Nearly a quarter of U.S. adults provide care to loved ones with disabilities or complex medical conditions, but a new report finds that the challenges they face vary significantly depending on which state they call home.
State policies on paid leave, respite care and other factors are dramatically impacting the reality of these family caregivers, according to the report out this week from AARP and the National Alliance for Caregiving.
Across the country, there are an estimated 63 million family caregivers, but they are not distributed evenly. The share of adults serving in this role varies from 20% in Washington, D.C. to 34% in Mississippi, the data shows.
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Among family caregivers, 18% are paid for some of the support they provide, often through Medicaid home and community-based services self-direction waivers or other government programs. State-level data, however, reveals wide discrepancies, with just 10% of family caregivers in Iowa receiving pay versus a high of 28% in New Jersey.
“These state-by-state disparities expose how policy choices determine whether families thrive or collapse under caregiving responsibilities,” said Jason Resendez, president and CEO of the National Alliance for Caregiving. “When financial strain hits 59% of family caregivers in Georgia compared to just 34% in Minnesota — meaning where you live can double your risk of economic hardship — it’s clear that patchwork state solutions aren’t enough.”
Two-thirds of family caregivers assist with at least one task considered an activity of daily living like bathing, dressing, feeding or toileting and virtually all of them help with financial management, shopping or other tasks necessary for independent living, according to the report.
Almost half of family caregivers are engaged in high-intensity care and 28% provide 40 or more hours of care each week. Tennessee has the largest share of caregivers putting in this number of hours at 37%, the report found.
These responsibilities are leading to financial and health consequences for family caregivers, with many struggling to find affordable local services for the person they assist or facing difficulty caring for their own health, the findings show.
“Caregivers are the invisible backbone of our broken long-term care system and economy, and too many are paying the price out of their own pockets, risking their own financial security by taking on more debt, using up savings and leaving bills unpaid,” said Nancy LeaMond, executive vice president and chief advocacy and engagement officer at AARP. “This new data offers the clearest picture yet of America’s caregivers nationwide and a roadmap for the change they urgently need.”
AARP and the National Alliance for Caregiving are urging policymakers to provide compensation and additional financial relief for family caregivers, among other steps.
