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.

Caregivers Flying Blind in Providing Complex Medical and Nursing Care

Published in the Woonsocket Call on April 21, 2019

Half of the nation’s 40 million family caregivers are performing intense and complicated medical and nursing tasks, managing multiple health conditions for their family members and friends, says a newly published AARP report.

AARP’s special report, “Home Alone Revisited: Family Caregivers Providing Complex Care,” released April 17, 2019, takes a close look at specific medical and nursing tasks (including giving injections, preparing special diets, managing tube feedings and even handling medical equipment) that family caregivers are currently doing. It’s a follow-up report to AARP’s 2012 Home Alone Study that took the first in-depth look at how caregivers managed providing complex medical and nursing care that was formerly offered by trained professionals.

Changes in the Health Care System Can Support Family Caregivers

“This report shows the extent of complex tasks that millions of family caregivers are providing every day. They are largely alone in learning how to perform these tasks,” said Susan Reinhard, RN, Ph.D., Senior vice president and Director, AARP Policy Institute, in a statement announcing the release of the a 56-page report. “About half of family caregivers are worried about making a mistake. We need to do a lot more across the health care system—with providers and hospitals—to help support these family caregivers,” says Reinhard.

Adds Rani E. Snyder, program director at The John A. Hartford Foundation, “Family caregivers are the linchpin in our health care system, particularly for older adults,” “This study shines new light on the diversity of family caregivers performing complex tasks—from men to millennials to multicultural populations—and is a rallying cry for an all hands-on-deck approach to creating age-friendly health systems that better support and prepare these often forgotten members of the health care team.”

The new statistics in this report shed more light on the demands of family caregiving,” said AARP Rhode Island State Director Kathleen Connell, a former nurse. “These described caregiving responsibilities sound like a task list for a team of home nurses, aides, dieticians, physical therapists and personal drivers who work without weekends off, much less vacations. Is there any question that people worry about making a mistake that compounds existing issues?,” she says.

“The takeaway is quite clear,” Connell added. “Caregiving is stressful and we need to expand efforts to provide assistance. And it’s a very big ‘we’ that I am speaking of. Families need to help out and share more responsibilities as well as offer respite for primary caregivers. Neighbors and extended family also can lend a hand. And we need government to continue to provide assistance through legislation that supports family caregivers. Caregiving responsibilities can be both daunting and exhausting. It’s the new reality. The good news is that as we raise awareness we can work together to improve the lives of caregivers, “ says Connell.

A Sampling of the AARP Report’s Findings

AARP’s Home Alone Revised Report report found that almost half of the caregiver respondents (48 percent) prepare special diets multiple times per day. Preparing these meals often involved taking precise measurements, following specific dietary guidelines, constant monitoring, and the use of special equipment for preparation and feeding.

Thirty percent of the respondents say preparing special diets are hard to manage, this being more challenging to men. Younger caregivers found it more difficult to manage this task than older caregivers.

The caregivers also reported that 54 percent of the survey’s respondents say they manage incontinence multiple times a day. Most say managing incontinence is more difficult than managing medications, helping with assistive devices and performing wound care. Seventy-six percent say they learned how to manage incontinence on their own. More than one in four would appreciate having assistance from another person to help.

According to AARP’s report, 70 percent of these caregivers are dealing with the emotional stress of managing pain relief in the middle of a national opioid crisis. More than four in 10 expressed concerns about giving the optimal dose. About four in 10 faced difficulties in controlling the pain of the care recipient.

Finally, 51 percent of the survey respondents assisted with canes, walkers, and other mobility devices while over a third (37 percent) dealt with wound care.

The researchers conclude that “uncomplicated world of ‘informal’ caregiving” no longer applies” to the nation’s caregivers. “In the current health care environment, it is presumed that every home is a potential hospital and every service that the person needs can be provided by an unpaid family member, with only occasional visits by a primary care provider, nurse or therapist,” say the researchers,” they say.

AARP’s Home Alone Revised Report is a must read for Congress and state lawmakers who can easily address the challenges caregivers face when providing medically complex care by crafting policies and programs that will provide support and resources to the nation’s growing number of caregivers.

This caregiving issue might be a good one for the U.S. Senate Special Committee Aging to study.

A Final Note…

AARP gathered the study’s data through a nationally representative, population-based, online survey of 2,089 family caregivers. This study employed an oversampling of multicultural groups, taking a closer look at difficult tasks, and putting greater attention on available resources and outcomes. The study’s sampling strategy ensured multicultural representation and investigated generational differences. Additionally, the researchers also explored certain topics in greater depth, including special diets, incontinence, pain, and the impact of social isolation on the caregiver.

The AARP Home Alone Study is a special report from the Founders of the Home Alone Alliance℠ (AARP, United Hospital Fund, Family Caregiver Alliance and UC Davis-Betty Irene Moore School of Nursing). With funding from The John A. Hartford Foundation to the AARP Foundation, the study took an in-depth look at the specific medical/nursing tasks that family caregivers are doing.

