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USA Today
6 days ago
- Health
- USA Today
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. The Cost of Care recent feature: Her mom got sick, she moved in to help. Years later, they both feel trapped. '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 USA TODAY. 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. A woman's retirement crisis: Between caregiving and gender wage gap, can they catch up? 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. Tell your story: The caregiving crisis is real. USA TODAY wants to hear from you about how to solve it. 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 USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input. Reach Madeline at memitchell@ and @maddiemitch_ on X.
Forbes
6 days ago
- Health
- Forbes
Who Are Family Caregivers Of Seniors And People With Disabilities?
A daughter with her father. The typical family caregiver is a 50-something woman who spends 27 hours a week caring for an aging parent who has two or more serious medical conditions, and is doing so with little outside assistance, according to a new survey by the National Alliance for Caregiving and AARP. While that describes a typical caregiver, many different family members serve as caregivers, and many kinds of people are being helped. For example, the survey, called Caregiving in the US, found that 4 million children under age 18 are helping to care for relatives with physical or cognitive limitations. The study is valuable because it is the fifth in a series going back to 1997. Strikingly, while it shows some important changes, the basic story remains the same: Millions of Americans are struggling to care for relatives who increasingly need help with their daily activities, from bathing to shopping. Counting Caregivers The new study estimates that in 2024, about 63 million people were caring for aging parents, spouses, or children with disabilities and serious illnesses. That's an increase of 16 million in the past decade. The survey counts anyone who has provided 'ongoing care over the past year to adults or children with complex medical conditions or disabilities.' It defines family caregiving 'as providing ongoing supports and management of complex care tasks for children and adults with chronic, disabling, or serious health conditions.' About 41 million of those being cared for are age 65 or older. Other research has come up with somewhat lower estimates. For example, Jennifer Wolff and colleagues at the Bloomberg School of Public Health at Johns Hopkins University, estimated 24 million family members were caring for older adults in 2022, up from 18 million a decade earlier. Similarly, in 2023 the Bureau of Labor statistics estimated 37 million family members were providing care for older adults. Why the differences? Different years. Surveys ask different questions. And all these studies are based on self-reporting by individuals, and family members may characterize their roles differently. Sometimes, for example, a daughter won't call herself a caregiver. She is just…a daughter. Caregivers, she may believe, are the people who are paid to assist others. Who Are They? Like other studies, the NAC/AARP survey found that while most family caregivers are women, about 40% are men, a ratio that has not changed much in recent years. More than half are adult children caring for parents or grandparents. About 15% care for spouses or partners. Forty percent of family caregivers live with those receiving care, a big increase from a decade ago when the share was only about 34%. Much is said about the 'sandwich generation' who care for both young children and aging parents. The new study finds about 30% of all family caregivers also have young children or grandchildren living with them. Not surprisingly, caregivers under age 50 are most likely to be caring for both young children and older adults. Nearly half of that group are sandwich generation caregivers. About two-thirds of working-age caregivers are employed and half of them say caregiving affects their ability to work, reporting they go in late, leave early, or take time off to provide care. What Do They Do? Only about one-third of family caregivers have paid help, most often they are people who work themselves and who have relatively high incomes. Those providing care for very long durations are most likely to hire aides to assist them, as are nearly half of those caring for loved ones with dementia. About one-third of family caregivers report assisting loved ones for five years or more. Three-quarters say they provide 20 hours or more of care a week and one-quarter report 40 hours or more, or the equivalent of a full-time job. More than half provide the kind of medical care that normally would be done by a nurse. But only about one-in-five say they have been trained to do these tasks. Most act as care navigators for their loved ones: 70% monitor their health conditions, two-thirds communicate with their doctors, and nearly 60% advocate for care recipients' needs with providers, community services, or government agencies. Regrettably, care coordination isn't getting easier, despite growing attention to the need. Only about 70 percent of those surveyed say they are included in care planning, with younger caregivers even less likely to be involved. About 58% say coordinating care with health professionals is easy, down from 65% in 2015, and from 59% in 2020. Similar to other surveys, respondents are looking most of all for financial support. Roughly 70% favor such assistance, though higher-income caregivers prefer tax credits while those with lower incomes favor direct payments. About one-in-four would like respite services, while one-in-three identify emotional support and professional assessment of their needs. A Worsening Problem The NAC/AARP report may vary from others in the details. But whatever the numbers, it is fair to say that a lot of Americans—tens of millions—are caring for their loved ones. They are making enormous financial, emotional, and physical sacrifices to do it. Their numbers are increasing rapidly as the population ages and more people of all ages with disabilities remain at home, and for longer. And they are getting remarkably little support from the health care system or the government. That's especially true of those who care for people who do not qualify for government programs such as Medicaid. The problem is bad and getting worse, no matter how you count it.
