AARP Gives Us a Snapshot of the Millennial Caregiver

Published in the Woonsocket Call on June 3, 2018

AARP’s latest caregiver report places the spotlight on the Millennial generation, those born between 1980 and 1996, ages 22 to 38 in 2018. “Millennials: The Emerging Generation of Family Caregivers,” using data based primarily from the 2015 Caregiving in the U.S. study, notes that one-in-four of the nearly 40 million family caregivers in America is now a Millennial.

The 11-page report, released by AARP’s Public Policy Institute on May 22, 2018, takes a look at the Millennial’s generational experiences and challenges as they support an aging parent, grandparent, friend or neighbor with basic living and medical needs.

“Caregiving responsibilities can have an impact on the futures of younger family caregivers, who are at a particular time in their lives when pivotal social and professional networks are being formed,” said Jean Accius, PhD, Vice President, AARP Public Policy Institute, in a statement with the report’s release. “We must consider the unique needs of millennial family caregivers and ensure that they are included in programs and have the support they need to care for themselves as well as their loved ones,” she says.

The Millennial Caregiver

According to the AARP report, Millennial caregivers are evenly split by gender but also the most diverse group of family caregivers to date, notes the report. More than 27 percent of the millennial caregivers are Hispanic/Latino, or 38 percent of all family caregivers among Hispanic/Latinos.

The AARP report notes that Millennials are the most diverse generation of family caregivers when compared to other generations. Eighteen percent are African-American/Black, or 34 percent of all African-American/Black family caregivers. Eight percent are Asian American/Pacific Islander, or 30 percent of all the AAPI family caregivers, says the report, noting that less than 44 percent are white, or 17 percent of all white family caregivers. Finally, twelve percent self-identify as LGBT, which makes them the largest portion of LGBT family caregivers (34 percent) than any other generation.

About half of the Millennial caregivers (44 percent) are single and never married while 33 percent are married. If this demographic trend continues a smaller family structure will make it more likely to have a caregiver when you need one.

More than half of the Millennial caregivers perform complex Activities of Daily Living (ADLs), including assisting a person to eat, bath, and to use the bathroom, along with medical nursing tasks, at a rate similar to older generations. But, nearly all Millennials help with one instrumental activity of daily living including helping a person to shop and prepare meals.

While Millennial caregivers are more likely than caregivers from other generations to be working, one in three earn less than $30,000 per year. These low-income individual’s higher out-of-pocket costs (about $ 6,800 per year) related to their caregiving role than those with higher salaries, says the AARP report.

As to education, Millennial caregivers have a high school diploma or has taken some college courses but not finished. But, one in three have a Bachelor’s Degree or higher.

According to the AARP report, 65 percent of the Millennial caregivers surveyed care for a parent or grandparent usually over age 50 and more than half are the only one in the family providing this support. However, these young caregivers are more likely to care for someone with a mental health or emotional issue — 33 percent compared to 18 percent of older caregivers. As a result, these younger caregivers will face higher emotional, physical and financial strains.

The AARP report notes that Millennials are the most likely of any generation to be a family caregiver and employed (about 73 percent). Sixty two percent of the boomers were employed and were caregivers. On top of spending an average of more than 20 hours a week (equivalent to a part-time job) in their caregiving duties, more than half of the Millennials worked full-time, over 40 hours a week. However, 26 percent spend more than 20 hours of week providing family care.

Although most Millennial caregivers seek out consumer information to assist them in their caregiving duties, usually from the internet and from a health care professional, the most frequent source of information is from other family members and friends.

While Millennial caregivers consume information at a higher rate, most (83 percent) want more information to supplement what they have. The tope areas include stress management (44 percent) and tips for coping with caregiving challenges (41 percent).

A Changing Workforce

Millennials are encountering workplace challenges because they are less understood by supervisors and managers than their older worker colleagues. More than half say their caregiving role affected their work in a significant way, says the AARP report. The most common impacts are going to work late or leaving early (39 percent) and cutting back on work hours (14 percent).

As we see the graying of America, it makes sense for employers to change their policies and benefits to become more family friendly to all caregivers, including Millennials, to allow them to balance their work with their caregiving activities.
It’s the right thing to do.

To read the full report, visit: https://www.aarp.org/ppi/info-2018/millennial-family-caregiving.html.

Visit http://www.aarp.org/caregiving for more resources and information on family caregiving, including AARP’s Prepare to Care Guides.

