AARP launches campaign to support Family Caregivers

Published in RINewsToday on July 5, 2021

With caregiving costs skyrocketing, and with caregivers now estimated to be spending $7,242 annually out-of-pocket, AARP launches a national campaign to push for passage of the Credit for Caring Act.

The Washington, DC-based aging advocacy group has endorsed the bipartisan legislative proposal that would provide up to a $5,000 nonrefundable federal tax credit for eligible working family caregivers. The caregiver bill was introduced on May 18th  in the Senate by Senators Joni Ernst (R-IA), Michael Bennet (D-CO), Shelley Moore Capito (R-WV), and Elizabeth Warren (D-MA) and in the House by Representative Linda Sánchez (D-CA).

According to the National Alliance for Caregiving and AARP’s Caregiving in the U.S. 2020 study, there are an estimated 48 million Americans who provide care to either an adult or child with special needs at some time in the past 12 months. The study showed an increase of about 8 million caregivers from 2015 to 2020, indicating a significant growth in the nation’s caregivers’ population.

A 2019 AARP Public Policy Institute report noted that family caregivers in the United States provide $470 billion in uncompensated care.

Calling for Congressional Action to Assist Caregivers

AARP’s national campaign, urging passage of the Credit for Caring Act and more support for family caregivers, involves significant grassroots advocacy, including at least 60 tele-town halls, a major digital and video advertising initiative, and social media outreach through AARP’s national and state offices. Already, more than 100,000 contacts have been made with Members. In addition, more than 110 organizations, including 36 military and veterans service and support organizations, have joined AARP in asking Congress to pass the act. 

“This research reflects the incredible strain and sacrifices our 48 million family caregivers face every day. They are the backbone of our long-term care system, yet their backs are breaking from a lack of support,” said Nancy A. LeaMond, AARP Executive vice president and Chief Advocacy Officer in a June 29th statement announcing the kick-off of its new national grassroots campaign and also the release of its newest caregiver study, “AARP’s Caregiving Out- of-Pocket Costs Study.”

Adds AARP Rhode Island State Director Catherine Taylor: “This research reflects the incredible strain and sacrifices the 136,000 family caregivers in Rhode Island face every day. They are the backbone of our long-term care system, yet their backs are breaking,” 

“AARP research shows family caregivers contribute 114 million hours each year in their vital roles, “Taylor noted.

“We hear from so many caregivers from across the state who struggle financially,” Taylor added. “It is heartbreaking to know that cost, along with stress, fatigue and other factors take their toll over time. The need for support is more than evident.”

The Cost of Caregiving

Last month, AARP released its caregiver study, putting a spotlight on the out-of-pocket costs of caregiving, taking a close look at the financial strains on family caregivers and financial sacrifices (uncompensated care) they make in providing assistance to their loved ones. The study is a five year follow up to the landmark 2016 out-of- pocket caregiving study.

According to newly released study, nearly 8 in 10 of those caring for an adult family member (78%) are facing regular out-of-pocket costs, with the highest burden falling on younger caregivers and those who are Hispanic/Latino or African American. AARP researchers tracked what caregivers pay for using their own money and found average annual spending totaled $7,242 and, on average, 26% of the caregiver’s income. Housing expenses like rent or mortgage payments, home modifications, and assisted living made up more than half of caregivers’ spending, followed by medical expenses at 17%.

Out-of-pocket spending is much greater for some groups of caregivers, either in total dollars spent or as a percentage of average household income.

The researchers say that working caregivers who reported two work-related strains from caregiving, such as taking time off or working more hours, spend $10,525 each year on average – twice as much as caregivers who report one or no work-related strains.

AARP’s caregiver study also examined how caregiving financially impact between different generations of caregivers. Gen X caregivers spent the most money at $8,502. However, Gen Z and Millennial caregivers reported the greatest financial strain (spending on average $7,462 per year), spending a larger share of their household income. These caregivers have less time in the workforce to build financial security.

