{Caregiving Advocacy Listserve} from the National Alliance for Caregiving
U.S. News & World Report has released an article on Washington's large silence toward caregiving.
'"We have for years now evaded a real discussion about long-term care - not nursing home care, but how much people are going to need long-term care as they age, who will provide it and how we're going to pay for it,' says Gail Gibson Hunt, president and CEO of the nonprofit coalition National Alliance for Caregiving. 'That's the thing we just don't talk about.'"
Read more here.
When Michele Melendez needed help caring for her three-year-old daughter, her mother moved in and stepped up, providing child care so Melendez could work and support her little girl. But soon, the Bayonne, N.J., single mother found herself becoming the primary caregiver for both relatives, as her mother developed Alzheimer's disease and became unable to care for herself, let alone an elementary-schooler. "My mom was always super independent – she is a retired accountant and former teacher," says Melendez, 43. "Now, I'm a mom to my own mother."
The physical, emotional and financial stress Melendez began to suffer is a common experience for tens of millions of Americans providing unpaid care to loved ones. Some 43.5 million Americans have served as family caregivers during the past 12 months, according to a study earlier this year by the AARP Public Policy Institute and the National Alliance for Caregiving (though other advocates put the number as high as 65 million). That's nearly as many people who are on Medicare (49 million) and not far behind the number of Americans receiving Social Security (59 million). Yet while retirement-related programs are a staple issue in presidential and congressional campaigns, the plight of family caregivers has barely gotten a mention, much to the consternation of caregivers and their advocates.
"It's the cultural barriers that have largely played a role in blocking caregiving as a political issue," says Kevin Simowitz, political director of Caring Across Generations, a coalition of advocacy groups. While retirement security is seen as a public policy matter requiring attention from Congress and the administration, caregiving "has been viewed as a family and personal issue, one that's been handled behind closed doors," Simowitz says.
"We have for years now evaded a real discussion about long-term care – not nursing home care, but how much people are going to need long-term care as they age, who will provide it and how we're going to pay for it," says Gail Gibson Hunt, president and CEO of the nonprofit coalition National Alliance for Caregiving. "That's the thing we just don't talk about."
Most caregivers (60 percent, according to the AARP/NAC report) are female, although other studies show that among millennials, the burden is more equally shared between men and women. And just as demographic changes such as increased longevity have added to Social Security and Medicare costs, experts say, so will the burden of family caregiving increase. More women are participating in the paid workforce, meaning the old model of having a female homemaker shift her duties to care for aging parents is no longer viable. And with baby boomers aging – another boomer turns 65 every eight seconds, according to Caring Across Generations – the number of people needing assistance with day-to-day activities as well as medical tasks will only grow, according to Steven Zarit, a Penn State professor who studies the issue.
"A lot of people are touched by this," Zarit says. "The biggest driver is the aging of the population, with more people living to the late stages of the 80s and 90s," and many of those elderly people have age-related ailments, such as Alzheimer's, diabetes and mobility problems, he adds. "Families are the first line of care."
In 2010, the ratio of potential caregivers to people in the vulnerable 80-plus age group was 7:1, according to a 2013 report by AARP PPI. By 2030, that ratio is projected to narrow to 4:1, and by 2050 there will be just three potential caregivers for every person 80 and older in the U.S., according to the study.
Experts see caregiving as an emerging – and increasingly ubiquitous – national issue. Much as the advent of women into the paid workforce brought more attention to child care programs and support, the aging of the population ought to bring more focus to the question of the financial and emotional strains of caregiving. But the matter is getting barely a mention in the presidential campaign, advocates bemoan.
"I guess it's because most of them are men," and are statistically less likely to be the ones expected to attend to an ailing parent, muses Rep. Nita Lowey, a Democrat from New York and author of legislation to give some financial relief to caregivers. "It's usually the women who end up being the caregivers and give up [time at] their jobs to take care of their loved ones," she adds.
Caregiving can carry a double whammy for women, Lowey notes, since they often take time off of paid work to care for children as well. Since these women have fewer years in the paid workforce, they end up with lower Social Security benefits when they themselves retire.
Lowey has introduced legislation that would give Social Security credits to part-time and full-time caregivers, with the credits proportional to the time spent providing unpaid care. "Sacrificing a paycheck to care for a loved one shouldn't jeopardize a secure retirement," says Lowey, noting that unpaid caregivers lose an average of $324,000 in wages and retirement benefits in their lifetimes.
The tasks put an additional financial strain on those who have paid jobs, with six out of ten in the AARP/NAC study saying they have been disadvantaged at work such as by having to take a leave of absence or cut back hours, or by getting warnings about performance or attendance. And women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income, a federal program for low-income people, according to the nonprofit organization Family Caregiver Alliance.
Democratic presidential candidate Hillary Clinton has offered a plan that mirrors Lowey's on Social Security benefits. The Democratic front-runner also proposes providing a $6,000 tax credit toward costs associated with providing long-term care to aging relatives. But advocates say they hear little else from the candidates about how to relieve their burden.
"This is an exploitation issue. The family caregiver is doing this for free and is being really exploited, with more and more being expected from them" in terms of performing nursing and medical tasks such as giving injections, says Hunt. Institutional care is very expensive and AARP studies show that people overwhelmingly prefer to age at home instead of in a nursing home or other facility. "That's why Congress and [Centers for Medicare & Medicaid Services] and everybody else just keeps pushing more and more responsibility onto the family, because it's free and, well, this is what people are 'supposed' to do," says Hunt. "As long as there's that expectation there's not going to be the support."
Further, while other social or demographic groups, such as Social Security recipients, students or gun owners, fight for their concerns in an organized way, "caregivers don't self-identify," Melendez says. "They just think, 'I'm being a good daughter. I'm being a good spouse.' It's about educating people. Who is a caregiver? How can communities help, as neighbors?" she says.
Some states do offer varying tax credits and in some cases hourly wages to caregivers to ease the financial strain, but there is no uniform policy, says Josephine Kalipeni, Caring Across Generation's director of policy and partnership. Eighteen states have also passed the Caregiver Advise, Record, Enable (CARE) Act, which requires hospitals and rehabilitation facilities to record the name of a family caregiver, inform that person when the patient is released from the facility, and give the caregiver basic instructions on how to tend to the patient. The law gives no financial support to caregivers, but does help, AARP says, with easing the transition from hospital to home.
Some caregivers are able to get help from Medicaid, although the process can be complicated, since Medicaid is reserved for low-income people. Melendez was able to get Medicaid to subsidize the care for her Alzheimer's-afflicted mother through a special program that allows her mother to pay out a certain amount each month to lower her income, making her eligible for Medicaid coverage. "Otherwise, I would be a patient now," says Melendez, who has started a local caregiver support group since she took on the responsibility of her ailing parent.
Advocates are asking for tax breaks, community centers and more aid for paid home health care workers to ease the burden on family caregivers. But the cost is high, they acknowledge. AARP's Public Policy Institute estimates that family caregivers provided $470 billion in unpaid care in 2013.
For the moment, most offers of help are more rhetorical than substantive, says Kristen Strezo, a Boston-area writer who is caring for an elderly grandparent. "A lot of the resources I see for caregivers are so condescending: 'Make sure you take time for you! Make sure you have that cup of coffee!' Believe me if I could, I would," Strezo says. "As a nation we're going to be forced to confront this more and more, as baby boomers age. We need to have a much more real conversation about caregiving."
Susan Milligan is a political and foreign affairs writer and contributed to a biography of the late Sen. Edward M. Kennedy, "Last Lion: The Fall and Rise of Ted Kennedy." Follow her on Twitter: @MilliganSusan
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