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2050 and the Caregiver Dilemma

Published in the Woonsocket Call on April 22, 2018

The year 2030 marks an important demographic turning point in U.S. history according to the U.S. Census Bureau’s 2017 National Population Projections, released last month. By 2030, older people are projected to outnumber children. In the next twenty years, when these aging baby boomers enter their 80s, who will provide informal caregiving to them.

Almost three years earlier, in a July 2015 report, “Valuing the Invaluable: 2015 Update Undeniable Progress, but Big Gaps Remain,” the AARP Public Policy Institute warned that fewer family members will be around to assist older people with caregiving needs.

According to AARP’s 25-page report, coauthored by Susan C. Reinhard, Lynn Friss Feinberg, Rita Choula, and Ari Houser, the ratio of potential family caregivers to the growing number of older people has already begun a steep decline. In 2010, there were 7.2 potential family caregivers for every person age 80 and older. By 2030, that ratio will fall sharply to 4 to 1, and is projected to drop further to 3 to 1 in 2050.

Family caregivers assisting relatives or close friends afflicted with chronic, disabling, or serious illness, to carry out daily activities (such as bathing or dressing, preparing meals, administering medications, driving to doctor visits, and paying bills), are key to keeping these individuals in their homes and out of costly nursing facilities. What is the impact on care of aging baby boomers when family caregivers no longer provide assistance in daily activities?

“In 2013, about 40 million family caregivers in the United States provided an estimated 37 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion in 2013, up from an estimated $450 billion in 2009,” notes AARP’s caregiver report. What will be the impact on the nation’s health care system without family caregivers providing informal care?

The Census Bureau’s 2017 National Population Projections, again puts the spot light on the decreasing caregiver ratio over the next decades identified by the AARP Policy Institute, one that must be planned for and addressed by Congress, federal and state policy makers.

Who Will Take Care of Aging Baby Boomers?

With the expansion in the size of the older population, 1 in every 5 United States residents will be retirement age. Who will provide informal caregiving in our nation with a larger adult population and less children to serve as caregivers?

“The aging of baby boomers means that within just a couple decades, older people are projected to outnumber children for the first time in U.S. history,” said Jonathan Vespa, a demographer with the U.S. Census Bureau. “By 2035, there will be 78.0 million people 65 years and older compared to 76.4 million under the age of 18.”

The 2030s are projected to be a transformative decade for the U.S. population, says the 2017 statistical projections – the population is expected to grow at a slower pace, age considerably and become more racially and ethnically diverse. The nation’s median age is expected to grow from age 38 today to age 43 by 2060.

The Census Bureau also observed that that as the population ages, the ratio of older adults to working-age adults, also known as the old-age dependency ratio, is projected to rise. By 2020, there will be about three-and-a-half working-age adults for every retirement-age person. By 2060, that ratio will fall to just two-and-a-half working-age adults for every retirement-age person.

Real Challenges Face Congress as the Nation Ages

Jean Accius, Ph.D., AARP Policy Institute’s Vice President, Independent Living, Long-Term Services and Supports, says, “The recent Census report highlights the sense of urgency to develop innovative solutions that will support our growing older adult population at a time when there will likely be fewer family caregivers available to help. The challenges that face us are real, but they are not insurmountable. In fact, this is an opportunity if we begin now to lay the foundation for a better system of family support for the future. The enactment of the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act, which would create a strategy for supporting family caregivers, is a great path forward.”

Max Richtman, President and CEO of the Washington, DC-based National Committee to Preserve Social Security and Medicare, gives his take on the Census Bureau’s 2017 statistical projections, too.

“Despite how cataclysmic this may sound, the rising number of older people due to the aging of baby boomers is no surprise and has been predicted for many years. This is why the Social Security system was changed in 1983 to prepare for this eventuality. Under current law, full benefits will continue to be paid through 2034 and we are confident that Congress will make the necessary changes, such as raising the wage cap, to ensure that full benefits continue to be made well into the future,” says Richtman.

Richtman calls informal caregiving “a critical part of a care plan” that enhances an older person’s well-being. “While there currently are programs such as the Medicaid Waiver that will pay family members who provide caregiving support more can be done to incentivize caregiving so that loss of personal income and Social Security work credits are not barriers to enlisting the help of younger individuals to provide informal support services,” he says.

