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  1. 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. 2. Purpose <ul><li>To review “AAC-State of the Science” for persons with acquired conditions that result in complex communication needs. </li></ul><ul><ul><li>Amyotrophic lateral sclerosis </li></ul></ul><ul><ul><li>Brainstem impairment </li></ul></ul><ul><ul><li>Traumatic brain injury </li></ul></ul><ul><ul><li>Chronic, severe aphasia </li></ul></ul><ul><ul><li>Dementia </li></ul></ul><ul><ul><li>Parkinson disease </li></ul></ul><ul><ul><li>Multiple sclerosis </li></ul></ul><ul><ul><li>Myasthenia gravis </li></ul></ul><ul><ul><li>Huntington disease </li></ul></ul>
  3. 3. ALS: Demographics <ul><li>Age of onset--20s to 60s </li></ul><ul><li>Initial spinal symptoms live 5 times longer than those with initial bulbar symptoms </li></ul><ul><li>Life expectance is much longer if one opt s for invasive ventilation </li></ul><ul><li>Artificial nutrition increases life expectancy somewhat, increases quality of life. </li></ul>
  4. 4. ALS: AAC Acceptance & Use Nebraska ALS Database (N = 140) (Ball , Beukelman, Pattee & colleagues (2000, 2001, 2002, 2004, 2005, 2006) <ul><li>95% unable to speak prior to death </li></ul><ul><li>96% accept AAC (6% delay; 4% reject), similar for men and women </li></ul><ul><li>All, who accept, use until within a month or two of death </li></ul><ul><li>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) </li></ul><ul><li>Communication functions documented (Mathy,Yorkston, & Gutmann, 2000) </li></ul>
  5. 5. ALS: AAC Referral <ul><li>Delayed referral for AAC assessment remains a primary intervention issue. </li></ul>
  6. 6. Intelligibility X Months Post Diagnosis
  7. 7. One Person’s Experience <ul><li>Sept.: 97% intelligible, rate 90 wpm </li></ul><ul><li>Nov.: 75% intelligible, rate 68 wpm </li></ul><ul><li>Feb.: 33% intelligible, rate 52 wpm </li></ul><ul><li>May.: 6.8% intelligible, rate 36 wpm </li></ul>
  8. 8. ALS: Support <ul><li>AAC Technology Instruction </li></ul><ul><ul><li>Persons with ALS--3.5 hours </li></ul></ul><ul><ul><li>AAC facilitators--2 hours </li></ul></ul><ul><li>AAC Facilitators </li></ul><ul><ul><li>Typically family members </li></ul></ul><ul><ul><li>Non-technical backgrounds </li></ul></ul>
  9. 9. AAC Facilitators <ul><li>Wife 32% </li></ul><ul><li>Daughter 28 </li></ul><ul><li>Husband 9 </li></ul><ul><li>Self 7 </li></ul><ul><li>Friend 4 </li></ul><ul><li>Nursing 4 </li></ul><ul><li>Daughter-in-law 3 </li></ul><ul><li>Son 3 </li></ul><ul><li>SLP 3 </li></ul><ul><li>Brother 2 </li></ul><ul><li>Granddaughter 2 </li></ul><ul><li>Grandson 2 </li></ul><ul><li>Mother 1 </li></ul><ul><li>Sister 1 </li></ul>
  10. 10. ALS: AAC Technology Donation Patterns
  11. 11. ALS: Future Directions <ul><li>Access options (transitions) </li></ul><ul><li>Speech synthesis (for older partners) </li></ul><ul><li>Access to other technologies </li></ul><ul><li>Facilitator instruction </li></ul>
  12. 12. Traumatic Brain Injury <ul><li>Patterns of recovery of natural speech </li></ul><ul><ul><li>55-59% recover functional speech during Rancho levels 5 and 6--(middle stage) (Ladtkow & Culp, 1992; Dongilli, Hakel, & Beukelman, 1992) </li></ul></ul><ul><li>Current medical interventions reducing percentage and type of persons with complex communication needs (Research Needed). </li></ul>
