fsm office for corporate relations - ksha
TRANSCRIPT
9/22/2016
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Becky Khayum, MS, CCC-SLP
MemoryCare Corporation Co-Authors: Darby Morhardt, PhD, LCSW Emily Rogalski, PhD Northwestern University - Cognitive Neurology and Alzheimer’s Disease Center
Toss the Workbooks: Evidence-Based Approaches for
Person-Centered Dementia Interventions
Disclosures: B. Khayum, M.S., CCC-SLP
Relevant Financial Relationships
Owner of a for-profit company, MemoryCare Corporation, which provides therapy services to with dementia. (2010 - present)
Consultant for Communication Bridge research study at the Cognitive Neurology and Alzheimer's Disease Center at the Northwestern Feinberg School of Medicine and receives reimbursement for consultation time and treatment sessions for individuals with PPA. (2013 - present)
Received honoraria from KSHA for this presentation
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Presentation Outline
• Dementia syndromes vs Neuropathology
• Care Pathway Model to care
• Impact of the diagnosis on the family/caregiver
• Psychosocial Interventions
• Speech-Language Pathology Assessment
• Person-Centered Cognitive-Communication Strategies Memory Care Pathway
Language Care Pathway
Visuospatial Care Pathway
Behavioral Care Pathway
• Case Study
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Learner Outcomes
• Describe the Care Pathway Model to interdisciplinary care and how you might apply this in your healthcare setting
• Describe the importance of psychosocial interventions and how you may collaborate with a social worker in your setting to improve quality of life for individuals with dementia
• Describe person-centered assessment and how to identify meaningful goals when developing a plan of care for persons with dementia
• Describe 5 evidence-based approaches for the treatment of dementia and how to integrate personally relevant stimuli into the plan of care
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Holistic Approach to Intervention
A diagnosis of dementia can cause:
•A sense of isolation; social withdrawal
•Decreased participation in meaningful, purposeful activities
•The loss of dignity and sense of self
•The loss of independence and safety
Dementia
• Decline from prior level of functioning in cognition, emotion, and/or behavior
• Progressive worsening over time
• Interferes with independence and daily activities
• There are many causes of dementia
Dementia: An Umbrella Term
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© MemoryCare Corporation. These materials are not to be reproduced or distributed without prior written consent.
Dementia Syndrome vs Neuropathology
• Dementia syndromes are the clinical presentation of symptoms Alzheimer’s dementia – short term memory loss
Primary Progressive Aphasia – language
Behavioral Variant of Frontotemporal Dementia – changes in behavior and personality
Posterior Cortical Atrophy – visual agnosia
• All dementia syndromes are caused by an underlying neuropathology (protein) in the brain Alzheimer’s Disease (AD), FTLD-T, TPD-43
Short term memory
loss
Word finding, understanding speech,writing, and/or reading
difficulties
Visuospatial difficulties;
Visual Hallucinations
Behavioral &
Personality Changes
Your primary
symptoms
Are leading to problems in your daily
life
Repeat questions & stories; misplace
items; forget conversations, problems with
financial, schedule and medication
management
Difficulty with daily
communication, writing emails & letters; difficulty
reading emails or
novels
Trouble with spatial
orientation, driving;
“seeing” things in full view
Changes in
personality affecting
relationships and
decision-making; apathy that impacts
daily activities
Your neurologist may order additional tests to determine a possible cause of your symptoms: Neuropsychological testing (in-depth testing of all cognitive functions); MRI (to
look for brain atrophy or other cause)
You may receive a CLINICAL DEMENTIA DIAGNOSIS
Alzheimer’s dementia
Primary Progressive
Aphasia (type of
Frontotemporal dementia (FTD)
Posterior Cortical
Atrophy (PCA); Lewy Body Dementia
Behavioral Variant of
Frontotemporal Dementia
(bvFTD)
If your symptoms don’t affect daily life functioning, you may be diagnosed with MILD COGNITIVE IMPAIRMENT (MCI) OR if daily activities are affected, with dementia
Other clinical dementia diagnoses may include: Vascular dementia; Progressive Supranuclear Palsy (PSP); Corticobasal Degeneration (CBD); Parkinson’s dementia
Your neurologist may recommend additional tests to investigate the suspected underlying PROTEIN CAUSING your clinical symptoms: (1) Spinal Tap; (2) Amyloid PET Scan; (3) DAT scan;
Benefits of diagnosis: (1) Medications may slow progression if you have Alzheimer’s Disease; (2) You may qualify for research studies
Types of proteins
Alzheimer’s Disease
(Amyloid) FTLD-TAU FTLD-TDP
Lew Body: Alpha
Synuclein
Referral to research or resources
Research Programs
Social Work
Psychiatry Speech & Memory Therapy
Occupational Therapy
Physical Therapy
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The CARE Pathway Model for Dementia (CARE-D)
Neurocognitive Profile
Psychosocial Assessment
Tailored Recommendations to the Person with
Dementia and Family
Morhardt, D., Weintraub, S., Khayum, B., Robinson, J., Medina, J., O’Hara, M., Mesulam, M., & Rogalski, E., (2015). The CARE Pathway Model for Dementia (CARE-D): Psychosocial and rehabilitative strategies for care in young-onset dementias. Psychiatric Clinics of North America, 38(2), 333-352.
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SYMPTOMS: Forgets appointments, names, recent events, misplaces personal belongings; repeats the same questions.
MEMORY
SYMPTOMS: Poor judgment social disinhibition, loss of
empathy, new rituals and food preferences, apathy, inability to initiate, plan, organize, multi-task.
BEHAVIOR
SYMPTOMS: Poor word finding, word and sentence comprehension, spelling, reading, saying the wrong word or sentences with abnormal word order.
LANGUAGE
SYMPTOMS: Difficulty locating objects, route finding, judging distance, following lines while reading, cannot see the forest for the trees.
VISUOSPATIAL
NORTHWESTERN CARE PATHWAY MODEL
PATIENT
AND
FAMILY
Morhardt, D., Weintraub, S., Khayum, B., Robinson, J., Medina, J., O’Hara, M., Mesulam, M., & Rogalski, E., (2015). The CARE Pathway Model for Dementia (CARE-D): Psychosocial and rehabilitative strategies for care in young-onset dementias. Psychiatric Clinics of North America, 38(2), 333-352.