Adds Richtman, the Medicare and Medicaid benefits which reimburse for the home-based services and skilled nursing care “will be unduly strained ”as the diagnosed cases of Alzheimer’s disease skyrockets with the growing boomer population. He calls on Congress to “immediately provide adequate research funding to the National Institutes of Health to accelerate finding a cure in order to save these programs and lower the burdens on family caregivers and the healthcare system. “

Finally, AARP Rhode Island State Director Kathleen Connell, says “Our aging population represents challenges on many, many fronts, including healthcare, housing, Social Security, Medicare and, of course, caregiving. It would be nice to think everything would take care of itself if there were more younger people than older people. But that misses the point entirely. The needs of older Americans are a challenge to all Americans, if for no other reason than most of us end up with multiple late in life needs. And too many reach that point without savings to cover those needs.”

“It’s worth noting, by the way, that many of the solutions will come from people 50 and older — many of whom will work longer in their lives to improve the lives of older Americans. We need to stop looking through the lens of ‘old people’ being the problem and instead encourage and empower older Americans to take greater control over their lives as they help others,” says Connell.

“Congress needs to focus on common sense solutions to assure families that Social Security and Medicare are protected. The healthcare industry needs to face the medical challenges. And at the state and local level, we must focus on home and community-based health services,” adds Connell.

For details about the Census Bureau’s 2017 statistical projections, co to http://www.census.gov/newsroom/press-releases/2018/cb18-41-population-projections.html.

For more information about AARP’s July 2015 caregiver report, go to http://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf.

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GOP Health Care Proposal Pulled at Last Moment

Published in Woonsocket Call on March 26, 2017

Days ago, unified Democratic lawmakers combined with a deep philosophical wedge between the conservative House Freedom Caucus and moderate Republicans over policy details of the American Health Care Act (AHCA), forced the Trump Administration and House Speaker Paul Ryan to pull the AHCA proposal minutes from a floor vote to steer it away from a humiliating legislative defeat last Friday. Interestingly, the seventh anniversary of President Barack Obama signing the Affordable Care Act (ACA), his signature health care law, took place one day before the House vote.

A day before Friday’s scheduled vote to dismantle and repeal Obama’s ACA, President Donald Trump taking a high-risk negotiation tactic straight out of his bestselling book, “The Art of the Deal,” gave a late-Thursday night ultimatum to the House GOP lawmakers. Trump told to them to vote up or down on AHCA or he would be prepared to move on to other legislative agenda items.

As to Trump’s ultimatum to GOP House lawmakers, CNN Presidency Historian Timothy Naftali noted on CNN Newsroom with Fredricka Whitfield, “He played chicken and he blinked.”

House GOP Making Legislative Sausage

In a report issued on March 13, the Congressional Budget Office (CBO), detailed the drastic impact of the initial AHCA legislative proposal. CBO, a federal agency that provides budget and economic information to Congress, found that AHCA would result in 24 million losing health insurance coverage by 2026, Medicaid would be cut by $880 billion over the next ten years, and premiums and out-of-pocket costs would skyrocket increase, particularly for older adults and individuals with lower incomes.

Earlier this week, on Monday, Ryan and his House GOP Leadership team made eight amendments to AHCA to pull in skeptical GOP moderate and conservative lawmakers, including the controversial speeding up tax cuts while whittling down the Medicaid program. Later, on March 23, CBO confirmed that these amendments would lead to essentially the same level of coverage losses, about 24 million people and cost increases for individuals and would yield $187 billion less in savings than the original GOP health care proposal.

Meanwhile, on Wednesday, Senator Wyden and Congressman Pallone revealed that the Center for Medicare & Medicaid Services’ independent Actuary “estimated that the repeal of the tax on prescription medications, known as the ‘pharma fee,’ beginning January 1, 2017 would increase Medicare Part B premiums by $8.7 billion through fiscal year 2027.” noted the Center for Medicare Advocacy.

On Thursday, three more amendments were offered to sway GOP House critics. One would strip the requirement that insurance companies cover essential health benefits (EHB). This amendment would effectively eliminate annual out-of-pocket caps, reinstate annual and lifetime coverage limits, and gut protections for pre-existing conditions. Another would delay – but not remove – the Medicare payroll tax cut that will undermine Medicare’s financing and its future stability.

After the defeat of AHCA, Trump blamed the Democrats for the House GOP’s failure to pass its health care proposal to scrap Obamacare. “The Democrats were not going to give us a single vote,” he said, warning that “Obamacare will explode” forcing the opposition party back to the negotiation table to craft a better health care law.

House Speaker Ryan also noted that “We are going to be living with Obamacare for the foreseeable future.”

“We just really did not get a consensus today,” say Ryan. “That’s why I thought the wise thing to do was not proceed with a vote but to pull the bill. When asked if he was going to try “to prop it up, Ryan responded by saying “it is so fundamentally flawed, I don’t know that that is possible.”

