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.

Tele-Town Hall Gets the Word Out About COVID-19

Published in Woonsocket Call on May 3, 2020

This week alone, AARP in some 30 states conducted tele-town halls and 123 state calls have taken place since the pandemic surfaced. AARP Rhode Island, representing 132,000 members age 50 and over, was among the very first states to address the pandemic in a tele-town hall over two weeks ago.

At the AARP Tele-Town Hall, held Wednesday, April 22, during the 56-minute live event, state officials came to answer questions about how to cope with the devastating COVID-19 pandemic and how seniors can protect their health and stay safe. AARP Rhode Island’s John Martin, Communication Director, served as host and the panel of experts featured Office of Healthy Aging (OHA) Director Rosamaria Amoros Jones and Rhode Island Department of Health Medical Director Jim McDonald.

“We had 3,050 participants and, at one time, 974 people were on at the same time,” says Martin, who hosted the call. “We took 18 live calls in 55 minutes and, unfortunately had close to 20 people waiting to speak when time expired,” he adds, noting that it was AARP Rhode Island’s largest tele-town hall audience ever.

According to Martin, “Our in-call interactive poll revealed that nearly three quarters of those who cast votes were most interested in local resources and information on how to prevent the spread of the coronavirus, About a quarter said they were looking for help caring for family and loved ones, and information on insurance.”

Adds AARP State Director Kathleen Connell, “We were extraordinary pleased with the response to the tele-town hall,” who said she expects more statewide calls. “Just as important, however, is our virtual engagement with members and especially our volunteers. We are getting used to communicating online because that is where all of our ‘personal’ contact will be taking place, at least in the next few months — and that will include video conferencing, which we are testing now. We are impressed at how eager people 50 and older are ready to master the technology and join in.”

State Officials Talk COVID-19

“We are at a point where we are starting to see the benefits of our collective efforts of [maintaining] physical distancing, states OHA Director Jones. It is flattening the curb where the peak number of people requiring care at a time is reduced and the health care system is not overwhelmed, she says.

“It is really important for us that social or physical distancing as we also refer to it does not equal social isolation,” says Jones, noting that innovative approaches can keep people engaged with each other during this time of physical distancing.

Jones also gave a plug for Project Hello (http://oha.ri.gov/get-involved/volunteering/), a program that matches older adults with someone in the community for regular chats and for mutual support. “We’re in it for the long haul and it is going to take all of us working together neighbors helping neighbors,” she says.

“Effective quarantine and isolation efforts are critical today,” says Jones. “Our focus is on making it as easy and as comfortable as possible right now to stay home as we ready ourselves for the new normal that is on the other side of the pandemic,” she adds.

Jones called for those in quarantine and self-isolation reach out to Shopping Angels (www.facebook.com/shoppingangelsinc/) for assistance in personal shopping.

One caller expressed strong concern about Governor Gina Raimondo’s comment that people over age 60, at greater risk of severe COVID-19 illness, would be required to stay home for a longer period of time before being allowed to return to work or participate in community activities. “There have been no definitive decisions to implement restrictions at this time,” said Jones trying to reassure the caller.

Although there are programs and services detailed on the internet that can assist older Rhode Islanders to cope with the COVID-19 pandemic, one caller asked how these could be accessed without a laptop, computer or smart phone. Jones noted that The Point (http://oha.ri.gov/get-help/), operated by United Way Rhode Island and linked through 211 or by dialing (401) 462-4444, could provide information, referrals to needed programs and services.

How would people age 60 and over be protected against age discrimination when the governor is stating that it might take a longer time for these individuals to return to work? asked a caller. “It’s something we are thinking a lot about and a lot more [will] come as we talk about what the new normal is going to look like as we come through the peak of the pandemic, says Jones, stressing that age discrimination would not be tolerated.

Jones called for listeners to visit NextDoor.com, a website that promotes volunteer opportunities (including the delivery of groceries for seniors and those in quarantine), to see how they could help those impacted by COVID-19. For those seeking information about housing, Jones recommended a site, RI Havens, that provides a listing of hotels with affordable room rates for front line workers and for those persons stranded because of the virus and might need a safe place to stay. Details about food delivery options and food assistance programs can be found at the site, RI Delivers, that connects those in quarantine or isolation due to COVID-19 with opportunities to have food delivered by local and big-box grocery stores.

One caller asked Dr. James McDonald, Medical Director at RI Department of Health (DOH), about how a person could improve their immunity to assist them to successfully combat COVID-19. “You can’t always control the virus but you can control yourself,” says McDonald, stressing the importance of eating a healthy diet, regularly exercising and losing weight are actions to take to improving your health.

Making COVID-19 Transparent in Rhode Island’s Nursing Homes

During the Tele-Town Hall, McDonald was asked a question, “Why can’t the Health Department provide a list of long-term care and assisted living facilities that will show the number of patients/residents who have tested positive for COVID-19 and the number of facilities.” Twenty-four hours later this list appeared on the DOH Coronavirus Data Hub. (https://ri-department-of-health-covid-19-data-rihealth.hub.arcgis.com/).

