In the U.S., more than 1 in 5 adults are caregivers for an adult or a child with special needs, according to a 2020 report by AARP and the National Alliance for Caregiving. That's about 53 million Americans, which grew over five years from 43.5 million caregivers.
Candace Dellacona was a caregiver for her father and uncle while raising three kids. People in the sandwich generation like her have access to a lot of information about resources, she said, but not necessarily access to those resources.
"It's so universal," she said of caregiving. "But yet, not, right? Because we all have different economic abilities, social abilities, time abilities, personalities."
That's why USA TODAY is launching The Cost of Care, a series of stories featuring caregivers from across the country. Many caregivers are unpaid, need to step away from work for caregiving duties and experience stress, depression and burnout. By sharing these stories and asking readers to share their own experiences and ideas on how to address the caregiving crisis, USA TODAY hopes to facilitate a conversation about care that leads to solutions.
Americans spend $648 billion annually on care, according to a recent report from The Holding Co., a company designing products, brands and experiences for the care economy. That includes infant and child care, nursing homes and hospice, retirement centers, home-based care and other resources for caregivers and the ones they support.
Many caregivers find they need to leave the workforce to devote themselves to full-time caregiving. A new study from Edward Jones, a financial services firm, surveyed more than 3,000 adults and found half of those caregivers cut back on personal spending because of their caregiving responsibilities. Many stepped away from their jobs, reduced work hours or took on debt in the meantime.
That's not to mention the mental and emotional strain of caring for a sick or aging loved one. Most survey respondents said caregiving left them feeling stressed and burned out, and two-thirds said they find it hard to prioritize their own health while caregiving.
David Cook, 68, cared for his wife for nearly a decade before she died in December. He retired early to care for her and the stress of caregiving impacted his sleep and led to him losing 40 pounds in about a month.
"If anyone had ever told me that I'd be a caregiver and doing some of the things I had to do, I'd say, 'No way, I'm not capable of it,'" Cook said.
Cook is the first caregiver being featured in USA TODAY's The Cost of Care. His story is set to publish the second week of June.
Other caregivers are encouraged to be part of the conversation by responding to the survey below. Responses to the survey may be used in future USA TODAY articles, but names will not be published unless USA TODAY gets explicit permission from the respondent.