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Innovation in Occupational Therapy Practice Evidence of OT Effectiveness in Working with Family Caregivers 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 # U 01 AG 013265

Research Team Members Co-investigators • Mary Corcoran, Ph. D. , OTR/L • Susan Klein, 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 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 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

Key Facts About Dementia and Caregiving • 4 million+ diagnosed with Alzheimer’s disease or 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 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) 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 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 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 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 ZO N E O F L Competence-environmental Press Model – Lawton and Nahemow 1973 ZO N E O F L M R FO U M M A XI ap ta t M ion PE R l ev AX I ad ZON EO FM l gina ma r el MU A N C E MC PO OM TE N TI FOR A T behav ior POSTIVE AFFECT & ADAPTIVE BEHAVIOR aptive ma l a d negat iv COMPETENCE e af f ec t& high m ar g a in l & io ct hav fe af be e e t iv pt iv a eg ada n l a m r low weak ENVIRONMENTAL PRESS strong

For Persons with Dementia Use Environmental Modifications To: • • • Decrease disorientation Increase For Persons with Dementia Use Environmental Modifications To: • • • Decrease disorientation Increase way finding Support functionality Increase activity engagement Increase safety Minimize behavioral disturbances

For Family Caregivers Use Environmental Modifications To: • • • Increase personal safety Enhance 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

Evidence of Effectiveness of Environment Approach • Institutional-based research: – Special Dementia Units – 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 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 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 Study Design and Assessment Intervals

Baseline Characteristics of Sample (N = 255) • Gender – 74. 5% female • 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 Sample • 255 Caregivers enrolled • 190 had 6 -month data available – 89 experimental, 101 controls • 26% rate of attrition

Characteristics (cont. ) Characteristics – CG Age – CG Education – Years Caregiving – Characteristics (cont. ) Characteristics – 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)

Environmental Skill-building Program (ESP) ACTIVE PHASE (6 Months - 5 home visits & 1 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 • 1 st home visit – assessment; education about dementia, identification of Intervention Protocol • 1 st home visit – assessment; education about dementia, identification of problem areas • 2 nd home visit – problem solving about target problem (antecedents, behavior, consequences) • 3 -5 th home and telephone contact – introduce, practice, modify, refine strategies for each target problem; installation of equipment, adaptive devices • 6 th home visit – review strategies, generalize process

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

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

Physical Modifications to the Home – Install equipment and assistive devices – Remove objects 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(3&4), 5 -21.

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

Physical Environment Bed rail Physical Environment Bed rail

Physical Environment Clutter • Disorientation • Agitation • Decreased function Physical Environment Clutter • Disorientation • Agitation • Decreased function

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

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

Physical Environment Strategies: • Color contrast • Object Placement • Previous habits Outcome: • 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 Physical Environment White commode on white wall Disorienting cue Red duct tape for color contrast

Physical Environment Visual Cue to prevent egress Physical Environment Visual Cue to prevent egress

Physical Environment Case Scenario • Distractible • Poor eating • Fear of malnutrition First 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 Use of turban • Culturally appropriate • Preservation of role • Reduce distraction

Modifications to Task Dimension - Give short verbal/written instructions - Provide verbal/tactile cueing Keep 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

Task Environment Strategies -Tactile cueing -Short 1 to 2 step commands Task Environment Strategies -Tactile cueing -Short 1 to 2 step commands

Task Environment Caregiver complaint: • CG Back pain • Unsure how to involve father 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 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 Task Environment • Control center • Engagement of CR • Rail for balance

Modification to Social Dimension - Help coordinate care among social network - Instruct in 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 Social Dimension • Educate children • Help with interaction

Is ESP Effective? Who Benefits from ESP? - Men vs. women - Spouses vs. 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 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 Mean (Geometric) Days of Help with ADL Activities by Treatment Help with ADL Activities 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 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 Mean (Geometric) Hours Doing things Total Hours Doing Things for the CR Gender Effects 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 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 Mean Level of Memory-related Behavior Upset by Treatment Condition (p=. 027) Memory-related Behavior Upset Mean Level of Memory-related Behavior Upset by Treatment Condition (p=. 027)

Disruptive Behavior Upset: Relationship Effect Mean Level of Disruptive Behavior Upset by Treatment Condition Disruptive Behavior Upset: Relationship Effect 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 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 Mean Level of Perceived Change by Treatment Condition (p=. 038) Perceived Change in Affect Mean Level of Perceived Change by Treatment Condition (p=. 038)

Enhancement of Skills Does ESP enhance caregiver skills? “In the past month have your 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 Treatment by Gender Interaction Effects on Ability to Manage Day to Day Gender Effects Treatment by Gender Interaction Effects on Enhancement Variables (P=. 043)

Enhanced Mastery Does ESP enhance caregiver’s sense of personal mastery? e. g. , “How 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, P 61 -P 71

Mastery: Gender Effects Mean Level of Mastery by Treatment Condition and Gender (p=. 046) Mastery: Gender Effects 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 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 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 No Treatment or Interaction Effects for: • CR behavioral occurrences • CR level of ADL/IADL functioning • White versus African American caregivers

So What? • • Implications for Caregiver Research: Complex picture Subscale analyses offer nuanced 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

So What? • • • Clinical Implications ESP has positive effects in select domains 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

Health Policy Supports OT Home Environmental Interventions • Medicare coverage now authorized for treatment 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 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 · 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