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Use of AAC to Enhance Social Participation of Adults with Neurological Conditions. David Beukelman With Susan Fager & Laura Ball 2006 AAC-RERC State of Science Conference. Purpose.

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use of aac to enhance social participation of adults with neurological conditions

Use of AAC to Enhance Social Participation of Adults with Neurological Conditions

David Beukelman

With

Susan Fager & Laura Ball

2006 AAC-RERC State of Science Conference

www.aac-rerc.com

purpose
Purpose
  • 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
als demographics
ALS: Demographics
  • Age of onset--20s to 60s
  • Initial spinal symptoms live 5 times longer than those with initial bulbar symptoms
  • Life expectance is much longer if one opt s for invasive ventilation
  • Artificial nutrition increases life expectancy somewhat, increases quality of life.
slide4
ALS: AAC Acceptance & UseNebraska ALS Database (N = 140) (Ball, 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)
als aac referral
ALS: AAC Referral

Delayed referral for AAC assessment remains a primary intervention issue.

one person s experience
One 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

als support
ALS: Support
  • AAC Technology Instruction
    • Persons with ALS--3.5 hours
    • AAC facilitators--2 hours
  • AAC Facilitators
    • Typically family members
    • Non-technical backgrounds
aac facilitators
AAC 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
als future directions
ALS: Future Directions
  • Access options (transitions)
  • Speech synthesis (for older partners)
  • Access to other technologies
  • Facilitator instruction
traumatic brain injury
Traumatic 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).
tbi aac acceptance and use
TBI: AAC Acceptance and Use
  • Most recent review (Fager, et al., 2006)
    • 94% accepted high tech AAC recommendation
    • 81% continued to use after 5 years
    • 87% letter-by-letter spelling
    • 13% symbols, icons, and drawings
    • 6% did not receive AAC device--funding issues
    • 12% discontinued use--AAC facilitator issues
tbi aac acceptance and use14
TBI: AAC Acceptance and Use
  • 100% who used low tech AAC accepted recommendation
  • 63% still using after 3 years
  • 37% discontinued because they regained functional, natural speech
  • All used letter-by-letter spelling, except 1 who used icons and drawings. His was injured as a child before becoming literate.
communicative functions
Communicative 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%

supplemented speech
Supplemented 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.
alphabet topic board
Alphabet + Topic Board

Small Talk

Food

Church

Health

Schedule

  • Family

Family

Yes

Wait

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

Personal

No

Not done

Transportation

Please stop

Trips

Start over

Not finished

Weather

Forget it

Sports

Will spell words

Please repeat

words

Maybe

Shopping

Point to first letter

Don’t know

supplemented speech tbi beukelman fager ullman hanson logemann 2002
Supplemented Speech: TBIBeukelman, Fager, Ullman, Hanson, Logemann, (2002).

Sentence

Intelligibility

(%)

Speakers (N = 8)

