PRC (Prentke Romich Company) ECOpoint • TechnoWorks CO.,LTD. TE-9100 Nursing System for Enhancing Patients' Self-support Free: Click n type; e-triloquist; Microsoft • Tobii Technology Tobii C8, C12, CEye, MyTobii P10, D10 accessibility suite

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Clinical Application…

• AAC Paths will vary due to: Primary Progressive Aphasia • Rough ALS type • Bulbar onset • Limb onset • Presence of FTD • Patient specific variables • Environmental support • Access to external support (clinic, reps, etc.)

What is PPA? Diagnostic Criteria for PPA Mesulam, M. Annals of Neurology, 49 (4), April, 2001

1. A degenerative language disorder. 1. Insidious onset and gradual 2. ADL limitations attributable to loss of word finding, object- language impairment, for at least naming or word- 2 yrs after onset; 2. A language disorder that does not easily comprehension skills in fit into the classical aphasia typology. spontaneous conversation; 4. Absence of significant apathy, disinhibition, forgetfulness for recent events, visuospatial 3. A syndrome, often followed by cognitive 3. Intact premorbid language impairment, visual recognition skills; decline, that has been described with 3 deficits or sensory-motor variants. dysfunction within initial 2 yrs of L impairment;

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Diagnostic Criteria for PPA Mesulam, M. Annals of Neurology, 49 (4), April, 2001 Diagnostic Characteristics

5. Acalculia & ideomotor 6. Other domains possibly • Age of onset 40-75 years old, mean onset apraxia may be present in affected during 2 yrs, but first 2 yrs. language most impaired age of 60 years. function. • Preponderance of male patients – 2:1 ratio • Roughly 50% with genetic component 7. Absence of specific causes (i.e., stroke, tumor, infection, metabolic disorder) on neuroimaging.

PPA is a clinical syndrome which 3 variants of PPA may overlap with • Alzheimer’s disease • Nonfluent progressive aphasia (NFPA) • Frontotemporal dementia PPA with agrammatism • Corticobasal degeneration • • Dementia-lacking-distinctive-histology (DLDH) • Semantic dementia (SD) • CJD • Fluent progressive aphasia • ALS • ACD (Asymmetric cortical degeneration; Caselli, 1995) • Logopenic progressive aphasia (LPA) • Pick’s disease • PPA with comprehension deficits

Kertesz & Munoz, Amer. J. of Alzheimer’s Disease. (2002), 17(1).

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NFPA: nonfluent progressive aphasia (most common type of PPA in an AAC clinic) Progression of disease varies • Anomia or “trouble thinking of or remembering specific words when talking or writing”. • Yes/No confusion for responses • Initial “empty” speech with preserved prosody and fluency but little information. • Apraxia of Speech • Slow, hesitant and labored speech frequently punctuated by long • Agrammatism  Mutism pauses and filler words, early symptoms of agrammatism. • Simplification (generic words for specific concept) • Written language generation often mimics • Circumlocutions • Substitution by fillers (“thing,” “Whachamacallit”) spoken language generation • Phonemic paraphasias • Marked increase in speech errors, early symptoms of a progressive apraxia of speech. • Relatively preserved single-word comprehension with later difficulty comprehending complex syntactic structures. • Stronger oral reading that generative language skills.

Case Example Semantic Dementia (SD) • Fluent, grammatical speech; “Jay” • Confrontation naming deficits (often word knowledge can be accessed through visuo- [video clip] perceptual route) • Surface dyslexia (written word does not cue lexicon, auditory does) • Deficits in word comprehension (2-way naming problems) “In time, even the most common words fail to be decoded and the comprehension of conversation becomes impossible, although visual recognition of objects and faces remains relatively preserved” (Mesulum, 2001) • Later connected speech includes neologisms and semantic paraphasias

