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In 2022, the National Strategy to Support Family Caregivers was launched to bolster the support available to over 53 million family caregivers and more than 2.7 million grandparent and kinship caregivers across the United States. Caregivers offer crucial support and long-term care to aging family members, people with disabilities, and those with chronic health conditions. They form a diverse group, ranging from young adults to seniors, and from those with disabilities to those without, all united by their shared role in providing essential care.
The Strategy was developed by the RAISE (Recognize, Assist, Include, Support & Engage) Act Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren. It recognizes the vital role of family caregivers, especially when formal caregiving systems are unavailable. Family caregivers often shoulder a wide range of responsibilities, including meal preparation, transportation, household chores, personal care, educational support, medical tasks, administrative duties, language translation, and even informational technology support.
With nearly 500 actionable steps, the Strategy aims to be a blueprint for all levels of government, as well as the public and private sectors, to ensure that family caregivers—who provide the majority of long-term care in the U.S.—have the resources they need to maintain their health, well-being, and financial security while continuing their essential caregiving roles. Without this unpaid care, millions of older adults and people with disabilities would be unable to live independently in their communities, and replacing this care with paid services would cost an estimated $600 billion annually.
The Strategy is anchored by five key goals: increasing awareness and outreach to caregivers, building partnerships and engagement with family caregivers, strengthening services and supports, ensuring financial and workplace security, and expanding data collection, research, and evidence-based practices. This fall, a report is expected to be released, providing an update on the progress made since the Strategy's implementation.
Wendy Fox-Grage, a senior director on the National Academy for State Health Policy’s (NASHP) Aging and Disability Team, is deeply involved in long-term services and supports, family caregiving, and palliative care. NASHP, a non-profit organization funded by The John A. Hartford Foundation, hosts the RAISE Act Family Caregiver Implementation and Technical Assistance Center to collaborate with the Administration for Community Living and to work with states in supporting family caregivers.
“Since the National Strategy contains hundreds of actions that federal, state and local governments, businesses, and communities can take to support caregivers, NASHP and its partners created SupportCaregiving.org where they can find out what to do to help caregivers achieve the balance and stability they need for their families — and for themselves,” said Fox-Grage. The website also serves as a valuable resource for state officials, providing policy strategies, case studies, and state-specific information that apply to family caregiving.
In Illinois, statewide initiatives aim to increase public awareness of caregiver needs and the resources available throughout the state. Sandra Pastore, Division Manager of Home and Community Services at the Illinois Department on Aging, emphasizes the importance of promoting engagement in person-centered, trauma-informed, and evidence-based programs and services. “We encourage anyone looking for family caregiving resources to visit our website, which offers information on caregiver training, a senior helpline, legal assistance, transportation services, and a map of local Area Agencies on Aging,” says Pastore.
AgeOptions, an Area Agency on Aging serving suburban Cook County, Illinois, is a non-profit organization that partners with communities to provide services and support to older adults and their caregivers. In FY 2023, AgeOptions served 230,976 older adults and their caregivers.
“When a caregiver reaches out to AgeOptions, we start with a tailored care assessment,” explains Diane Slezak, President and CEO of AgeOptions. Conducted by a social worker, this assessment identifies the stress points the caregiver is experiencing so that appropriate services can be offered to alleviate that stress. Slezak provides an example: “If a mother-in-law moves into the home of her son and daughter-in-law, the family may need counseling on how to adjust to the new living arrangement or how to welcome grandma into the home. Or perhaps the caregiver simply needs a support group, which we can connect them with. Respite care is another service we frequently provide.”
Slezak shares that 91% of caregivers report maintaining or improving their mental health status between the initial assessment and a follow-up six months after AgeOptions connects them with services. She also notes a significant reduction in identity discrepancy—the feeling that caregivers lose their original identity as a daughter, wife, friend, or neighbor and instead feel like their sole purpose is to provide care. When identity discrepancy occurs, caregivers are more likely to place their loved ones into managed care facilities.
“Respite care helps, but its benefits are short-lived. It’s like a vacation—you feel refreshed for a bit, but soon it feels like you never left,” Slezak explains. She emphasizes that participating in support groups and learning how to address the specific needs of the person being cared for can significantly reduce identity discrepancy. “Often, caregivers are tasked with responsibilities they’ve never handled before, like managing a drainage tube or caring for someone with dementia. Not knowing how to do these things is a major source of stress,” she says.
Slezak also highlights several online resources available through AgeOptions, including Trualta, an interactive eLearning platform that helps people manage caregiving for aging adults at home. Trualta, a nationwide resource, offers dozens of online lessons with practical advice, such as how to assist with bathing, toileting, and dressing, balance work and caregiving, manage medications, and more. “Trualta is a treasure trove of resources for caregivers,” Slezak says. “It has articles, links to podcasts, listings of support groups, and much more.”
Additionally, Slezak mentions the Illinois Family Caregiver Coalition, funded by the RRF Foundation for Aging and the Illinois Department on Aging, which works to create an inclusive, statewide, non-partisan coalition to support unpaid and informal caregivers. Their website includes numerous resources, such as lists of Area Agencies on Aging and personal stories from family caregivers about their experiences, challenges, and insights for policymakers.