The AARP study found that Hispanic/Latino and African American caregivers also reported greater financial strain than White or Asian American caregivers. Hispanic/Latino caregivers spent on average, 47% of their household income on caregiving, and expenses for African American caregivers totaled, on average, 34% of income.

Researchers also found that caregivers caring for someone with Alzheimer’s disease/dementia or mental health issues tend to spend more ($8,978 per year and $8,384 per year, respectively) than those caring for someone without those conditions.

Work-related or personal strain as a result of caregiving can impact the caregiver’s long term financial security, too, say the researchers.  Nearly 47% of caregivers have experienced at least one setback as a result of being a caregiver. These setbacks include dipping into personal savings, cutting back on their own spending, and reducing how much they save for their retirement years.

More than 53% have experienced at least one work-related impact as the result of caregiving. Taking time off (both paid or unpaid) and working different hours are ways that caregiving impacts work. 

In addition to direct out-of-pocket spending, caregivers are also experiencing indirect financial setbacks. Nearly half of family caregivers (47%) experienced at least one financial setback such as having to cut back on their own health care spending, dip into their personal savings or reduce how much they save for their retirement.

Send your letters to Congress urging passage of the bipartisan Credit for Caring Act.  With an aging society and the number of caregivers increasing, a $5,000 nonrefundable federal tax credit for eligible working family caregivers might just help to pay the mounting costs of caregiving expenses. 

For more details about AARP’s caregiver study, go to:  https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2021/family-caregivers-cost-survey-2021.doi.10.26419-2Fres.00473.001.pdf.

More resources for family caregivers, including a free financial workbook, are available at aarp.org/caregiving.

Senate Aging Committee Tackles COVID-19’s Devastating Impact on Seniors

Published in the Woonsocket Call on May 24, 2020

In the midst of bipartisan bickering on Capitol Hill as to what should be included in the fifth coronavirus (COVID-19) stimulus package, the Senate Aging Committee holds Congress’s first hearing in Senate Russell Office Building 301 on the disproportionate toll the COVID pandemic is having on the nation’s seniors, particularly those who reside in nursing homes.

Adults ages 65 years and older represent two out of every five hospitalizations and eight out of every 10 deaths from the virus. The 1.5 million nursing home residents and seniors residing in group care settings (including assisted living facilities) are especially at risk. Nationwide, residents and workers in nursing homes and other long-term care settings represent more than one-third of all COVID-19 deaths. According to reports, to date more than 34,000 nursing home residents have died from COVID-19.

COVID-19’s Deadly Toll on Seniors

The Senate hearing, “Caring for Seniors Amid the COVID-19 Crisis,” held on Thursday, March 21, 2020, explored what can be done to better protect this vulnerable population. Over two hours, Senators heard testimony from a panel of experts who are supporting older adults in hospitals, nursing homes, home health settings, and the community. (Due to the limited access to the Capitol Complex, the public is only able to view the morning hearing live on the committee’s website at https://www.aging.senate.gov/hearings/caring-for-seniors-amid-the-covid-19-crisis.

“COVID-19 has brought tremendous hardship and tragedy, placing a heavy burden on the frontline workers, straining our healthcare and distribution systems, and imposing a deadly toll on our seniors in particular,” said Senator Susan Collins (R-Maine), who chairs the Senate Aging Committee. “Those in nursing homes and congregate care centers are especially at risk. Nationwide, nursing home residents represent one-third of all coronavirus deaths. In Maine, the toll on nursing home residents is even higher,” adds Collins.

“Our nation is facing the greatest public health crisis it has seen in a century. This terrible virus is causing death and destruction at lightning speed, especially among older Americans who are most vulnerable for complications from COVID-19,” added Ranking Member Bob Casey (D-Pennsylvania). “We have added unprecedented amounts of funding to purchase personal protective equipment, testing and ensure seniors in the community have access to home and community-based services that keep them out of congregate settings, but this is not nearly enough. We cannot stop working we cannot stop legislating, we cannot stop appropriating dollars to help our seniors,” says Casey.