To read the full report, go to: https://www.AARP.org/ppi/info-2018/home-alone-family-caregivers-providing-complex-chronic-care.html.

Note: Updated April 22, 2018…

Report Hones in on Caregiving Costs

Published in Woonsocket Call on November 20, 2016

On the last day of October, a 537 word proclamation issued by President Barack Obama proclaimed November 2016 as National Family Caregiver (NFC) month. In this official decree the president encouraged the nation to pay tribute to 90 million caregivers who work tirelessly care for family members, friends, and even neighbors.

Obama recognizing the nation’s caregivers came about through the lobbying efforts of Caregiver Action Network (the National Family Caregivers Association). The Washington, DC-based group began its efforts to nationally recognize family caregivers in 1994. Three years later, President Clinton signed the first NFC Month Presidential Proclamation and every president since that time has followed suit by issuing an annual proclamation recognizing and honoring family caregivers each November.

On the heels of Obama’s signed proclamation comes the release of a new AARP report that details the out-of-pocket cost of caregiving. According to researchers, family caregivers spend an average of nearly 20 percent of their income providing care for a family member or other loved one. Along with increased out-of-pocket (OOP) expense, the study also explores other financial and personal strains that family caregivers may experience as result of their caregiving activities.

The Financial Strain of Caregiving

AARP’s 56 page research report “Family Caregiving and Out-of-Pocket Costs: 2016 Report,” noted that caregivers spend an average of $6,954 in OOP costs related to caregiving, with Hispanic/Latino and low-income family caregivers spending an average of 44 percent of their total annual income.

“This study spotlights the financial toll on family caregivers – particularly those with modest incomes,” said AARP Executive Vice President and Chief Advocacy and Engagement Officer Nancy LeaMond. “Whether helping to pay for services or make home modifications, the costs can be enormous and may put their own economic and retirement security at risk. As a nation, we need to do more to support America’s greatest support system. Passing the bipartisan Credit for Caring Act that provides a federal tax credit of up to $3,000 would give some sorely needed financial relief to eligible family caregivers.”

AARP’s report, released November 14, 2016, determined the amount of money that family caregivers spent over the last year providing help or assistance to a loved one. Certain groups of family caregivers spend disproportionately more in OOP expenses, said the researchers.

AARP’s report, prepared by Chuck Rainville, Laura Skufca and Laura Mehegan, noted that family caregivers of all ages spend $6,954 in OOP costs related to caregiving on average. They are earning less than $32,500 are under significant financial strain, spending an average of 44 percent of their annual income on caregiving.

Family caregivers caring for adults with dementia spend nearly twice the OOP costs ($10,697) than those caring for adults without dementia ($5,758), the AARP report found.

Cultural Diversity and Caregiver Costs

Researchers looked at cultural diversity as it related to OOP expenses of family caregivers. According to their findings, Hispanic/Latino family caregivers spend an average of $9,022 representing 44 percent of their total income per year. By comparison, African American family caregivers spend $6,616 or 34 percent, white family caregivers spend $6,964 or 14 percent, and Asian Americans/Pacific Islanders spend $2,935 or 9 percent.

As expected, long-distance family caregivers had the highest OOP costs at $11,923 compared with family caregivers living with or nearby their care recipients.

The AARP report notes that increased OOP forces family caregivers to dip into savings, cut back on personal their spending, and they save less for retirement. Some must take out loans to make financial ends meet. Additionally, more than half of family caregivers are cutting back on leisure spending and also reported a report a work-related strain such as having to take unpaid time off.

“Many family caregivers experience a great deal of physical, emotional, and financial strain,” added Susan Reinhard, RN, PhD, Senior Vice President and Director, AARP Public Policy Institute. “This report highlights why AARP supports the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act that would require the development of a national strategy to support family caregivers.”

AARP Rhode Island State Director Kathleen Connell says that AARP’s recently released report verifies what most family caregivers know all too well: Providing for a loved one challenges caregivers in many ways and out-of-pocket expenses certainly is one of them, she says.

“In conversations I’ve had with caregivers over the years, I have found most all consider their efforts a responsibility as well as a labor of love. They rarely complain about cost because, I suspect, they try never to characterize caregiving as a burden,” says Connell..

Connell says, “With passage of the CARE Act and its implementation coming in 2017, Rhode Island is among the states leading the way in caregiver support. We cannot rest. You may be a caregiver. You may know a caregiver. You may someday rely on a caregiver. Any way you look at it, you need to be in the conversation about future needs.”

This study of a nationally representative sample of 1,864 family caregivers was conducted by GfK from July 18–August 28, 2016. All study respondents were currently providing unpaid care to a relative or friend age 18 or older to help them take care of themselves.

The full results of AARP’s caregiver report can be found here: http://www.aarp.org/caregivercosts