The Environmental Skill-building Program: A Proven Home-based

Occupational Therapy Intervention for Families and Individuals with

Dementia

The Environmental SkillThe Environmental Skill--building building Program: A Proven HomeProgram: A Proven Home--based based

Occupational Therapy Intervention for Occupational Therapy Intervention for Families and Individuals with Families and Individuals with

DementiaDementia

Laura N. Gitlin, Ph.D.Laura N. Gitlin, Ph.D.

Director, Jefferson Center for Applied Research on Director, Jefferson Center for Applied Research on Aging and HealthAging and Health

Thomas Jefferson University, PhiladelphiaThomas Jefferson University, Philadelphia

Laura.gitlin@jefferson.eduLaura.gitlin@jefferson.edu

Prepared for ASA/NCOA Carter Workshop March 19, 2009Prepared for ASA/NCOA Carter Workshop March 19, 2009

Funding SourcesFunding SourcesFunding Sources

Original Randomized Trial ResearchOriginal Randomized Trial Research::

National Institute on AgingNational Institute on Aging

National Institute on Nursing ResearchNational Institute on Nursing Research

National Institute of Mental HealthNational Institute of Mental Health

PA Dept. of Health, Tobacco Settlement FundsPA Dept. of Health, Tobacco Settlement Funds

Translational ResearchTranslational Research::

Carter/Johnson & JohnsonCarter/Johnson & Johnson

Administration on AgingAdministration on Aging

Farber Family FoundationFarber Family Foundation

WHAT IS ESP+?WHAT IS ESP+?WHAT IS ESP+?TheoryTheory--driven:driven:

Stress process theoriesStress process theoriesCompetenceCompetence--environmental press and environmental press and environmental vulnerability frameworksenvironmental vulnerability frameworks

Tested using randomized trial methodology:Tested using randomized trial methodology:CommunityCommunity--based families in Philadelphia based families in Philadelphia regionregionClose to 800 families of individuals with mild to Close to 800 families of individuals with mild to moderate/severe dementiamoderate/severe dementia

Delivered by occupational therapists trained Delivered by occupational therapists trained in ESP+ in homes of familiesin ESP+ in homes of families

Targets families of individuals with mild to Targets families of individuals with mild to moderatemoderate--severe stages of dementia severe stages of dementia

Evidence Supporting ESP Evidence Supporting ESP Evidence Supporting ESP Benefits to Individuals with Dementia include:Benefits to Individuals with Dementia include:

Decreased frequency of Decreased frequency of behavioral occurrences behavioral occurrences

Maintain ability to engage in Maintain ability to engage in activities of daily living over activities of daily living over

Gitlin, et al., (2005). Gitlin, et al., (2005). Maintenance of effects of the home environmental skillMaintenance of effects of the home environmental skill-- building program for building program for family caregivers and individuals with Alzheimerfamily caregivers and individuals with Alzheimer’’s disease and related disorders. s disease and related disorders. Journal of Journal of Gerontology: Medical Sciences, 60A(3)Gerontology: Medical Sciences, 60A(3), 368, 368--374; Gitlin, et al., (2001). A randomized, controlled 374; Gitlin, et al., (2001). A randomized, controlled trial of a home environmental intervention: Effect on efficacy atrial of a home environmental intervention: Effect on efficacy and upset in caregivers and on daily nd upset in caregivers and on daily function of persons with dementia. function of persons with dementia. The Gerontologist, 41The Gerontologist, 41, 4, 4--14.14.

Evidence Supporting ESP Evidence Supporting ESP Evidence Supporting ESP Benefits to Family Caregivers include:Benefits to Family Caregivers include:

Enhanced family caregiver skillsEnhanced family caregiver skills•• CommunicationCommunication•• Use of environmental and task simplificationUse of environmental and task simplification•• Home safetyHome safety

Enhanced caregiver sense of mastery and confidence Enhanced caregiver sense of mastery and confidence in managing dayin managing day--toto--daydayReduced caregiver upset with behaviorsReduced caregiver upset with behaviorsReduced burden and depression Reduced burden and depression Reduced time spent Reduced time spent ““on dutyon duty”” for male caregiversfor male caregiversEnhanced benefits for females and spousesEnhanced benefits for females and spouses

Gitlin, et al. (2003). Gitlin, et al. (2003). Effects of the Home Environmental SkillEffects of the Home Environmental Skill--building Program on the Caregiverbuilding Program on the Caregiver--Care Recipient Dyad: SixCare Recipient Dyad: Six--month Outcomes from the Philadelphia REACH Initiative. month Outcomes from the Philadelphia REACH Initiative. The The GerontologistGerontologist, , 43(4),43(4), 532532--546; 546; Gitlin, et al., (2001). A randomized, controlled trial of a homeGitlin, et al., (2001). A randomized, controlled trial of a home environmental intervention: Effect on environmental intervention: Effect on efficacy and upset in caregivers and on daily function of personefficacy and upset in caregivers and on daily function of persons with dementia. s with dementia. The Gerontologist, The Gerontologist, 4141, 4, 4--14.14.