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Interventions: Maintain a routine, structure and consistency.
Referrals to speech and occupational therapies to assess and implement strategies at home such as calendars and other organizational systems to maximize independence
MEMORY
Interventions: Disclose diagnosis to friends and family to increase awareness, reduce embarrassment, avoid troubling social situations, legal/financial interventions, structured activity, family counseling
BEHAVIOR
Interventions: Speech therapy to assess and assist with maximizing communication, developing communication notebooks, “I have PPA” cards, identifying helpful augmentative communication devices.
LANGUAGE
Interventions: Occupational therapy to provide environmental suggestions to maximize independence. Low vision referrals to offer services to accommodate visual changes. – talking clocks, watches, cooking aids, audio books
VISUOSPATIAL
NORTHWESTERN CARE PATHWAY MODELSTRATEGIES
PATIENT
AND
FAMILY
Morhardt, D., Weintraub, S., Khayum, B., Robinson, J., Medina, J., O’Hara, M., Mesulam, M., & Rogalski, E., (2015). The CARE Pathway Model for Dementia (CARE-D): Psychosocial and rehabilitative strategies for care in young-onset dementias. Psychiatric Clinics of North America, 38(2), 333-352.
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Caregivers for Persons with Dementia
Who are they?
• More than 15 million Americans are caring for person with dementia
• Majority of persons with dementia are community-dwelling.
• Majority (85%) are cared for by family and friends
• Majority are spouse/partners
• Approximately 2/3 are women
• 34% are 65+
Alzheimer’s Association Facts & Figures, 2015 Copyrighted Materal: Do not copy or distribute.
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Caregivers
• Often called the invisible second patient
• Integral to quality of life
• Reasons for Caregiving
Love and reciprocity
Sense of duty, obligation, guilt
• Negative aspects of caregiving get the most attention
• 55-90% of caregivers experience positive effects Enjoying togetherness
Sharing activities
Feeling a reciprocal bond
Spiritual and personal growth
Increased faith
Feelings of accomplishment and mastery
Brodaty, H. (2009). Family caregivers of people with dementia. Diaglogues Clin Neurosci, 11(2), 271-228. Copyrighted Materal: Do not copy or distribute.
Impact of Dementia Caregiving on Well-Being: Finding Meaning
• Dynamics of meaning making within the caregiver role have been explored as a way of coping.
• Caregivers who find meaning through caregiving may experience less burden.
Farran et al., 1997
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Caregiving: Relational and Multidimensional
“The experience of care partners in cases of dementia is multidimensional and includes many factors relevant to the culture, context and dynamic in each individual relationship, such as:
• support structures available within the family and the community,
• personal coping resources,
• historical relationship
• the meaning that individuals ascribe to their experiences.”
Kindell et al. (2014). Living with semantic dementia: A case study of one family’s experience. Qualitative Health Research, 24(3), 401-411. Brodaty, H. (2009). Family caregivers of people with dementia. Diaglogues Clin Neurosci, 11(2), 271-228.
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Timeline and Phases of Illness
From Rolland, J.S. (1984) Copyrighted Materal: Do not copy or distribute.
Initial Crisis Phase
Key Individual/Family Tasks
• Learning to cope with symptoms • Establishing working relationships
with health care team • Create a meaning for illness • Grieve loss of “normal life” before
illness • Gradually accept illness as long
term • Pull together as a family to cope
with immediate crisis • Develop flexibility toward future
goals.
Key Clinician Tasks
• Family is especially vulnerable at this phase
• Health care professionals have enormous influence over a family’s sense of competence.
• Diagnosis disclosure is a “framing event”.
Rolland, J.S. (2012). Mastering Family Challenges in Serious Illness and Disability, in Walsh. F. (Ed.) Normal Family Processes (4th Ed. pp. 452-482). New York: Guilford Press.
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Chronic Phase
•Time span after diagnosis
•“The long haul”
•“Living in limbo”
•An exhausting problem “without end”
•Normal ambivalence / escape fantasies / survivor guilt
Rolland, J.S. (2012). Mastering Family Challenges in Serious Illness and Disability, in Walsh. F. (Ed.) Normal Family Processes (4th Ed. pp. 452-482). New York: Guilford Press.
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Chronic Phase
Key Individual/Family Tasks
• Come to grips with long-term changes
• Devise an ongoing coping strategy
• Maintain semblance of a normal life during heightened uncertainty
Key Clinician Tasks
• Help families develop new priorities within a “new normal”
• Help families maintain sense of autonomy
• Normalize emotions of ambivalence and loss to reduce feelings of blame, shame and guilt
Rolland, J.S. (2012). Mastering Family Challenges in Serious Illness and Disability, in Walsh. F. (Ed.) Normal Family Processes (4th Ed. pp. 452-482). New York: Guilford Press.
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Living with Ambiguity • Uncertainty about the future
• Previous ideal of a close relationship – with clear roles - must change.
• Losing a person while they are still here (Boss, P., 1997)
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What Helps?
State of the Science • 30 years of 200+ intervention studies
• 7 meta-analyses, 17 systematic reviews suggest a strong evidence exists for translating research into practice
Family Caregiver Intervention Treatment Modalities • Professional Support
• Psychoeducational
• Behavior management/skills training
• Counseling/psychotherapy
• Self-care/relaxation techniques
• Environmental redesign
• Multicomponent
Gitlin, L., et al. (2015). Translating evidence-based dementia caregiving interventions into practice: state of the science and next steps, The Gerontologist, 55(2). Copyrighted Materal: Do not copy or distribute.
Evidence based caregiver interventions
Outcomes • Increased caregiver knowledge and
understanding of memory problems
• Decreased caregiver stress and depression
• Better behavioral symptom management
Limitations • Lack of diversity / generalizability
Demographic subgroups underrepresented • Men, minority populations, rural, long-
distance, multiple carers
Non-Alzheimer’s dementia not represented
• Long-term effectiveness
Gitlin, L., et al., 2015; Gould, Hughes, O’Keefe, & Weiner, 2014; Brodaty & Arasaratnam, 2012
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Person-Centered SLP Assessment Approaches for People with Dementia
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What is the purpose of your assessment?