McDonald noted that this particular virus has been so effective in causing the pandemic because it takes so long for a person to show symptoms and that other people who have it sometimes spread the virus before they even have symptoms and they don’t even know they should isolate because they don’t feel ill. It becomes important for a person to wear a mask when going outside to stop the spread of the virus, he says.

MacDonald says that it is highly unlikely to catch COVID-19 by touching grocery bags placed on your porch or through picking up a letter or package. He suggests constantly using hand sanitizer and washing your hands before and after picking up items touched by others.

AARP has created a special web page, http://www.aarp.org/RICOVID for coronavirus information and resources,” says AARP Rhode Island’s Martin added. “There you will find information about our ‘Community Connections’ program, aimed at combating isolation and loneliness, and a direct link to http://www.aarp.org/coronovirus, where all of AARP’s resources can be found.

State Lawmakers to Tackle High Prescription Drug Costs

Published in the Woonsocket Call on February 16, 2020

The Washington, DC-based AARP began its call for reducing prescription drug prices nationally in the late spring of 2019. At the same time, state legislatures around the country began taking up legislation. However, in Rhode Island, where the legislature meets only once a year, from January to June, it was too late to introduce bill in last year’s session.

AARP’s Elaine Ryan, VP of State Advocacy and Strategy reports: “We’re seeing an unprecedented number of states tackling the problem of high prescription drug prices. About 45 states expect to engage on prescription drug legislation or regulations this year. Right now, AARP is actively engaged in legislation in 25 states to address rising prescription drug prices. A variety of bills are moving through state legislatures, including bills on cost-sharing caps on insulin, price transparency, importation, price gouging, and affordability boards.”

Now, AARP Rhode Island is gearing up its lobbying efforts on Smith Hill this legislative session to put the brakes on rising prescription drug costs.

High Prescription Costs Top AARP Rhode Island’s Issues

State Director Kathleen Connell, of AARP Rhode Island, led the charge against skyrocketing drug costs by taking the group’s “Stop Rx Greed: Cut Drug Prices Now” campaign to four Rhode Island communities. At its AARP RI Community Conversations kickoff event in Warwick on Oct. 15, she called on Congress and the Rhode Island General Assembly to make prescription drugs more affordable a legislative priority. “We pay not only at the pharmacy counter, but through higher insurance premiums, and through the higher taxes we need to pay to fund programs like Medicare and Medicaid. Older Americans are hit especially hard. Medicare Part D enrollees take an average of 4 to 5 prescriptions per month, and their average annual income is around $26,000. One in three Americans has not taken a medication as prescribed because of the cost,” she said.

Connell reported that a recent AARP Rhode Island’s survey revealed that 79 percent of the member respondents called for lowering the price of prescription drugs, considering it the organization’s top priority.

During these events, using state-by-state specific data released last summer by AARP researchers, Connell was able to use Rhode Island data to document an increase in drug costs for seniors, identifying these drugs, the number of Rhode Islanders who need them and how much costs have risen.

Rhode Island’s state specific data revealed that the average annual cost of brand name prescription drug treatment increased 58 percent between 2012 and 2017, while the annual income for Rhode Island increased only 5.6 percent. Prescription drugs don’t work if patients can’t afford them, says the aging advocacy group, says Connell.

AARP Rhode Island also held Community Conversations in North Providence (Oct. 29), East Providence (Nov. 21) and Newport (Dec. 5). About 80 people attended these events, including in the legislative districts in those communities, along with Senate President Dominick J. Ruggerio (D-District 4, North Providence, Providence) and House Majority Leader Joseph Shekarchi (D-District 23, Warwick).

AARP Rhode Island Calls for Lower Prescription Drug Costs

On Feb. 5, over 120 people, including state lawmakers, Secretary of State Nellie M. Gorbea, and AARP Rhode Island staff and members, gathered in the State Room to attend the AARP Rhode Island Annual Reception. The event would become the backdrop to announce the Rhode Island Senate’s legislative agenda to tackle increasing prescription drug costs, the unveiling of package of eight bills supported by AARP Rhode Island.

At the event, Connell said: “This is an issue we are pounding on and I think you are going to see progress this year on this stellar important issue – Stop Rx Greed. I don’t need to go through the list of hardships suffered as these prices escalate way beyond reason. And we know this can’t continue the way it is. It’s probably not going to be a silver bullet that will solves this, but a lot of lot more work of the kind you have seen to make this iceberg move.”

Senate President Ruggerio along with 14 Senators from his chamber came to announce their support of the AARP sponsored legislation that would provide a pathway to import less-costly drugs from Canada, increase more market transparency, raise senior’s awareness around price changes and limit patients’ share of the costs.

