It’s a classic scene from any vintage romance movie: the rush to the airport, past the gate, to declare undying love. Then 9/11 happened, and national security regulations changed overnight. Off with the shoes, the belt. No more water bottles or bulky jackets. Definitely no running to the gate to meet friends or family members or to profess undying love.
Movies struggled to reflect this change in our day-to-day lives—even as late as 2003, the now Christmas classic Love Actually featured the airport as a major plot device (albeit with jolly TSA agents participating in the drama). Collectively we were asking ourselves in the wake of 9/11: Will we ever go “back to normal”?
Whereas a terrorist attack was a lightning bolt, the COVID-19 novel coronavirus pandemic is a slow-moving tsunami. The first wave crested in the United States in March. Since then, Johns Hopkins has reported that more than 7,800,000 million Americans have been infected and more than 215,000 people have died.
After decades of advocacy and incremental approaches to support family caregivers, the pandemic instantaneously put front and center the family responsibilities of so many Americans. Caregiving started to seem as “normal” as getting up to answer the door for groceries. We’re asking: “Will things ever go ‘back to normal’?” But for caregivers, the juggling of family life and other responsibilities is normal. It’s just that people are finally starting to pay attention.
Coordinating Care Is Getting Harder for Caregivers
In April, New Mexico Gov. Michelle Lujan Grisham—a former co-Chair of the U.S. Congressional Assisting Caregivers Today Caucus—pled with her constituents to stay home. Holding up a picture of her older mother, Gov. Lujan Grisham said she hadn’t visited her in more than six weeks, and urged other caregivers to keep their distance for the good of the public health.
The Governor’s story illustrated one of the emerging divides in caregiving during COVID-19. Restrictions on visitation in healthcare settings created two distinct classes: caregivers who live with the person who needs care and caregivers who are physically distant from the person who needs care. National research, conducted before the pandemic and released in May 2020 by the National Alliance for Caregiving and AARP, uncovered ongoing care coordination issues for the more than 53 million people in the United States who are caregivers. Thirty-one percent of all caregivers of adults reported it was “very difficult” or “somewhat difficult” to coordinate care, compared to 23 percent in 2015, when last studied. Difficulty in coordinating was universal, across all age groups younger than age 75, all genders and all income groups. Those caring for adults older than age 65 professed greater difficulty in 2020 than they had five years ago, as did all primary caregivers and long-term caregivers (caring for a year or longer). Perhaps most surprising, caregivers with at least some college education show a marked increase in difficulty of care coordination (34 percent compared to 23 percent in 2015).
COVID-19 also amplified care coordination challenges for physically distanced caregivers who may support someone in an assisted living or skilled nursing facility. Their challenges include:
- Gatekeeping and exclusion from bedside decision-making, including changing rules and policies in acute- and post-acute care settings about the caregiver’s role and access to the care plan.
- Complications in the grieving process, as families were not able to engage in traditional bereavement rituals such as gathering for wakes and funerals, and many grappled with sudden or “bad deaths” of the people in their care.
- An expanding digital divide that creates gaps in access for people who lack Internet access for work, school or telehealth. Americans report that Internet access during the pandemic is at least important (87 percent) or even essential (53 percent).
For caregivers living in the same household, care coordination challenges exist in tandem with home-based care stressors. Pre-pandemic findings in the NAC–AARP report noted that these family caregivers more often report feeling lonely (29 percent). Those caring for their spouse are also more likely than other types of caregivers to report feelings of loneliness (29 percent). The pandemic has magnified the impact of existing stressors:
- Lack of available respite, lack of structure or routines and risk of exposure requiring additional time cleaning and sanitizing the home, particularly with those caring for someone with dementia.
- Ongoing exposure risk to family members who may be older or immunosuppressed, such as immigrants who are more likely to live in intergenerational households, work essential jobs that cannot be done remotely and use public transit.
- Increasing financial pressures such as rising unemployment compared to pre-pandemic levels. More than 2.5 million individuals report permanent job loss, in addition to furloughs, market uncertainty and ongoing shutdowns/reopening heading into the fall and flu season.
Ongoing Momentum for Caregiving Support
As many families look ahead toward major holidays, policymakers have started to think through what caregiving support might look like. Bipartisan COVID-19 legislation passed earlier in the year provided new workplace protections for some caregivers and new funding for Older Americans Act programs including the National Family Caregiver Support Program, through mechanisms such as the Families First Coronavirus Response Act and the CARES Act. These laws illustrate an increased focus and attention on the needs of caregivers, and potentially, a shift to recognize the collective impact caregiving has on individuals and communities.
‘The issue of caregiving is nearly as bipartisan and is as noncontroversial as apple pie.’
Even the Presidential race has identified caregiving as a key issue. Former Vice President Joe Biden has proposed a comprehensive family caregiving and workforce plan. The plan includes provisions to expand employment to direct-care workers, expansion of the Medicaid home- and community-based services program, a $5,000 tax credit for family caregivers, Social Security credits for unpaid care work and additional support for military and Veteran caregivers. The Biden plan creates a number of new infrastructure investments aimed at supporting families, including targeted approaches to tackle the opioid epidemic, strengthen the nursing workforce and provide new grant funding to communities for innovative approaches to community health issues.
However, any comprehensive plan must move through a sharply divided Congress. Given the ongoing challenges to the Affordable Care Act (including the upcoming Texas v. California case at the U.S. Supreme Court), it’s unclear whether a President Biden would use his political capital on healthcare initiatives as did his former boss, President Barack Obama.
Luckily, the issue of caregiving is nearly as bipartisan and is as noncontroversial as apple pie.
Congress, in a unified, bipartisan approach since the 2016 election, has helmed two of the most expansive caregiving bills in recent years. The RAISE Family Caregivers Act will create a national strategy for caregivers at the U.S. Department of Health and Human Services akin to the National Plan to Address Alzheimer’s Disease. Likewise, the VA MISSION Act of 2018, pushed forward by advocate and former Sen. Elizabeth Dole, greatly expanded the family caregiver program at the Department of Veterans Affairs. The act expanded eligibility for caregivers of wounded warriors beyond survivors of the conflicts in Iraq and Afghanistan, representing one of the largest federal investments to date in a comprehensive program to support caregivers.
What remains to be seen is whether the COVID-19 pandemic will shift the national conversation on the other pain points of family caregiving: expanded protections for workers with family responsibilities, expanded infrastructure for respite care and better inclusion in models of health and long-term care delivery. As they say, necessity is the mother of invention.
C. Grace Whiting, JD, is the President and CEO of the National Alliance for Caregiving, a 501(c)(3) charitable organization whose mission is to build partnerships in research, advocacy and innovation to make life better for family caregivers. Learn more at www.caregiving.org.