AAC DecisionMaking in Chronic and Progressive Aphasia

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AAC Decision-Making in Chronic and Progressive
Aphasia

• Lasker, J., King, J., Fox, L., Alarcon, N.,
  Garrett, K. (2006, November). Presentation at the
  American Speech-Language-Hearing Convention,
  Miami, FL.

2
Motivators

• adults with acquired communication disorders with
  acute, chronic and degenerative medical
  conditions
• chapters on chronic aphasia and PPA
• Beukelman, D. R., Garrett, K. L., Yorkston, K.
  M., (Eds.),
• (in press), Augmentative communication
  strategies for adults with acute or chronic
  medical conditions.
• help everyday clinicians incorporate AAC
  approaches
• similarities and differences between chronic and
  progressive aphasia

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Objectives

• review of AAC-Aphasia classification system
• needs assessment process
• case examples to provide specifics
• assessment
• decision-making
• intervention
• outcomes
• communication partner involvement

4
Comparison
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Comparison
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Classification

• observe people with aphasia during conversation
  and strategy trials
• sort them into different groups
• purpose?
• to avoid frustration and inappropriate use of
  technology/strategies

(Garrett Lasker, 2005)
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Needs Assessment

• What would you like to be doing that youre not
  doing?
• comparison to pre-disease self
• multiple informants
• conducted multiple times? ongoing?
• needs/wants sometimes easier to identify than
  social role fulfillment maintenance
• clinician provides examples
• encourage imagined situations

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Tools for Needs Assessment

• topic lists
• on-line vocabulary
• (http//aac.unl.edu)
• Aphasia Communication Needs worksheet
• (Garrett Beukelman, 1997)
• Social Networks Communication Inventory
• (Blackstone Hunt-Berg, 2003)
• sorting/prioritizing protocol
• (Fox, Sohlberg, Fried-Oken, 2001)

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5 Assessment Questions

• unaided strategies
• ?
• partner- dependent strategies
• ?
• external stored information
• ?
• stored messages on device
• ?
• formulate/generate messages with device

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Colleens Story Case Study of an Independent
Communicator

• Severe Brocas aphasia
• Apraxia of speech
• Right-sided hemiplegia

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Colleen is the Center of a Large Social Circle

• Husband Bob
• Primary caregiver
• They collaborate on all decisions
• Two adult daughters
• Tell stories, chat.
• Two granddaughters
• Tell stories, play games.
• Friends in an aphasia support group.

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Colleen uses a Hierarchy of Unaided Methods

• Stereotypy
• (na na na)
• prosody
• facial expression
• Gesture

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Colleen Uses External Aids

• Generates ideas
• Independently searches stored messages
• Uses writing and drawing to generate messages
• Switches modes appropriately
• Pictures and words in communication book
• Written words
• Drawing
• Maps,
• Photo albums
• Some needs not met

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What are Colleens unmet communication needs?

• Sort topics of interest to peers
• Family
• Travel
• Shopping
• Sort specific needs
• Basic Needs (Bob)
• Stories (Colleen)

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Question 2 Does Colleen access messages stored
in a SGD?

• Virtual System Trial C-Speak Aphasia screening
  test (Speaking Dynamically Pro)

• Identify and locate symbols organized by semantic
  category.
• Read text in a size 12 font
• Use a mouse to click, drag, erase, and
  independently navigate through levels

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Question 3 Does Colleen generate novel
communicative messages?

• Using photographs
• Using symbols
• Using letters words
• Using a SGD she constructs sentences using
  symbols from different pages.
• Generates written words using an onscreen
  keyboard word prediction.

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Question 4 Which SGD is right for Colleen?

• Appropriate storage and retrieval modes
• Text PCS symbols
• Text photographs
• Words
• Letters
• Reasonably portable
• Local support
• Successful system trials
• Funded through Medicare

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Treatment Goal 1 Identify program basic needs
vocabulary

• Steps
• Colleen kept a weekly inventory
• Bob and Colleen answered a day in the life
  questions.
• Colleen practiced using basic need vocabulary.
• Bob and Colleen tracked use at home
• Colleen learned to program

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Treatment Goal Program and use SGD for story
telling

• Steps
• Used family photo albums to identify important
  events
• Daughters supplemented
• Taught Colleen to respond to questions about
  family events
• We gave her feedback about what we had learned
  about her
• Colleen started to initiate telling new stories.