Sighs of Relief from Aging Groups, Democrats

“The American Health Care Act is not American in spirit or health care in substance. In fact, it’s a tax cut bill for the wealthy, not a health care bill for the people. It will make America sicker. Congress should reject this charade and this disaster of a bill today,” states Judith Stein, Executive Director of the Center for Medicare Advocacy.

“The House Congressional leadership was destined to lose on their disastrous American Health Care Act, which would have effectively repealed Obamacare and hurt seniors, including beneficiaries of Medicare and Medicaid. It doesn’t matter whether they pulled or failed to pass the bill,” says Richtman, President and CEO of the National Committee to Preserve Social Security and Medicare in a statement. “It needed to go down and we thank the millions of National Committee members and supporters – and those of other senior advocacy organizations – whose protests were loud, numerous, and furious.”

“No one knew’ that health care could be so complicated. Hopefully, he has learned a lesson… that health legislation is built on a complex foundation that considers the real human needs – and costs – of changes to the system. A common refrain from Donald Trump during the campaign was, ‘What do you have to lose by electing me?’ Now we know what’s at stake: affordable health care for older Americans, Medicare, and Medicaid,” says Richtman.

“The leadership’s decision to withdraw the bill from consideration proves that the voices of Americans are very powerful. This harmful legislation would have added an Age Tax on older Americans and put vulnerable populations at risk,” says AARP Executive Vice President Nancy LeaMond, in a statement.

LeaMond calls on Congress to focus on the issues important to older Americans and their families, including: protecting and improving Medicare’s benefits and financing; providing access to affordable quality coverage; preventing insurers from engaging in discriminatory practices; lowering prescription drug costs; providing new incentives to expand home and community based services; and strengthening efforts to fight fraud, waste, and abuse.

Adds, Justice in Aging Executive Director, Kevin Prindiville, “Congress tried to rush this disastrous bill through Congress without regard for the health and safety of older Americans and their families, and such a bill cannot and should not be revived. Older adults and their families rely on Medicaid and Medicare and these programs must be protected.”

Compromise might well be the way to make sound changes to the nation’s health care law, says Rep. David N. Cicilline (D-RI), who serves as House Democratic Policy and Communications Committee. “The Affordable Care Act is a good law, and Republicans and Democrats should be working together to make it even better. If Republicans ever decide to come to the table, we should work together to increase competition, expand coverage, and bring down premiums. That’s a decision that Republicans have to make – whether to work with Democrats or continue down the path they’re on,” he says.

Rep. James Langevin (D-RI) also stresses the importance of reaching over the aisle to create a better health care law and getting away from partisan bickering. “It’s time for Republicans to move on from their misguided crusade to dismantle the ACA. The health care law has brought insurance coverage to millions of Americans. Its consumer protections, premium assistance, essential health benefits, and countless other provisions that were at risk of elimination have improved our nation’s health and saved lives. We must work together in a bipartisan manner to strengthen and improve the ACA, not risk the health and wellbeing of everyday Americans for an empty, partisan victory,” he says.

Can Our Nation Survive Trump and the GOP’s Control of Capitol Hill?

Published in Woonsocket Call on January 8, 2017

Almost two months ago when GOP presidential candidate Donald Trump trounced his Democratic challenger Hillary Clinton and his party took control of both chamber of Congress. Trump’s surprising victory stunned both voters and political commentators and pundits covering the heated presidential race. According to a November 16, 2016 Gallup Poll, 80 percent of Trump’s voters are “excited,” while 76 percent of Clinton’s voters say they are “afraid.” A large majority of the respondents (75 percent) shared one reaction: “surprise.”

Days after the tumultuous election, Darrell M. West, vice president and director of Governance Studies at the Washington, D.C.-based the Brookings Institution, penned his thoughts about how president-elect Trump might govern the divided nation. His posting, “Four Scenarios for a Trump Presidency,” can be found on the Brooking’s FixGov blog, written on November 14, 2016.

Speculating on Trump’s White House Governance

In his 1,286 word blog, West, an American author, political scientist, pollical commentator who formerly taught political science at Brown University for 26 years, says that Trump might choose to govern as a traditional Republican endorsing tax cuts, deregulation and repealing Obamacare. Like other GOP politicians he would call for reinstituting law and order, fighting ISIS and other extremist militant groups, and controlling illegal immigration from coming into this country. “These typical GOP positions might resolve his philosophical differences on “entitlement reform and free trade,” says West, an author or co-author of 22 books.

