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.

Uncompensated Cost of Caregivers is a Whopping $470 Billion

Published in the Woonsocket Call on November 17, 2019

Approximately 41 million unpaid family caregivers provided an estimated 34 billion hours of care in 2017 — worth a whopping $470 billion — to their parents, spouses, partners, and friends, according to the latest report in AARP’s Valuing the Invaluable series. The 2019 estimated value of family caregiving is based on 41 million caregivers providing an average of 16 hours of care per week, at an average value of $13.81 per hour. Previous AARP Public Policy reports were released in 2006, 2008, 2011 and 2015.

“It’s encouraging to see greater recognition of the emotional, physical and financial struggles that caregivers face,” said Susan Reinhard, senior vice president, AARP Public Policy Institute, in an April 14th statement announcing the release of the 32-page report. “But the demands on family caregivers are not just a family issue and we must continue to push for meaningful support and solutions,” says Reinhard.

Every caregiver, as well as their families, know the value of their efforts,” said AARP Rhode Island State Director Kathleen Connell. “In Rhode Island, the estimated total value of 114 million hours of work by the state’s 136,000 caregivers is $1.8 billion. The aggregate is astounding, making a clear case for supporting this vital commitment made by family and loved ones.”

“These numbers inspire our members who spend many hours at the State House as AARP Rhode Island advocacy volunteers,” Connell added. “They have helped pass key legislation — the CARE Act, paid caregiver leaves and many other key bills — that have given caregivers resources and opportunities to make their task less daunting. Caregivers are truly invaluable,” she says.

Putting a Spotlight on the Nation’s Caregivers

AARP’s report notes that the estimated $470 billion equates to about $1,450 for every person in the United States (325 million people in 2017). Its economic impact is more than all out-of-pocket spending on US health care in 2017 ($366 billion). Uncompensated care provided by caregivers is also three times as much as total Medicaid spending on long-term services (LTSS) and supports ($154 billion in 2016) and even the total spending from all sources of paid LTSS, including post-acute care ($366 billion in 2016).

The AARP researchers say that the estimate of $470 billion in economic value of uncompensated care is consistent with nearly two decades of prior research studies, all of which found (like the current study) that the value of unpaid family care vastly exceeds the value of paid home care.

The AARP report, Valuing the Invaluable: 2019 Update Charting a Path Forward, also explores the growing scope and complexity of caregiving, including an aging population, more family caregivers in the paid workforce, and the increasing amount of medical and nursing tasks entering the home.

According to the AARP report, family care givers, who provide day-to-day supports and services and manage complex care tasks, are becoming more diverse. While most family caregivers are women, about 40 percent are men who are providing more assistance than just driving to doctor’s appointments and grocery stores or paying bills. Like all caregivers, they are assisting a parent, spouse or friend with bathing and dressing, pain management, managing medication, changing dressings, helping with incontinence and even preparing special diets.

While a majority of baby boomers are providing caregiving services, a growing number of younger adults are now shouldering this responsibility, too. Nearly 1 in 4 (24 percent) are millennials (born between 1980 and 1996). Despite their low salaries, the young adults are spending more of their salary on caregiving expenses than other generations. The researchers estimated that this spending in 2016 was about 27 percent of their income.

About 60 percent of family caregivers are juggling a job and providing care, too. This will continue as aging baby boomers choose to remain in the labor force to bring additional income into their household. Workplace benefits for caregivers becomes become even more important as they face economic and financial strain in their later years.

For those employees who choose to leave their job to become a full-time caregiver, they risk both short-and long-term financial difficulties, say the researchers.

Finally, the researcher’s recommendations to better support family caregivers included developing a robust and comprehensive national strategy with the needs of an increasingly diverse caregiver population included; providing financial relief and expanding workplace policies; developing caregiver training programs; and expanding state and federal funding for respite programs.

More Work Needs to Be Done

The AARP report warns that the rising demand for caregivers with the graying of the nation’s population, shrinking families will drastically reduce the supply. In 2010, there were 7.1 potential family caregivers for every person age 80 and over. By 2030, there may be only 4.1 potential caregivers for every person age 80 and over, they say.

Although significant federal and state policy are already in place to assist the nation’s caregivers, more work needs to be done, say the researchers. They call on Congress and state lawmakers to keep pace with the changing demographic, social trends and needs of the family caregiver.