“This unprecedented time calls for equally unprecedented action. The Administration has to do more and Congress has to do more to help our seniors and their families at every turn,” said Casey. During the hearing, the Senator highlighted his bill (S.3768), the Nursing Home COVID-19 Protection and Prevention Act, introduced with Senator Sheldon Whitehouse (D-Rhode Island, which would help mitigate the pandemic’s disproportionate impact on nursing homes by helping states purchase personal protective equipment (PPE) and testing and fund premium pay, overtime and other essential benefits for nursing home workers.

Taking a Look at Universal Testing of Nursing Home Residents

Collins directed her first question at the hearing to Dr. Tamara Konetzka, a professor of health services research at the University of Chicago, who has conducted research on the disproportionate impact of COVID-19 on nursing home residents and staff. She asked Dr. Konetzka to explain how universal testing can protect residents and eventually allow family members to safely visit their loved ones.

“Dr. Konetzka, I want to have you expand a little bit more on what we can do,” said Collins. “I believe that you recommended universal testing for every nursing home resident and staff, which I think is a good idea and have been recommending. How often, however, would you have to do that, and would that allow family members who have been tested to finally be able to visit their loved ones?”

“[I]t is very important to test all residents, and not wait until residents are…symptomatic, because by then it’s too late,” replied Dr. Konetzka. “[W]hat I’ve heard from geriatricians is generally weekly [testing] would be good or at least biweekly, so that residents can then be separated and the transmission can be stopped.”

Collins also emphasized that testing was needed at every long-term care facility, since even the highest rated nursing homes have been susceptible to outbreaks.

At the hearing, Senator Collins called for the release of additional health care provider funding that was made available through the CARES Act and the Paycheck Protection Program and Health Care Enhancement Act.

“[T]he ratings by CMS, the number of stars, has not proven to be a reliable indicator of which nursing homes are safest in this environment. And indeed, one of the worst outbreaks in Maine was at a nursing home that had five stars,” remarked Collins. “[W]hen we hear the statistics, which are so devastating…my heart just goes out not only to these patients, but to their families and to the staff of nursing homes and other assisted living facilities, congregate care settings. They’re all praying that COVID-19 does not find its way into their facility,”she said.

As the chief infectious disease specialist for New York University, Dr. Mark J. Mulligan oversees the treatment of COVID-19 patients at the University’s health system hospitals. At the hearing, he explained that seniors are at increased risk due to aging-related decline of the immune system as well as chronic conditions such as cancer, heart disease, lung disease, and diabetes, and that older adults who reside in nursing homes are the most vulnerable.

Medical Countermeasures to Combat COVID-19

Dr. Mulligan provided an overview of the medical countermeasures under development—diagnostics, monoclonal antibodies, and potential treatments such as remdesivir.

“For physicians, scientists, and leaders, the virus has continued to humble us. There’s so much we don’t know yet about diagnosis, prevention, and treatment,” said Dr. Mulligan. “The nurses and doctors I have worked with are incredibly dedicated and caring, but they have not had the medical countermeasures needed to effectively help many vulnerable seniors who have died of this disease,” he adds.

Finally, the final panelist, Dr. Steven Landers, the President and CEO of Visiting Nurse Association Health Group who oversees a team of 3,000 caregivers that cares for 9,000 people daily, provided a home health perspective on the public health crisis. According to Landers, maintaining this a supply of Personal Protective Equipment (PPE) is both challenging and expensive. “We are using over 17,000 surgical masks and over 3,500 N95 masks each week and we are also using thousands of isolation gowns, gloves, goggles and face shields. We have had to pay 7-10 times the usual prices and reach out to vendors all over the world, vendors who we couldn’t fully vet and verify, sometimes just hoping that shipments would arrive,” he say, calling on Congress to find ways prioritize home health and hospice agencies getting needed PPE.

“I have never seen the system so strained, but I also have never felt prouder of the skilled, compassionate, and courageous people I work with,” he said.

Herb Weiss, LRI’12, is a Pawtucket writer covering aging, health care and medical issues. To purchase Taking Charge: Collected Stories on Aging Boldly, a collection of 79 of his weekly commentaries, go to herbweiss.com.

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.