Trump just might even turn over the reins of the presidency to Vice President Mike Pence, House Speaker Paul Ryan, and Chief of Staff Reince Priebus, says West, these individuals “becoming the de facto prime minister.”

According to West, like president-elect Trump did during the presidential campaign, he might take on the role of a “popular rogue.” A “populist Trump could break conventional political rules and “attack the political establishment to represent the little guy,” notes West’s blog posting.

West also suggests that Trump might ultimately fail as president. After all he lost the popular vote by 2 percentage points or nearly three million votes and alienated women, millennials, minorities and immigrants with his insulting comments. Scandals and disclosures about his personal behavior and continuing concerns about serious financial conflicts of interest could derail his “honeymoon” phase at the beginning of his presidential term and negatively impact his popularity ratings, he says.

West also speculates in his blog that policy backlashes due to millions losing health care coverage by his push to repeal Obamacare, privatizing Medicare or gutting Social Security, a slow-down in the economy or even Trump’s continued liking of Russian President Vladimir Putin, might make him a one term president, like President Jimmy Carter.

Finally, public outcry and violent protest may turn Trump into an authoritarian leader. If this happens West expresses concerns smear campaigns (waged by White House Strategist Steve Bannon), the use of federal agencies to “attack adversaries” and the use of local police to “crack down” on protestors. “Firing top intelligence officials would suggest that Trump wants compliant people who will do his bidding against foreign and domestic adversaries,” he says.

Big Changes with the GOP in Charge

“It is a scary time in American politics,” says West, who expects to see big changes on Capitol Hill in 2017. The Brookings political pundit predicts that a Trump White House with a GOP controlled Congress will tackle large tax cuts, corporate tax reform, repealing Obamacare (but not having anything to replace it with), and reversing the Dodd Frank financial regulation bill. With the Republicans controlling both chambers of Congress he does not expect gridlock during the first six months of the 115th Congress.

West predicts that in the long-run many of the GOP president and Republican Congressional leadership policy initiatives will be problematic. “They are governing as if they have a clear mandate even though they lost the popular vote, he says.

West, like some political observers, expect many of the GOP’s conservative policy proposals to hurt the people who voted for Trump. The tax cuts go disproportionately to the top one percent and proposed changes in Medicare and Medicaid will limit medical care, he said.

“In a couple of years, the economy probably will be much weaker than it is today, which will undermine the very rationale of Trump’s candidacy,” says West, noting that if this happens the newly elected president could have a 30 percent job approval rating by 2018. “Of course, that is when he really will become dangerous! The risk is he may try things to improve his poll numbers, such as identifying scapegoats or confronting adversaries,” warns West.

“GOP Congressional leaders have plans to privatize Medicare and block grant Medicaid to the states. This will impose limitations on medical care and make it more difficulty for needy people to get the help they need,” adds West, who also sees Republicans moving to reduce home care and medical assistance to America’s elderly.

West sees the “GOP legislative initiatives as being very contentious politically, and will reinforce perceptions of the GOP as cold and heartless [to Americans].”

“Democrats will not be able to pass legislation. Their main power will be trying to block things they don’t like or stop nominations at confirmation hearings that they find problematic,” says West, noting that they will be put in a defensive posture. “They will seek to protect certain gains made during the Obama administration. However, Congressional Democratic leadership may well be able to work together on infrastructure investments,” he says.

West believes that Trump’s fix for the economy will not work. “In the longer-run, there is a risk that inflation will go up. Interest rates already have risen in anticipation of this,” he says.

“The market is expecting Trump to spend a lot of money and not be able to corral spending by the same amount. That will increase deficits and drive up inflation. It will be hard to blame this on Democrats since there has been low inflation for years now. It will be pretty obvious that GOP policies are responsible for the rate increases,” West adds.

Democrats Mobilize, Video Sends Message to Congress

As president-elect Trump’s inauguration approaches, President Obama traveled to Capitol Hill last week to urge Congressional Democrats to block the GOP president and the Republican Congressional leadership’s efforts to dismantle Obamacare, the outgoing president’s signature healthcare reform law and to fight their legislative policy initiatives. Behind closed doors Obama urged Democratic lawmakers to not “rescue” the Republicans by passing replacement measures. He suggested calling the GOP’s new plan, “Trumpcare,” to ensure that they are held responsible for any disruptions in health coverage. At press time there seems to be no GOP health care plan to consider.

