Study: One in Five Americans Are Unpaid Family Caregivers

Published in the Woonsocket Call on May 17, 2020

As the nation sees a growing number of aging baby boomers, workforce shortages in health care and long-term care settings, increased state funding for community-based services, and a growing number of seniors requiring assistance in their daily activities, caregivers are needed more than ever. According to a recently released report from National Alliance for Caregiving (NAC) and AARP, an increasing number of unpaid family caregivers are stepping up to the plate to care for their older family members or friends. The caregiver report’s findings indicate that the number of family caregivers in the United States increased by 9.5 million from 2015 (43.5 million) to 2020 (53 million) and now encompasses more than one in five Americans (19 percent).

First conducted in 1997, with follow up surveys in 2004, 2009 and 2015, the Caregiving in the U.S. studies are one of the most comprehensive resources describing the American caregiver. Caregiving in the U.S. 2020 was conducted by Greenwald &a Associates using a nationally representative, probability-based online panel. More than 1,700 caregivers who were age 18 or older participated in the survey in 2019.

Demand for Caregiving Rising as Nation’s Population Gets Older

The 107-page Caregiving in the U.S. 2020 report also reveals that family caregivers are in worse health compared to five years ago. As the demand for caregiving rises with the graying of the nation’s population, the report calls for more be done to support this vital work.

“As we face a global pandemic, we’re relying on friends and family to care for the older adults and people living with disabilities in our lives,” notes C. Grace Whiting, JD, President and CEO of NAC, in a May 14 statement announcing the release of this report. “Caregivers are essential to the nation’s public health, and the magnitude of millions of Americans providing unpaid care means that supporting caregivers can no longer be ignored, she says, noting that report’s findings reveals that growing need.

According to Whiting, family caregivers care for more people than five years ago and they take on more care responsibilities as roughly one in four care for two or more people. “Many individuals are caring for a longer time, with nearly a third (29 percent) of caregivers nationwide reporting they have been caregiving for five years or more—up from 24 percent in the last study,” states Whiting.

Who are today’s caregivers?

This new caregiver study shows that 39 percent are men and 61 percent are women. The average age is 49.4 years. The profile of the family caregiver is also changing, too. While caregiving spans across all generations, Caregiving in the U.S. 2020 found more young people providing care, including 6 percent who are Gen Z and 23 percent who are Millennials. Nearly half (45 percent) are caring for someone with two or more conditions—a significant jump from 37 percent in 2015.

As to ethnicity, the caregiver report notes that six in 10 are non-Hispanic White (61 percent), 17 percent are Hispanic, and 14 percent are African American.

The report’s findings indicate that one in 10 of the caregiver survey respondents are enrolled in college or taking classes (11 percent), 9 percent have served in the military and 8 percent self-identify as lesbian, gay, bisexual, and/or transgender.

Caregivers in Poorer Health, Feeling Financial Strain

Caregiving in the U.S. 2020 also found that caregivers face health challenges of their own with nearly a quarter (23 percent of caregivers find it hard to take care of their own health and 23 percent say caregiving has made their health worse. The report also notes that personal finances are a concern for family caregivers: 28 percent have stopped saving money, 23 percent have taken on more debt and 22 percent have used up personal short-term savings.
Sixty one percent of the caregiver respondents work and have difficulty in coordinating care.

The May 2020 caregiver report states on average, caregivers spend 23.7 hours a week providing care, with one in three (32 percent) providing care for 21 hours or more, and one in five (21 percent) providing care for 41+ hours—the equivalent of a full-time unpaid job.

“The coronavirus pandemic is exacerbating the challenges family caregivers were already facing from a personal health, financial and emotional standpoint,” said Susan Reinhard, RN, PhD, Senior Vice President at AARP. “Family caregivers provide vital help and care for their loved ones, yet this survey shows that they keep getting stretched thinner and thinner. We must identify and implement more solutions to support family caregivers—both in the short term as we grapple with coronavirus and in the long term as our population ages and the number of family caregivers declines.”

: “Without greater explicit support for family caregivers in coordination among the public and private sectors and across multiple disciplines overall care responsibilities will likely intensify and place greater pressure on individuals within families, especially as baby boomers move into old age,” warns the report’s authors, calling on Congress and state lawmakers to develop policies that ensure that caregivers do not suffer deteriorating health effects and financial insecurity.

