use of aac to enhance social participation
TRANSCRIPT
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Use of AAC to Enhance Social Participation of Adults with
Neurological ConditionsDavid Beukelman
With
Susan Fager & Laura Ball
2006 AAC-RERC State of Science Conference
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PurposePurpose To review “AAC-State of the Science” for persons
with acquired conditions that result in complex communication needs. Amyotrophic lateral sclerosis Brainstem impairment Traumatic brain injury Chronic, severe aphasia Dementia Parkinson disease Multiple sclerosis Myasthenia gravis Huntington disease
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ALS: DemographicsALS: Demographics
Age of onset--20s to 60sInitial spinal symptoms live 5 times longer
than those with initial bulbar symptomsLife expectance is much longer if one opt
s for invasive ventilationArtificial nutrition increases life expectancy
somewhat, increases quality of life.
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ALS: AAC Acceptance & UseALS: AAC Acceptance & UseNebraska ALS Database (N = 140) Nebraska ALS Database (N = 140)
(Ball(Ball, , Beukelman, Pattee & colleagues (2000, 2001, 2002, 2004, 2005, 2006)Beukelman, Pattee & colleagues (2000, 2001, 2002, 2004, 2005, 2006)
95% unable to speak prior to death 96% accept AAC (6% delay; 4% reject), similar
for men and women All, who accept, use until within a month or two
of death Length of use is remarkably similar for those
with initial spinal (23 months) or bulbar symptoms (26 months) (under-estimates because 15% continued to use while ventilated)
Communication functions documented (Mathy,Yorkston, & Gutmann, 2000)
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ALS: AAC ReferralALS: AAC ReferralDelayed referral for AAC assessment
remains a primary intervention issue.Persons with ALS
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
0 50 100 150 200 250
Speaking Rate (WPM)
Percent Intelligible
bulbar
spinal
mixed
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Intelligibility X Months Post Intelligibility X Months Post DiagnosisDiagnosis
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
0 5 10 15 20 25 30 35 40
bulbar
spinal
mixed
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One Person’s ExperienceOne Person’s Experience
Sept.: 97% intelligible, rate 90 wpm
Nov.: 75% intelligible, rate 68 wpm
Feb.: 33% intelligible, rate 52 wpm
May.: 6.8% intelligible, rate 36 wpm
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ALS: SupportALS: Support
AAC Technology Instruction Persons with ALS--3.5 hours AAC facilitators--2 hours
AAC Facilitators Typically family members Non-technical backgrounds
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AAC FacilitatorsAAC Facilitators Wife 32% Daughter 28 Husband 9 Self 7 Friend 4 Nursing 4 Daughter-in-law 3 Son 3 SLP 3 Brother 2 Granddaughter 2 Grandson 2 Mother 1 Sister 1
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ALS: AAC Technology ALS: AAC Technology Donation PatternsDonation Patterns
Donation Patterns for AAC Technology
Continue15%
Donated59%
Retained
26%
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ALS: Future DirectionsALS: Future Directions
Access options (transitions)Speech synthesis (for older partners)Access to other technologies Facilitator instruction
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Traumatic Brain InjuryTraumatic Brain Injury
Patterns of recovery of natural speech 55-59% recover functional speech during Rancho
levels 5 and 6--(middle stage) (Ladtkow & Culp, 1992; Dongilli, Hakel, & Beukelman, 1992)
Current medical interventions reducing percentage and type of persons with complex communication needs (Research Needed).
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TBI: AAC Acceptance and Use TBI: AAC Acceptance and Use
Most recent review (Fager, et al., 2006)94% accepted high tech AAC
recommendation81% continued to use after 5 years87% letter-by-letter spelling13% symbols, icons, and drawings 6% did not receive AAC device--funding
issues 12% discontinued use--AAC facilitator issues
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TBI: AAC Acceptance and TBI: AAC Acceptance and Use Use
100% who used low tech AAC accepted recommendation
63% still using after 3 years37% discontinued because they regained
functional, natural speechAll used letter-by-letter spelling, except 1
who used icons and drawings. His was injured as a child before becoming literate.
