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

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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

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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

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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.

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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)

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ALS AAC Referral

• Delayed referral for AAC assessment remains a
  primary intervention issue.

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Intelligibility X Months Post Diagnosis
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One Persons 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 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 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 Donation Patterns
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ALS Future Directions

• Access options (transitions)
• Speech synthesis (for older partners)
• Access to other technologies
• Facilitator instruction

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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).

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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

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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.

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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

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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.

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Alphabet Topic Board
Small Talk
Church
Food
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
Please repeat words
Will spell words
Maybe
Shopping
Point to first letter
Dont know
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Supplemented Speech TBIBeukelman, Fager,
Ullman, Hanson, Logemann, (2002).
Sentence Intelligibility ()
Speakers (N 8)
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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

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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

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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)

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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

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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.

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Future Directions Continued

• Eye tracking technology under less than optimal
  conditions
• AAC systems well-connected to the world

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Severe Chronic Aphasia

• Intervention
• Restoration
• Compensation
• Counseling

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Aphasia Demographics

• Limited information about potential AAC use
• Limited information about actual AAC use
• Limited information of length and type of AAC use

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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

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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

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Aphasia AAC Acceptance and Use

• High technology to support language restoration
  interventions (computer supported
  interventions--with AAC potential)
• Lingraphica
• Talking Screen

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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

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Visual Scene Display
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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)

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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

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PPA 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 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)

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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)

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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).

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Underserved Groups

• Parkinsons disease
• Huntingtons 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

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Overall Themes

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

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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

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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

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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

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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

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AAC Technology that Does not Require Optimal
Conditions to be Effective

• Lighting
• Position and Posture
• Time of day--Fatigue
• Medication Cycle

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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

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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

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Information Resources

• http//www.aac-rerc.com
• AAC-RERC Webcasts
• AAC-RERC Funding
• http//aac.unl.edu
• Barkley AAC Website (University of
  Nebraska-Lincoln)