The challenges of being a family caregiver have generally been viewed as a private, personal matter. But in a noteworthy shift, a new report to Congress lays the groundwork for a much-needed national strategy to assist the over 48 million Americans who care for a parent, spouse or other loved one.
Family caregivers provide an immense contribution, often at significant personal cost and with little guidance. Experts have estimated the value of their unpaid services at $470 billion — almost half a trillion dollars. These folks provide in-home medical care and perform nursing tasks, on top of a wide range of duties that include personal care, household chores, coordinating appointments, transportation, meal preparation, shopping — you name it. And that’s not all: 6 in 10 family caregivers also hold down jobs outside the home.
Yet their dedication often leads to burnout, financial loss and social isolation. But there are steps that political leaders can take to support them. For example, AARP worked on a bipartisan, bicameral basis with leaders in Congress to create the Assisting Caregivers Today (ACT) Caucus in 2015, to bring greater attention to family caregiving and helping people live independently, to educate Congress on these issues and to engage legislators on a bipartisan basis to help lead to solutions. AARP also strongly advocated for and led a group of national organizations supporting the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, introduced by Sens. Susan Collins (R-Maine) and Tammy Baldwin (D-Wis.), along with former Rep. Gregg Harper (R-Miss.) and current Rep. Kathy Castor (D-Fla.). The new report from the Family Caregiving Advisory Council brought together by RAISE spotlights a national approach to recognizing caregivers’ critical role.
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The report lays out the following five overarching goals to guide policies to improve the lives of family caregivers and their loved ones.
1. Increasing awareness of family caregivers The diverse needs and challenges of family caregivers are not sufficiently recognized. Caregivers themselves may not stop to think of the support they need. Greater awareness can spur solutions and strategies to help.
2. Engaging family caregivers as partners in health care and long-term services and supports Caregivers should be treated as members of the health care and long-term services and supports team. Such policies and practices are most effective when they consider the impact on caregivers and the role they play in assisting their loved ones.
3. Improving access to services and supports for family caregivers Counseling, training, peer support and practical services like transportation and respite care are all needed. This assistance should be culturally relevant and accessible to everyone.
4. Strengthening financial and workplace security for family caregivers AARP researchers found that family caregivers spend an average of $7,240 a year to help their loved ones, often causing them serious financial strain. In addition, many face great difficulty in juggling their duties at home and in the workplace, a challenge for women in particular. Flexible scheduling and other workplace policies to support these efforts can make a difference.
5. Generating research, data and evidence-informed practices To address gaps in service, we need a better understanding of how to help caregivers in all communities, including the underserved. This calls for building a meaningful knowledge base to document best practices, to promote person- and family-centered interventions and to track progress.
Under the RAISE Family Caregivers Act, the Department of Health and Human Services is developing a national strategy to support family caregivers. With that goal in mind, the RAISE Family Caregiving Advisory Council put forth these recommendations based on more than 1,600 comments from caregivers and their advocates, listening sessions, focus groups and briefings from experts. Among the advisory council members is AARP former National Volunteer President Catherine Alicia Georges (chair of the nursing department at Lehman College of the City University of New York). The recommendations lay the groundwork for the strategy.
Although this work has been underway for years, the pandemic has provided a tragic reminder that our system of care must be overhauled. Many family caregivers have had to leave the workforce, and others have struggled harder than ever to manage their multiple responsibilities.
At AARP, we get it. We have endorsed the bipartisan Credit for Caring Act, which would provide a tax credit of up to $5,000 for eligible working caregivers. AARP is also pushing for paid leave for caregiving and broader access to home- and community-based services.
The diverse needs of caregivers are only going to increase as our nation ages. By 2030, 77 million Americans will have reached age 65 and will face growing risks of chronic ailments that make it harder to live independently. There is no reason that family caregivers should be left adrift to contend with these challenges on their own. Communities, providers, government, employers and others all can — and must — do more to help.
I want to compliment the advisory council for a job well done, but we have a long way to go. The RAISE report offers a much-needed road map for developing the family caregiving strategy that our nation requires. The report and the strategy that will follow must not be allowed to lie dormant. I urge leaders in the Biden administration and all policymakers, industries and communities to embrace these important recommendations.
Nancy LeaMond is AARP's chief advocacy and engagement officer.