Laura N. Gitlin, Ph.D. Director, Jefferson Center for Applied Research on Aging and Health

1. Environmental Skill-building Program (Skills2Care™) A Proven Home-based Occupational Therapy Intervention for Families of Individuals with Dementia Laura N. Gitlin, Ph.D. Director, Jefferson Center for Applied Research on Aging and Health Thomas Jefferson University, Philadelphia Laura.gitlin@jefferson.edu Prepared for Rosalynn Carter Institute Webinar August 16, 2010

2. Outline • The evidence – who benefits? • What is Skills2Care™ ? • Training Requirements • Organizational requirements • How to sustain the program? • Questions

3. A NEW NAME Environmental Skill-building Program is now called Skills2Care™

4. 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

5. Who Benefits?

6. Benefits to Individuals with Dementia • Decrease frequency of behavioral occurrences • Reduced functional dependence • Enhanced engagement and quality of life Gitlin, et al., (2005). Maintenance of effects of the home environmental skill- building program for family caregivers and individuals with Alzheimer’s disease and related disorders. Journal of Gerontology: Medical Sciences, 60A(3), 368-374; 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 with dementia. The Gerontologist, 41, 4-14.

7. Benefits to Family Caregivers • Enhances family caregiver: • Skill to use effective communications • Skill using simplification strategies • Confidence managing day-to-day • Well-being (particularly for spouses and women) • Reduces family caregiver: • Upset with behaviors • Burden and depression • Time spent “on duty” for male caregivers in particular 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), 532-546; 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 with dementia. The Gerontologist, 41, 4-14.

8. WHAT IS Skills2Care™ ?

9. A Program to enhance skills of family caregivers to provide care for individuals with dementia and manage the everyday challenges of caregiving • Theory-driven: • Stress process theories • Competence-environmental press and environmental vulnerability frameworks • Tested using randomized trial methodology: • Community-based families in Philadelphia region • Over 1000 families of individuals with mild to moderate/severe dementia

10. Core Treatment Principles • Client-centered • Culturally relevant • Tailored/customized • Active learning techniques • Problem-solving oriented

11. Home-based Flexible visit schedule depending upon service context Recommended 6 session but can range up to 10 sessions over 3 to 6 months Each session 60 to 90 minutes Sessions scheduled flexibly based on caregiver needs, OT training considerations and service setting requirements 3 to 5 caregiver-identified problem areas are typically addressed Delivery Characteristics

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

13. Intervention Components • 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) • Environment (low cost adaptive equipment, removal of clutter, rearrangement of physical objects) • Tasks (simplifying everyday activities) • Activities (pleasant activities graded to abilities) • Taking care of self (Healthy behaviors; Stress reduction) • Education about dementia

14. Caregiver Skill-building • Customized Action Plan introduces four types of strategies • When and how to practice strategies • Introduced through role play and demonstration ACTION PLAN 1. Simplify task 2. Communicate 3. Environment 4. Activity

15. Session-by-Session Overview • Session 1 • Assessment • Building rapport • Identification of problems most distressful to caregiver • Education about disease and caregiving • Stress reduction technique • Session 2 • Problem-solving/brainstorming process • Introduction and practice of strategies • On-going education • Strategies for taking care of self • Session 3-5 • Refine strategies for first problem area • Identify new problem/ problem-solving/brainstorming process • On-going education • Stress reduction • Session 5-6 • Refine strategies • Validation and evaluation of what works and why • Generalize strategies learned to new problem areas and future challenges

16. Case Examples

17. Reducing Confusion and Dependence Caregiver Concerns • Confusion • Inappropriate dress • Decreased function

18. Use of Color Coding Strategies: • Color contrast • Object Placement • Previous habits Outcome: • Increased independence

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

20. Visual Cues Visual Cue to prevent egress

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

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

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

24. Case Scenario • Caregiver has no time for self • Does not know how to occupy Wife • Concerned about poor quality of life Strategies • Activities with repetitive motion • Simplify all task • Set up objects in field of vision • Preserve wife’s role as homemaker

