Tag Archives for caregiving

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

Winning the Votes of Older Women

Published in Pawtucket Times on October 10, 2016

On Oct. 7, Washington Post reporter David Fahrenthol’s story broke detailing a three minute video of GOP Presidential candidate Donald Trump wearing a hot microphone during a 2005 bus ride with former-host Bill Bush, of “Access Hollywood” to the set of “Days of Our Lives” where the real estate mogul had a walk on cameo on the soap opera. The video captured Trump saying “And when you’re a star they let you do it. You can do anything …Grab them by the p—y. You can do anything” and crudely describing his failed attempts to seduce a woman while being recently married.

Reaction came swiftly to Trump’s locker room banter with Bush. “No woman should never be described in these terms or talked about in this manner. Ever,” said Reince Priebus, the chairman of the Republican National Committee, who was doing damage control to keep woman voters from voting Democrat. The leaked video has also resulted in a number of Republican Senate and House candidates running in November to withdrawal their endorsements of Trump.

This is horrific,” Democratic Presidential Candidate Hillary Clinton said on Twitter, noting a link to the Washington Post article. “We cannot allow this man to become president.”

The embattled Trump initially issued a statement and later a video to try to defuse the controversy and get his flailing campaign back on track 30 days before the November presidential election.

Many political pundits believe that Trump’s off-the-cuff comments that are derogatory to woman, a powerful voting block who decide elections, might just block his chances of becoming the next occupant of the White House.

Women’s Campaign Issues

One day before the politically damaging Washington Post article appeared detailing Trump’s lewd comments in a leaked video, AARP, the nation’s largest aging advocacy group, released survey findings highlighting issues of importance to women voters ages 50 to 69 in key battleground states.

“Older women voters – particularly women of the Boomer generation — could help decide the 2016 presidential election,” said AARP Executive Vice President Nancy LeaMond. “Yet many of their real concerns are being ignored and their questions overlooked in a largely issueless campaign. The candidates still have an opportunity to talk to these women about the issues that matter to them.”

The 27 page report, Women Voters Ages 50 +: Economic Anxieties, Social Security, and the 2016 Election, says that heading into this year’s presidential election, Democratic candidate Hillary Clinton has a whopping 15 point lead (48 percent) over the GOP’s standard bearer Donald Trump (33 percent) among woman over age 50. The findings also indicate that older woman favor Democrats running for Congress by a narrower margin (47 percent are inclined to vote for a Democrat while 36 percent inclined to vote for a Republican).

AARP’s survey results noted that majority of woman age 50 and over believe that Clinton will do a better job than Trump in addressing family caregiving (Clinton, 57 percent; Trump, 27 percent), education (56 percent; 31 percent), environment (55 percent; 29 percent) and health (53 percent; 35 percent). The Democratic presidential candidate is also perceived by older woman as having a slight advantage over Trump in controlling government spending and controlling the budget deficit (44 percent; 43 percent).

“It’s the Economy Stupid”
Plus Retirement Issues

As to the economy, the majority of the older woman respondents across these 15 battle ground states worry about pocketbook issues such as prices rising faster than their income (61 percent) and having to pay too much in taxes (54 percent. Four in ten (41%) worry about having prescription drug expenses they cannot afford. Women with lower household incomes are especially likely to worry about these pocketbook issues.

Also, the AARP survey found that many women also worry about retirement security, including their ability to care for themselves as they age (45 percent), not having financial security in retirement (41 percent), and whether Social Security will be there when they retire (38 percent). These retirement-related issues are of particular concern to women with lower household incomes.

Additionally, most women (53 percent) say that the nearly 25 percent cut in Social Security benefits that would result from not addressing the solvency of Social Security would impact them, including 32 percent who say it would impact them “a lot.”

Fixing Social Security is a key issue to older woman voters. The AARP survey noted that the vast majority of women voters ages 50+ (72 percent) say that the next president and Congress should address Social Security immediately.

Most women (67 percent) also favor giving a caregiver credit in calculating Social Security benefits to people who take time off from work to care for loved ones, says the report.

Social Security is flying under the radar screen of the voter. The survey findings noted that few women say that they have heard about the candidates’ plans for Social Security. About one in three (34 percent) say they have seen or heard anything from Clinton, and even fewer (20 percent) say that they have seen or heard anything from Trump.

The AARP survey found that over 54 percent of the respondents are currently, or have been, a family caregiver providing unpaid care to an adult loved one. More than eight in ten (85 percent) women voter’s ages 50+ think it is important for the presidential candidates to talk about how they would support family caregivers who provide unpaid care to aging parents or spouses or other adult family members.

Finally, four in ten (41 percent) women are not confident that they will be able to cover the cost of care for an aging or elderly parent, spouse, or other family member.

Women: A Powerful Voting Block

According to the Center for American Women in Politics, “In recent elections voter turnout rates for women have equaled or exceeded voter turnout rates for men. Women, who constitute more than half of the population, have cast between four to seven million more votes than men in recent elections.“

Only weeks will tell if embattled Trump can overcome the political backlash generated from his locker room banter degrading woman, political insiders predicting that the gender vote gap might just historically widen.

AARP’s survey findings provide sound advice to Clinton and Trump and congressional candidates who are scrambling for last minute votes, especially from married women, younger millennials and women living in the nation’s suburbs. The women’s voting block might just surely tilt the election to a candidate in many legislative districts.

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