  13. 13. TBI: AAC Acceptance and Use <ul><li>Most recent review (Fager, et al., 2006) </li></ul><ul><ul><li>94% accepted high tech AAC recommendation </li></ul></ul><ul><ul><li>81% continued to use after 5 years </li></ul></ul><ul><ul><li>87% letter-by-letter spelling </li></ul></ul><ul><ul><li>13% symbols, icons, and drawings </li></ul></ul><ul><ul><li>6% did not receive AAC device--funding issues </li></ul></ul><ul><ul><li>12% discontinued use--AAC facilitator issues </li></ul></ul>
  14. 14. TBI: AAC Acceptance and Use <ul><li>100% who used low tech AAC accepted recommendation </li></ul><ul><li>63% still using after 3 years </li></ul><ul><li>37% discontinued because they regained functional, natural speech </li></ul><ul><li>All used letter-by-letter spelling, except 1 who used icons and drawings. His was injured as a child before becoming literate. </li></ul>
  15. 15. Communicative Functions <ul><ul><ul><li>Function High Tech Low Tech </li></ul></ul></ul><ul><ul><ul><li>Story Telling 77% 40% </li></ul></ul></ul><ul><ul><ul><li>Writing 62% 40% </li></ul></ul></ul><ul><ul><ul><li>In-depth Information 62% 60% </li></ul></ul></ul><ul><ul><ul><li>Telephone 62% ---- </li></ul></ul></ul><ul><ul><ul><li>Quick Needs 100% 100% </li></ul></ul></ul><ul><ul><ul><li>Detailed Needs 85% 40% </li></ul></ul></ul><ul><ul><ul><li>Conversation 13% 80% </li></ul></ul></ul>
  16. 16. Supplemented Speech <ul><li>Alphabet Supplementation: Identify the first letter of each word as it is spoken. </li></ul><ul><li>Topic Supplementation: Identify the topic of a message before it is spoken. </li></ul>
  17. 17. Alphabet + Topic Board <ul><li>Family </li></ul>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. 18. Supplemented Speech: TBI Beukelman, Fager, Ullman, Hanson, Logemann, (2002). Speakers (N = 8) Sentence Intelligibility (%)
  19. 19. TBI: Future Directions <ul><li>Current acceptance and use higher than reports in the 1987 </li></ul><ul><li>Reduce cognitive load--to reduce reliance on letter-by-letter spelling </li></ul><ul><li>Supporting facilitator learning </li></ul><ul><li>Supporting the use of residual speech </li></ul>
  20. 20. Brainstem Impairment: Demographics <ul><li>0 - 25% recover functional speech (depending on study) (Katz, 1992; Culp & Ladtkow, 1992; Soderholm, Meinander, & Alaranta, 2001) </li></ul><ul><li>4 Clinical Profiles </li></ul><ul><ul><li>Motor impairment--but not Locked-in Syndrome </li></ul></ul><ul><ul><li>LIS, but transitioning to brainstem motor involvement </li></ul></ul><ul><ul><li>Chronic LIS </li></ul></ul><ul><ul><li>Top-of-Basilar Syndrome </li></ul></ul>
  21. 21. Brainstem: AAC Acceptance and Use <ul><li>3 Published Reports of Groups of Individuals ( Katz,, 1992; Culp and Ladkow,1992; Soderholm, Meinander, & Alaranta, 2001) </li></ul><ul><ul><li>Use both high and low tech AAC </li></ul></ul><ul><ul><li>Of high tech AAC, approximately half direct selection and half scanning. </li></ul></ul><ul><ul><li>An undocumented group remains “Locked-in” using eye-gaze and signals (dependent scanning) </li></ul></ul>
  22. 22. LIS: Restoring Head Movement <ul><li>Safe Laser Project (Fager et al, 2006) </li></ul><ul><ul><li>6 participants </li></ul></ul><ul><ul><li>Initially, all communication with eye movements </li></ul></ul><ul><ul><li>After intervention, </li></ul></ul><ul><ul><ul><li>3 developed sufficient head control to access AAC technology </li></ul></ul></ul><ul><ul><ul><li>2 continue motor learning intervention </li></ul></ul></ul><ul><ul><ul><li>1 discontinued--health and psychological issues </li></ul></ul></ul>
  23. 23. Future Directions <ul><li>Motor learning to restore head movement </li></ul><ul><ul><li>Received funding for 15 LIS participants </li></ul></ul><ul><ul><li>Currently recruiting participants to begin in about 6 to 12 months. </li></ul></ul>