After Obama’s meeting Democrats lawmakers have begun using the phrase, “Make America Sick Again, tying into Trump’s wildly recognized campaign slogan, “Make America Great Again.”

Hollywood is moving to block Trump’s policy initiatives. Almost a week ago documentarian Liz Garbus unveiled her one minute and 49 second video (#StandUpForUS), released by Humanity for Progress, to urge Congress to block any legislative initiatives pushed by Trump and his GOP allies that attack groups he marginalized during last year’s presidential campaign. Celebrities and activists lined up to participate in this video. They included Rosie Perez, Keegan-Michael Key, Tavi Gevinson, Lea Delaria, Sally Field, Steve Buscemi, Zoe Kazan, Jeffrey Wright, and Janet Mock, among others.

“The majority of Americans, regardless of who they voted for, did not vote for racism, for sexism, or for xenophobia. And yet Donald Trump won,” notes the video. At the end of the video, viewers are asked to email the video to members of Congress, as well as to sign a petition on http://www.MoveOn.org, to resist Trump and the GOP agenda,

Stay Tuned

The aftermath of the 2017 presidential election has politically split our nation. Although Trump won the Electoral College, Clinton, the former secretary of state, pulled in over 64 million votes. Even without a clear legislative mandate President-elect Trump and Republican Congressional leadership are moving at a quick pace to make major policy and systemic changes during the first 100 days of the 115th Congress. Democrats are now forced to play the loyal opposition for the next four years and fight against GOP policies rammed through the legislative process. Will GOP legislative fixes push American in the right direction? Or will the nation survive these changes? Stay tuned.

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

New Study Looks at Better Ways to Instruct Caregivers

Published in Woonsocket Call on October 2, 2016

A new report released by United Hospital Fund and AARP Public Policy Institute, using feedback directly gathered from caregivers in focus groups, provides valuable insight as to how video instruction and training materials can be improved to help caregivers provide medication and wound care management.

AARP Public Policy Institute contracted with United Hospital Fund (UHF) to organize the discussion groups, which took place in March through December of 2015 and were conducted in English, Spanish, and Chinese. A new report, , released on September 29, 2016, summarizes key themes from the discussions and suggests a list of “do’s and don’ts” for video instruction.

Gathering Advice from Caregivers

In a series of six discussion groups with diverse family caregivers — 20 women and 13 men of varying ages and cultures (Spanish and Chinese) — in New York, participants reported feeling unprepared for the complex medical and nursing tasks they were expected to perform at home for their family member. The participants reported that educational videos lack instructional information and also failed to address their emotional caregiving issues. Stories about poor care coordination came up during the discussions, too.

“These discussion groups gave family caregivers a chance to describe their frustration with the lack of preparation for tasks like wound care and administering medication through a central catheter. But participants also demonstrated how resourceful they were in finding solutions on their own,” said Carol Levine, director of UHF’s Families and Health Care Project and a co-author of the report.

According to Levine, this initiative to study caregiver perspectives on educational videos and materials is an outgrowth of a 2012 report, Home Alone: Family Caregivers Providing Complex Chronic Care, released by UHF and the AARP Public Policy Institute. The findings of this on-line national survey of a representative sample of caregivers noted that 46 percent of family caregivers across the nation were performing complicated medical and nursing tasks such as managing medications, providing wound care, and operating equipment for a family member with multiple chronic conditions. These caregivers felt they were not being adequately prepared by the health care system to perform these tasks and they told researchers that they were often stressed, depressed, and worried about making a mistake. Most of these caregivers had no help at home.

The new caregiving report is an important resource for AARP’s broader national initiative known as the Home Alone AllianceSM which seeks to bring together diverse public and private partners to make sweeping cultural changes in addressing the needs of family caregivers. “The wealth of information we learned from these discussion groups has guided the development of our first series of videos for family caregivers on medication management, and will inform future instructional videos,” said Susan C. Reinhard, RN, PhD, Senior Vice President of AARP Public Policy Institute and co-author of the report. Specific segments of the first series of videos include Guide to Giving Injections; Beyond Pills: Eye Drops, Patches, and Suppositories; and Overcoming Challenges: Medication and Dementia. The videos are on the AARP Public Policy Institute’s website and United Hospital Fund’s Next Step in Care website. Additional video series will focus on topics including wound care, preventing pressure ulcers, and mobility.

In preparation for the discussion group (lasting up to 2 hours and held on different days and locations) ), UHF staff reviewed literature on video instruction and adult learning theory for patients and caregivers and selected several currently available videos on education management and wound care to show to caregivers to stimulate discussion and cull feedback on content and presentation style. Felise Milan, MD, an adult learning theory expert at Albert Einstein College of Medicine, was a consultant to the project.

