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Who America’s Caregivers Are and Why It Matters

A new report finds most are working women putting in a lot of time


Do you fit this portrait?

You are a 49-year-old woman caring for a 69-year-old female relative, most likely your mother. If you have an outside job, you do that work nearly 35 hours a week. You’ve been caring for mom for four years, about 24 hours each week. You are more likely than not to be helping her with medical or nursing-type tasks, including complex things like shots, tube feedings, catheters and colostomy needs.

Sound familiar? If so, you are a typical family caregiver in the United States.

That’s according to Caregiving in the U.S. 2015, a new report released jointly by the National Alliance for Caregiving and AARP. The groups surveyed 1,248 adults providing care for a person of any age; the research was done online in late 2014.

Though the report described a “typical” caregiver, it stressed that “caregivers as a whole are becoming as diverse as the American population.”

And there will be a greater need for them than ever in coming years.

A Silver Tsunami

As previous research has shown, “we’re facing a caregiving cliff,” because of the aging of the population, said Susan Reinhard, senior vice president and director of the AARP Public Policy Institute, in a written statement.

“By mid-century, there will be only three family caregivers available for each person requiring care,” she said. (That’s compared with more than seven now, according to a separate report by AARP.)

That means three who might be able to provide care, not necessarily three who will. Only 53 percent of caregivers in the survey said another unpaid person helps out. One in three caregivers said they get no help — paid or unpaid.

Who Are the Caregivers?

Other key findings from the report:

  • Nearly 40 million Americans provided unpaid care to an adult in the last year
  • 40 percent of caregivers are male
  • Nearly 1 in 10 caregivers is 75 or older
  • Total caregiving hours are particularly high for those caring for a spouse or partner (an average of 44.6 hours a week)
  • 40 percent of caregivers report wielding a high burden of care; 18 percent report a moderate burden of care
  • When asked if they had a choice in taking on their caregiving role, half of respondents said no

The survey results highlight the vital role of caregivers and the lack of societal support for them, said Gail Gibson Hunt, president and CEO of the National Alliance on Caregiving, in a statement.

“We’re especially concerned that not enough is being done to support family caregivers in the public or private sector as they age,” she said. “There’s a double-edged sword when we fail to support caregivers, because we put both the caregiver and the care recipient at risk.”

In the area of financial support, caregivers were asked what would be most helpful among three potential national policies or programs. Three in 10 said that being paid for some of their caregiving and an income tax credit would be the most helpful.

Feeling the Most Pressure

The report gives special attention to some of the most vulnerable groups of caregivers. Those include caregivers who feel greater stress because they face complex, high-burden roles. They also include older caregivers, those who were forced to care for another and “higher-hour” caregivers (those providing 21 or more hours of care weekly).

When we fail to support caregivers, we put both the caregiver and the care recipient at risk.

— Gail Gibson Hunt, AARP

It is the first time the groups have focused more deeply on those making the greatest time commitment, and no other group has, either, Reinhard said. One thing that surprised her in the research: Of the 32 percent who reported spending 21 or more hours per week, the average number of hours was 62.

They have the high burden of care, high emotional stress,” Reinhard said. “And they’ve been doing this work for almost six years, and they expect to do it for at least another five…. To me, this look at the higher-hour caregiver was a real eye-opener, and we really need to be looking at them.”

Most of the higher-hour caregivers (63 percent) performed medical/nursing tasks with no preparation, they reported. They were more likely to say that they were in fair or poor health and that caregiving made their health worse.

“The takeaway from that is we need to focus on who’s at risk of being burned out, providing more and more hours of personal care… and maybe quitting their jobs because it’s just too much to handle,” Hunt said. “We are going to have to find ways of supporting them. After all, they’re the backbone of the longterm care system.”

Two Other Caregiving Reports

Two additional reports issued recently also explored caregiving in the United States.

The State of Caregiving: 2015 Report” by AgingCare.com examined the demographics, finances and living situations of caregivers.

The online survey of 3,300 family caregivers conducted in January and February found that mothers are most likely to need care; Alzheimer’s/dementia was cited by more than half of respondents as the reason the care was needed and an astounding half of family caregivers either had to use personal savings or go into significant debt to care for their loved one. Talking about finances, however, “appears to reduce the amount of cash a caregiver has to contribute to their loved one’s care,” the report said.

In addition, the AgingCare.com survey found that caregivers and their aging relatives do discuss things like power-of-attorney and health care choices. But one subject seems taboo: hospice. Sixty percent of families avoid it.

The “2014 Older Adult Caregiver Study” by the Families and Work Institute focused on caregivers and employment.

In a random online sample of 1,050 adults, conducted in June 2014, 66 percent of caregivers reported being employed in the previous five years. Half changed their work schedules to provide the care while working the same number of hours. Forty-one percent worked fewer hours than they would have ordinarily wanted to. Nearly 30 percent took a leave to care for an elder. And 11 percent quit their jobs. Of those, about half said they quit because their employers were not flexible enough to allow them to work and provide care.

Asked what employers could do to better support them and make them more comfortable, respondents said things like:

  • Don’t imply that child care is more important than caring for an older adult
  • Share corporate policies on elder care and be more accepting of requests for time off on short notice
  • Design policies that accommodate caregiving responsibilities without penalizing the employee, such as not requiring the use of vacation time to provide care.

 

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