Thoughts from AARP Rhode Island…

“The wealth of information in this report is an essential guide to policymakers,” said AARP Rhode Island State Director Kathleen Connell. “It reveals important trends and underlines future needs. For AARP, it provides information on how, as an organization, we can best serve Rhode Island’s 136,000 family caregivers. The challenges they face vary, making it very important that we can provide focused resources that meet any one caregiver’s needs. The report’s overall takeaway – that the number of caregivers is rising dramatically – is a call for increased awareness and support. This responsibility starts at the very top of federal, state and municipal government and flows all the way down to family members who can better share caregiving responsibilities. Many will be asked to step outside their comfort zone, so we all will have to work together,” adds Connell.

Connell noted that the report points out the shift from traditional residential health care settings to community-based settings. “The research reaches a clear conclusion,” Connell observed. “Families will have to fill new roles, learn new skills and absorb more out of pocket caregiving expenses. This will create additional the stress for many family caregivers. That’s why it is so important that we develop the training, tools and other resources caregivers require.”

A 2019 AARP report, Valuing the Invaluable, calculated that Rhode Island family caregivers provide 114 million unpaid hours of care annually. Based on the average $15.76 per hour wages of paid caregivers, family caregivers represent an economic value of an estimated $1.8 billion.

The 2020 study was funded by AARP, Best Buy Health Inc. d/b/a Great Call, EMD Serono Inc., Home Instead Senior Care®, The Gordon and Betty Moore Foundation, The John A. Hartford Foundation, TechWerks, Transamerica Institute, and UnitedHealthcare.

For a copy of Caregiving in the U.S. 2020, go to
https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf.

Assistance to Employee Caregivers Good for Everyone’s Bottom Line

Published in Woonsocket Call on June 11, 2017

Days ago, AARP and the Respect a Caregiver’s Time Coalition (ReACT) released a report detailing innovative practices and policies of 14 organizations to support their employees with caregiver responsibilities. With the graying of America, supporting caregiver employees should be considered “a potentially new weapon” to attract or retain talented employees, say the researchers, by flexible work arrangements and paid leave policies. And there will be a need for this support.

It is estimated that of the 40 million unpaid family caregivers in the U.S., 60 percent are employed. According to the National Alliance for Caregiving (NAC) and AARP Public Policy Institute, nearly 25 percent of all family caregivers are millennials, and 50 percent are under the age of 50. This means that the growing number of family caregivers in the workforce is an issue that all employers will face. The NAC/AARP research also revealed that 61 percent of working caregivers must make workplace accommodations including modifying hours, taking a leave of absence, choosing early retirement or turning down a promotion.

Report Cites Best Practices to Support Employee Caregivers

The 14 case studies in the new report, “Supporting Working Caregivers: Case Studies of Promising Practices,” include well-known organizations from both the for-profit and nonprofit sectors, and both large and small employers. They represent a broad set of industries, including financial services, health care, higher education, home care, management consulting, media, and technology.

There is “no one size fit all” solution to meeting the needs of employee caregivers, say the researchers. But, even with the diversity of the 14 participating organizations “there is clear evidence of promising practices” identified through these interviews, they note.

Researchers gleaned best practices from 14 nonprofits and for profits (from very large employers with over 200,000 workers to ones with less than 200 workers), detailing in the report released on June 8, 2017, how these organizations assist their caregiver employees. These companies provide a broad array of information resources and referrals, flexible work arrangements, paid time off for caregiving, emergency backup care, and, in some cases, high-touch counseling and care management advice.

“Family caregivers juggle their loved one’s needs with their own personal and professional goals every day. AARP hopes this report will encourage more employers understand caregiving and support their employees’ success,” said Nancy LeaMond, executive vice president and chief advocacy and engagement officer in a statement. AARP sponsored the 49-page report.

According to researchers, interviews with business and human resources executives from the profiled organizations indicated that time and flexibility are what matter most to employees when it comes to balancing work and caregiving. Close to half of the employers interviewed provide paid time off for caregiving as well as emergency backup care and flexible work arrangements.

All offer employee caregivers a combination of information resources, referral services and advice by phone. Most provide resources online, typically through an employee assistance program (EAP) or an intranet portal. More than half offer phone consultations or 24/7 expert hotlines. Several interviewees stressed the value of providing on-site, independent eldercare consultants, noting that employees appreciate both the convenience and the respect for their privacy.

