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Conversations with GIA

Conversations with GIA. Family Caregiving: New Horizons for Caring Across America. Donna Benton, PhD Director USC FCSC Associate Research Professor of Gerontology Webinar 1/27/2017 Co-Sponsored by The John A. Hartford Foundation, Grantmakers In Health & the Archstone Foundation.

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Conversations with GIA

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  1. Conversations with GIA Family Caregiving: New Horizons for Caring Across America Donna Benton, PhD Director USC FCSC Associate Research Professor of Gerontology Webinar 1/27/2017 Co-Sponsored by The John A. Hartford Foundation, Grantmakers In Health & the Archstone Foundation

  2. USC Family Caregiver Support Centerour website • Vision: To be a model for LA, the state and the nation, by using technology, research, and education to transform caregiving and the long-term care system. • Mission: Helps families and communities master the challenges of caring for persons with brain impairing conditions, such as Alzheimer's disease, stroke, Parkinson’s disease, traumatic brain injury and chronic health issues.

  3. Key Data Reminders • 17.7 Million Family Caregivers of Older Adults* • 8.5 million of these help persons with High-Need • Economic value estimated at $470 billion** SOURCES: • * Data from the 2011 NHATS and the companion NSOC cited Families Caring for an Aging America 2016 • **AARP Public Policy Institute 2015

  4. 25% of care receivers need to be lifted, moved which often results in muscle strain/back pain. 16% of caregivers indicate that their health has worsened since becoming a caregiver. 46% are clinically depressed. 2 to 3 times more likely to use prescription drugs for anxiety, depression, insomnia. 80% of working caregivers report emotional strain. Strains of Caregivers

  5. Feeling apprehensive, trapped or caught Financial strain Role change and reversal Breakdown of support network Caregiving skills / abilities Dealing with the disease itself Family conflicts Stress and Caregiving

  6. Cultural & Ethnic Diversity Explicitly and consistently address families’ diversity in assessing caregiver needs and in developing, testing, and implementing caregiver supports Source: Page 257 Families Caring for an Aging America 2016

  7. The most effective interventions begin with an assessment of caregivers’risks, needs, strengths, and preferences.

  8. Suggested Intervention Areas • Education and Skills training • Counseling • Respite • Relaxation training • Care management • Financial management • Medication and Health

  9. Emphasis on Person-centeredcare needs toevolve into a focus on Person- and family-centered care Source: Page 255 Families Caring for an Aging America 2016

  10. Awareness • Providers have the skills to recognize a caregiver’s presence, assess whether and how the caregiver can best participate in overall care, engage and share information with the caregiver, recognize the caregiver’s own health care and support needs, and refer caregivers to needed services and supports • Source: Page 262 Families Caring for an Aging America 2016

  11. Research/Program Areas • Diverse populations of caregivers and families • Longitudinal • Geographic diversity • Bio-Psycho-Social-Spiritual • Technology

  12. Conversations with GIA January 27, 2017 Family Caregiving: New Horizons for Caring Across America Rani Snyder, MPA, Program Director The John A. Hartford Foundation Webinar Co-Sponsored by The John A. Hartford Foundation, Grantmakers in Health and the Archstone Foundation

  13. The John A. Hartford Foundation VISION AND MISSION Vision • A nation where all older adults receive high-value evidence-based health care, are treated with respect and dignity, and have their goals and preferences honored. Mission • To improve the care of older adults.