USA Today
31-05-2025
- Health
- USA Today
The caregiving crisis is real. USA TODAY wants to hear from you about how to solve it.
The caregiving crisis is real. USA TODAY wants to hear from you about how to solve it. Caregivers are in crisis. 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. More: Chronic illness can be hard on marriage. Studies show it's worse when the wife is sick. 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. Madeline Mitchell's role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal Ventures and Journalism Funding Partners. Funders do not provide editorial input. Reach Madeline at memitchell@ and @maddiemitch_ on X.
USA Today
21-02-2025
- Health
- USA Today
More men are becoming family caregivers
More men are becoming family caregivers | The Excerpt On a special episode (first released on February 21, 2025) of The Excerpt podcast: With an aging baby boomer population, the demand for family caregivers in the U.S. has never been higher. While traditionally, most family caregiving has fallen to women, men are now increasingly joining their ranks. Although both sexes face a financial, emotional and physical toll, men are still the primary breadwinners in most opposite sex families, and in that aspect, face unique challenges. How can we as a society better support them? Jason Resendez, president and CEO of the National Alliance for Caregiving, joins The Excerpt to dig into these issues. Hit play on the player below to hear the podcast and follow along with the transcript beneath it. This transcript was automatically generated, and then edited for clarity in its current form. There may be some differences between the audio and the text. Podcasts: True crime, in-depth interviews and more USA TODAY podcasts right here Dana Taylor: Hello and welcome to The Excerpt. I'm Dana Taylor. Today is Thursday, February 20th, 2025, and this is a special episode of the Excerpt. With an aging baby boomer population, the demand for family caregivers in the US has never been higher. While traditionally, most family caregiving has fallen to women, men are now increasingly joining their ranks. Although both sexes face a financial, emotional and physical toll, men are still the primary breadwinners in most opposite-sex families and in that respect, face unique challenges. How can we as society better support them? Jason Resendez, president and CEO of the National Alliance for Caregiving is here to dig into these issues. Thanks for joining me, Jason. Jason Resendez: Thanks for having me. Dana Taylor: It's frequently an emergency or at least an unexpected change when someone becomes a family caregiver, which of course is a huge challenge when it needs to be balanced with a career and other family responsibilities. What do you hear from men who are caregivers, particularly when it comes to employment and careers? Jason Resendez: The simple fact is, you're right, there are more and more family caregivers being enrolled into care every year. In fact, between 2015 and 2020, the number of family caregivers jumped by over 10 million to around 53 million Americans providing ongoing, complex care in this country. But our perceptions of who those caregivers are have not kept up, and our policies and culture haven't kept up. More men are becoming family caregivers Men face a unique set of challenges when it comes to stepping into the role of a caregiver. So while the majority of caregivers are still women, there's a large share of men that are providing care, about 39% or 20 million men are providing ongoing complex care for someone in their life. And that care looks a lot like the care that women provide. It's ongoing, intense, helping with activities of daily living, with managing medical and nursing tasks, helping with transportation and meal preparation. So there's a lot of similarities, but where there are differences are the cultural differences that we see around caregiving, deeply ingrained assumptions around who caregivers are and what policies are in place to support them. So what we see and hear from male caregivers are similar to what we hear from women caregivers in terms of, we work in a system that doesn't recognize and value their care. There are too few policies in place to support family caregivers in the workplace, like paid family and medical leave. And as a result, over 60% of male caregivers feel burnout. And of those who are balancing both care and work, 70% face workforce disruption. So care is a lot harder than it needs to be or should be for both men and women. Dana Taylor: Emotional distress is one of the top problems that caregivers point to. Men and women typically handle this in different ways. How are men receiving support differently from women, or are they? Jason Resendez: There