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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 

Providers Guide to Caring for the Caregiver

State, regional and local programs and services helping older adults remain healthy and independent 

Local Area Agencies on Aging

Area Agency on Aging comprehensive program description with links, for caregivers 

Utah Caregiver Support Program

Informational guide for caregivers to help increase your confidence with your role in caregiving

A Guide for Family Caregivers 2019

Informational guide for primary care providers who are serving older adult patients (65+ years of age)

A Guide for Primary Care Providers 2019

HHAU (Homecare & Hospice Association of Utah) Family Caregiver Division, information about joining the association for free

Family Caregivers

Salt lake County Aging Services guide to caregiving with resources and tools to help with family care planning 

A Caregivers Guide

A website that offers information about services, resources and support for family caregivers 

Agingcare.com

Information about programs that pay caregivers

USA.gov - Caregiver

Comprehensive website page that provides support options and resources for caregivers 

Caring.com

Family Caregiver Alliance provides quality information, support and resources for family caregivers

Caregiver.org

Comprehensive list of Utah’s caregiver resources

Caregiver Utah

U.S. national report about caregiving for people who are waiting for a transplant 

Transplant Caregiving in the US

 

Research and Education

Research from psychologists about the current status of the field of caregiving research 

American Psychological Association

A report documenting caregiving in Utah

Utah Caregiver Report

A document that outlines the needs of Utah caregivers and ways to provide those needs 

Family Caregiving Collaborative

 

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 

RAISE ACT

A website to access tips and best practices for advocacy on public policy issues regarding caregiving

National Council of Aging

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.
Last Updated: 5/15/24