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Logopenic progressive aphasia Case Example (LPA) • Repetition and comprehension impaired for • “Deb” sentences but preserved for single words • Excellent Comprehension • Naming moderately affected • Severely impaired in digit, letter, and word span • Word Salad tasks • Marginally aware that she is serving up as • Pointing does not improve performance large a helping of word salad as she is • No influence of word length and do not show the normal phonological similarity effects • Confusions increasing, no longer able to • Atrophy or decreased blood flow consistently handle phone calls and independent found in the posterior portion of the left superior shopping, etc. and middle temporal gyri and inferior parietal lobule (Gorno-Tempini, M.L., et al., Neurology, 2008)

Stages of Intervention during the Case Example Neurodegenerative Language Process: NFPA • “Doug” I. No noticeable interference with generative • Virtually no verbalizations beyond 3-4 language but some word finding problems; perseverative phrases (“I’m okay” or “I love II. Detectable language lapses with hesitations and you”) dysfluencies; III. Reduction in language use leading to behavioral • Decent naming ability, picture presentation strategies and introduction of low tech AAC (circumlocutions; paraphasias; simplification; • Terrible performance when picture board agrammatism) presented – semantic linking only IV. Use of AAC tools and other techniques; V. No functional language.

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Communication Treatment Goals The Treatment Challenges:

• #1: To compensate for progression of language 1. To put the patient’s residual lexicon visually in loss (NOT stimulate the language system to front so that the patient can participate in daily regain skills). activities as language skills decline. 2. To begin soon enough to allow learning of this approach. • #2: To begin compensatory treatment as soon 3. To engineer the environment to support as possible. Be proactive so patient can learn to successful communication. use communication strategies and tools. 4. To teach the communication partner that functional communication will be partner driven • #3: To include primary communication – this often upside down for many couples. partners in all aspects of training, with outreach to multiple partners.

High tech tools Low tech tools

• Customized communication boards • Dynamic display • Customized brag books devices with customized • Remnant bags/boxes messages: • Single message devices • Dynavox V or • Talking photo albums M3, or Express • Dry erase board • Words+ Say It Sam Tablet SM1

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• Digitized devices Messaging with hard copy pages (Saltillo Bluebird II or • What messages to include in tools? VocaFlex) • Messages that cannot be expressed by other means • Talking Photo • Story telling: 87% of adult conversation is Album reminiscence and chatting (Augmentative Communication, Inc.)

Partner training is an essential Rogers, MA & Alarcon, NB. (1998). Dissolution of spoken component of AAC for persons language in primary progressive aphasia. Aphasiology. with PPA. Impairment Intervention  To tailor intervention and compensatory 1993 -> 1997 Unassisted -> Assisted techniques to specific functional needs (PPA Increased frequency of speech errors Develop long term Probes type) Increased severity of apraxia of Pacing, syllable segmentation speech  To identify vocabulary for external lexicon. Decrease fillers, word retrieval Difficulty accessing phonologic form Identify topics and key words  To support use of tools in familiar Decline in appropriate syntax use Gestures, writing, drawing communication settings. Difficulty accessing semantic Involve communication partners  To identify new opportunities for information Communication book Decreased access to orthography communication with tools. AAC device Auditory comprehension declines Partner-focused guided  To offer or confirm choices. Reading declines To initiate conversation during late stages of communication  Nonvocal PPA.

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Early Stage Intervention Mid-Stage Intervention

• Learn about the patient and their primary • Capitalize on early learning and practice communication partners (Hx, interests, with communication partner to bulk up family, ADLs, travel, etc.) communication books • Integrally involve the patient in constructing • Be mindful of text vs. pictures, “memory” booklets, word lists, hierarchy of combination, visual scene display, etc. difficult situations – always evolving • Be mindful of comprehension difficulties • All practice should occur with the primary (auditory, visual, orthographic) communication partner for future success • Use other output modes when possible (e.g. • More now = more later drawing, writing)