Are you part of a diagnostic team to evaluate and provide a diagnosis for your client?
Or….
Is the client/family coming to you out of concerns about their impairments or dementia diagnosis in hopes that you can help them to participate more fully in daily life?
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Key Principles of Person-Centered Assessment
• The person and family members are at the center of the care
• Think beyond the diagnosis and impairments: who is the person underneath?
• Do things WITH your client, not TO your client
• What are your client’s main concerns? How are their impairments impacting daily activities?
• What are the family member’s concerns?
• What are their areas of interests?
• What are their preserved strengths? (rather than focusing solely upon the weaknesses)
• Establish a profile of functioning across domains
• Plan for each client individually
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Time to test your partner!
1. What is today’s date?
2. Where are you right now?
3. Count backwards from 100 by 7’s.
4. Name as many words that you can think of that start with the letter F.
5. Raise your hand, touch your nose, then point to me.
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Reactions
•How did you feel being tested?
•How do you think it would feel if you have just been diagnosed with a fatal and devastating disease, and the first thing your clinician does is test you?
•From the questions asked:
Can you answer any of these questions… • How are the person’s impairments impacting their daily life?
• Can they participate in the activities they enjoy?
• How is the person coping with their diagnosis? Copyrighted Materal: Do not copy or distribute.
It’s Time to Flip the Rehab Model! (M. Bourgeois, 2015)
• Put the client and family members at the center of the evaluation
• Identify their concerns
• Administer standardized tests or subtests of standardized tests to further assess areas concern (e.g., Asking repetitive questions, administer story retell test of ABCD to
assess short term episodic memory loss)
• All goals are then written to address their concerns and are focused upon personally relevant stimuli
• CLIENT-DIRECTED, NOT CLINICIAN-DIRECTED Copyrighted Materal: Do not copy or distribute.
Other Assessment Considerations
1. Speech-Language Therapy is a team sport, and the care-partner/staff members are essential players
2. Use dynamic assessment (e.g., teach-test-retest methods, trial therapy) and objectively document responsiveness to each therapeutic technique or procedure (Bourgeois & Hickey, 2009)
3. Ask questions related to personally relevant topics (“Can you tell me about your grandchildren?” or “What are some of your favorite foods?” instead of, “Name as many animals as you can in one minute”)
4. Determine new strategies that will be needed as symptoms progress
5. Complete education and counseling throughout the evaluation
6. Determine if standardized testing is needed
• Is this evaluation part of the diagnostic process?
• Does insurance reimbursement require standardized testing?
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6 Steps for a Person-Centered Assessment
•BUILD RAPPORT: WHO IS YOUR CLIENT AS A PERSON?
•OBSERVE COMMUNICATION/ENVIRONMENT
•INTERVIEW: ASK YOUR CLIENT/FAMILY MEMBERS ABOUT THEIR
CONCERNS/FRUSTRATIONS
•DETERMINE IMPACT ON LIFE PARTICIPATION IN DAILY ACTIVITIES
•EDUCATE AND COUNSEL
•ADMINSTER SHORT STANDARDIZED ASSESSMENT, IF NEEDED
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A quick thought about staging….
• Does assigning a stage to your client help you with the following questions: Understanding who they are as a person?
Understanding how their unique set of strengths/weaknesses are impacting life participation in desired activities?
Understanding their family dynamics, level of support, and how these variables will impact their participation in therapy?
Understanding how they are coping with their diagnosis and their motivation to participate in therapy?
These are the critical questions that need to be answered to develop a person-centered plan of care
and tailored goals to meet individual needs.
Does staging someone help to answer these questions?
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Functional Standardized Tests: Cognition
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Functional Standardized Tests: Language
Please do not copy/distribute without permission
(A Kagan, N Simmons-Mackie, JC Victor, 2011)
Assessment for Living
with Aphasia (ALA)
Communication Activities of
Daily Living – 2nd Edition (CADL-2)
(CADL-2; Holland, Frattali, & Fromm, 1999)
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Other resources
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Goal Writing Always include the individual’s and family’s input
Goals should be individualized and should focus on functional outcomes
Goals should be realistic; may need adjust the level of cueing as the disease progresses so that goals can be met
Example Goals for Aphasia:
PWA will retrieve names of 9/10 personally relevant people and places in response to open-ended questions with use of communication wallet, given minimal verbal and gestural cues, to increase ability to participate in conversations with family and friends.
PWA will pronounce personally relevant multisyllabic words with 80% acc during structured tasks, with use of syllable segmentation, orthographic cues, and verbal fading cues hierarchy for apraxia of speech, provided with moderate cues from spouse to increase ability to participate in conversations with family and friends.
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Cognition Goal Examples
• Individual will plan weekly menu with use of weekly menu template and with organization of simple recipes that she can still prepare, with 90% acc, given min verbal cues from ST, to increase ability to independently prepare meals.
• Individual will locate 3/3 functional objects around the home with use of organizational strategies/external memory aids, given min verbal cues, to increase independence in ADL function.
• Individual will sequence 3/3 steps to operate cell, TV remote, and computer with use of visual memory aids, given min verbal cues, to increase sequencing ability for operating complex devices around the home.
• Individual will decrease frequency of perseverative questions regarding daily schedule to <3x/session x 1 week with use of memory wallet, given min verbal cues, to increase functional recall regarding daily schedule and activities.
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Person-Centered, Evidence-Based Treatment Approaches
•Memory Care Pathway
•Language Care Pathway
•Visuospatial Care Pathway
•Behavioral Care Pathway
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Treatment Approaches
• Impairment-based Approach
Focuses improving individual’s weaknesses
Drill-based
Clinician-directed
• Life-Participation Approach (Simmons-Mackie et al, 2001) “LPAA emphasizes the attainment of reengagement in life by
strengthening daily participation in activities of choice.”
