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

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 www.aac-rerc.com

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 & 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)

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 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

18. Supplemented Speech: TBIBeukelman, Fager, Ullman, Hanson, Logemann, (2002). Sentence Intelligibility (%) Speakers (N = 8)

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)