Late Stage Intervention www.brain.northwestern.edu/PPA*

• PPA Newsletters from 1996 (on line) • Will likely scale back longer, more complex • Join mailing lists communication books, lists, etc. • Connect to PPA databases • Stress daily routines, procedural memory • Clinician search and database for enjoyable activities • PPA literature database • Constantly monitor communication • Question and answer archive partner’s ability to facilitate use of tools • PPA Family Support Group

• Watch for further changes in • *maintained by The Cognitive Neurology & Alzheimer’s comprehension, ability to use other modes Disease Center at Northwestern University, Dr. M. of output, etc. Mesulam

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Individuals with dementia Alzheimer’s Disease have NOT traditionally been listed as a clinical group that has benefited from AAC.

Alzheimer’s Disease Alzheimer’s Disease

• Most common form of dementia • Episodic memory (events) sig impaired • >65years old = 10% • Semantic memory (facts) mod  sig • >85 years old = 50% impaired • 4x more likely if first order relative affected • Procedural memory (doing stuff) lightly impaired • Recognition better than recall • Very little evidence for how AAC works best for people with Alzheimer’s dementia

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Premise of pairing AAC and dementia

• Pairing the external aid with familiar and spared So, what AAC strategies skills (such as page turning, reading aloud) should maximize a person’s opportunity for success and aids should we

• These skills are based on intact procedural consider for adults with memory dementia? • The stimuli are relevant to a person’s ADLs

• It helps “chunk” information, provides external stimulation

Electronic Devices • Speech generating devices • Synthesized speech output • Digitized speech output

• Computers (Handheld, wearable, or desktop) AbleLink Web Trak • Dedicated versus integrated devices • Software purposes: • Schedules ERI AbleLink • Reminders Picture Handheld Visual • Augmented input or output Planner Compass

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CIRCA

A hypermedia • “Foto Dialer” reminisence program designed and marketed in Scotland, then the UK

External memory aids:

• Notebooks • cards • communication boards • calendars • signs • timers • labels • color codes • tangible visual symbols

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Bourgeois research (1991-1994)

• Made individualized memory wallets or cards • Persons with mild AD • Measured outcomes of conversations between trained caregivers (spouse, adult child, day staff) • Wallets: Pictures and words for 3 topics: • Family names • Biographical information • Daily schedules

So, we have some evidence Results that straightforward electronic • Increased the frequency of factual information and non-electronic AAC • Decreased the rate of ambiguous, perseverative, erroneous, or unintelligible utterances options can work. • Increased the conversational responsibility (turn taking) of person with dementia • Increased the number of on-topic statements How can we make them work during a conversation better?

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What messages should be chosen? 3 things to consider for each aid: • Autobiographical memories might be accessible 1. The messages or language in the aid • Messages that affect the environment might 2. How those messages are presented be more meaningful 3. The output, or result, of selecting a • Documented message topics from the message from the aid language of elders

Some elder speak topics Svoboda, E. (2001). Autobiographical interview: Age-related differences in episodic retrieval. Department of Psychology. Toronto, University of Toronto: 107. Levels of representation Emotional Family Events Concept of • Losing something • Birth of sibling “apple” important • Someone’s death • Being embarrassed • Child’s first day of • An argument school Auditory-verbal WORD: say • Pet dying • First house The tactile symbol “APPLE” • Being discipline at school • Moving to new home (The tactile The visual symbol: • Being lost • Moving to new school Object of Black & white picture • Meeting a special friend • First love APPLE) Colored drawing APPLE photograph • Being chosen • Wedding Visual-verbal • Wearing a special piece of • Engage Symbol: clothing • First dance write • Holiday • First child APPLE

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Symbol: visual or auditory What will be the result of symbol representation for a referent selection? • Color • Size • Communication partner validates message • Level of representation • Iconicity: Ease of symbol recognition • Electronic voice output (if used) labels the • Transparent symbols- visually resemble their symbol referents. • Opaque symbols- visual relationship to referent is not obvious. DUCK

AD AAC research question: Specific Aims • 1. To compare the effects of different input modes in an AAC device on conversational skills of • Do AAC tools improve the persons with moderate AD. quantity or quality of • Print alone • Print + photographs conversation by individuals • Print + 3-dimensional miniature objects with moderate Alzheimer’s • Photographs alone • 3-dimensional miniature objects alone disease? • Control condition (no board).