Takes advantage of individual’s strengths
Focuses upon functional activities that are meaningful to the individual
Client-directed
Life Participation Approach to Treatment
Interventions are person-centered and focus on much more than
the individual’s impairments, also taking into account participation
in meaningful life activities and how the impairments impact the
individual’s identify and feelings.
Kagan, Aphasiology 2008 Please do not copy/distribute without permission
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Activity
Make a list of 10 personally relevant words that are important to you in daily conversations
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Activity
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Toss the Work Books!
• Join the “Toss the Workbook” movement!
• Before you can apply the person-centered, Care Pathway model to your setting, you must be actively using the established evidence-based approaches for people with dementia
How else will we get buy in for the services we can provide?
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Interventions: Memory Care Pathway
A Quick Overview:
Evidence-Based Interventions for Amnestic Dementia
Creation of graphic and visual cueing systems: e.g., visual memory aids, memory books, and memory wallets—to help individuals recall any type of information that is important to them (Bourgeois, 1990).
Use of spaced retrieval training (SRT) to promote use of graphic cueing systems (Camp & Stevens, 1990).
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Interventions: Memory Care Pathway
A Quick Overview:
Evidence-Based Interventions for Amnestic Dementia
• Vanishing cues: technique in which cues or prompts are gradually faded in relation to the learning progress (Sohlberg, Ehlhardt, & Kennedy, 2005)
• Errorless learning: memory intervention technique where clinicians use cues or instruction to prevent or reduce the likelihood of individuals making mistakes during learning trials (Clare & Jones, 2008)
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Interventions: Memory Care Pathway
A Quick Overview:
Evidence-Based Interventions for Amnestic Dementia
• Environmental Modifications: Assessing lighting, color schemes, flooring, furniture and hangings, and noise/sound — and then make the appropriate adaptations so the individual can function more independently and safely (Bruce, Brush, Sanford, & Calkins, 2013).
• Communication Strategies: Training family members and caregivers to use positive communication patterns, such as avoiding questions that rely on short-term memory and asking choice questions instead of open-ended questions.
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Intervention Continuum through all Stages of Alzheimer's Dementia
Early Stages
Late Stages
Cognitive Training
Middle Stages
Compensatory Strategies Family/Caregiver
Education & Training
Spaced Retrieval Training
Errorless Learning
Vanishing Cues
Graphic Cueing Systems
Electronic Memory Devices
Memory Stations
Strategies to increase initiation, organization, and sequencing
Initiate care partner training on recommended strategies
Environmental modifications
Graphic Cueing Systems
Adaptive Equipment
Bathing/Dressing
Visuospatial strategies
Communication strategies
Managing difficult behaviors
Increased reliance on caregiver to help implement strategies
Communication strategies
Graphic Cueing Systems
Managing difficult behaviors
Strategies to address other common problems: (swallowing, fall prevention, functional mobility, incontinence, perceptual deficits)
Predominantly caregiver training
Link with External Resources
1 2 3
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Interventions: Memory Care Pathway
Single most effective way to facilitate functional recall: • Signs
• Written reminders
• Schedule Board
• Memory Wallet
• Memory Book
• Visual sequencing aids
• *Must be combined with caregiver education and training to be effective (Egan et al, 2010)
The use of written or electronic aids to prompt memory has been associated with increasing: Prospective memory (Oriani et al. 2003)
Positive ADL learning outcomes (Lancioni et al., 2010)
Reduction of repetitive questions (Hopper et al., 2013)
© MemoryCare Corporation. These materials are not to be reproduced or distributed without prior written consent.
Graphic Cueing System: Memory Station
• Creation of Memory Station: Schedule board
Large display clock with date
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Graphic Cueing System: Memory Station
© MemoryCare Corporation. These materials are not to be reproduced or distributed without prior written consent.
Graphic Cueing System: Reminder Board
Graphic Cueing System: Visual Aid
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Graphic Cueing System: Visual Aids
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Graphic Cueing System: Visual Aid
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Graphic Cueing System: Memory Aids
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Memory/Communication Wallet Memory/Communication Wallet
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Memory Book: Reminiscence Therapy
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Memory Book: Visual Supports Creative Arts Discussions History Discussions
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Visual Sequencing Aids: Technology, Recipes Visual Sequencing Aids for Volunteer Work
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Visual Sequencing Aid: Meal Prep
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Visual Sequencing Aid: Medications
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Visual Aid: Grocery List Template
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Electronic Memory Aids
•Examples: Large display clock with date
Automatic pill dispenser
Memory Phone
Object locator
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Electronic Graphic Cueing Systems • Reminders/Alerts
• To Do lists
Listastic
Personal Assistant
ListPro
MindMate
• Short term episodic memory
DayOne
Momento
• Memory book
PicCollage
Memory Garden
MindMate
• Word recall
FlipCard Pro
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Electronic Graphic Cueing Systems
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Electronic Memory Books
Story Creator App
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Electronic Memory Books
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Electronic Memory Books
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Simulated Presence Treatment
Treatment focuses upon recording and re-playing videos of familiar persons or persons in position of authority (e.g., physician), to elicit desired behavior:
• Bathing • Exercising • Decreasing risk of elopement • Discussing events from the
past to promote engagement • To provide comfort or
reassurance • To stimulate conversation
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Care Partner Training: Take the Focus off of Short Term Memory
Avoid questions or statements that
rely on short term memory
DON’T SAY: DO SAY:
Do you remember me? Hi! I’m your physical therapist, Becky. It’s so nice to see you.
What day is it today? I can’t believe it’s already Thursday!
What did you do today? How’s it going?
Is that a new sweater? That sweater is so pretty on you. I don’t remember it.
What did you have for lunch today?
How was lunch today?
(Strauss, C.J., 2001) © MemoryCare Corporation. These materials are not to be reproduced or distributed without prior written consent.