Delivery Characteristics Delivery Characteristics Delivery Characteristics

HomeHome--basedbased

Up to 10 sessions over 4 Up to 10 sessions over 4 to 6 monthsto 6 months

Each session about 60 Each session about 60 minutesminutes

3 to 5 caregiver3 to 5 caregiver--identified identified problem areas are problem areas are typically addressedtypically addressed

Sessions scheduled Sessions scheduled flexibly based on flexibly based on caregiver needs and caregiver needs and training considerationstraining considerations

Common Caregiver Concerns Addressed in ESP

Common Caregiver Concerns Common Caregiver Concerns Addressed in ESPAddressed in ESP

Resistance to careResistance to care

Behavioral symptoms (repetitive vocalizations, shadowing, Behavioral symptoms (repetitive vocalizations, shadowing, wandering etc)wandering etc)

IADL and ADL difficulties IADL and ADL difficulties

Mobility limitations and transfersMobility limitations and transfers

Providing meaningful activitiesProviding meaningful activities

CaregiverCaregiver--centered concerns:centered concerns:No time for selfNo time for selfFeeling overwhelmed, upset, stressedFeeling overwhelmed, upset, stressedNeed for respiteNeed for respiteDifficulties coordinating careDifficulties coordinating careDifficulties with other family membersDifficulties with other family membersBalancing care with other family or work responsibilitiesBalancing care with other family or work responsibilities

Core Treatment Principles Core Treatment Principles Core Treatment Principles

ClientClient--centeredcentered

Culturally relevant Culturally relevant

Tailored/customized Tailored/customized

Active learning techniques Active learning techniques

ProblemProblem--solving orientedsolving oriented

Chee, Y., Gitlin, L. N. & Dennis, M. P. & Hauck, W. W. (2007). Chee, Y., Gitlin, L. N. & Dennis, M. P. & Hauck, W. W. (2007). Predictors of caregiver Predictors of caregiver adherence to a skilladherence to a skill--building intervention among dementia caregivers. building intervention among dementia caregivers. Journal ofJournal ofGerontology Medical Sciences, 62(6)Gerontology Medical Sciences, 62(6), 673, 673--678.678.

Intervention ComponentsIntervention ComponentsIntervention Components

Assessments Assessments HomeHome•• SafetySafety•• Supportive featuresSupportive features

Individuals with dementia Individuals with dementia •• Functional abilityFunctional ability•• Activity engagement Activity engagement •• Behavioral challengesBehavioral challenges

CaregiversCaregivers•• Emotional wellEmotional well--beingbeing•• Daily routinesDaily routines•• Areas of concern Areas of concern •• Understanding of dementiaUnderstanding of dementia

Communication (dyadic interactions) Communication (dyadic interactions)

Intervention ComponentsIntervention ComponentsIntervention Components

Education about dementiaEducation about dementiaProblem solving:Problem solving:

Problem identificationProblem identificationProblem solving and brainstorming strategiesProblem solving and brainstorming strategies

Introduction of strategies tailored to caregiverIntroduction of strategies tailored to caregiver--identified problem areaidentified problem area

Communication (removal of negative and practice of positive Communication (removal of negative and practice of positive tactile, verbal and written cueing)tactile, verbal and written cueing)Environmental modificationEnvironmental modification•• low cost adaptive equipment, removal of clutter, rearrangement low cost adaptive equipment, removal of clutter, rearrangement

of physical objectsof physical objectsSimplifying everyday activitiesSimplifying everyday activitiesActivities (pleasant activities graded to abilities)Activities (pleasant activities graded to abilities)

Taking care of self Taking care of self (Healthy behaviors; Stress reduction)

Caregiver Skill-buildingCaregiver SkillCaregiver Skill--buildingbuilding

Customized Action Plan:Customized Action Plan:Introduces four types of Introduces four types of strategies strategies Treatment goalsTreatment goalsWhen and how to practice When and how to practice strategiesstrategies

Action plan introduced Action plan introduced through role play or through role play or demonstration:demonstration:

Over time, strategies Over time, strategies reinforced, reevaluated, reinforced, reevaluated, refinedrefined

ACTION PLAN

1. Simplify task 2. Communicate3. Environment4. Activity

Role of the Physical EnvironmentRole of the Physical EnvironmentRole of the Physical Environment

Caregiver Concerns:

•Disorientation

•Agitation

•Decreased function

•Trying to leave home

Enhancing Way Finding and Decreasing Agitation

Decluttering

•Low demand

•Appropriate levelof stimulation

•Comfortable and calming

Providing a Calming Environment

Visual Cues in the Environment

•Decreased function

Reducing Confusion and Dependence

Caregiver Concerns

•Confusion

•Inappropriate dress

Strategies:

•Color contrast

•Object Placement

•Previous habits

Outcome:•Increased independence

Use of Color Coding

Disorienting cue

Red duct tape for color contrast

White commode on white wall

Visual Cues

Visual Cue to prevent egress

Case Scenario•Distractible•Poor eating•Fear of malnutrition

First Set of Strategies•Red placemat •White plate•One food item•Cereal•Spoon

Enhancing Nutritional Intake and Eating Independence

Use of turban

•Culturally appropriate

•Preservation of role

•Reduce distraction

Strategies

-Tactile cueing

-Short 1 to 2 step commands

Enhancing Caregiver Communication Skills

Simplifying Tasks

Caregiver complaint:•Back pain

•Unsure how to involve father in dressing

Strategies:

•Verbal cueing•Lay out clothing in order•Proper body mechanics

Strategies•Preserved role •Repetitive motion•Set up objects•Simplify task

Case Scenario

•CG no time for self•CR bored, agitated

Decreasing Boredom and Agitation

Enhancing Meaningful Engagement

Enhancing Meaningful Engagement

•Control center

•Engagement

•Rail for balance

Mother and DaughterMother and DaughterMother and Daughter

Communication and Relaxing RulesCommunication and Relaxing RulesCommunication and Relaxing Rules

Translational Efforts Translational Efforts Translational Efforts

Who is Using ESP+Who is Using ESP+Who is Using ESP+

Fox Geriatric RehabilitationFox Geriatric RehabilitationForFor--profit company providing house callsprofit company providing house callsInIn--home occupational and physical therapy services to older home occupational and physical therapy services to older adultsadultsMedicare Part B:Medicare Part B:•• Physician script for therapy requiredPhysician script for therapy required•• Safety, functional decline, functional training requiredSafety, functional decline, functional training required

Area Agency on Aging in NJ Mercer County (in Area Agency on Aging in NJ Mercer County (in progress)progress)

National Family Caregiver ProgramNational Family Caregiver Program

Jefferson Elder Care, Thomas Jefferson UniversityJefferson Elder Care, Thomas Jefferson University•• Medicare Part BMedicare Part B•• Private PayPrivate Pay•• Foundation sources of supportFoundation sources of support

Delivery of ESP by Fox in Home CareDelivery of ESP by Fox in Home CareDelivery of ESP by Fox in Home Care

Number of OTs trained in ESP = 25Number of OTs trained in ESP = 25

Number of Caregivers in ESP = 29Number of Caregivers in ESP = 29

Funded by R. Carter Institute/Johnson & Johnson InitiativeFunded by R. Carter Institute/Johnson & Johnson Initiative

Training in ESPTraining in ESPTraining in ESPHow are occupational therapists/agencies trained?How are occupational therapists/agencies trained?

Individuals complete about eight (8) hours of onIndividuals complete about eight (8) hours of on--line webline web--based synchronous training and exercisesbased synchronous training and exercisesParticipate in 1 Participate in 1 ½½ days of facedays of face--toto--face training at TJU or face training at TJU or agency agency Targeted readings to reinforce trainingTargeted readings to reinforce trainingOnOn--going conference calls, egoing conference calls, e--mail and webmail and web--based support based support Training and licensure fee including need to complete brief Training and licensure fee including need to complete brief documentation of use documentation of use

What does training consist of?What does training consist of?Core treatment principles Core treatment principles Dementia and behavioral symptomsDementia and behavioral symptomsRole of physical and social environmentRole of physical and social environmentFamily caregiving and its challengesFamily caregiving and its challengesESP specific assessments and protocols ESP specific assessments and protocols

SummarySummarySummary

ESP+ designed for family caregivers of individuals at ESP+ designed for family caregivers of individuals at mildmild--moderatemoderate--moderate/severe stages of dementiamoderate/severe stages of dementia

Designed to build skills in caregivers to manage a Designed to build skills in caregivers to manage a wide range of daily care challenges including taking wide range of daily care challenges including taking care of themselves and alleviating stresscare of themselves and alleviating stress

Immutable aspects:Immutable aspects:Delivered by OT trained in ESPDelivered by OT trained in ESPCore treatment principles (tailoring, active involvement etc)Core treatment principles (tailoring, active involvement etc)

Mutable aspects:Mutable aspects:Length of time and number of sessionsLength of time and number of sessionsPacing of intervention (linked to caregiver readiness) Pacing of intervention (linked to caregiver readiness)

Contact Information for TrainingContact Information for TrainingContact Information for Training

Catherine V. Piersol, MS, OTR/L, Clinical Catherine V. Piersol, MS, OTR/L, Clinical Director, Jefferson Elder CareDirector, Jefferson Elder Care

Catherine.piersol@jefferson.eduCatherine.piersol@jefferson.edu

215215--503503--9509 9509