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Innovation in Occupational Therapy Practice Evidence of OT Effectiveness in Working with Family Care

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Occupational Therapy and Physical Therapy in Geriatrics, 9, 83-92; Gitlin & Corcoran, (1996) ... Occupational and Physical Therapy in Geriatrics, 9(3&4), 5-21. ... – PowerPoint PPT presentation

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Title: Innovation in Occupational Therapy Practice Evidence of OT Effectiveness in Working with Family Care


1
Innovation in Occupational Therapy
Practice Evidence of OT Effectiveness in
Working with Family Caregivers of Individuals
with DementiaResults from the NIH REACH
Initiative
  • Laura N. Gitlin, Ph.D.
  • Professor, Department of Occupational Therapy
  • Director, Community and Homecare Research
    Division, Thomas Jefferson University
  • Funded by NIA U01 AG 013265

2
Research Team Members
  • Co-investigators
  • Mary Corcoran, Ph.D., OTR/L
  • Susan Klein, MSW
  • Project Managers
  • Laraine Winter, Ph.D.
  • Sandy Schinfeld, MPH
  • Data management/analysis
  • Marie Dennis, Ph.D.
  • Mary Barnett
  • Walter Hauck, Ph.D.
  • Interviewers
  • Annemarie Gregory
  • Julie Liebman, MA
  • Interventionists
  • Geri Shaw, OTR/L
  • Tracey Vause Earland, MS, OTR/L
  • Susan Eckhardt, OTR/L
  • Linda Levy, MS, OTR/L
  • Roz Lipsett, MS, OTR/L
  • Pam Kearney, MS, OTR/L

3
Overview of Presentation
  • Quick facts about family caregivers
  • Environment as treatment modality
  • NIH REACH initiative
  • Environmental Skill-building program
  • Study outcomes
  • Clinical guidelines
  • Conclusions

4
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5
Case Scenario
  • 72 year old wife caring for 75 year old husband
    with moderate stage dementia
  • Husband verbally abusive
  • Wakes up several times at night
  • Difficulty with dressing and bathing but resists
    care
  • Tries to leave home
  • Suspicious of visitors
  • Has had several falls
  • Constant supervision required
  • Caregiver has osteoporosis and high blood
    pressure
  • Caregiver providing care for 8 years

6
Key Facts About Dementia and Caregiving
  • 4 million diagnosed with Alzheimers disease or
    related disorder
  • 50 persons gt85 years of age have mild
    cognitive impairment or dementia
  • gt50 of persons with dementia cared for at home
  • Average course of disease is 8 years
  • Range from 4 to 20 years

7
Who Provides Care to Persons with Dementia?
  • Most caregivers are
  • Women (spouses and daughters)
  • Spouses
  • Aging
  • Caregiving occurs across all racial, ethnic and
    socioeconomic groups
  • Caregiving does not stop with nursing home
    placement

8
Family CaregiversThe Hidden Patient
  • AT RISK FOR
  • Depression (gt50 caregivers are depressed)
  • Morbidity
  • Financial loss
  • Social isolation
  • Extreme fatigue, stress
  • Anxiety, upset, feeling overwhelmed
  • Mortality
  • Schulz, et al, 1995. The Gerontologist, 35,
    771-791 Ory et al., 1999, The Gerontologist,
    37, 804-815 Schulz Beach, 1999, JAMA, 282,
    2215-2219

9
Clinical Trial Research with Family Caregivers
  • 10 years of research substantiates negative
    consequences of caregiving
  • Clinical trials show
  • Underutilization of services
  • Minimal to modest treatment benefits
  • Interventions not well-described/difficult to
    replicate
  • Need for new models and in-home supportive
    services

10
Stress Health Process Model
  • Stressors
  • Care Recipient Behavior
  • Social Environment
  • Physical Environment

PRIMARY TARGET Environmental Strategies
Targeting Care Recipient, and/or Social and
Physical Environment
Appraisals of Demands and Adaptive Capacities
SECONDARY TARGET Environmental Strategies
Targeting Caregiver Cognitive Skills and Knowledge
Perceived Stress
Negative Physiological, Affective, Behavioral
Response
Schulz R (Ed) Handbook on Dementia Caregiving,
(pp. 33-56), NY Springer.
Increased Risk for Mental/Physical Health Problems
11
Environment as Treatment Modality
  • Based in competence-environmental press model
  • Involves modification to physical, task and
    social dimensions of environments (Barris et al)
  • Purpose
  • Achieve balance between environmental demands
    (press) and person capabilities (competencies)
  • Reduce environmental press to match person
    capabilities
  • Decrease excess disability

