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  • 1. 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
  • 2. 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
  • 3. 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.
  • 4. ALS: AAC Acceptance & Use Nebraska 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)
  • 5. ALS: AAC Referral
    • Delayed referral for AAC assessment remains a primary intervention issue.
  • 6. Intelligibility X Months Post Diagnosis
  • 7. 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
  • 8. ALS: Support
    • AAC Technology Instruction
      • Persons with ALS--3.5 hours
      • AAC facilitators--2 hours
    • AAC Facilitators
      • Typically family members
      • Non-technical backgrounds
  • 9. 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
  • 10. ALS: AAC Technology Donation Patterns
  • 11. ALS: Future Directions
    • Access options (transitions)
    • Speech synthesis (for older partners)
    • Access to other technologies
    • Facilitator instruction
  • 12. 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).
  • 13. 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
  • 14. 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.
  • 15. 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%
  • 16. 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.
  • 17. Alphabet + Topic Board
    • Family
    Small Talk Family Personal Transportation Trips Weather Shopping Church Food 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
  • 18. Supplemented Speech: TBI Beukelman, Fager, Ullman, Hanson, Logemann, (2002). Speakers (N = 8) Sentence Intelligibility (%)
  • 19. 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
  • 20. 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
  • 21. 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)
  • 22. 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
  • 23. 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.
  • 24. Future Directions Continued
    • Eye tracking technology under less than optimal conditions
    • AAC systems well-connected to the world
  • 25. Severe Chronic Aphasia
    • Intervention
      • Restoration
      • Compensation
      • Counseling
  • 26. Aphasia: Demographics
    • Limited information about potential AAC use
    • Limited information about actual AAC use
    • Limited information of length and type of AAC use
  • 27. 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
  • 28. 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
  • 29. Aphasia: AAC Acceptance and Use
    • High technology to support language restoration interventions (computer supported interventions--with AAC potential)
      • Lingraphica
      • Talking Screen
  • 30. 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
  • 31. Visual Scene Display
  • 32. 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)
  • 33. 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
  • 34. PPA: AAC Use
    • Limited number of case reports involving low tech AAC options
    • 3 stage intervention plan described by (Rogers, King, & Alarcon, 2000, 2006)
  • 35. 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)
  • 36. 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)
  • 37. 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).
  • 38. 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
  • 39. Overall Themes
    • Overall summary of future needs for persons with acquired complex communication needs due to neurological conditions
  • 40. 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
  • 41. 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
  • 42. 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
  • 43. 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
  • 44. AAC Technology that Does not Require “Optimal” Conditions to be Effective
    • Lighting
    • Position and Posture
    • Time of day--Fatigue
    • Medication Cycle
  • 45. 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
  • 46. 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
  • 47. Information Resources
    • http://www. aac-rerc .com
            • AAC-RERC Webcasts
            • AAC-RERC Funding
    • http://aac.unl.edu
            • Barkley AAC Website (University of Nebraska-Lincoln)