“ReACT represents a cross-sector employer effort to raise awareness of and spur action to meet the challenges millions face every day while taking care of an older loved one,” said Drew Holzapfel, convener of ReACT, in a statement. “It’s exciting to see how leading organizations are showcasing the value of employee caregivers’ dual roles at home and in the office.”

Organizations Give Thumbs Up to Assisting Employee Caregivers

Interviewees at the participating organizations were not shy in explaining the importance of offering caregiver assistance to employees.

Michelle Stone, Fannie Mae’s Work-Life Benefits Senior Program Manager, says, “We have been asked, ‘How can you afford to do this?’ Our response is, ‘How can we afford not to?’ The program helps our company and our employees save time and money, and the return on investment is substantial.”

Michelle Martin, Vice President, Human Resources Specialty Services, CBS Corporation, states, “Our hope is to fill the gaps in support along the continuum of care so that employees not only have what they need to care, but also the peace of mind to do so without worrying about their job.”

“At Allianz Life, we like to say, ‘we’ve been keeping promises to our employees and customers since our founding.’ Nothing matters more than our employees and we work every day to provide them with benefits that allow for work-life balance and peace of mind,” says Suzanne Dowd Zeller, Chief Human Resources Officer.

Adds Audrey Adelson, manager of work-life, Emory University, “Our program is based on a continuum of care model, designed to support not only entrenched caregivers, but also those who anticipate becoming a caregiver and those whose caregiving responsibilities have ended and are beginning to move beyond caregiving.”

AARP Rhode Island Champions Caregiving Temporary Disability Insurance

Most employers recognize that some of their best workers are not at their best when they are caregivers in crisis for feeling the onset of burnout,” AARP Rhode Island State Director Kathleen noted. “One of the reasons is that most employers and their human resources managers respond to the needs of caregivers is because they are not far removed from caregiving if not caregivers themselves. They know that caregiving responsibilities sometimes must take precedence over work. And they understand that what is good for the caregiver is also good for their business.

“In Rhode Island, caregiving temporary disability insurance – legislation championed by AARP – gives caregivers paid leave to attend to caregiving tasks or as respite when a break from work benefits all concerned. Employers should assess their policies and give thought to the importance of supporting their caregiving employees’ success. This is true of businesses large and small and non-profits as well. These bosses can start by simply asking themselves what their expectations would be if they were an employee.”

Rhode Island CEOs might consider obtaining a copy of this report, passing the document to Human Resources for review and ultimate implement of eldercare policies. Stressed employee caregivers will appreciate any assistance they can get to help them in their caregiving responsibilities. But, this makes good business sense, too. Assisting employee caregivers will increase employee productivity, improving the company’s bottom line.

To read the full report, go to:

Click to access AARP-ReAct-MASTER-web.pdf

Rhode Island General Assembly Seeks to Assist State’s Caregivers

Published in Woonsocket Call on June 14, 2015

With the graying of America’s population, the profile of the typical family caregiver has changed, says a new report released by the National Alliance for Caregiving and AARP. The findings trouble aging advocates who warn that as care givers age they require more long term care support and community based care services.

Taking a Look at Today’s Caregiver

The report, “Caregiving in the United States 2015,” tells us that the “typical” family caregiver is a 49-year-old woman who takes care of a relative, caregivers on the whole are becoming as diverse as America’s population.

According to the 81 page report, today’s family caregiver also provides unpaid care for at least 21 hours a week, and has been care giving for an average of 5-1/2 years.  These individuals expect to continue providing care to their loved ones for another 5 years. Nearly half of these higher-hour caregivers report high emotional stress (46 percent), too.

Men, often stereotyped as failing to take on caregiving responsibilities, currently represent a whopping 40 percent of family caregivers, also providing an average of 23 hours a week being a caregiver to their loved ones, adds the report.

The study’s data indicates that today nearly a quarter of the nation’s caregivers are millennials between the ages of 18 and 34 and they are equally likely to be male or female. On the other end of the spectrum, 75 and older caregivers are typically the sole support for their loved one, providing care without paid help or assistance from relatives and friends.

Meanwhile, caregivers, with an average household income of $45,700, tell the researchers that they are not only emotionally strained, but financial strained as well. These higher-hour older caregivers report difficulty in finding affordable care giving services, such as delivered meals, transportation, or in-home health services, in their community, for themselves and their loved ones.