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Outcomes

• Successful use of narrative in clinic with
  select partners outside clinic
• Successful use of vocabulary at mealtime with
  Bob
• Problems with access, and Bobs difficulty
  understanding her messages

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Treatment Goal 3 Train Bob to ask appropriate
open questions
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Outcome

• In progress

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Ongoing Issues and Challenges

• Although Colleen is an independent communicator,
  she doesnt communicate entirely independently
• As one part of a family system
• She is dependent on the motivation and the
  adaptability of the rest of the system for
  success

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Case 3 Fluent Aphasia and Augmented Input
AAC Decision-Making in Chronic and Progressive
Aphasia Seminar (10472) J. Lasker, J. King, L.
Fox, N. Alarcon, K. Garrett

• Kathryn L. Garrett, Ph.D.
• Duquesne University
• Pittsburgh, PA
• ASHA 2006 -- Miami

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The Clinical Problem

• People with Fluent Aphasia/Wernickes Aphasia
  syndrome are historically difficult to manage
  therapeutically
• Comprehension problems can be profound
• Jargon interferes with expressive communication
• No direct pathways to increase speech
  intelligibility (i.e., repetition unsuccessful)
• Poor self monitoring/reduced awareness
• Difficulty understanding that external (symbol
  storage) AAC strategies can substitute for spoken
  communication

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• Impairments lead to
• Confusion
• Dependence on others to direct their daily
  schedule
• Frustration
• No viable means of communicating basic needs
• No means of engaging in social interaction
• Misdiagnoses
• Inappropriate discharge plans
• Family frustration and sadness

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Wernickes Aphasia Syndrome - neuroanatomic
correlates
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The Case of MM
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Demographics

• 86 year-old retired mechanical engineer
• Married with 2 adult children
• Ischemic left CVA at age 83
• Initial diagnosis -- Global aphasia
• Confused and minimally responsive -- 1st month
• Medically fragile - 3 months
• Poor respiratory status
• Moderate-to-severe dysphagia/G-tube

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Therapy History

• Subacute therapy for 2 mos
• Home health therapy for 1 month
• Traditional stimulation approach communicative
  drawing (limited reports)
• Referred to Duquesne University SLP Clinic by a
  local neurologist at 1 year PO

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Assessment Issues and Procedures

• Needs/Participation Assessment Interview
• Significantly reduced social networks,
  activities, and life roles
• Capabilities Assessment
• Formal Aphasia Tests -- AQ 11.0
• Vision Screening -- no field cut
• Hearing Screening -- 50 dB/hi freq
• Informal Conversation/Observation of Family
  Interactions
• No strategies
• Frequent Breakdowns
• Caregiver roles only
• Frustration

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AAC-Aphasia Diagnostic Questions

• 1. Unaided Modalities
• Does the person with aphasia use strategies other
  than natural speech (such as writing, gesture, or
  drawing) to augment or substitute for ineffective
  spoken messages?
• If they do not, can they be taught to do so?

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Answers

• Yes.
• Pantomime and gestures were stimulable during
  initial sessions (given visual models and
  pictures)
• In grouptx (contextual activities), MM produced
  communicative gestures with prompts
• Some generalization to home environment
• Pointing
• Showing items/objects
• Guiding communication partner (wife) to
  referential item
• Pantomime
• BUT
• Limited retrieval of symbolic gestures to
  communicate ideas
• Volitional use of abstract symbols is the
  defining feature of aphasia

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• 2. Partner Supported Techniques
• Does the person with aphasia use
  partner-supported communication strategies, such
  as Augmented Input and the Written Choice
  Conversation Strategy (Garrett Beukelman,
  1998)? If they do not, can they be taught to do
  so?

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Answers

• Yes.
• Expressive Strategies
• Tagged yes-no questions and prompts to produce
  verbal and gestural yes/no
• Written Conversational Choices
• Receptive Strategies
• Partner-generated Augmented Input

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Augmented Input(Garrett Lasker, 2005)

• Any visual strategy, employed by the
  communication partner, that increases the message
  comprehension of the communicator with aphasia
• Written key words
• Gestures
• Directional/Deictic
• Iconic/symbolic
• Referential graphics
• Maps
• Pictures
• Objects

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Implementation

• Teach partners to
• Observe communicator for receptive breakdowns
• Provide augmented input to resolve breakdown as
  needed
• Intermittently
• Continuously
• Collect materials needed
• Notebooks and pens
• Referential items

