Family caregivers – the vast but underappreciated workforce that provides care for older parents and grandparents, family members suffering from debilitating disease and conditions, and children with often rare and degenerative disease – need our support.
Caregiving in the United States is largely performed by unpaid, family caregivers. According to a May 2020 report from AARP and the National Alliance for Caregiving, about 53 million caregivers provide care to sick and/or aging mothers, fathers and, increasingly, grandparents and other relatives. Almost all of them are uncompensated, except, perhaps, for the thanks they get from those for whom they are caring.
Who are these caregivers? In December 2020 and February 2021, in the midst of the pandemic, Embracing Carers® released the Caregiver Well-Being Index, a global survey of over 9,000 unpaid family caregivers. Much of what we learned reinforced what we already knew: that family caregivers are stressed financially, physically, and emotionally; and that caregivers’ careers – especially among women – suffer as a result of their substantial added responsibilities. But the pandemic made a everything exponentially harder and caregivers know things won’t be getting back to “normal” anytime soon.
Demands on caregivers’ time during the pandemic increased nearly 40% over the already long hours they were putting in before COVID. They were increasingly focused on managing new technologies and 53% of caregivers surveyed said they needed additional training on how to use/access telehealth and other online tools.
Time spent providing emotional support to frightened older and chronically ill family increased and 91% of caregivers said they put the needs of the person(s) they care for ahead of their own during the pandemic. And they were doing all of that without access to respite care, which was unavailable during the pandemic, giving carers no time to take a break themselves.
But we also saw something else. As access to critical community services essentially vanished overnight, a new generation of family caregivers was needed to fill the void. Our survey found that, during the pandemic, 13% of carers became caregivers for the first time. Grandchildren, some with small children of their own, stepped in to care for grandparents. And many felt unprepared and overwhelmed.
In the U.S., governments provide some – but not nearly enough – support for family caregivers. Medicaid’s requirements for self-directed services are inconsistent from state-to-state, confusing and available only to a narrow subset of the population. Many states offer counseling and/or support for unpaid carers, but it is spotty and incomplete. Family caregivers are largely on their own.
So how can we help unpaid family caregivers? According to the U.S. Department of Labor, only 20% of private sector workers had access to paid family/medical leave in 2020. And only 8 percent of workers in the bottom wage quartile had access to paid family/medical leave in 2020.
President Biden and a large, bipartisan coalition in Congress support requiring employers to provide 12 weeks of universal paid family and medical leave. Enacting paid family/medical leave and ensuring unpaid, family caregiving is specifically included in any federal or state paid leave legislation is essential.
How much of a difference would paid leave make for caregivers? A survey commissioned by the American Cancer Society Cancer Action Network (ACS CAN) showed that access to paid medical/family leave makes an important difference for cancer caregivers. Seventy percent of those who had access to leave said it had a positive impact on their lives and the lives of those for whom they care.
But it is worth noting that family caregiving does not end after 12 weeks. We need to continue to explore how society – the public and private sector – can support unpaid family caregivers for the remaining 40 weeks of the year and for the years that follow.
The truth is that all of us rely on family caregivers – our unpaid sons, daughters, and grandchildren – to take care of our aging, people with disabilities and struggling. This informal but essential workforce is vital. Imagine the cost to society – in dollars and otherwise – if family caregivers could not be relied upon to do this work.
We all have a responsibility to take care of our aging parents, grandparents, and relatives. But society has a responsibility to take better care of unpaid, family caregivers.
C. Grace Whiting, J.D.
President and CEO
National Alliance for Caregiving
Lisa Winstel
COO
Caregiver Action Network
Jasmine Greenamyer
Lead for Embracing Carers® & Healthy Women Healthy Economies
VP, Global Strategic Partnerships