The report also notes that “Caregivers of a close relative—like a spouse or a parent—who are likely to provide care for 21 hours or more, indicate that being noted as a family caregiver in the medical records of the care recipient would be helpful in managing their caregiving responsibilities.”

Finally, the study’s findings indicate that caregivers who live more than an hour away from their care recipient also report higher levels of financial strain (21 percent), perhaps because 4 out of 10 long-distance caregivers report the use of paid help (41 percent).

Report Calls for Supporting Caregiver Needs

As previous AARP research has shown, we’re facing a caregiving cliff,” said Dr. Susan Reinhard, senior vice president and director, AARP Public Policy Institute; and chief strategist, Center to Champion Nursing in America. “By mid-century, there will be only three family caregivers available for each person requiring care. That means, to avoid putting them at higher risk as they age, we need to provide support for existing caregivers who are underserved by the current long-term services and support system.”

We’re especially concerned that not enough is being done to support family caregivers in the public or private sector as they age,” says Gail Gibson Hunt, president and CEO of the National Alliance for Caregiving. “There’s a double-edged sword when we fail to support caregivers, because we put both the caregiver and the care recipient at risk,” she warns.

Hunt observes, “Rhode Island is a unique state in that it has the highest percentage of persons over age 85. The data in this report speaks to some of the challenges of a graying population, particularly the needs of caregivers who are 75 or older.”

“We know from the data that the ‘typical’ caregiver over 75 is caring for a spouse or close relative, and spends about 34 hours a week providing care. This can be extremely challenging for an older person who may be managing their own mobility and health issues, as they help a loved one with basic needs like bathing or everyday tasks like grocery shopping,” said Hunt.

Hunt says, “Rhode Island has an opportunity to continue supporting older people and their caregivers, who are also growing older and need care.”

Lawmakers Posed to Pass Caregiver Law

           In June 4th, the Senate passed SB 481 A, the CARE (Caregiver Advise, Record  and Enable) Act, to provide caregivers with timely information to allow them to provide post-discharge care.  The House Chamber passed its measure, HB 6150 Sub A on June 10th.  Both chambers must now approve the legislation from the opposite chamber.  If passed, they go to the Governor for approval.  This legislation will be invaluable to the state’s 148,000 caregivers who provided 142 million hours of care for loved ones.

“We are delighted that – upon the CARE Act becoming law – Rhode Island will join seven other states that  have enacted CARE Act legislation, with bills in three other states awaiting their respective Governor’s signatures,” said AARP State Director Kathleen Connell.

“Together, AARP worked with a strong coalition of stakeholders, as well as the House and Senate sponsors, Representative Eileen Naughton, and Senator Gayle Goldin, and the members of the House’s Health, Education and Welfare Committee and the Senate’s Health and Human Services Committee,“ notes Connell.

“The passage of the CARE Act dovetails with the release of “Caregiving in the United States 2015,” which  presents a portrait of unpaid family caregivers today. It specifically addresses vulnerable groups of caregivers who face complex, high burden care situations. They tend to be older caregivers, who had no other option but to take on caregiving duties.” adds Connell.

Connell says, “It is sobering to conclude that in Rhode Island, with its above-average older population, we risk seeing more and more of old sick people caring for older sicker people. Clearly, that’s not a good thing and it needs addressing sooner than later.”

“One thing we noticed as the CARE Act made its way through the General Assembly was that a number of lawmakers shared their own personal caregiving stories. Some issues are harder to personally identify with than others, but when it comes to caregiving, it’s good to know we have this kind of attention. The report adds data and statistics that should help frame solutions,” says Connell.

 

Director Charles Fogarty, who oversees the state’s Division of Elderly Affairs (DEA), sees the value of AARP’s report highlighting the “critical role” of caregivers taking care of their loved one.  “Family support is essential to allow seniors to stay in their own homes and live as independently as possible, he says, noting that federal funds allows DEA to administer respite and care giver support programs.

“As the baby boomer generation ages, DEA will continue to seek out resources that provide support to family members who care for their loved one,” says Fogarty.

The CARE Act can provide assistance to those tirelessly care for their aged or disabled loved ones.   Kudos for the Rhode Island General Assembly giving them the tools to do a better job.

Herb Weiss, LRI ’12 is a Pawtucket-based writer covering aging, health care and medical issues.  He can be reached at hweissri@aol.com.