Language Care Pathway
• Review of Primary Progressive Aphasia
• Person-Centered Treatment for Communication
• Reading/Writing Strategies
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Primary
Progressive
Aphasia
Mesulam, 2001, 2003, 2009
The impairment will get worse over time,
since its caused by a neurodegenerative disease
Impairment is prominent in a single domain
(language) with relative sparing of other domains
early on (e.g., memory, personality and perception)
a language impairment
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PPA-L
(logopenic)
Preserved Grammar Preserved Word Comprehension
Impaired word-finding (or
retrieval)
Impaired repetition*
PPA-G
(agrammatic)
PPA-S
(semantic)
Impaired Grammar Preserved Word Comprehension
Impaired word-finding
Preserved Grammar Impaired Word
Comprehension Impaired word-finding
Mesulam et. al Neurology, 2009
PPA comes in different flavors
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Clinical Syndrome
Neuroanatomic Features
Neuropathologic
Features
Established the anatomical selectivity
of PPA for the left hemisphere
perisylvian language network
Identified PPA as a clinical dementia that
was unique from clinical Dementia of the
Alzheimer’s Type (DAT) and from
aphasias caused by stroke
Identified neuropathologic
features associated with PPA are
variable
Early PPA Research
Clinical
Dementias
PPA bvFTD
DAT
FTLD-T AD
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Pathology
Anatomy
Clinical Subtypes
Clinical Syndrome
Progressive language impairment
PPA-S
(semantic)
PPA-G (agrammatic)
PPA-L (logopenic)
TDP-43 FTLD-T AD
MR Pictures from Meuslam 2009; Pathology Pictures courtesy of E.Bigio & Hatanpaa, K 2008 J Neuropath
PPA Subtypes & Clinico-pathologic correlations
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Pharmacological interventions for
individuals with PPA
No FDA-approved disease modifying treatments for PPA
Past clinical trials for individuals with PPA: • Bromocriptine [Parlodel, Cycloset] (Reed et al. 2004)
• Dopamine agonist, used in Parkinsons and shown to improve speech production in stroke-induced aphasia cases
• Galantamine [Razadyne] (Kertesz et al. 2008)
• A cholinesterase inhibitor acts to increase acetylcholine in the brain
• Memantine [Namenda] (Johnson et al. 2010, Boxer 2013)
• Acts on the glutamatergic system by blocking NMDA receptors
Future pharmacological interventions will need to target specific forms of disease based on the suspected neuropathology
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Interventions: Language Care Pathway
• Self-cueing strategies:
Semantic circumlocution
Phonemic self-cueing
Writing
Gestures
Visualization
• Reinforce positive self-cueing or word retrieval strategies that individual and care partner are already using
• Should others fill in the word for people with PPA or other dementia syndromes?
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Lexical Retrieval/Motor Speech Production Program
Rehearsal of Personally Relevant Words
PWA should make a list of words or phrases that are important and used on a daily basis, especially those that are difficult for them to retrieve or pronounce
Family members, friends, political figures
Street names, stores, restaurants, places traveled
TV shows, sports terminology
Words related to their hobbies: gardening, woodwork, exercise, music, theater
Personal facts: address, phone number, email address, date of birth, last 4 digits of social security number
Household objects
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Example of Personally Relevant Word List
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Lexical Retrieval of Personally Relevant Words
• Rehearsal Program
Home program designed to increase the individual’s lexical retrieval of words that they frequently use during daily conversation
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Lexical Retrieval: Flashcards
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Use of Writing Treatment to Facilitate Lexical Retrieval
Personally Relevant Word Rehearsal:
Writing practice to facilitate spelling and retrieval
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Examples of writing practice
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Examples of Writing Practice
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Motor Speech Production of Personally Relevant Words
• Strategies to increase pronunciation of personally relevant multisyllabic words
• Syllable segmentation
• Phonetic orthographic cues
• Fading cues hierarchy (a modified version of Rosenbek’s 8 steps for apraxia of speech; Rosenbeck, 1973)
• Rhythmic and Intonation strategies
• Modified Version of Melodic Intonation Therapy
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Motor Speech Production
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Motor Speech Production
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Motor Speech Production
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Quizlet (free) • Good audio cues
• No picture cues on free version
FlipCards Pro ($3.99) • More difficult to initiate audio cues
• Allows you to insert photographs
Apps to Practice Word Rehearsal
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Apps to Practice Word Rehearsal
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Apps to Practice Word Rehearsal
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Script Training
• Script Training
• Individual and care-partner are trained to formulate and rehearse scripts, to increase ability to speak via telephone, tell stories or jokes, order food at a restaurant, say prayers, or explain their condition to others (Youmans et al.,
2005)
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Script Training
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Script Training
No rehearsal.
PWA reads off script at dinner and is able to say prayer much
more fluently.
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Script Training
Additional Examples of Script Topics • Talk to a family member or friend over the telephone and
in other environments (e.g. with grandchildren)
• Order food at a favorite restaurant/drive-thru, schedule an appointment, or ask for directions over the telephone
• State personal information or biographical facts
• Explain the condition of “aphasia/PPA” and asking listeners to be patient
• Telling jokes or stories
• Giving a lecture or speech
• Saying prayers
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Script Training
Conversation Scripts How to make:
• Put all scripts in page protectors in 3-ringed binder
• Can also laminate and include in Communication Wallet
• Best if typed up and printed out (but can also be handwritten)
• Type up individual’s joke, story, or responses
• Try using landscape instead of portrait
• Try to keep one sentence per line.
• Assess most appropriate font size/spacing
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Script Training
Use of Technology for Script Rehearsal: VAST http://www.speakinmotion.com/
What is VAST?
“VAST is an innovative application of video technology to facilitate and improve communication abilities for speech-impaired individuals. Following close-up
video of mouth movements allows these individuals to speak full sentences. The simultaneous combination of visual, auditory and, in some cases, written cues,
allows these individuals to readily produce speech. VAST facilitates live communication and individualized, mobile speech practice.”
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Personal Picture Description Task
Structured description of personally-relevant pictures as a home exercise. Content may be used in daily conversations.
•Jonamac’s Apple Orchard
•Gala apples were ripe.
•Apple cider slushies
•Pumpkin donuts
•Hayride
•Corn maze
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Communication Wallet
Portable word- or picture-based aid to facilitate daily conversations
Helpful apps: • Microsoft PowerPoint
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Communication Wallet
Determine appropriate font size • Can PWA easily read the information?