House Majority Leader Shekarchi, came to the legislative reception with 20 House lawmakers, to share their concern about the lack of affordability of prescription. Shekarchi personally knows about high drug costs. “I am a Type II Diabetic and I have a lot of prescriptions. I feel the pain because I pay $30 a pill with the copay. I know what it costs and it is ridiculous,” he says.

“Patients deserve to know what drugs will cost, how they can pay for them in a fair and reasonable way, and how they can take advantage of any or all opportunities to save on those costs,” said Shekarchi, stressing that “people living on fixed incomes should not have to skimp between doing what is essential in buying prescription drugs, or food or housing.”

Shekarchi noted that he has already put in legislation with House colleagues, calling for Rhode Island’s insurers to completely cover the cost of copays for epinephrine injectors, or EpiPens. The bill would help reduce the high cost of the injectors, which has prevented some people with allergies from obtaining the life-saving device. The Warwick lawmaker also cosponsored a bill to create a prescription drug affordability board to protect Rhode Islanders from the high costs of prescription drug products.

Shekarchi concluded, by announcing that House lawmakers will shortly join the Senate in introducing AARP’s package of legislation (from five up to eight bills).

In a statement announcing the introduction of Senate bills to lower prescription drug costs, Ruggerio said: “Rhode Island’s population is one of the oldest in the nation, and the high prices consumers pay for prescriptions have a significant impact on us. Most older Rhode Islanders have limited means, and the high costs mean many people are cutting back on essentials of living or taking less than their prescribed amount of expensive drugs. The pharmaceutical industry is not going to address this on its own, so it’s up to the state and federal governments to take action.”

Tackling the High Cost of Prescription Drugs

After AARP Rhode Island’s Annual Legislative Reception, the following legislative proposals were thrown into the legislative hopper that day and companion measures have now been introduced in the House.

Senate legislative proposals included:

A bill limiting changes to a health plan’s drug formulary — its list of covered drugs — to protect consumers. Sponsored by Sen. Elizabeth A. Crowley (D-District 16, Central Falls, Pawtucket), this legislation (S 2324) would generally limit plans to modifying formularies at renewal time with 60 days’ notice and require that modification be identical among all substantially identical benefit plans.

Legislation (S 2319) sponsored by Senate Majority Leader Michael J. McCaffrey (D-District 29, Warwick) to cap out-of-pocket expenses for prescription drugs at the federal limits for high-deductible health plans, currently $1,400 for individual plans and $2,800 for family plans.

A bill (S 2317) sponsored by Senate Majority Whip Maryellen Goodwin (D-District 1, Providence) to prohibit cost sharing for patients 45 or older for colorectal screening examinations, laboratory tests and colonoscopies covered by health insurance policies or plans.

Legislation (S 2322) sponsored by Sen. Melissa A. Murray (D-District 24, Woonsocket, North Smithfield) to limit the copay for prescription insulin to $50 for a 30-day supply for health plans that provide coverage for insulin.

A bill sponsored by Sen. Walter S. Felag Jr. (D-District 10, Warren, Bristol, Tiverton) requiring pharmacists to advise patients about less-expensive generic alternatives to their prescriptions or when it would cost them less to pay for their drugs outright instead of using their insurance. The bill (S 2323) would also bar pharmacy benefits managers from imposing gag orders on pharmacists that prevent them from making such disclosures.

A prescription drug transparency act (S 2318), sponsored by Senate President Ruggerio. This bill would requires pharmaceutical drug manufacturers to provide wholesale drug acquisition cost information to the Department of Health and pharmacy benefit managers to provide information related to drug prices, rebates, fees and drug sales to the health insurance commissioner annually. Such transparency would help payers determine whether high prescription costs are justified.

A bill (S 2321) sponsored by Sen. Louis P. DiPalma (D-District 12, Middletown, Little Compton, Tiverton, Newport) to create a state-administered program to import wholesale prescription drugs from Canada, which has drug safety regulations similar to those of the United States. Such programs are allowed under federal law, with approval from the U.S. Food and Drug Administration.

Legislation (S 2320) sponsored by Sen. Cynthia A. Coyne (D-District 32, Barrington, Bristol, East Providence) to create a prescription drug affordability board tasked with investigating and comprehensively evaluating drug prices for Rhode Islanders and possible ways to reduce them to make them more affordable.

As the 2020 Presidential election looms, Congress and state law makers are very aware that lowering skyrocketing prescription drug costs is a top priority for their older constituents. With more than 250 bills passed by the Democrats in the House (some of these bills would lower prescription drug costs) sitting in Senate Majority Leader Mitch McConnell’s “legislative graveyard,” the Rhode Island General Assembly must take the lead to legislatively fix the problem.

Connell anticipates that there might be more than 15 drug bills in the House and Senate, 10 submitted by AARP. Rhode Island lawmakers must seriously consider these legislative proposals and join the 26 states that have already passed new laws aimed at lowering prices for prescription medications.