The U.S. Department of Health and Human Services, through its Administration for Community Living, recently released the 2022 National Strategy to Support Family Caregivers.
It highlighted nearly 350 actions the federal government will take to support family caregivers in the coming year 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.
Family caregivers – who provide the overwhelming majority of long-term care in the United States– currently lack resources to maintain their health, well-being, and financial security while providing crucial support for others.
Caregiving falls to every segment of our adult population, and the need will only grow as the American population ages and more older adults require care.
People may not know that 40 percent of the 40 million family caregivers in this country are men and close to one in four family caregivers are millennials.
“Supporting family caregivers is an urgent public health issue, exacerbated by the long-term effects of the COVID-19 pandemic,” said HHS Secretary Xavier Becerra. “This national strategy recognizes the critical role family caregivers play in a loved one’s life. I know the importance of this first-hand, as someone who cared for my late father and navigated the challenges associated with caregiving.”
“At some point in our lives, most of us will either be a family caregiver or need one. Many of us will experience both,” said Assistant Secretary for Aging Alison Barkoff. “This strategy presents a vision, along with recommendations for achieving it. Bringing that vision to life will require contributions and commitments from every sector, every level of government – and all of us – and ACL is proud to help lead that work.”
The strategy was developed jointly by the advisory councils established by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act and the Supporting Grandparents Raising Grandchildren (SGRG) Act, with extensive input from family caregivers, the people they support and other stakeholders.
The Administration for Community Living leads the implementation of the RAISE and SGRG Acts and facilitates the work of the two advisory councils.
Each year, around 53 million people provide a broad range of assistance to support the health, quality of life and independence of a person close to them who needs assistance as they age or due to a disability or chronic health condition.
Another 2.7 million grandparent caregivers – and an unknown number of other relative caregivers – open their arms and homes each year to millions of children who cannot remain with their parents.
Millions of older adults and people with disabilities would not be able to live in their communities without this essential support – and replacing it with paid services would cost an estimated $470 billion each year.
While family caregiving is rewarding, it can be challenging, and when caregivers do not have the support they need, their health, wellbeing and quality of life often suffer. Their financial future can also be put at risk; lost income due to family caregiving is estimated at $522 billion each year.
When the challenges become overwhelming and family caregivers no longer can provide support, the people they care for often are left with no choices except moving to nursing homes and other institutions or to foster care – the cost of which is typically borne by taxpayers.
The strategy represents the first time a broad cross-section of the federal government has collaborated with the private sector on a response to the longstanding national need for a comprehensive system of family caregiver support.
It is the product of comprehensive analysis and input from 15 federal agencies and more than 150 organizations representing a range of stakeholders from across the nation. It builds upon the initial reports delivered to Congress in 2021 by the RAISE Family Caregiving Advisory Council and the SGRG Advisory Council.
“This strategy exemplifies our commitment to achieving health equity and providing better support to caregivers.” said CDC Acting Principal Deputy Director Debra Houry, MD, MPH. “Providing fast, readily available data can help to identify and implement strategies to reduce the challenges and needs caregivers often face.”
“Supporting family caregivers is commonsense, since most people will at some point in their lives be a family caregiver, need a family caregiver, or both. Caregivers are sacrificing for their loved ones and often are standing in the health care gap by providing that care,” said CMS Administrator Chiquita Brooks-LaSure. “Many of the more than 150 million people who receive health care coverage through Medicare, Medicaid, and the Health Insurance Marketplaces® rely on trusted friends and family for care. CMS is committed to advancing home and community-based services and other forms of caregiver support across the lifespan to give caregivers the recognition and resources they need and deserve.”
“Family caregivers continue to be the life-sustaining force of our health care system – a fact that became even more clear during the pandemic,” said HRSA Administrator Carole Johnson. “The National Strategy to Support Family Caregivers is an important step forward in valuing their role and recognizing the work necessary to better support family caregivers going forward.”
“Family caregivers play a vital role in supporting people with disabilities and older adults so they can live and thrive in their own homes and communities, and it is time that we take action to champion them,” said Office for Civil Rights Director Melanie Fontes Rainer. “The National Strategy to Support Family Caregivers is a concrete step toward making the right to community living a reality for all people, in keeping with federal law and the Supreme Court’s Olmstead decision.
“America’s family caregivers, whether caring for children, young adults or older relatives, frequently experience high levels of stress, frustration and exhaustion,” said Miriam E. Delphin-Rittmon, Ph.D., Assistant Secretary for Mental Health and Substance Use, and the leader of SAMHSA. “For those caring for people with mental illness or substance use disorders, it can be especially difficult to know where to turn for help. This national strategy lays out the crucial actions we are taking with partners across the country to increase access to the services and supports our families deserve.”
“The importance of relatives and kinship caregivers and their role in helping children thrive cannot be understated. ACF welcomes this National Strategy because it amplifies the actions we can take to support kinship families, and it reflects what we hear every day from caregivers and children living with relatives. Across the country, a child’s ability to rebound from a traumatic experience is often dependent on the swift and loving support from a kinship caregiver. This ACL National Strategy provides a roadmap to support them,” said Assistant Secretary January Contreras, Administration for Children and Families.
“At the Indian Health Service, we support the emotional and spiritual well-being of American Indian and Alaska Native people, especially those who care for our elder population,” said IHS Acting Director Elizabeth Fowler. “The care that caregivers provide can be physically and emotionally demanding and can lead to an increased risk for negative health effects including depression, anxiety and stress. The IHS is committed to working closely with tribes and urban Indian organizations and partnering with agencies across the federal government to support programs that prioritize the health and well-being of caregivers who care for our relatives.”
The strategy will be updated every two years. The updates will be based on public input, as well as the continued work of the advisory councils and communities, states and tribes, and federal agencies that are developing, implementing and adapting policies and programs to support family caregivers.
The 2022 National Strategy to Support Family Caregivers was delivered to the U.S. Senate Committee on Health, Education, Labor and Pensions, the U.S. House Committee on Education and Labor, and to the State agencies responsible for carrying out family caregiver programs. The strategy will be updated every two years, as required by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017 (Public Law 115-119).
The average family caregiver in 2016 spent nearly $7,000 in out-of-pocket expenses, about 20 percent of their income.
Thirty-nine percent of family caregivers struggle with their own health condition or physical limitation, according to an Associated Press-NORC Center for Public Affairs Research survey.
Family caregivers are asked to perform increasingly complex medical tasks, such as wound care, often with little or no training.
“Family caregivers are desperate for help,” Susan Reinhard, RN, PhD, FAAN, senior vice president and director at the AARP Public Policy Institute. “They’re worried about making mistakes, and they don’t know what questions to ask.”