Determine how much information to include on each page
Decide on content • Should be words, phrases, or sentences that individual
may need to frequently communicate in conversation
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Communication Wallet
How to use
• PWA can use for reference during conversation when unable to think of a word or question.
• PWA can study particular names before going to a social event
• Communication partner can remind PWA to pull out wallet to help find missing word
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PPA Card - Generic
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PPA Card - Personalized
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PPA Card: Personalized
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Communication Boards/Books • Word or picture-based aids to facilitate daily conversations in the home
Helpful Apps: Pic Collage
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Communication Board
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Communication Boards – Posted on Wall
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Examples: Communication Boards
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Communication Strategy: Drawing
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Use of Smart Phone/Tablet Pictures • Use of Smart Phone/Tablet Pictures
Develop system of taking pictures during daily activities; integrate pictures into daily conversations
Pictures from photo stream Story Creator App Please do not copy/distribute without permission
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Electronic Communication Aids: Pictures of daily activities on iPhone/iPad
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Speech Generating Devices • Must consider the following factors:
• Individual’s motivation to use an AAC device
• Individual’s fine motor and sequencing skills (Can he successfully operate a computer, TV remote or cell phone?)
• Individual’s level of family support, as someone will be needed to help individual program and effectively use the device as the disease progresses
• Out of pocket cost for the individual
• Trialing the use of a device in the individual’s home environment during functional situations
• MULTI-MODALITY APPROACH: Consider using different types of low-tech vs. high-tech communication aids in different contexts
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Speech Generating Device
GoTalk20+ ($200)
Simple device
Easy to use
Allows user to record his/her own voice for 100 short utterances.
5 levels, with overlays
Computer software for images
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Speech Generating Apps • GoTalk Now app ($79.99)
• For the iPad
• Ability to insert personal pictures and record own speech
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Speech Generating Apps Lingraphica SmallTalk
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Speech Generating Apps
Story Creator by Alligator Apps (free)
For the iPhone and iPad
• Simpler version of Pictello
• You can create a sequenced, narrated slideshow using your own pictures
• Unique feature: adding videos
• No text to speech option
• Displays spectrogram of your recorded messages
• Easier to program compared to Pictello
• Fewer editing options than Pictello
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Speech Generating Apps Story Creator
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Speech Generating Apps
Scene&Heard ($50)
(for the iPhone and iPad)
• Users can import their own photographs to create scenes
• Users can then record stories and messages to go along with different parts of the picture
• Easy to use and navigate
• Great for customized communication needs
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Speech Generating Apps
Scene&Heard
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Speech Generating Apps
Locabulary ($130)
(for the iPhone & iPad)
• Allows users to combine location and vocabulary to communicate
• Can use current GPS location to associate with a category
• NOT picture based
• Requires user to construct own sentences
• Can use pre-stored messages
• Can record own voice Copyrighted Materal: Do not copy or distribute.
Speech Generating Apps
Locabulary
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Auditory Comprehension
• Facilitating auditory comprehension:
Training communication partners to use the following strategies:
• eliminating distractions
• simplifying sentence structure
• slowing rate
• increasing use of nonverbal cues
• use of written or picture cues
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Auditory Comprehension: Writing Key Words
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Agraphia Strategies
- Use of speech recognition and word prediction features to facilitate spelling
Use of spelling or grammar check apps to facilitate functional writing tasks
Written aids/templates for emails or lists
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Alexia Strategies
• Use of speech recognition apps to look up pictures/word descriptions to facilitate single word comprehension
• • Use of digital books with
embedded links to Wikipedia or a Dictionary to increase single word comprehension
• Use of audio books + paper-back book for increased comprehension of novels
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Number Strategies
Use of written aids to facilitate reading/writing of phone numbers and addresses or taking phone messages
Written aid for TV/radio stations
Templates for check-writing
Tip calculator apps
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Applications to Other Dementia Syndromes • Considerations when applying communication strategies: Alzheimer’s dementia
• Early onset AD often has prominent aphasia in early stages
• Late onset AD; communication deficits typically present in moderate-severe stages
• Due to amnestic symptoms, involvement of family or caregiver will be critical for generalization of strategies
• Focus on activity/participation-based strategies
Behavioral Variant of Frontotemporal Dementia (bvFTD) • Due to decreased insight into deficits, involvement of family or caregiver will be critical for
generalization of strategies
• Focus on activity/participation-based strategies
Corticobasal Degeneration (CBD) • Consider intelligibility strategies if dysarthria is present
• Education regarding dysphagia due to early onset of motor symptoms
• Start formulation of communication aids quickly
Progressive Supranuclear Palsy (PSP) • Consider intelligibility strategies if dysarthria is present
• Education regarding dysphagia due to early onset of motor symptoms
• Start formulation of communication aids quickly
• Consult with Occupational Therapy regarding visual deficits and how they may impact communication aids
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Interventions: Visuospatial Care Pathway
•Refer to an Occupational Therapist who specializes in low vision
• SLP can also assess:
• Lighting
• Color schemes
• Flooring
• Furniture and hangings
• Noise and sound
*ECAT- Environmental and Communication Assessment Kit (Brush, J., Calkins, M., Bruce, C., & Sanford, J., 2012)
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Misplacement of Functional Objects
Strategies:
Decluttering
Use of organizers
Clear labeling
Increased contrast
Establishing location for specific items
Vanishing cues to implement use of system
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KEYS
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Interventions: Behavioral Care Pathway
Treatment should Focus upon
Care Partner Training:
•Don’t reason or argue
•Redirect
•Distract
•Validate
•White Lie
•Comfort .
