Every year, more than 460,000 Connecticut residents provide 390 million hours of unpaid care to their loved ones, valued at a staggering $5.9 billion per year. These caregivers are overwhelmed, exhausted, and breaking under financial pressure, and they are calling on Congress and the President to take action.
We’ve heard from thousands of family caregivers about the challenges they face. Patricia from Connecticut wrote to AARP about caring for her father. “My father is 92, and he wants to die at home. We thought as a family we could manage it, but as he has declined, we have had to have 24-hour care, and we are paying for it. We are spending down his assets, but the next thing to go will be the house. If that happens, how can he die at home? …I have stressed over these things every day for the last 15 months.”
Family caregivers do everything from helping prepare meals and paying bills to assisting with medication and general activities of daily living — most often so that their parents, spouses, and other loved ones can continue to live independently in their homes and communities. And 61% of these caregivers do all of this while holding down a job.
At AARP, we have tracked how much caregivers spend out of their own pockets to help care for their loved ones. Our newest report found that, on average, family members spend $7,242 a year on caregiving expenses – 26% of their household income. Housing expenses like rent or mortgage payments, home modifications, and changes made up more than half of caregivers’ spending, followed by medical expenses at 17%.
Hispanic/Latino caregivers spent, on average, 47% of their household income on caregiving
Out-of-pocket spending is much greater for some groups of caregivers, either in total dollars spent or as a percentage of average household income. For instance, Hispanic/Latino caregivers spent, on average, 47% of their household income on caregiving. By age, Gen X caregivers spent the most money at $8,502, while Gen Z and Millennial caregivers reported the greatest financial strain, spending a larger share of their household income.
In addition to spending their own money, many caregivers are experiencing other financial setbacks. Nearly half of family caregivers (47%) experienced at least one financial setback such as having to cut back on personal spending, dip into their personal savings or reduce how much they save for their retirement. These can have negative ripple effects for years.
What can be done to help? Congress is currently considering a bipartisan bill called the Credit for Caring Act (S. 1670/H.R. 3321), which would create a tax credit of up to $5,000 for eligible workers who are caring for a family member. This legislation would help offset the cost of some caregiving expenses such as a home care aide, adult day services, home modifications, assistive technology, respite care, transportation, or other supports that help them and their loved ones. AARP has endorsed the Credit for Caring Act, along with 110 other organizations, and is urging Congress to pass the bill this year.
In addition to Credit for Caring, AARP is calling on Congress to invest in home and community services, so that older Americans are able to choose how they live as they age. AARP has led the effort to expand access to home and community-based care in states across the country, including Connecticut, but more investment is needed to make services available for everyone. We also need to support and expand the direct care workforce and enact federal paid leave policies similar to Connecticut’s that give caregivers the workplace flexibility they need to care for their families.
We are fighting for change on behalf of our 460,000 caregivers in Connecticut – and for all of the 48 million caregivers across the country. These hardworking Americans are holding up a fractured and outdated long-term care system, and their backs are breaking, as they pay the bills and shoulder immense emotional responsibility of their roles. Congress and the President must act to support family caregivers and build a sustainable long-term care system that works for every American family.
Doroghazi is responsible for developing and executing state and community advocacy campaigns on behalf of the nonprofit, nonpartisan organization’s nearly 600,000 members in Connecticut.