The need for family caregiver support: Now more than ever

Employee caregivers need more than access to paid leave. They need emotional support and access to resources.

A February 21 report from the CDC shows that nearly 1 in 5 family caregivers may be in fair or poor health–and it’s likely gotten worse. (Photo: Shutterstock)

The issue of paid family leave has certainly garnered the attention of organizations and the government during COVID-19. But to quote from a recent article: “ending the conversation about caregiver support on paid leave would fall short of effectively supporting employee caregivers. From a caregiver’s perspective, paid leave should be the tip of the iceberg when offering support to caregivers.”

Health providers have had a bad track record when it comes to caring for the family caregiver. A recent national study in JAMA found that while most caregivers reported that older adults’ health care workers always or usually listened to them and always or usually asked about their understanding of the older adult’s treatments; fewer caregivers reported being always (21.3 percent) or usually (6.9 percent) asked whether they needed help managing older adults’ care. Nearly one-half (45.0 percent) were never asked.

Related: Addressing the caregiver crisis in the workforce

Things are getting worse, and as we emerge from this pandemic, the likelihood of caregivers at risk will increase even more. As my friend and colleague Alexandra Drane remarked on her Facebook page recently: “Almost overnight, the number of unpaid #caregivers has gone from 1 in 5 Americans, to anyone who cares for someone at risk for #COVID19. That’s an incredibly large number of people. As in, maybe everyone.”

Understaffed nursing homes and assisted living facilities, hospitals at their breaking points, physicians turning to telemedicine – all this points to the need for family caregivers to step up even more than before to be advocates. While giving them paid leave helps, they need more. They need emotional support and access to information.

It is estimated that six out of ten employees across industries are family caregivers. Think about how acute that is in the health care setting now. As you look around the hallways of hospitals or senior living communities, can you pick the employees who are professional caregivers during their shift and then go home to be family caregivers?

I would venture not for several reasons. Caregivers often don’t self-identify in the workplace. For one reason they fear losing their job. The other reason is that they do not consider themselves a quote caregiver. Yet there they are hiding in plain sight, in an industry starving for talent. According to an article in McKnight’s, nursing homes alone have nearly 50,000 caregiver vacancies, and half of the workforce turns over every year.

You would also be surprised at who is leaving. A landmark report from Harvard called The Caring Company reports that up to 39 percent of all employees had voluntarily left a job due to caregiving responsibilities with lost wages estimated at $3 trillion. Most of the talent lost came from senior management.

Companies are not necessarily doing the greatest job in caring for the employee caregiver. Even as you scour a report listing the 18 top companies in workplace eldercare policies, you will find most lead with some type of paid leave policy.

FMLA does not require paid leave. It does entitle eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage.

More alarming is a February 21 report from the U.S. Centers for Disease Control and Prevention (pre-pandemic in the US) that shows that nearly 1 in 5 family caregivers may be in fair or poor health, going on to describe caregiving as “a public health issue of increasing importance.” Katherine Ornstein, an associate professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City reviewed the findings and said the health care system needs to start thinking about how to support these caregivers. Dr. Steven Radwany, a professor in the Division of Palliative Medicine at Ohio State University Wexner Medical Center in Columbus, also reviewed the report and noted “we have to have the political will to step up and address this.” The authors concluded that “the potential for losing informal caregivers because of poor health exists and needs to be addressed to support caregivers and expanded offerings that allow caregivers to address their own health concerns.”

My guess is that if the health care industry cannot support the family caregivers of residents and patients, it is even less likely to be able to support employees who are also family caregivers.

That is why we need to change the conversation and raise the importance of family caregiving. This is not just an HR issue. Sure, it impacts turnover, absenteeism, presenteeism. But ultimately it impacts health. This is a health care crisis we are facing.

Of course, it starts with a company culture that supports family caregivers and does not discriminate when they self-identify. Corporate cultures are just now granting pregnant women the benefits they should have had for years and yet major media are still reporting on the discrimination pregnant women face and the wink and nod corporate cultures that can end careers once someone becomes pregnant. If we have not made progress on this front, think of how far behind we are with family caregivers.

There is a lot of jargon in health care. One of the buzzwords today is social determinants of health. This refers to the 80 percent of care that does not happen in a doctor’s office or hospital. This includes things like transportation, food insecurity, housing.

Caregiving IS a social determinant of health and we must recognize it as such.

Employees will start demanding a new culture. After all, more than 25 percent of family caregivers are Millennials. A new survey shows the changing face of caregiving and the impact on work. Cambia Health Solutions surveyed 1,506 caregivers and found the average age of the caregiver was 42 and family caregivers in the workforce were caring for loved ones of all ages: 51 percent of care recipients were younger than 18; just 16 percent older than 65.

The faces of the 44 million family caregivers in the United States is changing. Let’s remember that caregivers face two dilemmas – care of a loved one and care for themselves. An unusually high number of family caregivers predecease the one for whom they are caring.

Companies need to create a culture where employees can self-identify and caregivers need to reach out for the help they need and acknowledge that they truly are doing heroic work. And health providers need to treat caregiving as a social determinant.

As the Harvard report concluded, “in a “caring company,” management will have to demonstrate commitment both by acknowledging its employees’ care concerns and by investing in innovative solutions. The era of employers’ indifference as to how their employees strike a balance between their personal and professional lives is ending.”

Anthony Cirillo, FACHE, is a health and aging expert; global practice partner at GIS Healthcare and a participant in both the Nationwide Financial / National Council on Aging Health and Wellness Roundtable and the Bank of America Elder Care Policy Roundtable. He is on the national board of Senior Net and a former executive board member of the Dementia Action Alliance.

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