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Behavior Log
•A great tool for determining what may be triggering a challenging behavior
•Record the behavior, the time of day, exact location, description of environmental factors (odors, sights, sounds)
•Look for a pattern after a week of recording the behavior
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Use of Montessori Approaches to Increase Participation in Meaningful Activities
•Modifying activities/hobbies individual enjoys so participation is still possible
•Music, Art, Theater, Dancing
•Intergenerational activities
•Pet therapy
•Reminiscence
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Importance of Meaningful Activities • Water color painting
• Playing piano
• Gardening
• Cooking
• Hiking in mountains
• Golfing
• Mosaics
• Sudoku
• Water aerobics
• Carpentry
• Ballroom dancing
• Pets
• Movies – Documentary festivals
• Travel
• Watching sports
• Volunteering at food pantry
• Raising sheep
• Surfing
Building chemical plant model
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Meaningful Activity Example
• Playing the piano
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Meaningful Activity Example
• Water color painting
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Implementation in Your Setting
YOU can take a leadership role in helping to implement an interdisciplinary team
in your setting!
“Rebrand” the role of the SLP
We do more than just treat swallowing!
If we don’t take action in helping people with dementia across
healthcare settings, who will? Copyrighted Materal: Do not copy or distribute.
Implementation in Your Setting Arguments:
• Productivity requirements don’t permit enough time to start this type of program for frequent collaboration with other professionals
• It’s too difficult to communicate with family members; they are never around when I am there
• It’s too hard to develop a relationship with the nursing staff; they are too busy and there is a lot of turnover Copyrighted Materal: Do not copy or distribute.
Establish Monthly Inservices
How to structure a 30 minute inservice:
5 minutes: Summarize the role of the SLP and the types of treatment we can provide
10 minutes: Elaborate upon Cognitive-Communication Strategies for people with dementia
5 minutes: Review positive communication strategies for people with dementia
5 minutes: Provide a “case study” – example of a person you have worked with in this setting
5 minutes: Q & A
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Establish Weekly “Rounds”
•Encourage your setting to start a weekly “Rounds” to increase collaboration between disciplines and coordination of care
•For each case: Review diagnosis, psychosocial variables, progress in
therapy
Other referrals or resources that are appropriate
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Case Study: Ben (Memory Care Pathway)
History
• 65 year old man former stockbroker handling financial accounts with 2-3 year history of mild progressive decline in cognition.
• Married to wife Diane for 13 years
• MMSE 30/30
• Continues to be active, rides bike, plays tennis, takes classes.
• Mood, appetite, sleep - good
• Unable to manage finances – wife has taken over for the past 2 years
• Wife maintains active lifestyle and resents the loss of their future plans as a couple.
• 2nd marriage of 13 years
• No children – Ben was a ‘bachelor’ until age 50
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Case Study: Ben (Memory Care Pathway)
Symptoms • Hygiene decline –
does not change underwear, wash hair or shower without reminders
• Difficulty navigating while driving
• Turns on the AC but leaves windows open
• Used to play bridge, but can no longer “keep up”
• Does not eat lunch when wife not home
• Returns with groceries but forgets to unpack items and put them away
• Got mixed up about the set-up of wife’s daughter’s studio apartment
• Forgot the plays he had seen in the prior 6 months.
• Misunderstood a question friend had asked and answered in a slightly tangential way
• Mixed up words – called Lake Michigan an ‘ocean’ ; called a fork a ‘spoon’.
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Partner Activity
What evidence-based interventions would you use?
Write one person-centered goal for each intervention:
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Interventions: Ben (Memory Care Pathway)
Social Work
• Education and support for patient and wife
• Counseling for wife on loss of reciprocity in relationship and future plans
• Encourage wife to seek out emotional support
•Reinforce helpful communication strategies
• Encourage driving evaluation
• Help evaluate decision-making, judgment and safety over time
• Help prepare wife to take on more responsibility over time while balancing her own needs
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Case Study: Ben (Memory Care Pathway)
Speech-Language Pathology • Hygiene:
Placed visual aid on laundry basket “DIRTY LAUNDRY” and placed basket in walk-in closet where he changes clothes each day
Made visual sequencing aid (laminated) for shower, with reminders for each step
Established “bathing routine” for Mondays/Wednesdays/Fridays. Spouse trained to place sticky note visual aid on his bathroom mirror on days he needs to shower
• Air Conditioning:
Bright green visual aid placed on wall next to A/C control, which states: “GO CLOSE WINDOWS IMMEDIATELY”. Reminder also written on dry erase board in kitchen
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Case Study: Ben (Memory Care Pathway)
Speech-Language Pathology • Groceries & Meal Prep
Memory Station is created in the kitchen
Ben’s spouse trained to display large visual memory aid in memory station on days he is going shopping that states: REMEMBER TO PUT AWAY GROCERIES
Visual aid reminders also placed on fridge and pantry
Ben’s spouse trained to use dry erase board for daily schedule and reminders
Each day, she writes instructions as to where she is, when she will return, and what Ben should eat for lunch
Reoccurring alarm is set for noon each day on Ben’s cell phone, with the reminder to eat lunch
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Case Study: Ben (Memory Care Pathway)
Speech-Language Pathology • Memory/Communication Wallet
Functional information for daily activities
List of plays he has seen, with short description
Lists of words by category that he has trouble retrieving
Information and diagram regarding layout of his daughter’s apartment
• Spaced Retrieval/Errorless Learning to increase Ben’s ability to automatically refer to his wallet for information
• Spouse education on communication strategies
How to prompt circumlocution to facilitate lexical retrieval
It’s ok to fill in the words for him
Auditory Comprehension strategies – educated close friends and family members
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Questions?
Becky Khayum
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References
• Beeson, P. , Hirsch, F., & Rewega, M., (2002). Successful single word writing treatment: Experimental analysis of four cases. Aphasiology, 16(4-6), 473-491.
• Beeson, P.M., King, R. M., Bonakdarpour, B., Henry, M.L., Cho, H & Rapcsak, S.Z (2011). Positive effects of language treatment for the logopenic variant of primary progressive aphasia. J Mol Neurosci, 45(3), 724-736.
• Brendel, B., & Ziegler, W. (2008). Effectiveness of metrical pacing in the treatment of apraxia of speech. Aphasiology, 22(1), 77-102.
• Croot, K., Nickels, L., Laurence, F., & Manning, M. (2009). Impairment- and activity/participation-directed interventions in progressive language impairment: Clinical and theoretical issues. Aphasiology, 23(2), 125-160.