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Communicative FunctionsCommunicative Functions
Function High Tech Low Tech
Story Telling 77% 40%
Writing 62% 40%
In-depth Information 62% 60%
Telephone 62% ----
Quick Needs 100% 100%
Detailed Needs 85% 40%
Conversation 13% 80%
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Supplemented SpeechSupplemented Speech
Alphabet Supplementation: Identify the first letter of each word as it is spoken.
Topic Supplementation: Identify the topic of a message before it is spoken.
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Alphabet + Topic BoardAlphabet + Topic BoardSmall Talk
FamilyFamily
Personal
Transportation
Trips
Weather
Shopping
ChurchFood
Sports
Start over
Health
A B C D E F G
H I J K L M N O
P Q R S T U V
W X Y Z
No
Yes
Please repeat words
Point to first letter
Will spell words
Schedule
Wait
Don’t know
Maybe
Forget it
Please stop
Not finished
Not done
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Supplemented Speech: TBISupplemented Speech: TBIBeukelman, Fager, Ullman, Hanson, Logemann, (2002).
0
10
20
30
40
50
60
70
80
90
100
1 2 3 4 5 6 7 8
HabitualAlphaTopic
Speakers (N = 8)
Sentence
Intelligibility
(%)
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TBI: Future DirectionsTBI: Future Directions
Current acceptance and use higher than reports in the 1987
Reduce cognitive load--to reduce reliance on letter-by-letter spelling
Supporting facilitator learningSupporting the use of residual speech
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Brainstem Impairment: Brainstem Impairment: DemographicsDemographics
0 - 25% recover functional speech (depending on study) (Katz, 1992; Culp & Ladtkow, 1992; Soderholm, Meinander, & Alaranta, 2001)
4 Clinical ProfilesMotor impairment--but not Locked-in
SyndromeLIS, but transitioning to brainstem motor
involvement Chronic LISTop-of-Basilar Syndrome
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Brainstem: AAC Acceptance Brainstem: AAC Acceptance and Useand Use
3 Published Reports of Groups of Individuals (Katz, et.al., 1992; Culp and Ladkow,1992; Soderholm, Meinander,
& Alaranta, 2001) Use both high and low tech AACOf high tech AAC, approximately half direct
selection and half scanning.An undocumented group remains “Locked-in”
using eye-gaze and signals (dependent scanning)
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LIS: Restoring LIS: Restoring Head MovementHead Movement
Safe Laser Project (Fager et al, 2006)
6 participants Initially, all communication with eye
movementsAfter intervention,
3 developed sufficient head control to access AAC technology
2 continue motor learning intervention1 discontinued--health and psychological issues
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Future DirectionsFuture Directions
Motor learning to restore head movementReceived funding for 15 LIS participants
Currently recruiting participants to begin in about 6 to 12 months.
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Future Directions ContinuedFuture Directions Continued
Eye tracking technology under less than optimal conditions
AAC systems well-connected to the world
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Severe Chronic AphasiaSevere Chronic Aphasia
Intervention RestorationCompensationCounseling
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Aphasia: DemographicsAphasia: Demographics
Limited information about potential AAC use
Limited information about actual AAC useLimited information of length and type of
AAC use
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Aphasia: AAC Acceptance Aphasia: AAC Acceptance and Useand Use
Long history of low tech AAC use (Summarized by
Garret & Lasker, 2005)
Communication books and boardsDrawingHandwritingPhotographyRemnant books
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Aphasia: AAC Acceptance Aphasia: AAC Acceptance and Useand Use
High tech AAC use for specific tasks (Summarized by Garret & Lasker, 20056).
