Transcript The Philadelphia REACH Study Recruitment, Intervention, 6

Innovation in Occupational Therapy Practice
Evidence of OT Effectiveness in Working with Family
Caregivers of Individuals with Dementia
Results 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
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
Overview of Presentation
• Quick facts about family caregivers
• Environment as treatment modality
• NIH REACH initiative
• Environmental Skill-building program
• Study outcomes
• Clinical guidelines
• Conclusions
Case Scenario
• 72 year old wife caring for 75 year old husband
with moderate stage dementia:
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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
Key Facts
About Dementia and Caregiving
• 4 million+ diagnosed with Alzheimer’s disease or
related disorder
• 50% + persons >85 years of age have mild
cognitive impairment or dementia
• >50% of persons with dementia cared for at home
• Average course of disease is 8 years
– Range from 4 to 20 years
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
Family Caregivers:
The Hidden Patient
AT RISK FOR:
– Depression (>50% 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, 22152219
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
Stress Health Process Model
Stressors
•Care Recipient Behavior
•Social Environment
•Physical Environment
Appraisals of Demands
and Adaptive Capacities
Perceived Stress
PRIMARY TARGET: Environmental
Strategies Targeting Care Recipient,
and/or Social and Physical
Environment
SECONDARY TARGET:
Environmental Strategies Targeting
Caregiver Cognitive Skills and
Knowledge
Negative
Physiological,
Affective, Behavioral
Response
Increased Risk for
Mental/Physical
Health Problems
Schulz R (Ed) Handbook on Dementia
Caregiving, (pp. 33-56), NY: Springer.
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
Competence-environmental Press Model –
Lawton and Nahemow 1973
high
COMPETENCE
POSTIVE AFFECT & ADAPTIVE
BEHAVIOR
low
weak
ENVIRONMENTAL PRESS
strong
For Persons with Dementia
Use Environmental Modifications To:
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Decrease disorientation
Increase way finding
Support functionality
Increase activity engagement
Increase safety
Minimize behavioral disturbances
For Family Caregivers
Use Environmental Modifications To:
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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
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.
Evidence of Effectiveness of
Environment Approach
3 month in-home OT environmental
intervention (NIA) with 202 caregivers:
• Slows decline in CR’s 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.
HOME ENVIRONMENTAL SKILLBUILDING 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
Study Design and Assessment Intervals
Recruitment
Screening
Baseline Assessment
Randomization
Treatment
Control
6 Months
Post Baseline
Follow-up
Assessment 1
Follow-up
Assessment 1
12 Months
Post Baseline
Follow-up
Assessment 2
Follow-up
Assessment 2
Follow-up
Assessment 3
Follow-up
Assessment 3
18 Months
Post Baseline
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
Sample
• 255 Caregivers enrolled
• 190 had 6-month data available
– 89 experimental, 101 controls
• 26% rate of attrition
Characteristics (cont.)
Characteristics
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CG Age
CG Education
Years Caregiving
CR MMSE
CG depression
MEAN (SD)
61.01 (14.30)
12.23 (2.62)
4.24 (3.77)
12.30 (7.05)
14.90 (11.6)
Environmental Skill-building
Program (ESP)
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)
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
Eleven Target Problems
Care Recipient:
• Bathing
• Toileting
• Dressing
• Eating
• Communication
• Mobility
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Catastrophic Reactions
Wandering
Safety
Leisure/IADL
• Caregiver-centered
concerns
Percent of Caregivers Who Addressed
Problem Area
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Bathing
Toileting
Dressing
Eating
Communication
Mobility
30%
30%
14%
13%
37%
48%
• Catastrophic
Reactions
• Wandering
• Safety
• Leisure/IADL
• Caregiver
concerns
24%
24%
44%
45%
69%
Physical Modifications
to the Home
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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(3&4), 5-21.