A New Way of Teaching

For UHF’s Carol Levine, one of the biggest insights of this study was the resourcefulness shown by caregivers in “finding information [about managing medication and wound care] that they had not been provided, creating their own solutions when necessary.” “These are strengths that are seldom recognized,” she says.

“We found that caregivers were eager to learn how to manage medications and do wound care more comfortably for the patient and less stressful for themselves. Providers often use the same techniques they would use to train nursing students or other trainees, and are not aware how the emotional attachment of caregiver to patient affects the tasks, and how adults need learning based on their own experiences, not textbook learning,” says Levine, stressing that providers need more time to work with caregivers to provide follow-up supervision.

Existing teaching videos used for providing information to caregivers were generally found not to incorporate adult learning theory, says Levine, noting that they were intended to teach students, not caregivers. “In watching the videos, the caregivers clearly stated that they wanted to see people like themselves learning to do the tasks, not just a provider demonstrating them. They also didn’t respond well to attempts at humor. For them, these tasks are serious business, and they want information, not entertainment,” she added.

Levine says that she believes that videos and interactive online instruction can be a powerful tool in helping caregivers learn and practice at home. “We encourage other organizations to consider developing videos in the area of their expertise, and we encourage all who communicate with caregivers to look at the list of “Dos and Don’ts” for advice about presenting information in ways that caregivers can best absorb it [detailed in her recently released report].

“However, we strongly believe that good clinical advice and supervision are essential. Videos are not “instead of” they are “along with” clinical care,” adds Levine.

CARE Act Gives More Info to Rhode Island Caregivers

“The report reflects the need to make family caregivers more confident that they have the knowledge and instructions to provide the best possible care of their loved ones,” said AARP State Director Kathleen Connell. “This is why implementation of the CARE (Caregiver Advise, Record, Enable) Act will be so important here in Rhode Island, as it addresses some of the anxiety that accompanies a patient’s hospital discharge.

“In most cases, hospitals do their best to prepare patients for discharge, but instruction has not always been focused on preparing a designated caregiver for medical tasks they may be required to perform. The CARE Act is designed to provide caregivers with the information and support they need. As the report indicates, an instructional video may not always answer all their questions. Like physicians, caregivers feel they should abide by the ‘first do no harm’ approach. And that’s hard sometimes if there is uncertainty that comes from a lack of instruction. Caregivers also are especially tentative about treating wounds and managing medications.

“This can lead to some unfortunate outcomes: Patients can suffer when mistakes are made; caregivers feel increased or debilitating stress; and hospitals readmission rates go up.
“In short, we need to listen to caregivers and all work together to support the work they do.”

For a copy of the caregiver report, go to http://www.uhfnyc.org/publications/881158.

New Approach to Support Caregivers Needed

Published in Woonsocket Call on September 18, 2016

Currently 18 million people across the nation provide assistance with activities of daily living, transportation, finances, wound care and giving injections to their aging parents, spouses, family and friends. AARP Rhode Island estimates that 148,000 Rhode Islanders are caregivers. The future is bleak for those requiring caregiving assistance in the near future. According to a recently leased report by The National Academies of Sciences, Engineering, and Medicine (NASEM), the need for family caregivers will drastically increase but demographic shifts reduce the potential pool of caregivers to tap.

Being a Caregiver in America

The 340 page NASEM report (taking 20 months to produce) calls for the retooling of the nation’s health and long-term care delivery system through team based care (using a person and family care model approach) and policy changes to better support family caregivers in the delivery of care to older Americans.

The recommendations detailed in Families Caring for an Aging America, released on September 13, 2016, challenges policy makers “to transform the health care experience for older adults and their family caregivers,” says Nancy Morrow-Howell, PhD, president of the Washington, D.C.-based The Gerontological (GSA) Society of America, the nation’s largest interdisciplinary organization devoted to the field of aging. “The approach requires a multidimensional, interdisciplinary effort that spans diverse settings of care. GSA strongly supports this effort to create a person- and family-centered model for team-based care that recognizes and rewards the role of the family caregiver,” she notes.

Adds Richard Schulz, who chaired NASEM’s Committee on Family Caregiving for Older Adults (consisting of 19 caregiving experts) that oversaw this study and who serves as Distinguished Service Professor of Psychiatry, University of Pittsburgh, “Ignoring family caregivers leaves them unprepared for the tasks they are expected to perform, carrying significant economic and personal burdens.”