  14. Three Priority Areas • Age-Friendly Health Systems • Family Caregiving • Serious Illness/End-of-Life Care

  15. Family Caregiving Study grant National Academies of Sciences Engineering and Medicine & Gerontological Society of America Families Caring for an Aging America September 2016

  16. Family Caregiving Study Goals of Grant: • Consensus Study • Credible national policy & practice-focused recommendations • Dissemination activities footer

  17. Family Caregiving Study Outcomes: 1) Families Caring for an Aging America report Policy and practice recommendations: - Evidence-based interventions - Policy recommendations 2) Dissemination: • 27,000 copies sent • Additional 6,900 report views in first 20 days • 700 registrants for Webinar • Congressional staff briefings 3) In 2017, orient incoming administration footer

  18. Funders Collaborative What • Group of private funders for information sharing How • Regular phone calls • Gathering at GIA Annual Meeting Who • Any private funder interested in the area of Family Caregiving • Examples: • National: The John A. Hartford Foundation, Archstone Foundation, Retirement Research Foundation, RWJF • State/regional: CA Health Care Foundation, Santa Barbara Foundation, Health Foundation for Western & Central NY, Endowment for Health (NH)

  19. Examples of funding opportunities • Dementia Caregiving Network (2) • AARP: 50-state platform • ARCH National Respite Network & Resource Center

  20. Examples of funding opportunities, cont.Dementia Caregiving Network Online Resource for Comparing Evidence-Based Dementia Caregiving Programs • Benjamin Rose Institute on Aging & Family Caregiver Alliance • Goal: To increase knowledge and implementations of programs, and thus increase the number of families who are able to access and benefit from their use. • Online resource will: • Provide health & social service organizations, independent service providers, government and private sector funders with information to help decide which dementia caregiving programs are most appropriate to add to their existing service offerings or to financially support.

  21. Examples of funding opportunities, cont.Dementia Caregiving Network Family Caregiver Representation in Electronic Health Records Strategies for representation in EPIC with Baylor Scott & White Health • Family caregiver information is visible to clinicians • Information reported by the family caregiver is clearly visible to clinicians during all healthcare encounters • Information is located in a structured field that is reportable; • Schedulers and providers can access information Objectives: • Environmental scan re. family caregivers in HIT • Review ongoing BSWH EPIC enhancements • Develop action plan to promote strategies of family caregiver representation in electronic health records.

  22. Examples of funding opportunities, cont.AARP Public Policy Institute & Family CaregivingCARE Act Implementation – Scan of the States Effective in 35 States 2016/2017 Activities: Stakeholder Meeting held in the Summer of 2016 Participants included: Researchers, Hospitals, Caregiver Advocates Site Visits: Understand the implementation process within an individual hospital and share promising practices through publications Leading nurse researchers work with core research teams Visits include interviews with key stakeholders across the hospital: Chief Nurse Officer, Frontline Nurses, Registrars, IT Staff Conversations with Family Caregivers to determine their understanding of the CARE Act and experience as a result of its implementation Goal: Complete Scan of 10-12 States by Q4 of 2017 National Summit and other Focused Convenings to do Deep Dive on Implementation Issues

  23. Examples of funding opportunities, cont.AARP Public Policy Institute & Family Caregiving Home Alone Alliance℠ The Home Alone Alliance seeks to: Promote cultural change in how we support family caregivers. Provide and disseminate instructional tools and other resources aimed at improving instruction for family caregivers who perform complex medical/nursing tasks. Current Activities: Caregiver Instructional Video Production (i.e. Medication Management, Mobility, Wound Care) One-Pager Resource Guides In-Language (Spanish/Chinese) Material Development Policy – CARE Act Implementation Scan

  24. Examples of funding opportunities, cont.Lifespan Respite Technical Assistance Center Report: A Research Agenda for Respite Care: Deliberations of an Expert Panel of Researchers, Advocates and Funders Respite Research Funding Consortium Vision – establish evidence base for respite through rigorous, prospective research on impact on caregiver, care recipient, family & society Funding options – research grants from small to large footer

  25. Thank you! Questions? Comments? Donna Benton, PhD Associate Research Professor of Gerontology, University of Southern California Director, Family Caregiver Support Center benton@usc.edu Rani Snyder, MPA Program Director, The John A. Hartford Foundation Rani.Snyder@johnahartford.org footer

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