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Lena’s cooking board (2-D only) • 2. To compare the effects of output mode in an AAC device on the conversational skills of persons with moderate AD.

• Digitized speech output • No speech output

Lena’s cooking board (3-D only) Board with 2-D symbols + print

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Method Participant randomization to symbol type & voice output conditions 1. Identify participant and randomly assign to

condition for symbol type & voice output Input Mode 2. Determine participant’s preferred topic and Print only 2-D +Print 3-D + Print vocabulary Output Mode symbols symbols 3. Develop communication device for Voice output 5 6 3 No voice output 8 11 8 condition Total 13 17 11 4. Conduct videotaped conversations with participant for various conditions in their homes

IMPORTANT Results for Voice Output FINDING!

• Fewer utterances with Voice Output (p<. AAC supports simply 007) placed in front of people with modAD does not • More Minimal Speech with Voice Output, affect conversation especially one word utterances (p<.018) • Anecdotal evidence suggests participants No specific symbol type was are distracted by Voice Output beneficial Attention to board or physical reference to board was minimal or nonexistent for many subjects

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Clinical message: AAC WITHOUT TRAINING IS SPACED Add RETRIEVAL NO AAC AT ALL! training TRAINING component:

What is spaced retrieval? Adjusted study design • “A memory intervention that gives individuals practice at successfully recalling information over progressively longer intervals of • Conditions varied within participants: time.” (Jennifer Brush & Cameron Camp, 1998) • 1 primed experimental condition Spaced • Relies on classical conditioning and • 2 control conditions (no AAC device): Retrieval= repetitive priming. Semantic • Standard control prime • Used with elders with dementia to help remember compensatory • Primed control strategies such as using a schedule, swallowing safely, using a daily • 99 total conversations: calendar, and using adaptive equipment. • 3 conversations/condition • 9 conversations/participant

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Results: Subjects used the AAC device more when Add new dependent variables conversations were primed. closely tied to semantic primes

• Number of primed words used during conversation It works! • Number of utterances • Percent 1-word utterances • MLU in words • Type-token ratio • Number of references to AAC device

Used SALT software for transcription and analysis (References to AAC device during conversations (Systematic Analysis of Language Transcripts, Miller & Chapman, 1986-2000) quadrupled, as compared to untrained conversations)

AAC combined with spaced retrieval exercise improved access to topical vocabulary. Priming Wins with AD! . AAC improves conversation of adults In AAC-supported conversations, subjects used with modAD significantly more primed words, as compared to . when training for control conditions. semantic priming is added . to account for attentional, perceptual, or memory impairments that interfere with performance.

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Early Stage Intervention Mid-Stage Intervention

• Learn about the patient and their primary • Continue to teach/model priming techniques communication partners (Hx, interests, to communication partners. family, ADLs, travel, etc.) • Capitalize on early learning and practice • Integrally involve the patient in constructing with communication partner to bulk up “memory” booklets, word lists, hierarchy of communication books difficult situations – always evolving • Be mindful of text vs. pictures, drawings, • All practice should occur with the primary visual scene display, array size, etc. communication partner for future success • Be mindful of comprehension difficulties • Teach/practice priming method (auditory, visual, orthographic)

Late Stage Intervention

• Scale back communication books, boards to stress function, ADLs, basic choices, etc. Assistive Technology • Stress daily routines without training is not • Constantly monitor communication partner’s ability to facilitate use of tools assistive. • Monitor use and success of priming - Rick Creech, A.T. user and advocate

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Thanks for listening!

Chris Gibbons [email protected] 503-494-0378

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