Advisory Council October 2019 Meeting Presentation: Best Practice Caregiving

10/21/2019

ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES

Monday, October 21, 2019

Printer Friendly Version in PDF Format (10 PDF pages)

 

Best Practice Caregiving: Guiding Organizations Dementia Programs for Family Caregivers

David M. Bass, PhD,
Senior Vice President & Senior Research Scientist
Benjamin Rose Institute on Aging

Project Team

  • Benjamin Rose Institute on Aging
    • David Bass, Principal Investigator
    • Julie Rentsch, Project Director
    • Alyssa Ciancibello and Rachel Schaffer, Research Analysts
  • Family Caregiver Alliance
    • Kathleen Kelly, Co-Principal Investigator
    • Leah Eskenazi, Website Manager
  • The Gerontological Society of America
    • Katie Maslow, Co-Principal Investigator

Funders

  • The John A. Hartford Foundation
  • Archstone Foundation
  • The Retirement Research Foundation

Best Practice Caregiving

  • Online tool on Family Caregiver Alliance Website
  • Public launch November 2019
  • Goal: To increase knowledge and adoption of non-pharmacological, evidence-based programs for family and friend caregivers by healthcare and community service organizations

Builds upon a Major Advance in Caregiving

  • Development and testing of many non-pharmacological programs that have proven benefits for family or friend caregivers
  • Some programs also have proven benefits for persons living with dementia
  • Some programs are ready for broad scale community implementation

National Academies of Sciences, Engineering, and Medicine, Committee on Family Caregiving for Older Adults, Board on Health Care Services, Health and Medicine Division (2016). Schulz R. and Eden J., editors. Families Caring for an Aging America. Washington (DC): National Academies Press (US).

Examples of Assistance Programs Offer

Assessing and/or managing symptoms and caregiving Managing daily tasks and activities
Accessing or monitoring medical care Providing end-of-life care
Understanding symptoms, diagnosis, and/or prognosis Involving and coordinating help from family and friends
Planning for care Finding, accessing and coordinating services
Communicating effectively with persons with dementia Dealing with transitions in care and caregiving
Dealing with legal and/or financial issues Relationship between caregiver and person receiving care
Coping with illness and/or caregiving Maintaining health and wellness

Limited Program Availability

  • Despite proven benefits, most proven programs are not currently offered by healthcare and community organizations
  • Most are not available to families
  • Problem - Many professionals do not know about these programs
    • No easy-to-use comprehensive, updated information source
    • Limited and/or difficult to find information in published articles on implementation characteristics
      • Manuals
      • Characteristics of delivery staff
      • Training for delivery staff
      • Costs to deliver

Maslow, K. (2012). Translating innovation to impact: Evidence-based interventions to support people with Alzheimer’s disease and their caregivers at home and in the community. Administration on Aging and Alliance for Aging Research.

National Academies of Sciences, Engineering, and Medicine, Committee on Family Caregiving for Older Adults, Board on Health Care Services, Health and Medicine Division (2016). Schulz R. and Eden J., editors. Families Caring for an Aging America. Washington (DC): National Academies Press (US).

Best Practice Caregiving - Part of the Solution

  • Easy-to-use online tool for professionals
  • 42 proven dementia caregiving programs
  • For each program it includes:
    • Comprehensive program profile
    • Detail on implementation features
    • Experiences of current delivery sites
    • Characteristics of and findings from research studies
    • Complete program bibliographies
    • Contact information for developers or distributors

Best Practice Caregiving – Program Eligibility

  • 1 or more completed randomized or non-randomized controlled trial, or pre/post-test study with no control group
    • Sample with at least 50% dementia caregivers
    • Conducted in US
    • At least 1 statistically significant, published, beneficial caregiver outcome
  • 1 or more implementation that delivered the program as part of an organization’s regular service portfolio
  • Availability of permission/license to offer the program and required delivery tools (e.g., manuals, training, record keeping systems)

Guiding Principles - Best Practice Caregiving

  • Inclusive definition of “Evidence-Based”
  • Provide detailed information; not subjective ratings
  • Focus on:
    • Program and implementation characteristics
    • Experiences of delivery sites
    • Basics about the research (e.g., design, outcomes)
    • All the information needed for organizations to take the next step toward adoption
  • Must be sustainable
  • Identify gaps for new program development

Methodology for Program Profiling

  1. Developer and Distributor Survey
  2. Manuals Review
  3. Delivery Site Survey
  4. Studies Review

42 Programs for Dementia Caregivers

1. Active Caregiving: Empowerment Skills (ACES) 15. Early-Stage Partners in Care (EPIC) 29. Savvy Caregiver
2. Acquiring New Skills While Enhancing Remaining Strengths (ANSWERS) 16. Inner Resources for Stress 30. Scott & White Family Caregiver Program (REACH TX)
3. Adult Day Services Plus (ADS PLUS) 17. The Memory Club 31. Skills2Care
4. African-American Alzheimer's Training and Caregiver Support (ACTS-2) 18. Mindfulness Training for Patients with Progressive Cognitive Decline and their Caregivers 32. STAR Caregiver (STAR-C)
5. Aging Brain Center (Collaborative Care) 19. Mindfulness-Based Alzheimer's Caregiving 33. Stress-Busting Program for Family Caregivers
6. Alzheimer's Disease Coordinated Care for San Diego Seniors (ACCESS) 20. Mindfulness-Based Dementia Care 34. Support Health Activities Resources Education (SHARE)
7. At the Crossroads 21. Mindfulness-Based Stress Reduction for Dementia Caregivers 35. Telehealth Education Program for Caregivers of Veterans with Dementia (SUSTAIN)
8. Behavioral Treatment of Insomnia for Caregivers 22. Minds in Motion 36. New Ways for Better Days: Tailoring Activities for Persons with Dementia and Caregivers (TAP)
9. BRI Care Consultation 23. New York University Caregiver Intervention (NYUCI) 37. Tailored Caregiver Assessment and Referral (TCARE)
10. Building Better Caregivers 24. Powerful Tools for Caregivers 38. Telenovela Mirela
11. Building Better Caregivers Online 25. RCI REACH 39. The Unforgettables
12. CALMA: Reach to Caregivers 26. Reducing Disability in Alzheimer's Disease (RDAD) 40. Together We Can!
13. Care of Persons with Dementia in the Environments (COPE) 27. REACH Community 41. UCLA Alzheimer's and Dementai Care (UCLA ADC)
14. Care Partners Reaching Out (CarePRO) 28. REACH VA 42. Yogic Meditation

 

Best Practice Caregiving website screen shot.

 

Best Practice Caregiving website screen shot.

 

Best Practice Caregiving website screen shot.

 

Best Practice Caregiving website screen shot.

 

Best Practice Caregiving website screen shot.

 

Best Practice Caregiving website screen shot.

 

Best Practice Caregiving website screen shot.

 

Best Practice Caregiving website screen shot.

 

Next Steps for Best Practice Caregiving

  • Seeking a two-year dissemination grant
    • Implement marketing and dissemination campaign
    • Update program profiles
    • Add newly identified and newly eligible programs
    • Implement a financial sustainability plan
    • Evaluate impact and refine content
  • Explore possible expansions
    • Develop a consumer version
    • Expand focus areas (e.g., non-US program, programs only for persons with dementia, programs for non-dementia caregivers)

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