New Directions in Dementia Care at Home

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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

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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.

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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)

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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

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REACH Study (N 255)
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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

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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

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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

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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

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Significance of Approach

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

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Functional Consequences of Neurological Changes
Neurological Neuropsychological testing (CAN
NOT DO)
Neuroscience
Daily Functioning
Activity Testing (CAN DO)
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TAP EligibilityCare Recipient Inclusion Criteria

• English speaking
• MMSE
• Able to feed self
• Appears bored sad or depressed anxious or
  worried agitated or restless

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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

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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
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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

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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

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TAP Phase I Assessment Process

• Caregiver
• Care Recipient
• Social and physical environment

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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

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Pleasant Event Survey

Adaptation of The Pleasant Events Schedule AD
Linda Teri, PhD and Rebecca Logsdon, PhD,The
Gerontologist, 311, 1991.
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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

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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
  

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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

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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.

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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)

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Information Processing Model

CUES concrete abstract
Observable Behavior action activity
Attention biological
Processing speed individual differences
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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

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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

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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

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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

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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

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Allen Battery

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

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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

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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
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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

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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

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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?

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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

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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)

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Assessment Results

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

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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

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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

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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

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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

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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)

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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

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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

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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

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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

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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

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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

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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

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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

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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)

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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

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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

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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

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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/