are fewer supports in place for male caregivers. And this goes back to the reality that our culture and policies are deeply ingrained with these gender-based assumptions around who caregivers are. So when we think about one of the key supports for family caregivers are peer support groups. Caregivers want to hear and engage with other caregivers. These peer support groups rarely are led by or include men. So there's a lot of issues with accessing gender-tailored care supports. We also hear from men that about one in four feel that other folks don't trust them to provide safe and caring support just because they're men. So there's a bias against male caregivers because of these deeply ingrained assumptions around who caregivers are that lead to additional isolation and distress. And so it's up to us, up to employers, up to policymakers, up to service providers to consider this changing face of who caregivers are in America and think more about the role that men are playing in providing care as we develop tailored supports and policies. Dana Taylor: Why are so many family caregivers unpaid? Aren't there federal funds available to cover the expense? Jason Resendez: There is a huge demand for care in this country. As our nation ages, as folks experience and navigate disability and serious illness, and without formal care supports in place like a healthy and growing direct care workforce, the responsibility of care falls squarely on the shoulders of family caregivers. So it really is that lack of infrastructure that contributes to that demand and hardship placed on families to shoulder the responsibilities of care. And during the COVID-19 pandemic, we did see an increase in states stepping up and leveraging Medicaid dollars and flexibilities to address the direct care workforce shortage, to recognize this growing hardship being placed on the shoulders of family caregivers, both men and women. And so introduced programs like expanded consumer direction, getting dollars in the pockets of family caregivers when they couldn't find a direct care worker because of the crisis that we were all in. So there are more programs at the state level, but they're fragmented, they're underfunded. We're talking about major cuts to Medicaid right now, and those are some of the programs that'll be the first to go if Medicaid gets slashed. So there's just not enough investment in the family care support system that we need, and that impacts both men and women. And it's exactly why we need to recognize the role that men play, right? We need to recognize the shared responsibility that caregiving is and the shared contribution that caregivers provide to our communities, to our families, to our economy. And that means recognizing and building gender equity so that responsibility is more equitably shared. Dana Taylor: So in terms of federal funding, what would it take for that to change? Do you see it as even being a possibility? Jason Resendez: I think we are on the road to better recognizing and valuing the contributions of family caregivers. And what that will look like are investments in programs like paid family and medical leave that allow both men and women to provide care, whether it's for a newborn baby or for an aging or ill parent or a grandparent. It looks like stronger home and community-based supports and access to respite services to limit the disruption on workforce issues that both men and women face. It looks like better training through the Medicare program to take on these complex medical and nursing tasks that both men and women are facing. And we're seeing some incremental progress. We're seeing more states pass paid family and medical leave policies at the state level that recognize both the work of men and women in providing care. We're seeing states like Washington state step up for and invest in long-term care insurance programs that'll benefit both men and women. And we're seeing states even introduce caregiver tax credits, right? We know that caregivers spend about $7,000 out of pocket every year in providing care, and that's not tax-deductible. And so we're seeing more states step up and recognize and address those out-of-pocket costs. So while the progress is moving towards incremental investments, we still need those larger, whole-scale investments at the federal level in order to make care more sustainable. And to recognize over $600 billion in value that caregivers provide to our economy each year without adequate support. Dana Taylor: The Trump administration made news recently announcing a plan to halt federal grant funding. That's now been temporarily paused by a judge, but if that does move forward, what would it mean for caregivers and their loved ones if these funds disappear? Jason Resendez: So it would