Revealing data shows number of caregivers in the US has skyrocketed
Caroline Edwards, 59, helps her mother sit up in bed every morning and hands her a glass of water. Then, she retells her mother's life story, pointing to family photos on the wall.
Her mother, Ingrid Martinez, started showing signs of Alzheimer's disease in 2017, Edwards said. It started slowly, but now her mom needs 24/7 care.
"One day you realize her entire life and everything it encompasses − her house, her shopping for groceries and her personal care, her dog, her yard, filing her taxes, paying her property taxes, all of her bills, everything − is, like, suddenly in your hands," Edwards, of Mission Viejo, California, said.
Now, more than ever, millions of Americans are in Edwards' shoes.
Nearly 1 in 4 American adults are caregivers, according to a report, "Caregiving in the US 2025," jointly published by AARP and the National Alliance for Caregiving on July 24. It estimates more than 63 million adults are family caregivers who have provided care to adults or children with a medical condition or disability at some point in the past year. That's a 45% increase − 20 million more caregivers − in the last decade.
That number doesn't include people who take care of children without a medical condition or disability. The report, which was first conducted in 1997 and this year includes data from a national survey of nearly 7,000 family caregivers, estimates 91 million Americans care for children under 18 in their households.
“Family caregivers are a backbone of our health and long-term care systems − often providing complex care with little or no training, sacrificing their financial future and their own health, and too often doing it alone,” AARP CEO Myechia Minter-Jordan said in a news release. “As our population ages, we must act boldly to support people providing this crucial source of care.”
People are providing care for longer, too. Nearly 30% of caregivers have provided care for 5 years or more, an increase of 24% since 2015, the report found.
"Families are doing more. They're being asked to do more. They're taking on more. And it's affecting every member of the family," Rita Choula, senior director of caregiving at AARP, told Paste BN.
While several policies have increased financial support for family caregivers in recent years, the report says less than 1 in 5 family caregivers were paid for the care they provided. Financial struggles are common among caregivers, and most survey respondents said tax credits, paid leave and paid caregiving programs would help.
Caregivers said they need help in other ways, too. Respite care, help with paperwork, better paid leave policies and emotional support were among the most sought-after services caregivers said they valued in the survey.
Caregivers in America are diverse, but a lot of them are like Edwards: middle-aged women caring for an aging parent. The report found the average age of a caregiver is 51 years old, that 61% of caregivers are women and that 70% of caregivers ages 18-64 are employed while also providing care.
Approximately 16 million of today's caregivers are in the sandwich generation, balancing care for both adults and children. Edwards is one of those caregivers, with a 17-year-old daughter heading into her senior year of high school.
"You can't be a great mom and a great daughter at the same time. It's impossible," Edwards said. "I have a tremendous amount of guilt from all the time I have not spent with my daughter."
Dementia, Alzheimer's impact 11% of care recipients
Old age is the most common main reason care recipients need assistance, survey respondents said. The second most-common condition, at 11%, is Alzheimer's or dementia.
An additional 19% of respondents indicated their care recipient is living with a cognitive impairment, leaving more than 1 in 4 caregivers caring for someone with memory issues and/or dementia. Another 17% of caregivers said they are "not sure" if their care recipient has a memory issue.
Caregiving for someone with dementia is an intense type of care that involves more complex tasks, Choula said. And many people with dementia develop other chronic conditions, too, like heart disease or cancer, which can further complicate their care.
"You're essentially having to function for that individual," Choula said. "You're having to make difficult choices and life sustaining choices for that individual."
For Edwards, caregiving means helping Martinez use the bathroom and shower. She makes her meals and takes her to doctor's appointments. They play games and do puzzles together, and go for walks and drives around town. It's "very isolating, very lonely" to be a full-time caregiver, Edwards said.
Sometimes she sees her mother nod and start to remember some parts of her life. But other times, Edwards said, "there's nothing there."
Caregivers want respite care, help finding affordable resources
Most caregivers live with their care recipient or within 20 minutes of them, according to the report from AARP and the National Alliance for Caregiving. Caregivers average 27 hours of care work per week, and nearly 1 in 4 caregivers provide at least 40 hours of care weekly.
This care work can be overwhelming, caregivers say, and only 11% of caregivers said they've received formal training. Caregiving duties can be intense as care recipients often need help with routine tasks like bathing, dressing, feeding, taking medications, using the bathroom, getting out of bed or a chair and moving from one room to another. Caregivers may also help with grocery shopping, cooking and housework.
To help lessen the load, the survey from AARP and the National Alliance for Caregiving found 1 in 3 family caregivers have paid help. Others rely on friends and family members to help out, including children. The report estimates 4 million children help with caregiving duties.
What would be most helpful, caregivers often say, is access to respite care so family caregivers can get a break. Nearly 4 in 10 caregivers reported that respite services would be helpful, but only 13% said they use respite services.
Neal Shah, CEO of CareYaya Health Technologies, a tech platform that connects people in need of care with health care students, said there are lots of reasons why family caregivers don't get the help they need. Caregivers are underpaid, there's a caregiver workforce shortage and care services are too expensive for many families. There can also be shame, guilt and questions about care quality, which he experienced firsthand when he cared for his wife who was sick with cancer.
"I kept taking sabbaticals from my work to manage her care, because every time I tried to get care help, the quality was just so bad. The reliability, the interpersonal interactions," Shah said. "I felt very guilty."
The survey also found more family caregivers have had difficulty finding affordable care services since 2015. Finding meal delivery programs, transportation services and in-home health help is a struggle for 28% of caregivers.
Caregivers find purpose in caring for loved ones
While caregiving can take a toll on mental health, the report also found half of caregivers say the responsibility provides a sense of purpose or meaning in life.
Family caregivers often find they grow closer to their loved one in caring for them, Choula said. Caregiving can also be empowering for some family caregivers, and allows adult children especially a chance to return the care their parents once gave them.
While caring for her mother has been challenging, Edwards said she wants her mom to be able to stay at home. They've always been close, she said. Just a look from Edwards can make Martinez smile.
"I do this out of my love I have for her," Edwards said.
Madeline Mitchell's role covering women and the caregiving economy at Paste BN is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.
Reach Madeline at memitchell@usatoday.com and @maddiemitch_ on X.