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How AARP Supports Family Caregivers and Advocates for Better Caregiving Policies
Caregiving is one of the hardest jobs there is. Here’s how AARP is fighting for you
Kiersten Essenpreis
Family caregiving touches nearly every American family. Millions of people help aging parents, spouses, relatives and friends manage health conditions, daily activities and independent living. While caregiving can be rewarding, it often comes with significant financial, emotional and workplace challenges.
AARP is a nonprofit, nonpartisan organization that works to support family caregivers through advocacy, education and policy solutions that help people balance caregiving responsibilities with their own financial security and well-being. From expanding paid leave and caregiver training to improving access to respite services and Medicare support, AARP champions policies that recognize the vital role caregivers play in helping older adults live independently.
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AARP’s position on family caregiving
AARP believes that family caregivers should have access to financial relief, workplace flexibility, training and support services that allow them to care for loved ones without jeopardizing their own financial security or health. The organization advocates for policies that help caregivers remain in the workforce, reduce out-of-pocket costs and access the resources they need to care for family members safely and effectively.
Family caregivers are the first line of assistance for most people, enabling older adults and people with disabilities to live independently in their homes and communities. They can also help delay or prevent more costly nursing home care and unnecessary hospitalizations, saving taxpayer dollars.
The relevance of these issues is near-universal, as most of us will be family caregivers — or need the help of one — at some point in our lives.
Family caregiving has immediate and long-term financial impacts on families and the health care system:
- The average annual out-of-pocket costs for family caregivers total $7,242.
- Caregivers can also experience long-term financial repercussions, including lost wages and and reduced contributions to Social Security and retirement savings.
- The estimated value of care provided by family caregivers is more than $1 trillion a year.
Why family caregiving issues matter to older Americans
While people of all ages, including children, are family caregivers, about half of family caregivers are 50 or older. Eighty-six percent of family caregivers of adults care for someone age 50 or older.
And most working-age caregivers are employed while also providing care. Paid leave keeps them in the workforce while allowing them to address their caregiving responsibilities. It helps employers retain valuable employees while also contributing to the employees’ long-term financial security.
Paid leave is especially important to older Americans because it helps them manage their own health care while caring for others. Without it, many older workers are forced to choose between maintaining their income and meeting essential caregiving or medical needs.
How AARP has supported family caregivers
AARP has advocated on behalf of family caregivers for decades, working with Congress, state legislatures, federal and state agencies, and coalition partners to advance policies that recognize and support caregivers.
Among AARP’s major caregiving milestones are helping lead successful advocacy for the passage of the RAISE Family Caregivers Act in 2018, successfully advocating for the CARE Act in 45 states and territories, expanding Medicare coverage for caregiver training, informing and supporting the GUIDE dementia care model and securing continued and sometimes increased funding for programs supporting caregivers, including the National Family Caregiver Support Program and the Lifespan Respite Care Program.
How AARP keeps fighting for family caregivers
AARP continues to work toward greater recognition and support for the millions of Americans who provide unpaid care to family members and loved ones, advocating for policies that help them save money, balance work and caregiving responsibilities, access support services and help older adults remain in their homes and communities.
AARP's recent state and federal advocacy efforts have helped secure expanded caregiver tax credits, paid family and medical leave protections, extensions and increased funding for caregiver support programs and policies that recognize the essential role family caregivers play in helping older Americans live independently. These victories build on AARP’s long-standing commitment to improving support for family caregivers nationwide.
AARP calls on lawmakers to support family caregivers
AARP calls on Congress to pass the Lowering Costs for Caregivers Act to provide financial relief by allowing a family caregiver with a health savings account, flexible spending account, health reimbursement account or Archer medical savings account to use those funds for the qualified medical expenses of a parent or parent-in-law.
AARP calls on Congress to pass the Credit for Caring Act, which would provide a nonrefundable tax credit of up to $5,000 to eligible working family caregivers. The credit would help offset a portion of out-of-pocket caregiving expenses, such as home care aides, home modifications (ramps and grab bars, for example), respite care, transportation, assistive technology and more.
AARP calls on Congress to pass the Alleviating Barriers for Caregivers Act to help reduce red tape for family caregivers in Medicare, Medicaid, Social Security programs and the Children’s Health Insurance Program.
AARP calls on Congress to pass the Connecting Caregivers to Medicare Act to help inform people about a voluntary Medicare option that lets Medicare beneficiaries allow family caregivers to access their health information through 1-800-MEDICARE. This can make it easier for caregivers to communicate with Medicare to help their loved one or advocate on their behalf.
Frequently Asked Questions
What is AARP's position on family caregiving?
AARP believes that family caregivers are the backbone of our nation’s long-term care system, and they deserve recognition and support.
What has AARP done for family caregivers?
AARP advocates at the state and federal levels for policies that help family caregivers save time, save money and access support. Important legislative victories include the passage of the RAISE Family Caregivers Act, the adoption of state caregiver tax credits and paid family and medical leave programs, and securing funding for caregiver supports such as respite and adult day programs.
Administrative action victories include Medicare paying some health care professionals to train family caregivers and the creation of the Guiding an Improved Dementia Experience (GUIDE) Model in Medicare, which provides care and support to people with dementia and their family caregivers.
AARP also offers caregiver resources to educate family caregivers and provides tools to help them organize and plan their caregiving journey.
Why does AARP prioritize family caregiving?
Most of us will be a family caregiver at some point in our lives or will need the help of one. Caregiving touches everyone.
Family caregivers are the backbone of our nation’s long-term services and supports system, helping older adults and people with disabilities live independently.
How does family caregiving affect people 50 and over?
About half of family caregivers are age 50 or older, and about 86 percent of caregivers of adults care for someone 50 or older. Family caregivers help older adults live independently. The role can bring a sense of purpose, but it also can create physical, emotional and financial strain.
Almost half of family caregivers experience at least one negative financial impact due to caregiving, such as stopping saving or using up short-term savings, taking on more debt, leaving bills unpaid or paying them late, borrowing money from family or friends and struggling to afford basics like food.
Seventy percent of working-age (ages 18–64) caregivers are employed outside the home. Too often, employed caregivers leave the workforce or reduce their hours due to caregiving, resulting in a loss of income, retirement savings, benefits or career mobility.
How can members get involved?
Members can get involved by visiting aarp.org/iamacaregiver to join AARP’s online advocacy network. You’ll receive urgent news and action alerts via email about the issues that matter the most to older Americans.
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