Caregiving and Care Partnering
Caregiving
The number of unpaid adults providing caregiving services for older adults is reaching 42 million caregivers. The demographics of this unpaid workforce represent all races and ethnicities, education and income levels, generations, family types, gender identities, and sexual orientations. Many caregivers experience financial impacts and stop saving, incur debt, or use up personal short-term savings. Paid personal care aides are also in very short supply, and the aging population will have a significant impact on the demand for paid and unpaid caregiving services.
UCOA Policy Position:
UCOA advocates for legislation and public policy that recognizes, engages, and supports unpaid family caregivers and personal care assistants, caring for older adults, including the recommendations of the RAISE Act Family Caregiving Advisory Council.
Resources
Comprehensive guide for professionals to direct caregivers to resources and education
State, regional and local programs and services helping older adults remain healthy and independent
Area Agency on Aging comprehensive program description with links, for caregivers
Informational guide for caregivers to help increase your confidence with your role in caregiving
Informational guide for primary care providers who are serving older adult patients (65+ years of age)
HHAU (Homecare & Hospice Association of Utah) Family Caregiver Division, information about joining the association for free
Salt lake County Aging Services guide to caregiving with resources and tools to help with family care planning
A website that offers information about services, resources and support for family caregivers
Information about programs that pay caregivers
Comprehensive website page that provides support options and resources for caregivers
Family Caregiver Alliance provides quality information, support and resources for family caregivers
Comprehensive list of Utah’s caregiver resources
U.S. national report about caregiving for people who are waiting for a transplant
Research and Education
Research from psychologists about the current status of the field of caregiving research
A report documenting caregiving in Utah
A document that outlines the needs of Utah caregivers and ways to provide those needs
Public Policy
The Caregiver Advise, Record, Enable (CARE) Act is a basic first step to engage family caregivers in the hospital setting so they may safely provide care for their loved ones at home — care that can help prevent costly hospital readmissions. The bill:
• Allows a patient to designate a caregiver when admitted into a hospital
• Requires the hospital to notify the family caregiver before the patient is discharged or transferred
• Requires the hospital to provide an explanation and live instruction
The Family Caregiving Advisory Council delivered its initial report to congress about the RAISE Act – Recognize, Assist, Include, Support, and Engage
A website to access tips and best practices for advocacy on public policy issues regarding caregiving
Discussion
- Forty-one million family members have provided care to a family member aged 50+ in the past 12 months (AARP, 2020).
- These caregivers “remain invisible to the healthcare system that relies on them to provide this care” (Reyes, et al., 2021).
- Shifts in the population are reshaping who provides the care and the specific care needs (Reyes, et al., 2021).
Policy Recommendations
- Some states have enacted Caregiver Advise, Record and Enable (CARE) acts which formally document caregivers in the patient record and require hospitals to provide notice of the patient’s discharge and discharge instructions to the caregiver.
- Expansion of end of life care. Modifications to palliative and hospice care requirement would allow for more individuals to take advantage of end of life services, reducing the caregiver burden.
- Insurance coverage for Long-term Services and Supports (LTSS). Washington state enacted the Long-Term Care Trust Act, first state run long term care insurance program.
- Expansion of technological innovations, particularly in rural areas and to consumers without transportation.
Discussion
- Raising housing costs have outpaced incomes making it difficult for older adults on fixed incomes to afford housing (Fenelon & Mawhorter, 2021).
- Renters are particularly vulnerable.
Policy Recommendations
- Tax deferment programs for homeowners. Taxes paid by the government and then recovered when the property is sold.
- Foreclosure prevention programs.
- Eviction prevention programs.
- Housing programs combined with supportive services (community health workers or case managers).
Discussion
- Harris-Kojetin, et al (2019) reported 28,900 assisted living residencies serving some 800,000 plus residents in 2018.
- Regulatory oversight is a patchwork of protections.
- States maintain authority to set AL regulations
- COVID-19 brought some attention to some regulatory gaps
Policy Recommendations
- Failure of states to document the impact of COVID-19 in AL facilities, suggests the need for standardization and greater transparency.