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Laura N. Gitlin, Ph.D. Professor, Department of Occupational Therapy

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

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Laura N. Gitlin, Ph.D. Professor, Department of Occupational Therapy

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  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. 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 Research Team Members

  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. 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

  5. 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

  6. 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

  7. 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, 2215-2219

  8. 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

  9. 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

  10. 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

  11. 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

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

  13. 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

  14. 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.

  15. 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.

  16. 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

  17. Study Design and Assessment Intervals

  18. 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

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

  20. Characteristics (cont.) CharacteristicsMEAN (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)

  21. Environmental Skill-building Program (ESP)

  22. 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)

  23. 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

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

  25. 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% Percent of Caregivers Who Addressed Problem Area

  26. 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.

  27. Physical Environment BathroomEquipment • Tub bench • Toilet rail • Grab bars • Hand held shower • Long handled • sponge • Pictures

  28. Physical Environment Bed rail

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

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

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

  32. Physical Environment • Strategies: • Color contrast • Object Placement • Previous habits • Outcome: • Increased independence

  33. Physical Environment White commode on white wall Disorienting cue Red duct tape for color contrast

  34. Physical Environment Visual Cue to prevent egress

  35. Physical Environment • Case Scenario • Distractible • Poor eating • Fear of malnutrition • First Set of Strategies • Red placemat • White plate • One food item • Cereal • Spoon

  36. Use of turban • Culturally appropriate • Preservation of role • Reduce distraction

  37. 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

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

  39. 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

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

  41. Task Environment • Control center • Engagement of CR • Rail for balance

  42. 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

  43. Social Dimension • Educate children • Help with interaction

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

  45. 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?”

  46. Help with ADL Activities Mean (Geometric) Days of Help with ADL Activities by Treatment Condition (p=.026)

  47. 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?”

  48. Total Hours Doing Things for the CRGender Effects Mean (Geometric) Hours Doing things by Treatment Condition and Gender (p=.041)

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