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New Directions in Dementia Care at Home

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Place cards directly in front of Terry, within 14-18' from eye level ... Say, 'Place the Red cards in this pile & black cards in this pile' Activity Prescription ... – PowerPoint PPT presentation

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Title: New Directions in Dementia Care at Home


1
New Directions in Dementia Care at Home
  • Tracey Vause-Earland, MS, OTR/L
  • E. Adel Herge, MS, OTR/L
  • Catherine Verrier Piersol, MS, OTR/L
  • Contributing Authors
  • Laura N. Gitlin, PhD
  • Janice Burke, PhD, OTR/L, FAOTA
  • Thomas Jefferson University
  • Philadelphia, PA
  • Funded by the National Institute of Mental Health
  • (Grant R21 MH069425)
  • L. Gitlin, PhD
  • Principal Investigator

2
Learning Objectives
  • Participants will be able to
  • Integrate recent evidence-based literature to
    identify specific strategies that facilitate
    activity engagement in persons with dementia.
  • Identify occupation-based strategies that help
    persons with dementia and their caregivers
  • engage in meaningful activities,
  • manage troublesome behaviors,
  • support quality of life, and
  • promote participation.
  • Use Allens Cognitive Levels to preserved
    capabilities and identify the approaches and cues
    needed to facilitate activity engagement.

3
Project TAPTailored Activities Program
  • Home-based Occupational Therapy Intervention for
    persons with Dementia their Caregivers
  • Built upon elements of Previous Dementia
    Caregiver Research
  • Dementia Management Study (NIA)
  • Project REACH (NIA)
  • Project ACT (NIA, NINR)

4
Project REACHEnvironmental Skill-building
Program (ESP)
  • A standardized occupational therapy service that
    empowers caregivers to identify and resolve
    dementia management issues
  • Education
  • Skill-Building
  • Environmental Strategies

5
REACH Study (N 255)
6
Project ACTAdvancing Caregiving Techniques
  • Objectives
  • Reduces caregiver upset with disruptive
    behaviors.
  • Reduces the frequency of care recipient
    disruptive behaviors.
  • Intervention
  • Simple stress reduction techniques
  • Communication strategies (positive strategies,
    remove negative strategies)
  • Task simplification
  • Environmental simplification
  • Activity engagement

7
Frameworks for Understanding Behaviors
  • Need-driven Behaviors (NDB)
  • Progressively Lowered Stress Threshold (PLST)
  • Antecedent-Behavior-Consequences (ABC)
  • Triadic Model (person-environment-caregiver)
  • Volicer and Hurley (2003). J. of Gerontology
    Medical Sciences

8
PROJECT TAP GoalsPI Laura Gitlin, PhD NIMH
MH069425
  • Develop standard, portable assessment approach to
    identify match preserved capabilities with
    activities
  • Bridge neuropsychological testing with functional
    and activity analyses
  • Develop a portable, reproducible, targeted
    intervention designed to introduce meaningful
    activities to improve quality of life of persons
    with dementia, train caregiver (CG) in setting up
    activities and reduce CG burden

9
Why focus on activity engagement?
  • Preserved capabilities are an overlooked aspect
    of dementia
  • OTs are in a unique position to assess
    capabilities of care-recipients and then design
    activity programs tailored to their capabilities,
    without relying on impaired areas of cognition

10
Significance of Approach
  • Neuropsychological testing
  • Families unaware of what their family member with
    dementia CAN DO at home

11
Functional Consequences of Neurological Changes
Neurological Neuropsychological testing (CAN
NOT DO)
Neuroscience
Daily Functioning
Activity Testing (CAN DO)
12
TAP EligibilityCare Recipient Inclusion Criteria
  • English speaking
  • MMSE
  • Able to feed self
  • Appears bored sad or depressed anxious or
    worried agitated or restless

13
Caregiver Inclusion Criteria
  • English Speaking
  • Age 21 years or older
  • Lives with care recipient
  • Plans to live in area 8 months
  • Has a telephone
  • Indicates a willingness to learn new approaches
  • Provides some level of assistance with at least
    one (1) ADL or three (3) IADLs

