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
- Developer and Distributor Survey
- Manuals Review
- Delivery Site Survey
- 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 |
![]() |
![]() |
![]() |
![]() |
![]() |
![]() |
![]() |
![]() |
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)
Return to
National Alzheimer's Project Act Home Page
Advisory Council on Alzheimer's Research, Care, and Services Page
Advisory Council on Alzheimer's Research, Care, and Services Meetings Page