12
Competence-environmental Press Model Lawton and
Nahemow 1973
ZONE OF MAXIMUM PERFORMANCE POTENTIAL
high
POSTIVE AFFECT ADAPTIVE BEHAVIOR
ZONE OF MAXIMUM COMFORT
maladaptive behavior
negative affect
COMPETENCE
marginal
adaptation level
marginal
negative affect
maladaptive behavior
low
ENVIRONMENTAL PRESS
weak
strong
13
For Persons with Dementia Use Environmental
Modifications To
  • Decrease disorientation
  • Increase way finding
  • Support functionality
  • Increase activity engagement
  • Increase safety
  • Minimize behavioral disturbances

14
For Family Caregivers Use Environmental
Modifications To
  • Increase personal safety
  • Enhance ability to manage day to day
  • Enhance mastery
  • Decrease stress
  • Decrease need for assistance
  • Decrease amount of time in hands-on supervision

15
Evidence of Effectiveness of Environment Approach
  • Institutional-based research
  • Special Dementia Units
  • Reduction of disruptive behaviors
  • Enhancement of orientation, engagement
  • In-home descriptive studies
  • Family CGs modify homes for safety
  • Families lack information about equipment and
    environmental strategies
  • Calkins, (1989). Design for dementia Pynoos
    Ohta (1991). Occupational Therapy and Physical
    Therapy in Geriatrics, 9, 83-92 Gitlin
    Corcoran, (1996). Technology and Disability, 2,
    112-21.

16
Evidence of Effectiveness of Environment Approach
  • 3 month in-home OT environmental intervention
    (NIA) with 202 caregivers
  • Slows decline in CRs IADL and ADL dependence
  • Enhances CG self-efficacy
  • Decreases upset with ADL dependence and behavior
    disturbances
  • Women benefit more than men caregivers
  • Gitlin, et al., (2001). The Gerontologist, 41,
    4-14.
  • Gitlin, et al., (1999). Family Relations, 48,
    363-372.

17
HOME ENVIRONMENTAL SKILL-BUILDING PROTGRAM(ESP)
  • NIH REACH Multi-site 6 year initiative
  • 6 sites each testing a different intervention
  • Phila site ESP
  • Built on previous dementia study
  • Greater intensity, more systematic, installation
    of equipment
  • Examined broader range of outcomes and validation
    of previous findings

18
Study Design and Assessment Intervals
19
Baseline Characteristics of Sample (N 255)
  • Gender
  • 74.5 female
  • Race
  • 48.2 White
  • 47.8 African American
  • 4 Other
  • Relationship
  • 38.8 Spouses
  • 61.2 Non spouses

20
Sample
  • 255 Caregivers enrolled
  • 190 had 6-month data available
  • 89 experimental, 101 controls
  • 26 rate of attrition

21
Characteristics (cont.)
  • Characteristics MEAN (SD)
  • CG Age 61.01 (14.30)
  • CG Education 12.23 (2.62)
  • Years Caregiving 4.24 (3.77)
  • CR MMSE 12.30 (7.05)
  • CG depression 14.90 (11.6)

22
Environmental Skill-building Program (ESP)
23
Environmental Skill-building Program (ESP)
  • ACTIVE PHASE
  • (6 Months - 5 home visits 1 tele-contact)
  • Education about role of environment and dementia
  • Skills in problem-solving, simplifying the
    environment to address 11 potential problem areas
  • Technical support (e.g., adaptive devices and
    training in use)

24
Intervention Protocol
  • 1st home visit assessment education about
    dementia, identification of problem areas
  • 2nd home visit problem solving about target
    problem (antecedents, behavior, consequences)
  • 3-5th home and telephone contact introduce,
    practice, modify, refine strategies for each
    target problem installation of equipment,
    adaptive devices
  • 6th home visit review strategies, generalize
    process