14
TAP Study Design
Baseline Assessment (T1)
Randomization N 60
Recruitment
Screening
Treatment
Control
Intervention
Follow-up Assessment
Follow-up Assessment
4 Months Post Baseline (T2)
Intervention
8 Months Post Baseline (T3)
Follow-up
15
Delivery Characteristics
  • Eight contacts over 4-month period
  • In home visits (up to 1 ½ hour duration)
  • Follow-up telephone check-ins (20 minutes)
  • Use of different treatment modalities
  • Education materials
  • Problem solving
  • Role play, demonstration
  • Active CG skills training
  • Provision of activity-related devices/materials

16
Intervention Design
  • Phase I Assessment
  • Phase II Introduction of Activity
  • Phase III Closure
  • Caregiver
  • Care Recipient
  • Environment
  • Communication Strategies
  • Simplifying the Task
  • Simplifying the Environment
  • Generalization to other activities

17
TAP Phase I Assessment Process
  • Caregiver
  • Care Recipient
  • Social and physical environment

18
Caregiver Assessments
  • TAP Clinical Interview
  • Establish rapport/obtain background information
  • Identify daily routines, interests, and typical
    activities (past and present)
  • Preferences, care giving style
  • Approach to Activity Engagement
  • Pleasant Event Survey
  • Frequency, Enjoyability, Opportunity to do
    activities

19
Pleasant Event Survey

Adaptation of The Pleasant Events Schedule AD
Linda Teri, PhD and Rebecca Logsdon, PhD,The
Gerontologist, 311, 1991.
20
Caregiver Assessments
  • Caregiver Strategy Checklist Completed at
    session 1 and/or 2 final session
  • Example Strategies
  • Uses short phrases when instructing the CR (2 or
    3 words)
  • Shows CR what to do by demonstration
  • Tries to ignore CRs mistakes

21
Care Recipient Assessments
  • Comportment
  • Behavior, Appearance, Communication,
  • and Compliance
  • Adapted from the Severe Cognitive Impairment
    Profile,
  • Guerry M. Peavy, PhD
  • Dementia Rating Scale 2 (DRS-2)
  • 5 subscales Attention, Initiation/Perseveration
    , Construction, Conceptualization, Memory
  • Mattis, S., Jurica, P., Leitten, C.
    Dementia Rating Scale Professional Manual.
    Lutz, FL Psychological Assessment Resources

22
Care Recipient Assessments
  • Assessing the Care recipients capabilities
  • The Allen Battery
  • To identify a CRs Best Ability to Function
  • Analyze the cognitive motor requirements of
    activities CR wants to do
  • Recommend meaningful activities that maintain CR
    abilities reduce CG burden
  • Recommend environmental set up of activities to
    facilitate CR participation maintain safety

23
Cognitive Disability Theory
  • Developed by Claudia Allen, MA, OTR, FAOTA
  • Function is what people do
  • Mental energy is what people pay attention to
  • Functional capacity is the ability to use mental
    energy to guide motor and speech performance.

24
Cognitive Disability
  • A restriction in voluntary motor action
    originating in the physical or chemical
    structures of the brain and producing observable
    limitations in routine task behavior. (Allen,
    1985)

25
Information Processing Model

CUES concrete abstract
Observable Behavior action activity
Attention biological
Processing speed individual differences
26
Allen Cognitive Levels
  • Level One - Automatic Actions
  • Level Two - Postural Actions
  • Level Three - Manual Actions
  • Level Four - Goal Directed Activity
  • Level Five - Independent Learning
  • Level Six - Planned Actions

27
Allen Cognitive Level - Modes
  • .O - bits of information from previous level
  • .2 - distinctive characteristics of
  • time/place easily overwhelmed
  • .4 - process all information of the level
  • .6 - orientation shifts up information from
  • next level
  • .8 - add information from next level unable
  • to integrate all information

28
LEVEL 2 Postural Actions
  • Able to overcome effects
  • of gravity
  • Sit, stand, move, walk or push
  • ROM and movement
  • Adjusts body to stabilize self
  • Indicates pleasure/displeasure

