There are more of them. They are in poorer health. They are providing more intense care for longer periods of time in close quarters. These are the 53 million family caregivers, 21.3 percent of the population, who are providing unpaid care for loved ones.

This according to the latest AARP/NAC Caregiving in the US 2020 report, which was published on May 14. The data is based on quantitative surveys of nearly 1,400 people taken BEFORE the novel coronavirus hit.

You can read the executive summary, but here are some highlights:

One in five Americans (21.3 percent) are caregivers.
They spend nearly 24 hours a week providing help through activities of daily living (dressing, toileting, etc.) and instrumental activities of daily living (driving, shopping, cooking, etc.)
They are increasingly being called on to be health care advocates, interfacing with providers and agencies in an environment where it is harder to coordinate care.
Female boomers still comprise the majority of caregivers and care recipients still skew older. That said, the percentage of GenX and millennial caregivers is increasing and care for those 18-34 rose from five percent to eight percent of caregivers.
There is growth in the number of African American caregivers (88 percent compared to 77 percent in 2015) and Hispanic caregivers (92 percent vs. 85 percent in 2015). The youngest caregivers are also more often caring for an adult relative (91 percent) than in 2015 (85 percent).
Care recipients have increasingly complex medical and support needs.
A greater proportion of caregivers report being in fair or poor health (21 percent, up from 17 percent in 2015), particularly acute among Millennials.
Many caregivers live together with their recipient (40 percent), a proportion that has grown since 2015 (34 percent).

A health care issue, not a benefits program

In my last BenefitsPRO article, I suggested that caregiving be considered a social determinant of health. That is a lofty idea that will not necessarily penetrate with pragmatic leaders and human resources professionals. So, let me appeal to that side of you.

Consider this. I interviewed Logistics Health CEO Don Weber a couple of years ago for a Caregiver Summit I produce. In addition to having a fantastic culture toward caregivers and providing great benefits, they provide employees three hours of paid wellness time per week. At the time I spoke with him, Logistics had no premium increase in their health insurance plans since 2011. In fact, premiums were down 26% because of their investment in the overall wellness of employees. Their health care costs have decreased by $1.8 million as a result.

Consistent with a recent CDC report, fewer caregivers report their health status as excellent or very good and a greater proportion report being in fair or poor health. And according to a recent report from the Northeast Business Group on Health, employers report caregivers abandoning self-care.

Leaders cannot think of caregiver benefits as a cost center with no measurable ROI. Look at the big picture. Providing meaningful benefits impacts the health of your employees and the health care costs of the organization.

Health care as a potential partner

Most commonly, caregivers rely on health care professionals (55 percent) followed by family and friends (43 percent) for information about care for themselves and their loved ones. Yet, support from those same health professionals has decreased. Consistent with a recent JAMA report, very few caregivers report having conversations with their health professionals about what they need to care for their recipient (29 percent) or to support their own well-being (13 percent), the latter down from 16 percent in 2015.

Our company is piloting a prescriptive caregiver solution that is actually administered through an office encounter by the physician, PA, or office administrator. It helps initiate these important conversations but more importantly, provides a tangible solution for the caregiver while enhancing patient experience and promoting better health.

Advocacy and coordination assistance

Exacerbated by the coronavirus pandemic, there are fewer interactions with health care providers and that trend will continue for the foreseeable future as people are hesitant to go to an office for care. That puts more of a burden on caregivers. They increasingly need help navigating forms, paperwork, and eligibility for services. More importantly, they need help as advocates when dueling with insurers and providers. While disease-specific associations offer advocacy (think American Cancer Society, American Heart Association, etc.), there is a growing profession of patient advocates who can help and companies would be wise to utilize their services for the benefit of employee caregivers.

These continuous battles are a big source of stress for caregivers so providing that assistance would help alleviate stress and in turn (sense a theme?) reduce health care costs in the long term. Coordination tools could be a huge help too. I utilized Lotsa Helping Hands when I had to provide long-distance caregiving for my mom when my sister was diagnosed with cancer. There are app-based technologies as well.

Home as the hub

Most care recipients live in their home and as this report noted, 40 percent of caregivers and recipients live together. While the need for respite programs immediately surfaces, it is important to note that the most common information and support needs caregivers noted were related to keeping their care recipient safe at home (26 percent).

Technology adoption among caregivers to assist with care is low even as all the bells and whistles technologies get the most press (think robots!). Half of caregivers have used at least one technology or software to help with caregiving (53 percent). Most commonly, one in three track their recipient's finances. Three in ten have tracked their recipient's personal health records. Fewer have used assistive devices for their recipient (17 percent) or have used apps, video, wearables, or other remote monitoring to check up on their recipient (13 percent).

Whole-house monitoring solutions and smart-speaker technologies are emerging and companies would be wise to partner with reputable organizations to help offset costs for employee caregivers who could benefit from these services. Companies also need to help employees understand how technology can be their friend.

It all starts with culture

No amount of benefits can overcome a bad culture. In this latest report, half of working caregivers report that their supervisor is aware of their caregiving responsibility. Part of that is because caregivers are still afraid to self-identify. And one way of identifying is to utilize offered benefits programs. That is a big Catch-22.

We need to move the needle here and it will take employers working in tandem with the health care industry to effectively address the growing number of caregivers needs in this country.

Anthony Cirillo, FACHE, is a health and aging expert; global practice partner at Global Institutional Solutions 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.

Read more:

Instant Insights /

Caregiving: The health care crisis few are addressing

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