25
Eleven Target Problems
  • Care Recipient
  • Bathing
  • Toileting
  • Dressing
  • Eating
  • Communication
  • Mobility
  • Catastrophic Reactions
  • Wandering
  • Safety
  • Leisure/IADL
  • Caregiver-centered concerns

26
Percent of Caregivers Who Addressed Problem Area
  • Bathing 30
  • Toileting 30
  • Dressing 14
  • Eating 13
  • Communication 37
  • Mobility 48
  • Catastrophic 24
  • Reactions
  • Wandering 24
  • Safety 44
  • Leisure/IADL 45
  • Caregiver
  • concerns 69

27
Physical Modifications to the Home
  • Install equipment and assistive devices
  • Remove objects
  • Rearrange objects
  • Label objects
  • Color contrast objects
  • Place objects in sequence of use
  • Declutter
  • Corcoran, M., Gitlin, L.N. (1991, Fall/Winter).
    Environmental influences on behavior of the
    elderly with dementia Principles for
    intervention in the home. Occupational and
    Physical Therapy in Geriatrics, 9(34), 5-21.

28
Physical Environment
Bathroom Equipment
  • Tub bench
  • Toilet rail
  • Grab bars
  • Hand held shower
  • Long handled
  • sponge
  • Pictures

29
Physical Environment
Bed rail
30
Physical Environment
  • Clutter
  • Disorientation
  • Agitation
  • Decreased function

31
Physical Environment
  • Decluttering
  • Low demand
  • Appropriate level
  • of stimulation
  • Comfortable and
  • calming

32
Physical Environment
Caregiver Concerns
  • CR confused
  • Inappropriate dress
  • Decreased function

33
Physical Environment
  • Strategies
  • Color contrast
  • Object Placement
  • Previous habits
  • Outcome
  • Increased independence

34
Physical Environment
White commode on white wall
Disorienting cue
Red duct tape for color contrast
35
Physical Environment
Visual Cue to prevent egress
36
Physical Environment
  • Case Scenario
  • Distractible
  • Poor eating
  • Fear of malnutrition
  • First Set of Strategies
  • Red placemat
  • White plate
  • One food item
  • Cereal
  • Spoon

37
  • Use of turban
  • Culturally appropriate
  • Preservation of role
  • Reduce distraction

38
Modifications to Task Dimension
  • - Give short verbal/written instructions
  • - Provide verbal/tactile cueing
  • Keep needed items in easy reach
  • Simplify activities
  • - Plan a routine
  • - Instruct CR through demonstration
  • Gitlin, et al., 2002, Strategies Used by Families
    to Simplify Tasks for Individuals with
    Alzheimer's Disease and Related Disorders
    Psychometric Analysis of the Task Management
    Strategy Index (TMSI). The Gerontologist

39
Task Environment
Strategies -Tactile cueing -Short 1 to 2 step
commands
40
  • Task Environment
  • Caregiver complaint
  • CG Back pain
  • Unsure how to involve father in dressing
  • Strategies
  • Verbal cueing
  • Lay out clothing in order
  • Proper body mechanics

41
Task Environment
  • Case Scenario
  • CG no time for self
  • CR bored, agitated
  • Strategies
  • Repetitive motion
  • Simplified task
  • Set up objects
  • Preserved role

42
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43
Task Environment
  • Control center
  • Engagement of CR
  • Rail for balance

44
Modification to Social Dimension
  • - Help coordinate care among social network
  • - Instruct in assertiveness and communication
    skills
  • Help CG develop consistency in interactions with
    CR
  • Help CG involve others in daily care provision

45
Social Dimension
  • Educate children
  • Help with interaction

46
Is ESP Effective?
  • Who Benefits from ESP?
  • - Men vs. women
  • - Spouses vs. non-spouses
  • - African American vs. White

47
Objective Caregiver Burden
  • Does ESP reduce amount of help needed for ADL
    care?
  • How many days in a week have other family
    members or friends (not being paid) provided
    help?

48
Help with ADL Activities
Mean (Geometric) Days of Help with ADL
Activities by Treatment Condition (p.026)
49
Objective Caregiver Burden
  • Does ESP reduce amount of time providing care?
  • About how many hours a day do you estimate that
    you are actually doing things for CR?

