Family Caregivers

AARP recently released a report titled “Respite Services: A Critical Support for Family Caregivers,” exploring respite, its impact on family caregivers, and barriers to its use. In this report, AARP reviews federal and state programs that provide and/or pay for respite, including some examples of innovative programs that currently exist in communities. AARP also provides recommendations toward improvements in respite research and offers insights into how some respite programs are being scaled up.

The Profile of Older Americans is an annual summary of the statistics from the U.S. Census Bureau, the National Center for Health Statistics, and the Bureau of Labor Statistics related to older adults in the United States. The Profile illustrates the shifting demographics of Americans age 65 and older and includes information on population growth, marital status, living arrangements, income, employment, and health. This year's report includes a special section on family caregivers.

The Maximizing Independence (MIND) at Home program at Johns Hopkins University provides home and community-based care coordination for individuals and families living with dementia. Through focus groups with Black caregivers, researchers at Johns Hopkins aimed to better understand the unique needs of Black patients and families living with dementia, identify opportunities to improve care delivery, and understand caregivers’ perception of the MIND at Home program. This blog post from The Playbook explains the MIND at Home program and how dementia care coordination programs can better support Black patients and their families.

The 2022 National Strategy to Support Family Caregivers is now available for public comment for 60 days. Comments will be used to inform the ongoing work of two Congressionally mandated caregiving advisory councils, and inform future updates to the strategy. The strategy is intended to serve as a national roadmap for better recognizing and supporting family and kinship caregivers of all ages, backgrounds, and caregiving situations. It includes nearly 350 actions the federal government will take to support family caregivers in the coming years and more than 150 actions that can be adopted at other levels of government and across the private sector to build a system to support family caregivers.

Several states are seeking ways to effectively address the health, economic, and social challenges experienced by family caregivers, especially those from marginalized communities. This brief outlines practical strategies to identify and reach family caregivers used by cross-sector state teams participating in Helping States Support Families Caring for an Aging America, a CHCS initiative made possible by The John A. Hartford Foundation and the Michigan Health Endowment Fund.

The majority of individuals who need long-term services and supports (LTSS) in the United States rely on unpaid assistance from family and friends. The economic value of the unpaid care they provide is estimated to be over $470 billion annually. Unmet needs and waiting lists for Medicaid Home and Community Based Services (HCBS) place significant strain on individuals with disabilities and their families. This report explores how increasing access to HCBS services can reduce out-of-pocket costs for families and strengthen employment and financial wellbeing of family caregivers.

This report summarizes findings from research involving stakeholder organizations working with family caregivers in the private and public sectors. The report includes insights into best practice models and action steps that can be included in the national strategy to meet the RAISE goals. Additional stakeholder groups such as the direct care workforce, county health care providers, employers, aging and disability organizations, faith-based groups, respite care providers, and others participated in a series of individual interviews and group listening sessions.

The National Alliance for Caregiving has published a 2021 national report, "Caregiving in a Diverse America: Beginning to Understand the Systemic Challenges Facing Family Caregivers," which was based on results of the Caregiving in the U.S. 2020 study. The report analyzes the experience of over 800 caregiver respondents of different socioeconomic background, sexual orientation, and gender. The report also includes additional literature on diverse caregiving and research recommendations.

The Better Care Playbook for People with Complex Needs has come out with a new collection about supporting family caregivers. Family caregivers provide care for individuals with complex health needs, including older adults, people living with dementia, and people with disabilities, and are often responsible for taking on medical tasks such as medication management, wound care, and assisting with mobility. This playbook explain what a supportive family caregiving model looks like and how organizations can implement these approaches in their work.

The RAISE Family Cargiving Advisory Council has released its RAISE Act Report to Congress on September 22, 2021. The report includes 26 key recommendations to help develop a national strategy to support family caregivers, including ways that public and private sectors can support the community's changing needs as the nation adapts to COVID-19.