  24. 24. Future Directions Continued <ul><li>Eye tracking technology under less than optimal conditions </li></ul><ul><li>AAC systems well-connected to the world </li></ul>
  25. 25. Severe Chronic Aphasia <ul><li>Intervention </li></ul><ul><ul><li>Restoration </li></ul></ul><ul><ul><li>Compensation </li></ul></ul><ul><ul><li>Counseling </li></ul></ul>
  26. 26. Aphasia: Demographics <ul><li>Limited information about potential AAC use </li></ul><ul><li>Limited information about actual AAC use </li></ul><ul><li>Limited information of length and type of AAC use </li></ul>
  27. 27. Aphasia: AAC Acceptance and Use <ul><li>Long history of low tech AAC use (Summarized by Garret & Lasker, 2005) </li></ul><ul><ul><li>Communication books and boards </li></ul></ul><ul><ul><li>Drawing </li></ul></ul><ul><ul><li>Handwriting </li></ul></ul><ul><ul><li>Photography </li></ul></ul><ul><ul><li>Remnant books </li></ul></ul>
  28. 28. Aphasia: AAC Acceptance and Use <ul><li>High tech AAC use for specific tasks (Summarized by Garret & Lasker, 20056). </li></ul><ul><ul><li>Answering phone </li></ul></ul><ul><ul><li>Calling for help </li></ul></ul><ul><ul><li>Ordering in restaurants and stores </li></ul></ul><ul><ul><li>Giving speeches </li></ul></ul><ul><ul><li>Saying prayers </li></ul></ul><ul><ul><li>Engaging in scripted conversations </li></ul></ul>
  29. 29. Aphasia: AAC Acceptance and Use <ul><li>High technology to support language restoration interventions (computer supported interventions--with AAC potential) </li></ul><ul><ul><li>Lingraphica </li></ul></ul><ul><ul><li>Talking Screen </li></ul></ul>
  30. 30. Future Directions <ul><li>AAC strategies to support common interactions dealing with wide range of topics, narratives, and experiences </li></ul><ul><ul><li>Visuo-spatial residual ability </li></ul></ul><ul><ul><li>Support message co-construction </li></ul></ul><ul><ul><li>Personalized </li></ul></ul>
  31. 31. Visual Scene Display
  32. 32. Future Directions <ul><li>Promoting acceptance and use by persons with aphasia and families’ </li></ul><ul><li>Education of clinicians to integrate traditional therapy, low tech AAC and high tech AAC </li></ul><ul><li>Transitioning of AAC support across social settings (rehab, home, assisted living, long-term care) </li></ul>
  33. 33. Primary Progressive Aphasia: Demographics <ul><li>Gradual progression of language impairment in the bases of more widespread cognitive deterioration of at least two years. </li></ul><ul><li>Mean age of onset: 60.5 years </li></ul><ul><li>Ratio men to women: 2 to 1 </li></ul>
  34. 34. PPA: AAC Use <ul><li>Limited number of case reports involving low tech AAC options </li></ul><ul><li>3 stage intervention plan described by (Rogers, King, & Alarcon, 2000, 2006) </li></ul>
  35. 35. PPA: Future Directions <ul><li>Documentation of more individual reports of AAC decision-making and use </li></ul><ul><li>Document AAC impact </li></ul><ul><li>Document impact of PPA progression on AAC strategy use </li></ul><ul><li>Better documentation of social impact of PPA (what are needs, in what contexts, with what type of listeners) </li></ul>
  36. 36. Dementia: Demographics <ul><li>Acquired, chronic, cognitive impairment that involves a variety of domains. </li></ul><ul><li>Population is projected to grow considerably in next years (4 million in 2006 increasing to 14 million in 2050) </li></ul>