Schultz adds, “Caregivers are potentially at increased risk for adverse effects in virtually every aspect of their lives – from their health and quality of life to their relationships and economic security. If the needs of the caregivers are not addressed, we as a society are compromising the well-being of elders. Supporting family caregivers should be an integral part of the nation’s collective responsibility for caring for its older adult population.”

According to a release, NASEM’s highly anticipated report noted that by 2030, 72.8 million U.S. residents – more than 1 in 5 – will age 65 or older. According to the National Survey of Caregivers, in 2011, 17.7 million people – or approximately 7.7 percent of the total U.S. population aged 20 and older – were caregivers of an older adult because of health problems or functional impairments. This estimate does not include caregivers of nursing home residents.

Furthermore, being a caregiver is not a short-term obligation, says the report, noting that the median number of years of family care for older adults with high needs is around five years. The proportion of older adults who are most likely to need intensive support from caregivers – those in their 80s and beyond – is projected to climb from 27 percent in 2012 to 37 percent by 2050.

A Shrinking Pool of Caregivers

The NASEM’s Family Caregiving Committee says that little policy action has been taken to prepare the nation’s health care and social service delivery systems for this demographic shift. While the need for caregiving is rapidly increasing, the number of the potential family caregivers is shrinking. Current demographic trends – including lower fertility, higher rates of childlessness, and increases in divorced and never-married statuses – will decrease the pool of potential caregivers in the near future. Unlike past years, aging baby boomers and seniors will have fewer family members to rely on for their care because they will more likely be unmarried or divorced and living alone, and may be even geographically separated from their children.

The in-depth report found that family caregivers typically provide health and medical care at home, navigate a very complicated and fragmented health care and long-term services and support systems, and serve as surrogate decision makers. Although these individuals play a key role caring for older adults with disabilities and complex health needs, they are oftentimes marginalized or ignored by health care providers. Caregivers may be excluded from treatment decisions and care planning by providers who assume that they will provide a wide range of tasks called for in the older adult’s care plan.

Confirming other research studies, the committee found that caregivers have higher rates of depressive symptoms, anxiety, stress, social isolation, and emotional difficulties. Evidence also suggests that they experience lower physical well-being, elevated levels of stress hormones, higher rates of chronic disease, and impaired preventive health behaviors.

Those taking care of very impaired older adults are at the greatest risk of economic harm, because of the many hours of care and supervision they provide. However, caregiving can provide valuable lessons, helping the caregiver deal with difficult problems and bringing them closer to the recipient of care.

Next Steps

NASEM’s report calls for the next presidential administration to take immediate action to confront the health, economic, and social issues facing family caregivers. Also, the committee urges the secretary of the U.S. Department of Health and Human Services, in collaboration with other federal agencies, and private-sector organizations, to develop and implement a National Family Caregiver Strategy that recognizes the essential role family caregivers play in the well-being of older adults.

The report recommends that the nation’s health and long-term care systems must support caregiver’s health, values, and social and economic well-being, as well as address the needs of the of a growing caregiver population that is both culturally and ethnically diverse.

Federal programs (such as Medicare, Medicaid and Veterans Affairs) must also develop, test and implement effective mechanisms to ensure that family caregivers are routinely identified, assessed, and supported. Payment reforms can motivate providers to engage caregivers in the delivery of health care, too.

AARP Rhode Island State Director Kathleen Connell agrees with the NASEM’s report’s assessment that the importance of a caregiver’s role in an aging society cannot be overstated. At her organization she clearly sees an increased demand for caregivers and knows all-to-well the impact of a shrinking pool of potential caregivers on those in need.

“It is essential that we take action now to do all we can to remove obstacles and additional financial strain and mitigate physical and mental stress where possible for caregivers,” says Connell. AARP has compiled a wealth of research and information on aging issues that can be accessed on http://www.AARP.org.

Final Thoughts…

On Jan. 1, 2016, a new Rhode Island law took effect that would help Rhode Islanders avoid costly and time-consuming red tape when exercising health care, financial and other legal responsibilities for their out-of-state, elderly loved ones.

Why reinvent the wheel? Rhode Island law makers, the state’s Division on Elderly Affairs and the Lt. Governor’s Long-Term Care Coordinating Council can do more to support the state’s growing caregiver population. With the next session of the Rhode Island General Assembly starting in January 2017, state officials and lawmakers can reach out to other states to learn what state-of-the art caregiver programs can be implemented here.

For a copy of the report go to: nationalacademies.org/caregiving