• Decker, D. A., & Heilman, K.M. (2008) Steroid treatment of primary progressive aphasia. Arch Neurol, 65 (11), 1533-1535.
• Farrajota, L., Maruta C, Maroco J, Martins I.P, Guerreiro M., & de Mendonça A (2012) Speech therapy in primary progressive aphasia: a pilot study. Dementia and Geriatric Cognitive Disorders, 2:321–331
• Finocchiaro, C., Maimone, M., Brighina, F., Piccoli, T., Giglia, G., & Fierro, B. (2006). A case study of primary progressive aphasia: Improvement on verbs after rTMS treatment. Neurocase, 12, 317-321.
• Henry, M.L., Meese, M.V., Truong, S., Babiak, M.C., Miller, B.L., & Gorno-Tempini, M.L. (2013). Treatment for Apraxia of Speech in Nonfluent Variant Primary Progressive Aphasia. Behavioral Neurology, 26(1-2), 77-88.
• Holland, A.L., Weinberg, P., & Dittelman, J. (2012). How to Use Apps Clinically in the Treatment of Aphasia. Seminars in Speech and language: Adult focus, 33 (3), 223-233
• Johnson, N.A., Rademaker, A., Weintraub, S., Gitelman, D., Wienecke, C., & Mesulam, M. (2010). Pilot trial of memantine in primary progressive aphasia. Alzheimer Dis Assoc Disord, 24(3), 308.
• Kertesz, A., Morlog, D., Light, M., Blair, M., Davidson, W., Jesso, S., & Brashear, R. (2008). Galantamine in frontotemporal dementia and primary progressive aphasia. Dement Geriatr Cogn Disord, 25(2), 178-185.
• McNeil, M.R., Small, S.L., Masterson, R.J., & Tepanta, R.D. (1995). Behavioural and pharmacological treatment of lexical-semantic deficits in a single patient with primary progressive aphasia. American Journal of Speech-Language Pathology, 4, 76-93.
• Reed, D.A., Johnson, N.A., Thompson, C., Weintraub, S., & Mesulam, M-M. (2004). A clinical trial of bromocriptine for treatment of primary progressive aphasia. Annals of Neurology, 56(5), 750.
• Kyrana Tsapkini, Constantine Frangakis, Yessenia Gomez, Cameron Davis & Argye E. Hillis (2014) Augmentation of spelling therapy with transcranial direct current
stimulation in primary progressive aphasia: Preliminary results and challenges, Aphasiology, 28:8-9, 1112-1130,
• Sapolsky, D., Bakkour, A., Negreira, A., Nalipinski, P., Weintraub, S., Mesulam, M.-M., Caplan, D., & Dickerson, B.C. (2010). Cortical neuroanatomic correlates of symptom severity in primary progressive aphasia. Neurology, 75 (4), 358-366.
• Youmans, G. L., Holland, A. L., Munoz, M. & Bourgeois, M. (2005). Script training and automaticity in two individuals with aphasia. Aphasiology, 19, 435-450.
Please do not copy/distribute without permission
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© MemoryCare Corporation. These materials are not to be reproduced or distributed without prior written consent.
References Bourgeois MS, Camp C, Rose M, et al. A comparison of training strategies to enhance use of external aids by persons with dementia. J Commun Disord
2003;36:361-378.
Camp, C., & Stevens, A. (1990). Spaced-retrieval: A memory intervention for dementia of the Alzheimer’s type. Journal of Aging and Mental Health, 10, 58-61.
Clare, L., & Jones, R. (2008) Errorless learning in the rehabilitation of memory: a critical review. Neuropsychological Review, 18, 1-23.
Clare, L., & Woods, B. (2008). Cognitive rehabilitation and cognitive training for early-stage Alzheimer’s disease and vascular dementia. Cochrane Database of Systematic Reviews, 4. doi:10.1002/14651858.CD003260. (Original work published 2003)
Coste, Joanne K. Learning to Speak Alzheimer’s. New York: Houghton Mifflin Company, 2003.
Egan, M., Berube, D., Racine, G., Leonard, C., & Rochon, E. (2010), 1-12. Methods to enhance communication between individuals with Alzheimer’s disease and their caregivers: A systematic review. International Journal of Alzheimer’s Disease, 2010, 1-12.
Hopper, T., Bourgeois, M., Pimentel, J., Qualls, C.D., Hickey, E., Frymark, T., & Schooling, T. (2013). An Evidence-Based Systematic Review on Cognitive Interventions for Individuals with Dementia. American Journal of Speech-Language Pathology, 22, 126-145.
Glisky EL, Schacter DL, Tulving E. Learning and retention of computer-related vocabulary in memory-impaired patients: method of vanishing cues. J Clin Exp Neuropsychol 1986;8:292-312.
Lancioni, G.E., Singh, N.N., O’Reilly, M.F., Sigafoos, J., Tatulli, E., Rigante, V.,…Minervini, M. (2010). Technology-aided verbal instructions to help persons with mild or moderate Alzheimer’s disease perform daily activities. Research in Developmental Disabilities, 31, 1240-1250.
Oriani, M., Moniz-Cook, E., Binetti, G., Zanieri, G., Frisoni, G.B., Geroldi, C.,...Zanetti, O. (2003). An electronic memory aid to support prospective memory in patients in the early stages of Alzheimer’s disease: A pilot study. Aging and Mental Health, 7, 22-27.
Sohlberg, M.M., Ehlhardt, L., & Kennedy, M. (2005). Instructional techniques in cognitive rehabilitation: A preliminary report. Seminars in Speech and Language, 26, 268-279.
Strauss, Claudia J. Talking to Alzheimer’s. Oakland: New Harbinger Publications, Inc., 2001.
Wilson, B. (2002). Towards a comprehensive model of cognitive rehabilitation. Neuropsychological Rehabilitation, 12, 97-110.
Zeisel, John. I’m Still Here. New York: Penguin Group, 2009
Special thanks to the research participants and their family members for their time and commitment to research, without
them none of this work would be possible.
For more information please contact: [email protected] | [email protected]
NS075075; DC008552; AG13854
Acknowledgements
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