be devastating to our nation's already crumbling care infrastructure from cuts to aging and older adult services in the form of respite care in the form of Older Americans Act. National family Caregiver support programs which provide resources to states to provide direct services to family caregivers, to cuts to the Medicaid program, which is the number one payer of long-term services and supports in this country, the number one payer of home and community-based supports in this country, which millions of Americans and their family caregivers rely on. So a freeze is extremely disruptive. Cuts would be extremely devastating to Americans, both men and women who are already having a hard time providing this essential care for people in their lives. Dana Taylor: We have technology and apps that are made with caregivers and patients in mind. Does that help fill the gap? And what's a problem that can be solved with specific tech that wasn't available in the past? Jason Resendez: Technology can play a really critical role in helping family caregivers navigate their new realities and their changing realities when it comes to caregiving. One of the biggest issues we see in caregiving, according to our data, caregiving in the US, is care coordination. We see care coordination becoming harder and harder for family caregivers as they navigate different services, different policies, different insurance policies, et cetera. And so technology plays a big role in helping families coordinate care, identify what resources and benefits they can access at the state and federal level. So technology I think is a really critical tool in the toolbox, but it's not enough. We need whole-scale investments in care at the federal level, from the private sector, from philanthropy to keep up with the demand of care in this country. But certainly, technology could play a role in helping to meet that demand. Dana Taylor: Jason, I'm sure you have a list, but what's the most urgent need for caregivers in general? If you could pick just one. Jason Resendez: I think one of the most critical things that we can do is to shift the paradigm from seeing and viewing care as an individual responsibility and struggle to a shared responsibility. And from that, I think we'll see greater recognition and value and political will to invest in policies like paid family and medical leave, home and community-based supports and tax credits to recognize and value the contributions of family caregivers. Dana Taylor: Caregiving is something that many of us may find in our lives, either being the person providing care, or accepting it. And Jason, I know that you have a personal experience here, as do I. Can you please share the challenges you faced? Jason Resendez: I grew up watching my mom raise three kids while working a full-time job and caring for my grandmother who battled multiple chronic conditions. And I didn't know it at the time, but she was one of America's 11 million sandwich caregivers, balancing care for an older loved one while also care for children. And that care came out of a deep sense of love and commitment for her family, but it also came with consequences. It meant that she was never able to finish her college education. It meant that she had to dip into her hard-earned savings in order to make moments like my college graduation possible for me and for her family. And that had ripple effects. It limited our opportunities as a family. It limited her opportunities and career development. It exacerbated deeply-ingrained gender inequities. And so it shaped my life and it shaped my perspective on the importance of valuing and advocating for the work of family caregivers. Dana Taylor: What do you think is the most important area to focus on for the people who want to fix this issue, to improve the lives of caregivers across the country? Jason Resendez: I think the most important thing to focus on is recognizing that caregiving is our common ground. It cuts across party lines, it cuts across age, it cuts across genders, and it's something that we all benefit from. Caregiving is the work that makes all other work possible. And so it's from that common ground that we can start investing in the policies and supports needed to value caregiving, to make caregiving more sustainable, more equitable, and more dignified. Dana Taylor: Jason, thank you so much for being on The Excerpt. Jason Resendez: Thanks for having me. Dana Taylor: Thanks to our senior producers, Shannon Rae Green and Kaely Monahan for their production assistance, our executive producer is Laura Beatty. Let us know what you think of this episode by sending a note to podcasts@ Thanks for listening. I'm Dana Taylor. Taylor Wilson will be back tomorrow morning with another episode of The Excerpt.