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MMs Tx Implementation

• Increased attentiveness, participation, and
  response appropriateness during group tx with
  Augmented Input
• Initially, continuous written key word input
• Frequently supplemented with gestural and graphic
  materials

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Recommendations

• Encouraged MMs spouse to implement the strategy
  at home
• Expressed an interest
• Technique was modeled
• Formal instruction delivered on multiple
  occasions
• Coaching and practice - multiple occasions
• Initial Outcome
• Confusion regarding its purpose (wanted him to
  say the words)
• Intrapersonal barrier (Acceptance?)
• Did not buy tablets

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Phase II - The End Run

• MMs Spouse - Medical Emergency
• Family in town
• Frequent Tx observations
• Immediate acceptance of strategies
• Requests to implement strategy at home
• Ganging up
• Bought 5 tablets and pens
• Placed them in all rooms of MMs residence
• Used strategy at every opportunity
• Encouraged spouse to use it as well

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Outcomes - Phase II

• Ethnographic Interview
• Videotaped
• 3 Participants
• MM
• Wife of 63 years -- Sally
• Daughter -- SLP and Rehab Director at an Acute
  Care Hospital in Boston
• Participant Observer (kg)

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3 Video clips

• 1. KG modeling Augmented Input
• Topic -- resuming their winter visits to Florida
• Swimming suits
• 2. Interview with Daughter
• 3. On with life!

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Conclusions

• Augmented input changed MMs ability to
  participate in daily communication with family
• Increased orientation
• Less frustration for all family members
• Easy to implement (at a technical level)
• Recommend use for acute patients and outpatients
• Attitudinal factors are relevant
• Future research -- Measurement of message
  comprehension in response to augmented input

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Primary Progressive Aphasia

• A clinical syndrome, an atypical dementia
• Characterized by a degeneration of language
  function for a period of at least 2 years
• Cognitive functions are preserved until the late
  stager stages of the disease
• Duffy, 2004 McNeil Duffy, 2001 Mesulam, 1982,
  2003 Rogers, 2004

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Irene

• 60 years of age at time of diagnosis
• 3 years prior to her diagnosis she began
  experiencing word-finding difficulty
• Recent difficulty with reading comprehension
• Her verbal expression was telegraphic and
  agrammatic
• She expressed herself with speech and writing key
  words in a small notebook

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Medical Diagnosis

• 3 years post onset of communication symptoms
• MRI revealed atrophy of left temporal pole and
  perisylvian cortex
• 95tile on the Ravens Coloured Matrices Test

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Social History

• Irene was married with 3 grown children
• She worked as a sales clerk at a local department
  store and retired early due to her communication
  difficulties
• She was independent in all ADLs

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Communication Assessment

• Irenes neurologist referred her for
  speech-language services
• Irene participated in a comprehensive
  communication assessment

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Assessment Components

• Background information Case history
• Strengths Capabilities
• BDAE mild receptive and moderate-severe
  expressive aphasia (non-fluent)
• RCBA-2 OK at word level, functional subtest,
  difficulty with sentences
• CLQT WNL for attention, memory, executive
  functions, visuospatial skills
• Discourse analysis see example
• Drawing assessment see example
• Oral mechanism examination WFL
• Hearing screening WFL

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Discourse Analysis
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Drawing Assessment
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• Communication Needs interview
• Determine past, current and future
• Communication activities (e.g., talking on the
  telephone)
• Communication partners (e.g., her daughter who
  lived in Phoenix)
• Communication environments (e.g., local café and
  mall)

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• Communication strategies
• Self generated writing in notebook, use of
  remnants (e.g., pocket-sized calendar filled with
  paper receipts, bills, correspondence)
• Potential ???

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Early Stage Intervention Plan

• Goal Proactive management to keep Irene in the
  game of life (Rogers Alarcon,1998)
• Tap into residuals strengths/skills writing
  often more preserved than verbal expression
• Identify potential communication strategies,
  provide intervention
• Irene talking photo album, communication
  notebook, drawing
• Partner education and training

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Message Banking

• A method of preserving one or more special
  communicative messages to be used at a later time
  when the person with PPA is no longer
  communicating independently

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Talking Photo Album Attainment Company
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Communication Notebook
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PPA Case StudyMiddle to Late Stages
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Case Background