Answering phoneCalling for helpOrdering in restaurants and storesGiving speechesSaying prayersEngaging in scripted conversations
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Aphasia: AAC Acceptance Aphasia: AAC Acceptance and Useand Use
High technology to support language restoration interventions (computer supported interventions--with AAC potential)LingraphicaTalking Screen
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Future DirectionsFuture Directions
AAC strategies to support common interactions dealing with wide range of topics, narratives, and experiencesVisuo-spatial residual abilitySupport message co-constructionPersonalized
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Visual Scene DisplayVisual Scene Display
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Future DirectionsFuture Directions
Promoting acceptance and use by persons with aphasia and families’
Education of clinicians to integrate traditional therapy, low tech AAC and high tech AAC
Transitioning of AAC support across social settings (rehab, home, assisted living, long-term care)
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Primary Progressive Aphasia: Primary Progressive Aphasia: DemographicsDemographics
Gradual progression of language impairment in the bases of more widespread cognitive deterioration of at least two years.
Mean age of onset: 60.5 yearsRatio men to women: 2 to 1
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PPA: AAC UsePPA: AAC Use
Limited number of case reports involving low tech AAC options
3 stage intervention plan described by (Rogers, King, & Alarcon, 2000, 2006)
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PPA: Future DirectionsPPA: Future Directions
Documentation of more individual reports of AAC decision-making and use
Document AAC impact Document impact of PPA progression on
AAC strategy useBetter documentation of social impact of
PPA (what are needs, in what contexts, with what type of listeners)
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Dementia: DemographicsDementia: Demographics
Acquired, chronic, cognitive impairment that involves a variety of domains.
Population is projected to grow considerably in next years (4 million in 2006 increasing to 14 million in 2050)
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Dementia: AAC UseDementia: AAC Use
Interventions involving low technology AAC and memory support are increasing with a several ongoing research about the impact (Bourgeois, Bayles, Tamada, Fried-Oken)
Technical interventions to support cognitive limitations are immerging, however, research about impact is rather limited---but beginning (Fried-Oken & Rowland; Bodine and colleagues).
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Underserved GroupsUnderserved Groups
Parkinson’s diseaseHuntington’s diseaseMultiple sclerosisMyasthenia gravis
Ongoing clinical interventions are occurringPublished reports limited primarily to
individual reportsFuture needs: All types of research and
intervention reports
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Overall ThemesOverall Themes
Overall summary of future needs for persons with acquired complex communication needs due to neurological conditions
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Acceptance and Use: Acceptance and Use: Compared to a Decade AgoCompared to a Decade Ago
Level of AAC acceptance and use across population groups is inconsistent Use and acceptance increased; much more
completely documented for those with ALS and TBI, than other groups
Effectiveness of AAC increasing; beginning to be documented for aphasia, brainstem impairment, and dementia
Little change for those with PD, HD, MS, and myasthenia gravis
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Changing Medical and Changing Medical and Personal Care ManagementPersonal Care Management
Impact on AAC Needs to be documentedTBI--Reduced damage due to brain swellingAphasia--Stroke medicationsALS--Ventilation optionsDementia -- Emerging medical treatments
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AAC Decision-making Related AAC Decision-making Related to Social and Care Contextsto Social and Care Contexts
Coordination of AAC services as one transitions among a series of living settings (No agency like public schools)
Services in Underserved SettingsHospice settings ICULong-term care
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Continuing to Reduce Continuing to Reduce Barriers of extensive Barriers of extensive
Instruction or New LearningInstruction or New LearningPerson who relies on AACAAC facilitatorsCommunication partnersCare providersReduced complexity of AAC optionsJust-in-time instruction-built into AAC
devices
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AAC Technology that Does AAC Technology that Does not Require “Optimal” not Require “Optimal”
Conditions to be EffectiveConditions to be EffectiveLightingPosition and PostureTime of day--FatigueMedication Cycle
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Alternative Access StrategiesAlternative Access Strategies
Options for traditional scanning for those who cannot direct select
Use of residual natural speechSupport for message co-constructionMultiple access options for technology
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Using AAC to Connect with Using AAC to Connect with the Worldthe World
InternetE-mailPhoneSpeech output: communication in adverse
(noisy) conditions, communication with elderly (hearing impaired, cognitively impaired) communication partners
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Information ResourcesInformation Resources
http://www.aac-rerc.com AAC-RERC Webcasts AAC-RERC Funding
http://aac.unl.edu Barkley AAC Website (University of Nebraska-
Lincoln)