50
Total Hours Doing Things for the CRGender Effects
Mean (Geometric) Hours Doing things by Treatment
Condition and Gender (p.041)
51
Subjective Caregiver Burden
  • Does ESP reduce caregiver upset with
  • Memory-related behaviors?
  • Disruptive behaviors
  • - 0 (Not at all) to 4 (Extremely)
  • - Low score indicate less upset

52
Memory-related Behavior Upset
Mean Level of Memory-related Behavior Upset by
Treatment Condition (p.027)
53
Disruptive Behavior UpsetRelationship Effect
Mean Level of Disruptive Behavior Upset by
Treatment Condition and Relationship to CR
(p.018)
54
Enhancement of Well-being
  • Does ESP enhance caregiver affect?
  • In the past month have your feelings of being
    (angry) gotten much worse, somewhat worse, stayed
    the same, improve somewhat, improved a lot?
  • Gitlin, et al (submitted) Caregiver appraisals of
    well
  • being The Perceived Change Index

55
Perceived Change in Affect
Mean Level of Perceived Change by Treatment
Condition (p.038)
56
Enhancement of Skills
  • Does ESP enhance caregiver skills?
  • In the past month have your ability to manage
    day to day caregiving gotten much worse, somewhat
    worse, stayed the same, improve somewhat,
    improved a lot?

57
Ability to Manage Day to DayGender Effects
Treatment by Gender Interaction Effects on
Enhancement Variables (P.043)
58
Enhanced Mastery
  • Does ESP enhance caregivers sense of personal
    mastery?
  • e.g., How often do you feel you should be doing
    more for CR?
  • Lawton, Kleban, Moss, Rovine, Glicksman (1989)
    Measuring caregiver appraisal. Journal of
    Gerontology, 3, P61-P71

59
Mastery Gender Effects
Mean Level of Mastery by Treatment Condition and
Gender (p.046)
60
Summary of Main Treatment Effects
  • Compared to controls ESP
  • Reduces upset with memory-related behaviors
    (subjective burden)
  • Decreases help received from family/friends
    (objective burden)
  • Improves affect (enhancement)

61
Summary of Treatment Interaction Effects
  • Decrease in time spent in vigilance for men who
    receive ESP
  • Reduced upset with disruptive behaviors for
    spouses who receive ESP
  • Improved affect, management ability and mastery
    for women who receive ESP

62
No Treatment or Interaction Effects for
  • CR behavioral occurrences
  • CR level of ADL/IADL functioning
  • White versus African American caregivers

63
So What?
  • Implications for Caregiver Research
  • Complex picture
  • Subscale analyses offer nuanced understanding
  • Subgroup analyses very important
  • We can describe what happens but not sure why

64
So What?
  • Clinical Implications
  • ESP has positive effects in select domains of
    caregiver well-being
  • Environmental modification important role in
    supporting CG efforts
  • Early intervention may enhance CR daily
    functioning
  • Women and spouses benefit most
  • Environmental approach should be integrated into
    clinical practice with CG-CR dyads

65
Health Policy Supports OT Home Environmental
Interventions
  • Medicare coverage now authorized for treatment of
    Alzheimers Disease
  • Occupational therapy and physical therapy
    allowable
  • Modification to home environments allowable
  • New York Times, Vol. CLI, 2002

66
Clinical Guidelines for Implementing ESP
  • Observe each room of home
  • Evaluate individual capabilities, family concerns
    and home environmental features
  • Involve family members and if possible the person
    with dementia in the evaluative and
    decision-making process
  • Introduce small, incremental changes to the home
    environment
  • Use validation, reevaluate with caregiver what
    works/what doesnt/make adjustments accordingly

67
Guidelines (continued)
  • Use role play/demonstration to instruct in use of
    new strategy
  • Readjust environmental strategies based on family
    feedback as to what works best
  • Provide family with information about the disease
    and how to obtain other environmental strategies
    in the future
  • Gitlin, L. N., (2001). Effectiveness of Home
    Environmental Interventions for Individuals with
    Dementia and Family Caregivers, Home Health Care
    Consultant

68
(No Transcript)
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