Caregiving Burdens, Policy to be Highlighted at Institute’s March Symposium

Personal caregiving, which covers a broad spectrum from childcare to providing for the health care needs of a parent, spouse, sibling or other loved one, can have huge implications and huge consequences for the caregiver.

Caregiving affects all of us, directly or indirectly, says Jason Resendez, President and CEO of the National Alliance for Caregiving (NAC), a Washington, D.C.-based advocacy group representing the needs of caregivers in national policy debates on healthcare and the economy. Resendez will highlight some of those consequences for 53 million active family caregivers in America today during his plenary address at the Shiley Haynes Institute’s 2023 National Symposium for Academic Palliative Care Education and Research, March 2-3 at the Long Beach, Calif., Hilton Hotel.

“I will talk about the current state of caregiving in the United States, the realities family caregivers face, and the economic impact—especially for those with lower incomes and for women of color,” he says. Resendez, a nationally recognized expert on family care, aging and the science of inclusion in research, will also highlight NAC’s policy agenda in support of better infrastructure to support caregivers. That includes enhancing family medical leave policies, legislation to offer tax credits for caregivers, respite for caregivers and advancing consumer-directed care—where consumers choose their own care provider and, in some cases, a family caregiver can be paid for providing the care.

Other core advocacy principles espoused by NAC include investing more in caregiver research and protecting caregivers’ financial security. Another target is to incentivize the health care system to better integrate caregiving and caregivers into care delivery, Resendez says. “Caregivers are essential to navigating the health care system—often becoming experts in their loved one’s medical condition,” he explains. They should be considered integral members of the health care team.

“We need to see caregivers as a key extension of the health care system, not just helping with daily tasks of care but also providing increasingly complex medical and nursing care, such as changing catheters or administering complex medications—often without sufficient training,” he explains. “The importance of integration is about recognizing what they’re already doing and providing them with better training and support to be able to do it.”

Fulfillment and Financial Demands

Family caregiving can offer a lot of personal fulfillment to the person providing care to a loved one. “That doesn’t mean it’s easy, and it certainly could be easier with more supportive policies,” Resendez explains. “My talk will lay out the kinds of person-centered supportive policies that need to be put in place.”

Caregivers may take on debt or be unable to save for their own retirement because of the financial demands of their loved one’s health care. They may have reduced hours at work or even have to give up their job—which has implications for continued insurance coverage for their family. Research shows that family caregiving responsibilities can even have consequences for the health of caregivers themselves, who may face their own health concerns such as diabetes along with emotional stresses and mental health concerns.

Health professionals, even if they understand the importance of personal caregivers in general, may not fully appreciate the challenges caregivers face today, and how those challenges affect the care their patients get. “We know that in better supporting caregivers, we’re also supporting better patient care.”

What steps can health professionals in our audience take to address these concerns? “For starters, they should do what they can to appreciate and listen to the caregivers of their patients,” Resendez says. “Palliative and hospice professionals already probably do this better than other health professionals, but continuing that kind of engagement and recognition is the minimum.”

Becoming active in health care policy is also critical, he says. “Policymakers don’t hear often enough from professionals about caregiving concerns. Palliative and hospice professionals can help elevate and bring visibility to the many challenges caregivers face.” See NAC’s website for more on its policy agenda.

There is also work to be done in the culture’s gradual shift toward broader public appreciation for these issues. “We see it more in the media—normalizing caregiving. And now for the first time we have a national strategy to support caregivers.” Under the terms of the 2018 RAISE Family Caregivers Act, an integrated National Strategy to Support Family Caregivers report was delivered to Congress in 2022.

“But more needs to be done,” Resendez says. Get more information on the Institute’s upcoming Annual Symposium and its scheduled presenters.

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