Physical Environment
Bathroom Equipment
•Tub bench
•Toilet rail
•Grab bars
•Hand held shower
•Long handled
sponge
•Pictures
Physical Environment
Bed rail
Physical Environment
Clutter
•Disorientation
•Agitation
•Decreased
function
Physical Environment
Decluttering
•Low demand
•Appropriate level
of stimulation
•Comfortable and
calming
Physical Environment
Caregiver Concerns
•CR confused
•Inappropriate dress
•Decreased function
Physical Environment
Strategies:
•Color contrast
•Object Placement
•Previous habits
Outcome:
•Increased independence
Physical Environment
White commode on white wall
Disorienting cue
Red duct tape for color
contrast
Physical Environment
Visual Cue to prevent egress
Physical Environment
Case Scenario
•Distractible
•Poor eating
•Fear of
malnutrition
First Set of Strategies
•Red placemat
•White plate
•One food item
•Cereal
•Spoon
Use of turban
•Culturally appropriate
•Preservation of role
•Reduce distraction
Modifications to
Task Dimension
- Give short verbal/written instructions
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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
Task Environment
Strategies
-Tactile cueing
-Short 1 to 2 step
commands
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
Task Environment
Case Scenario
•CG no time for self
•CR bored, agitated
Strategies
•Repetitive motion
•Simplified task
•Set up objects
•Preserved role
Task Environment
•Control center
•Engagement of CR
•Rail for balance
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
Social Dimension
•Educate children
•Help with interaction
Is ESP Effective?
Who Benefits from ESP?
- Men vs. women
- Spouses vs. non-spouses
- African American
vs. White
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?”
Help with ADL Activities
2.7
Usual Care
Experimental
2.6
2.5
2.4
2.3
2.2
2.1
Baseline
Six Months
Mean (Geometric) Days of Help with ADL Activities by Treatment Condition (p=.026)
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?”
Total Hours Doing Things for the CR
Gender Effects
14.0
Usual Care Males
Experimental Males
Usual Care Females
Experimental Females
13.5
13.0
12.5
12.0
11.5
11.0
Baseline
Six Months
Mean (Geometric) Hours Doing things by Treatment Condition and Gender (p=.041)
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
Memory-related Behavior Upset
5.8
Usual Care
Experimental
5.6
5.4
5.2
5.0
4.8
4.6
4.4
Baseline
Six Months
Mean Level of Memory-related Behavior Upset by Treatment Condition (p=.027)
Disruptive Behavior Upset:
Relationship Effect
5.5
Usual Care Spouses
Experimental Spouses
Usual Care Non-spouses
Experimental Non-spouses
5.0
4.5
4.0
3.5
3.0
2.5
2.0
Baseline
Six Months
Mean Level of Disruptive Behavior Upset by Treatment Condition and Relationship to CR (p=.0
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
Perceived Change in Affect
15.6
Usual Care
Experimental
15.4
15.2
15
14.8
14.6
14.4
14.2
14
Baseline
Six Months
Mean Level of Perceived Change by Treatment Condition (p=.038)
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?”
Ability to Manage Day to Day
Gender Effects
Usual Care Males
Experimental Males
Usual Care Females
Experimental Females
3.3
3.2
3.1
3.0
2.9
Baseline
Six Months
Treatment by Gender Interaction Effects on Enhancement Variables (P=.043)
Enhanced Mastery
Does ESP enhance caregiver’s 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
Mastery:
Gender Effects
24.5
Usual Care Males
Experimental Males
Usual Care Females
Experimental Females
24.0
23.5
23.0
22.5
22.0
21.5
21.0
Baseline
Six Months
Mean Level of Mastery by Treatment Condition and Gender (p=.046)
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)
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
No Treatment or Interaction
Effects for:
• CR behavioral occurrences
• CR level of ADL/IADL functioning
• White versus African American caregivers
So What?
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Implications for Caregiver Research:
Complex picture
Subscale analyses offer nuanced
understanding
Subgroup analyses very important
We can describe what happens but not sure
why
So What?
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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
Health Policy Supports OT Home
Environmental Interventions
• Medicare coverage now authorized for
treatment of Alzheimer’s Disease
• Occupational therapy and physical therapy
allowable
• Modification to home environments
allowable
New York Times, Vol. CLI, 2002
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
doesn’t/make adjustments accordingly
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