29
LEVEL 3 Manual Actions
  • Person handles objects, repetitive actions
  • Eye-hand coordination
  • Understands concrete meaning of objects
  • Repetitive actionsmay not notice effect of
    action on object
  • Size, shape and color
  • Sequence of three actions
  • Attends to objects within 12-18 visual field

30
LEVEL 4 Goal Directed Activity
  • Aware of objects in plain sight 24 visual field
  • Person begins to notice striking features
  • Activities are important to person
  • Recognizes errors, compliant with directions
  • Requests assistance
  • Familiar routines and structure
  • Recognizes ownership
  • Understands rules and norms

31
Allen Battery
  • Allen Cognitive Level Screening Tests
  • Routine Task Inventory
  • Allen Diagnostic Module
  • Sensory Stimulation Kits

32
Allen Battery Tools in TAP
  • Large Allen Cognitive Level Screen
  • Screen to determine cognitive level
  • Allen Diagnostic Module (Placemat)
  • provides volitional opportunity
  • real world context of an activity
  • engages client regardless of previous
    roles/education/exposure to crafts/personal
    preferences

33
Assessment through Craft Analysis
Qualitative Analysis of Initiation Planning Atte
ntion Visual scanning Problem identification and
self- correction
Model placemat
MMSE 2 DRS 34
Allens Cognitive Level 4.2
Model placement
MMSE13 DRS - Attention 82 Construction
41-59 Initiation, Concept, Memory 35
CASE EXAMPLES NEUROPSYCHOLOGICAL TEST SCORES
36
How do these assessments inform/guideactivity
engagement?
  • Identify CRs remaining abilities
  • Provides appropriate and valued interventions
    based on cognitive ability interests
  • Includes validates caregivers ideas and
    priorities
  • Provides the caregiver with information on what
    cues/strategies work best to facilitate engagement

37
Developing a Collaborative Partnership Building
Rapport
  • Use empathetic listening
  • Identify caregivers goal for intervention
  • Use and respect caregivers language
  • Write down CGs existing strategies to validate
    his/her expert knowledge
  • Facilitate Caregivers Active Problem-solving

38
Understanding the Caregiver-Care Recipient
Culture
  • Keep these questions in mind
  • What constitutes appropriate care to this CG?
  • What is their level of understanding of Dementia?
  • What are the preferred approaches to
    coping/caring?
  • What is the meaning behind objects actions in
    their environment?

39
Phase II Introduction of Activity
  • Review CRs strengths and preserved capabilities
  • Introduce 3 activity prescriptions
  • Role play, demonstrate, practice, reinforce
    prescribed techniques
  • Provide direct feedback validate
  • Re-assess, problem-solve, with CG refine targeted
    activities

40
Case Example Terry
  • 81 year old retired accountant
  • Father of 7 children.
  • Married over 60 years.
  • History of vascular dementia (multiple strokes)
  • Attends day center 2x/week
  • Loves to sing, play Bridge with family, great
    sense of humor (comedian, life of the party)

41
Assessment Results
  • MMSE 13
  • LACLS 3.4
  • ADM 3.4
  • Dementia Rating Scale
  • Attention
  • Initiation/Perseveration
  • Construction 11-18
  • Conceptualization
  • Memory

42
Terrys Abilities
  • Good hand skills able to grasp, release, and
    throw objects
  • Follows simple 1 step directions with additional
    cueing (pointing and short verbal cues work best)
  • Good attention and tolerance up to 30 minutes
    with activities of interest
  • Able to distinguish between size, shape, and feel
    of objects
  • Able to place objects in a row and into and
    out of containers
  • Sustains repetitive actions needs some asst. to
    progress to next level

43
Recommended Activity
  • Sorting EZ playing Cards
  • or Viewing Discussing
  • Reminiscence Cards
  • Activity Goal
  • Terry will sort and manipulate playing cards or
    look at the vintage photographs for 15 minutes

44
Activity Prescription
  • Simplify the setting for the activity
  • Reduce clutter (remove items from work surface).
    This will help your husband to focus on the task
    and eliminate confusion and distraction.
  • Place cards directly in front of Terry, within
    14-18 from eye level
  • Set up a comfortable, supportive seat for Terry
    to sit
  • Minimize auditory distractions (radio/TV)
  • Set up appropriate lighting