Resources and information on family caregiving, including AARP’s Prepare to Care
Guides, are available at http://www.aarp.org/caregiving.

Caregivers Find it Difficult to Shop at Retail Stores

Published in the Woonsocket Call on September 22, 2019

Survey findings from a recently released national study, by the Washington, DC-based AARP and NORC at the University of Chicago, will send a strong message to America’s businesses.

With the graying of America, retail stores must change the way they do business in order to attract customers who provide unpaid family caregiving to their loved ones.

The study, “Family Caregiver Retail Preferences and Challenges,” and its survey findings were presented at the AARP Executive Summit, The Price of Caring, on September 10 in Washington, D.C. The summit’s mission was to highlight public- and private-sector solutions to support Americans who care for an older or ill loved one.

In-store Shopping is a Struggle

While juggling a multitude of caregiving tasks, caregivers say a lack of accommodations for their frail family members is a problem for shopping at retail stores. The study’s findings reveal that in-store shopping is a struggle for one-third of the nation’s 40 million unpaid family caregivers. Many leave their loved ones at home or choose to shop online, despite strongly preferring the in-store experience.

A whopping 93 percent of caregivers surveyed say they shop for the person they care for. Among these caregivers, most report shopping monthly for groceries (87 percent), basic household items (65 percent), toiletries (61 percent), prescription drugs (58 percent) and other health products (52 percent for persons they regularly care for.

“Americans who take care of loved ones are often strapped for time, and many face logistical challenges doing something as simple as going to the grocery store,” said Nancy LeaMond, AARP executive vice president and chief advocacy & engagement officer, in a September 10th statement announcing the study’s findings. “Retailers can score big with caregivers if they make it easier for them to bring their loved ones along when they shop,” says LeaMond.

The AARP survey findings detail simple but important changes retailers should consider to enhance the shopping experience of caregivers. Businesses can provide dedicated parking spots and ample comfortable reserved seating for older shoppers to rest, wider aisles that easily accommodate both wheelchairs and shopping carts, longer store hours, and train their staff to specifically work with caregivers.

The Pros and Cons of In-Store and On-Line Shopping

The survey findings in the 26-page study reveal that 82 percent of the caregiver respondents prefer to shop in-store because of the ability to touch the products and they don’t have to wait for a product’s delivery or pay for shipping charges. But 84 percent say they shop online for ease and convenience, despite preferring an in-store experience. Forty three percent of the respondents say a major reason they leave their loved one at home when shopping is because the store environment is too difficult for the recipients of their care.

More than 56 percent of the caregiver respondents say that when shopping on behalf of their loved ones they spend at least $50 per month. Forty one percent note they spend more than $250 or more a month when shopping for a loved one.

Businesses Must Listen to the Shopping Needs of Caregivers

We listen to a lot of caregivers and it seems clear that, regardless of the challenge, the help they want most is for somehow to find a convenient, time-efficient and accommodating means of getting what they need, when they need it,” said Rhode Island AARP State Director Kathleen Connell. “In retailing, convenience is a huge competitive advantage these days. But there are aspects of convenience that – for caregivers – go beyond finding what you need on Amazon and having it delivered the next day or two,” says Connell.

“Some caregiver needs are in the ASAP category and they head for brick and mortar retail establishments. Shopping for food and clothes, picking up a prescription or medical supplies, even simple things such as picking up dry cleaning feel like ‘emergencies’ because time is so. Imagine this in the context of being with someone in a walker or wheelchair,” notes Connell.

Connell urges retailers to take this report to heart. “There is an incredible amount of goodwill to be earned if you think about caregivers, as well as those in their care, and give them the consideration that makes their tasks a little easier.”

The AARP survey was conducted by NORC at the University of Chicago and is based on a nationally representative survey of 1,127 Americans who provide unpaid care for an adult age 18 or older. The survey was funded by AARP and used AmeriSpeak®, the probability-based panel of NORC at the University of Chicago. Interviews were conducted between Aug. 1-19, 2019, online and using landlines and cell phones. The overall margin of sampling error is +/- 4.1 percentage points at the 95% confidence level, including the design effect. The margin of sampling error may be higher for subgroups.

To read the full report, visit: http://www.aarp.org/caregivershopping.

For more details about AARP’s Caregiver Shopping study, contact Laura Skufca, AARP Research, Lskufca@aarp.org.