  37. 37. Dementia: AAC Use <ul><li>Interventions involving low technology AAC and memory support are increasing with a several ongoing research about the impact (Bourgeois, Bayles, Tamada, Fried-Oken) </li></ul><ul><li>Technical interventions to support cognitive limitations are immerging, however, research about impact is rather limited---but beginning (Fried-Oken & Rowland; Bodine and colleagues). </li></ul>
  38. 38. Underserved Groups <ul><li>Parkinson’s disease </li></ul><ul><li>Huntington’s disease </li></ul><ul><li>Multiple sclerosis </li></ul><ul><li>Myasthenia gravis </li></ul><ul><ul><li>Ongoing clinical interventions are occurring </li></ul></ul><ul><ul><li>Published reports limited primarily to individual reports </li></ul></ul><ul><ul><li>Future needs: All types of research and intervention reports </li></ul></ul>
  39. 39. Overall Themes <ul><li>Overall summary of future needs for persons with acquired complex communication needs due to neurological conditions </li></ul>
  40. 40. Acceptance and Use: Compared to a Decade Ago <ul><li>Level of AAC acceptance and use across population groups is inconsistent </li></ul><ul><ul><li>Use and acceptance increased; much more completely documented for those with ALS and TBI, than other groups </li></ul></ul><ul><ul><li>Effectiveness of AAC increasing; beginning to be documented for aphasia, brainstem impairment, and dementia </li></ul></ul><ul><ul><li>Little change for those with PD, HD, MS, and myasthenia gravis </li></ul></ul>
  41. 41. Changing Medical and Personal Care Management <ul><li>Impact on AAC Needs to be documented </li></ul><ul><ul><li>TBI--Reduced damage due to brain swelling </li></ul></ul><ul><ul><li>Aphasia--Stroke medications </li></ul></ul><ul><ul><li>ALS--Ventilation options </li></ul></ul><ul><ul><li>Dementia -- Emerging medical treatments </li></ul></ul>
  42. 42. AAC Decision-making Related to Social and Care Contexts <ul><li>Coordination of AAC services as one transitions among a series of living settings (No agency like public schools) </li></ul><ul><li>Services in Underserved Settings </li></ul><ul><ul><li>Hospice settings </li></ul></ul><ul><ul><li>ICU </li></ul></ul><ul><ul><li>Long-term care </li></ul></ul>
  43. 43. Continuing to Reduce Barriers of extensive Instruction or New Learning <ul><li>Person who relies on AAC </li></ul><ul><li>AAC facilitators </li></ul><ul><li>Communication partners </li></ul><ul><li>Care providers </li></ul><ul><li>Reduced complexity of AAC options </li></ul><ul><li>Just-in-time instruction-built into AAC devices </li></ul>
  44. 44. AAC Technology that Does not Require “Optimal” Conditions to be Effective <ul><li>Lighting </li></ul><ul><li>Position and Posture </li></ul><ul><li>Time of day--Fatigue </li></ul><ul><li>Medication Cycle </li></ul>
  45. 45. Alternative Access Strategies <ul><li>Options for traditional scanning for those who cannot direct select </li></ul><ul><li>Use of residual natural speech </li></ul><ul><li>Support for message co-construction </li></ul><ul><li>Multiple access options for technology </li></ul>
  46. 46. Using AAC to Connect with the World <ul><li>Internet </li></ul><ul><li>E-mail </li></ul><ul><li>Phone </li></ul><ul><li>Speech output: communication in adverse (noisy) conditions, communication with elderly (hearing impaired, cognitively impaired) communication partners </li></ul>
  47. 47. Information Resources <ul><li>http://www. aac-rerc .com </li></ul><ul><ul><ul><ul><ul><li>AAC-RERC Webcasts </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>AAC-RERC Funding </li></ul></ul></ul></ul></ul><ul><li> </li></ul><ul><ul><ul><ul><ul><li>Barkley AAC Website (University of Nebraska-Lincoln) </li></ul></ul></ul></ul></ul>