45
Activity Prescription
  • Simplify the Activity
  • Allow sufficient time for Terry to engage in card
    activity
  • Relax standard of performance (there is no right
    or wrong way)
  • You may need to present 1 vintage photo at a time
  • Keep cart sorting simple. Say, Place the Red
    cards in this pile black cards in this pile

46
Activity Prescription
  • Enhance Terrys participation
  • Draw on Terrys long-term memory
  • For card sorting, draw on Terrys ability to
    perform repetition
  • Tap into Terrys interest in card playing
  • Help Terry initiate and sequence use a guiding
    touch and a simple command
  • Choose a time of day when hes alert (after a nap)

47
Activity Prescription
  • Communicate Effectively
  • Use encouragement-Praise Terry after completing
    the activity
  • Use short commands
  • If Terry leaves the activity, use a calm voice
    and redirect him back, or wait 15 minutes and
    re-introduce the activity

48
Caregiver Stress Reduction Techniques
  • Strategies for You
  • Try to relax take a few deep breaths
  • Remember, there is no right or wrong way to do
    the activity
  • Feel good about yourself you are doing a great
    job

49
Case Example Annie
  • 94 year old mother/grandmother
  • Lives with her daughter and son-in-law
  • Initially attended Day center
  • End-stage dementia difficulty eating, limited
    mobility, limited recognition

50
Assessment Results
  • MMSE - 0
  • LACLS 3.2 (good day!)
  • ADM unable to do
  • Allens Sensory Stimulation Kit 3.0
  • (observed at Day center)
  • Dementia Rating Scale unable to do/0

51
Annies Abilities
  • Can reach, grasp and release objects
  • Follows along with hand over hand assistance
  • Receives pleasure and contentment from physical
    closeness (hugging, likes to hold your hand)
  • Can manipulate familiar objects-eating utensils
    and hairbrush
  • Able to see/identify primary colors and shapes

52
Recommended Activity
  • Activity Pillow
  • Manipulating/feeling various textures and
    fastenings
  • Activity Goal
  • Annie will work with the activity pillow for 5
    minutes (on and off- as she pleases) 2 times
    during the week

53
Phase III Closure Generalization to new
problem areas
  • Review/practice/validate strategies
  • Modify strategies problem solve with CG
  • Generalize for future challenges- need to
    downgrade/simplify

54
Altering activities as abilities change over time
  • Keep simplifying the activity
  • Reduce the number of materials used
  • Reduce the steps needed to complete an activity
  • Simplify instructionsuse touch and demonstration
  • Use passive activities (video, music, looking at
    photos)
  • Change your expectationsRelax the rulesFocus on
    strengths

55
What do families need?
  • Knowledge of the disease process
  • Validation as a caregiver
  • Context-specific understanding/knowledge of
    capabilities of person with dementia
  • Skills
  • Problem-solving
  • Communication
  • Task and environmental simplification
  • Self-protection
  • Ability to take care of self (preventive health,
    sleep, exercise)

56
What do persons with dementia need?
  • Minimization of behavioral disturbances
  • Reassurance, security and safety
  • Engagement in meaningful activity
  • Opportunities for social interaction and
    occupation
  • Quality of life throughout progression of the
    disease

57
Translational Research to Practice
  • Multi-component in-home intervention design to
    prevent/reduce troublesome behaviors
  • A comprehensive service approach combining most
    effective strategies from previous CG research
  • Establishing an occupational therapy dementia
    service
  • Training Institutes

58
Why Does Activity Work?
  • Any level of energy expenditure has physiological
    benefit
  • Minimizes boredom and/or inappropriate
    environmental stimuli which trigger agitation
  • Taps into capacities, occupation, and
    productivity, is self-fulfilling and linked to
    preservation of self-identity

59
Thank You!
  • Tracey Vause-Earland, MS, OTR/L
  • tracey.vause-earland_at_jefferson.edu
  • E. Adel Herge, MS, OTR/L
  • adel.herge_at_jefferson.edu
  • Catherine Verrier Piersol, MS, OTR/L
  • piersolc_at_philau.edu
  • www.jefferson.edu/jchp/carah/
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