The Environmental Skill-building Program: A Proven Home-based Occupational Therapy Intervention for Families and Individuals with Dementia

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1 The Environmental Skill-building Program: A Proven Home-based Occupational Therapy Intervention for Families and Individuals with Dementia Laura N. Gitlin, Ph.D. Director, Jefferson Center for Applied Research on Aging and Health Thomas Jefferson University, Philadelphia Prepared for ASA/NCOA Carter Workshop March 19, 2009

2 Funding Sources Original Randomized Trial Research: National Institute on Aging National Institute on Nursing Research National Institute of Mental Health PA Dept. of Health, Tobacco Settlement Funds Translational Research: Carter/Johnson & Johnson Administration on Aging Farber Family Foundation

3 WHAT IS ESP+? Theory-driven: Stress process theories Competence-environmental environmental press and environmental vulnerability frameworks Tested using randomized trial methodology: Community-based families in Philadelphia region Close to 800 families of individuals with mild to moderate/severe dementia Delivered by occupational therapists trained in ESP+ in homes of families Targets families of individuals with mild to moderate-severe stages of dementia

4 Evidence Supporting ESP Benefits to Individuals with Dementia include: Decreased frequency of behavioral occurrences Maintain ability to engage in activities of daily living over Gitlin, et al., (2005). Maintenance of effects of the home environmental skill- building program for family caregivers and individuals with Alzheimer s s disease and related disorders. Journal of Gerontology: Medical Sciences, 60A(3),, ; 374; Gitlin, et al., (2001). A randomized, controlled trial of a home environmental intervention: Effect on efficacy and a upset in caregivers and on daily function of persons with dementia. The Gerontologist, 41,,

5 Evidence Supporting ESP Benefits to Family Caregivers include: Enhanced family caregiver skills Communication Use of environmental and task simplification Home safety Enhanced caregiver sense of mastery and confidence in managing day-to to-day Reduced caregiver upset with behaviors Reduced burden and depression Reduced time spent on duty for male caregivers Enhanced benefits for females and spouses Gitlin, et al. (2003). Effects of the Home Environmental Skill-building Program on the Caregiver- Care Recipient Dyad: Six-month Outcomes from the Philadelphia REACH Initiative. The Gerontologist, 43(4), ; 546; Gitlin, et al., (2001). A randomized, controlled trial of a home environmental intervention: Effect on efficacy and upset in caregivers and on daily function of persons s with dementia. The Gerontologist, 41,,

6 Home-based Delivery Characteristics Up to 10 sessions over 4 to 6 months Each session about 60 minutes 3 to 5 caregiver-identified identified problem areas are typically addressed Sessions scheduled flexibly based on caregiver needs and training considerations

7 Common Caregiver Concerns Addressed in ESP Resistance to care Behavioral symptoms (repetitive vocalizations, shadowing, wandering etc) IADL and ADL difficulties Mobility limitations and transfers Providing meaningful activities Caregiver-centered concerns: No time for self Feeling overwhelmed, upset, stressed Need for respite Difficulties coordinating care Difficulties with other family members Balancing care with other family or work responsibilities

8 Core Treatment Principles Client-centered Culturally relevant Tailored/customized Active learning techniques Problem-solving oriented Chee, Y., Gitlin, L. N. & Dennis, M. P. & Hauck, W. W. (2007). Predictors of caregiver adherence to a skill-building intervention among dementia caregivers. Journal of Gerontology Medical Sciences, 62(6),,

9 Intervention Components Assessments Home Safety Supportive features Individuals with dementia Functional ability Activity engagement Behavioral challenges Caregivers Emotional well-being Daily routines Areas of concern Understanding of dementia Communication (dyadic interactions)

10 Intervention Components Education about dementia Problem solving: Problem identification Problem solving and brainstorming strategies Introduction of strategies tailored to caregiver- identified problem area Communication (removal of negative and practice of positive tactile, verbal and written cueing) Environmental modification low cost adaptive equipment, removal of clutter, rearrangement of physical objects Simplifying everyday activities Activities (pleasant activities graded to abilities) Taking care of self (Healthy behaviors; Stress reduction)

11 Caregiver Skill-building ACTION PLAN 1. Simplify task 2. Communicate 3. Environment 4. Activity Customized Action Plan: Introduces four types of strategies Treatment goals When and how to practice strategies Action plan introduced through role play or demonstration: Over time, strategies reinforced, reevaluated, refined

12 Role of the Physical Environment

13 Enhancing Way Finding and Decreasing Agitation Caregiver Concerns: Disorientation Agitation Decreased function Trying to leave home

14 roviding a Calming nvironment Decluttering Low demand Appropriate level of stimulation Comfortable and calming

15 Visual Cues in the Environment

16 Reducing Confusion and Dependence Caregiver Concerns Confusion Inappropriate dress Decreased function

17 Use of Color Coding Strategies: Color contrast Object Placement Previous habits Outcome: Increased independence

18 Visual Cues White commode on white wall Disorienting cue Red duct tape for color contrast

19 Visual Cue to prevent egress

20 Case Scenario Distractible Poor eating Fear of malnutrition Enhancing Nutritional Intake and Eating Independence First Set of Strategies Red placemat White plate One food item Cereal Spoon

21 Use of turban Culturally appropriate Preservation of role Reduce distraction

22 Enhancing Caregiver Communication Skills Strategies -Tactile cueing -Short 1 to 2 step commands

23 Simplifying Tasks Caregiver complaint: Back pain Unsure how to involve father in dressing Strategies: Verbal cueing Lay out clothing in order Proper body mechanics

24 Decreasing Boredom and Agitation Case Scenario CG no time for self CR bored, agitated Strategies Preserved role Repetitive motion Set up objects Simplify task

25 Enhancing Meaningful Engagement

26 Enhancing Meaningful Engagement Control center Engagement Rail for balance

27 Mother and Daughter

28 Communication and Relaxing Rules

29 Translational Efforts

30 Who is Using ESP+ Fox Geriatric Rehabilitation For-profit company providing house calls In-home occupational and physical therapy services to older adults Medicare Part B: Physician script for therapy required Safety, functional decline, functional training required Area Agency on Aging in NJ Mercer County (in progress) National Family Caregiver Program Jefferson Elder Care, Thomas Jefferson University Medicare Part B Private Pay Foundation sources of support

31 Delivery of ESP by Fox in Home Care Number of OTs trained in ESP = 25 Number of Caregivers in ESP = 29 Funded by R. Carter Institute/Johnson & Johnson Initiative

32 Training in ESP How are occupational therapists/agencies trained? Individuals complete about eight (8) hours of on-line web- based synchronous training and exercises Participate in 1 ½ days of face-to to-face training at TJU or agency Targeted readings to reinforce training On-going conference calls, e and web-based based support Training and licensure fee including need to complete brief documentation of use What does training consist of? Core treatment principles Dementia and behavioral symptoms Role of physical and social environment Family caregiving and its challenges ESP specific assessments and protocols

33 Summary ESP+ designed for family caregivers of individuals at mild-moderate moderate-moderate/severe moderate/severe stages of dementia Designed to build skills in caregivers to manage a wide range of daily care challenges including taking care of themselves and alleviating stress Immutable aspects: Delivered by OT trained in ESP Core treatment principles (tailoring, active involvement etc) Mutable aspects: Length of time and number of sessions Pacing of intervention (linked to caregiver readiness)

34 Contact Information for Training Catherine V. Piersol, MS, OTR/L, Clinical Director, Jefferson Elder Care

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