tbi future directions
TBI: 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 learning
  • Supporting the use of residual speech
brainstem impairment demographics
Brainstem Impairment: Demographics
  • 0 - 25% recover functional speech (depending on study) (Katz, 1992; Culp & Ladtkow, 1992; Soderholm, Meinander, & Alaranta, 2001)
  • 4 Clinical Profiles
    • Motor impairment--but not Locked-in Syndrome
    • LIS, but transitioning to brainstem motor involvement
    • Chronic LIS
    • Top-of-Basilar Syndrome
brainstem aac acceptance and use
Brainstem: AAC Acceptance and 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 AAC
    • Of high tech AAC, approximately half direct selection and half scanning.
    • An undocumented group remains “Locked-in” using eye-gaze and signals (dependent scanning)
lis restoring head movement
LIS: Restoring Head Movement
  • Safe Laser Project (Fager et al, 2006)
    • 6 participants
    • Initially, all communication with eye movements
    • After intervention,
      • 3 developed sufficient head control to access AAC technology
      • 2 continue motor learning intervention
      • 1 discontinued--health and psychological issues
future directions
Future Directions
  • Motor learning to restore head movement
    • Received funding for 15 LIS participants
    • Currently recruiting participants to begin in about 6 to 12 months.
future directions continued
Future Directions Continued
  • Eye tracking technology under less than optimal conditions
  • AAC systems well-connected to the world
severe chronic aphasia
Severe Chronic Aphasia
  • Intervention
    • Restoration
    • Compensation
    • Counseling
aphasia demographics
Aphasia: Demographics
  • Limited information about potential AAC use
  • Limited information about actual AAC use
  • Limited information of length and type of AAC use
aphasia aac acceptance and use
Aphasia: AAC Acceptance and Use
  • Long history of low tech AAC use (Summarized by Garret & Lasker, 2005)
    • Communication books and boards
    • Drawing
    • Handwriting
    • Photography
    • Remnant books
aphasia aac acceptance and use28
Aphasia: AAC Acceptance and Use
  • High tech AAC use for specific tasks (Summarized by Garret & Lasker, 20056).
    • Answering phone
    • Calling for help
    • Ordering in restaurants and stores
    • Giving speeches
    • Saying prayers
    • Engaging in scripted conversations
aphasia aac acceptance and use29
Aphasia: AAC Acceptance and Use
  • High technology to support language restoration interventions (computer supported interventions--with AAC potential)
    • Lingraphica
    • Talking Screen
future directions30
Future Directions
  • AAC strategies to support common interactions dealing with wide range of topics, narratives, and experiences
    • Visuo-spatial residual ability
    • Support message co-construction
    • Personalized
future directions32
Future 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)
primary progressive aphasia demographics
Primary Progressive Aphasia: Demographics
  • Gradual progression of language impairment in the bases of more widespread cognitive deterioration of at least two years.
  • Mean age of onset: 60.5 years
  • Ratio men to women: 2 to 1
ppa aac use
PPA: AAC Use
  • Limited number of case reports involving low tech AAC options
  • 3 stage intervention plan described by (Rogers, King, & Alarcon, 2000, 2006)
ppa future directions
PPA: Future Directions
  • Documentation of more individual reports of AAC decision-making and use
  • Document AAC impact
  • Document impact of PPA progression on AAC strategy use
  • Better documentation of social impact of PPA (what are needs, in what contexts, with what type of listeners)
dementia demographics
Dementia: 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)
dementia aac use
Dementia: 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).
underserved groups
Underserved Groups
  • Parkinson’s disease
  • Huntington’s disease
  • Multiple sclerosis
  • Myasthenia gravis
    • Ongoing clinical interventions are occurring
    • Published reports limited primarily to individual reports
    • Future needs: All types of research and intervention reports
overall themes
Overall Themes

Overall summary of future needs for persons with acquired complex communication needs due to neurological conditions

acceptance and use compared to a decade ago
Acceptance and Use: Compared 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
changing medical and personal care management
Changing Medical and Personal Care Management
  • Impact on AAC Needs to be documented
    • TBI--Reduced damage due to brain swelling
    • Aphasia--Stroke medications
    • ALS--Ventilation options
    • Dementia -- Emerging medical treatments
aac decision making related to social and care contexts
AAC Decision-making Related to 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 Settings
    • Hospice settings
    • ICU
    • Long-term care
continuing to reduce barriers of extensive instruction or new learning
Continuing to Reduce Barriers of extensive Instruction or New Learning
  • Person who relies on AAC
  • AAC facilitators
  • Communication partners
  • Care providers
  • Reduced complexity of AAC options
  • Just-in-time instruction-built into AAC devices
aac technology that does not require optimal conditions to be effective
AAC Technology that Does not Require “Optimal” Conditions to be Effective
  • Lighting
  • Position and Posture
  • Time of day--Fatigue
  • Medication Cycle
alternative access strategies
Alternative Access Strategies
  • Options for traditional scanning for those who cannot direct select
  • Use of residual natural speech
  • Support for message co-construction
  • Multiple access options for technology
using aac to connect with the world
Using AAC to Connect with the World
  • Internet
  • E-mail
  • Phone
  • Speech output: communication in adverse (noisy) conditions, communication with elderly (hearing impaired, cognitively impaired) communication partners
information resources
Information Resources
  • http://www.aac-rerc.com
          • AAC-RERC Webcasts
          • AAC-RERC Funding
  • http://aac.unl.edu
          • Barkley AAC Website (University of Nebraska-Lincoln)