• Walter, a gentleman with a diagnosis of PPA
• Died at the age of 84 years
• We had the privilege to work with him and his
  family intermittently across 8 years
• Retired engineer, married, and living at home
  with his spouse, Judy, and their dog, up until
  the last year and a half of his life
• Three adult children living close by, but each
  was working full-time
• Following his retirement he had been very active
  in a cultural community mens group was an avid
  walker with his daughter, and his dog was a
  remarkable handyman around the home and had had
  a good social network of friends

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Case Background

• Received a dx of PPA by his neurologist at age 76
• His neurologist was aware of our philosophy of
  keeping individuals in the game of life and
  referred this couple to our clinic
• Anecdotal reports from patient and family
• for approximately 4-5 years prior to the
  diagnosis, he had a history of increasing
  difficulty with word-finding, and then gradual
  signs of difficulty in writing, and also in
  auditory comprehension
• Thus, the presentation of clinical symptoms may
  have presented over a 12-13 yr period until his
  death

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Proactive Management

• Minimizing activity limitations and participation
  restrictions by maintaining communication
  competence as speech and language deteriorates
• Anticipating the need for augmentative and
  alternative communication in advance so that the
  person with PPA can direct the content and
  application as much as possible
• Training communication partners early in the
  process so that they can support communication
  through alternative strategies and means, and
  maintain personal connection as language
  deteriorates

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Supportive BehaviorsKeys to building successful
communication

• Communication Partner as Speaker
• Using Augmentative and Alternative Communication
• Using Prosody and Nonverbal Body Language
• Facilitating Message Comprehension
• Commenting
• Initiating and Maintaining Topic
• Communication Partner as Facilitator
• Listening and Attending
• Requesting Clarification
• Cueing
• Providing Opportunities to Participate in Social
  Interaction

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Proactive Management
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Middle Stage

• Intervention focusing on adapting tools and
  strategies to successfully meet communication
  needs in lieu of communication changes
• Adapting, anticipating, supporting a shifting
  ground
• Practicing and applying alternative means of
  communication challenges
• Providing hands-on how to information for the
  person with PPA and their Communication Partners
• Incorporating relevant supported communication
  behaviors
• Assessing and monitoring cognitive status
• Cognitive screening and partner observations and
  reports
• Educating and counseling the person with PPA and
  his or her family
• To monitor personal safety and preserve daily
  routines
• To increase partner awareness and plan for the
  future
• To expand the support base if possible

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Middle Stage Short Term Objectives

• Strengthening Walters and Judys ability to
  efficiently and effectively use the resources in
  their communication notebook
• Established a hierarchy of cueing strategies for
  search retrieval
• Aiding Walter in the establishment of daily
  journal entries in his communication notebook
• Identified key words to talk from rather than
  relying on his ability to spontaneously access
  words
• Employing drawing as a way to convey a recent
  event
• Increasing Judys use of supportive cues
• Using writing and gesturing, and broad vs.
  specific questions when she is the speaker AND
  the listener
• Introducing the concept of being the model and
  interpreter with other partners
• Monitoring additions and changes to the
  communication notebook
• Arranging a family/partner meetings
• Sharing insights, observations, and opening
  discussion for the future
• Broaching challenges ahead

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Late Stage

• Intervention focusing heavily on continued
  partner education
• Defining language, speech cognitive behaviors
• Continued revisions and adaptations of
  communication tools and strategies
• Finding signs of successful connection
• In the presence of severe communication deficits,
  helping to maintain personal connectedness and
  participation in desired communication activities
• Finding alternative ways for personal fulfillment
• Providing consultation as situations arise, and
  serving as an advocate
• Knowing community resources for the person with
  PPA and the spouse assisting to lay out options
  for care always referring when appropriate

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Reflecting on Professional Challenges

• Shifting our thinking to global decline and
  adapting tools
• how bad will it get? finding avenues to
  connect
• Partner willingness to ask for help when we know
  that person is over-taxed
• I can do it myself well be ok the kids
  are so busy
• Listening, and then responding to safety issues
  as incidences are reported or inadvertently
  revealed
• keeps bringing the wrong things upstairs
• wet clothes in the dryer or washing windows
  with soft scrub
• hes been coughing more lately

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In the long run

• Keeping the person with PPA in the game
• Preserving their ability to maintain that human
  connectedness in their personal relationships
• Supporting partners and families in navigating
  through the inevitable decline
• Advocating for awareness of our role and our
  responsibilities for these individuals

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References

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