25. Training Requirements

26. Requirements • Licensed occupational therapists • Training and certification in program • License agreement with agency

27. 4 Training Components • Assigned targeted readings based on knowledge test (about 4 hours independent readings) • Individual completion of up to eight (8) hours of on-line web-based asynchronous training • 1½ days of face-to-face training on site at agency • Follow-up group conference calls for coaching and case presentations • E-mail support also available

28. Training Costs • Certification • $2,000 per occupational therapist trained • After 2 years, $200 for recertification • On-going access to website and all materials • Agency • Free licensure agreement that outlines use of program name and delivery restricted to OTs trained and certified in program

29. Organizational Readiness • Access to occupational therapists: • On Staff • Contracting with independent contractors • Home care agency • Mechanism for outreach and enrolling families • Resources for local referrals for depression and other related caregiver issues (financial planning) that OTs can introduce if necessary • Oversight of quality of delivery: • Skills2Care™ has built in fidelity measures • Plan for sustainability – how will program be supported over time?

30. Reimbursement Potential ofSkills2Care™ National Family Caregiver Act Medicare Part B Medicare Part A New Dementia Care Service • Skills2Care as part of a comprehensive dementia care service Skills2Care Embedded in Patient care Skills2Care Embedded in Patient care Skills2Care (caregiver only) Gitlin et al., in press TG

31. Who is Using Skills2Care™ • Fox Geriatric Rehabilitation • For-profit company providing house calls using Medicare Part B: • Holy Redeemer Home Care Agency using Medicare Part A • St. Augustine, Florida Social Service Organization using combination of funding sources • University of Toronto OT group through grant support • Area Agency on Aging in NJ Mercer County • National Family Caregiver Program • Jefferson Elder Care, Thomas Jefferson University • Medicare Part B • Private Pay • Foundation sources of support

32. Contact Information for Training Catherine V. Piersol, MS, OTR/L, Clinical Director, Jefferson Elder Care Catherine.piersol@jefferson.edu 215-503-9509

33. QUESTIONS

34. Select Key References • Gitlin, L. N., Jacobs, M., & Vause-Earland, T. (2010). Translation of a dementia caregiver intervention for delivery in homecare as a reimbursable Medicare Service: Outcomes and lessons learned. The Gerontologist, doi: 10.1093/geront/gnq057. • Gitlin, L. N., Winter, L., Dennis, M. P. (Summer, 2010). Assistive devices to help manage behavioral symptoms of dementia: What do caregivers use and find helpful? Special issue in honor of Dr. Fozzard, Gerontechnology, 9 (3), 408-414. • Gitlin, L. N., Hauck, W. W., Dennis, M. P. & Winter, L. (2005). Maintenance of effects of the home environmental skill-building program for family caregivers and individuals with Alzheimer’s disease and related disorders. Journal of Gerontology: Medical Sciences, 60A(3), 368-374. • Gitlin, L. N., Winter, L., Corcoran, M., Dennis, M., Schinfeld, S. & Hauck, W. (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), 532-546. • Gitlin, L. N., Schinfeld, S., Winter, L., Corcoran, M. & Hauck, W. (2002). Evaluating home environments of person with dementia: Interrater reliability and validity of the home environmental assessment protocol (HEAP). Disability and Rehabilitation, 24, 59-71. • Gitlin, L. N. Winter, L., Dennis, M., Corcoran, M, Schinfeld, S. & Hauck, W. (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, 42, 61-69. • Gitlin L. N., Corcoran, M., Winter, L., Boyce, A. & Hauck, W. (2001). A randomized, controlled trial of a home environmental intervention: Effect on efficacy and upset in caregivers and on daily function of persons with dementia. The Gerontologist, 41, 4-14. • Gitlin, L. N. & Corcoran, M. (2000). Making homes safer: Environmental adaptations for people with dementia. Alzheimer’s Care Quarterly, 1, 50-58.