73% Of Employees Have A Secret Second Job—It’s Caregiving

Estimates show that 73% of employees also devote 20 to 30 hours to family caregiving, a number that is up dramatically from 2020. Also on the rise: The cost of childcare (up 26% in the last decade and long-term care (costs rose 40% over the past decade), according to a recent release for Care Workers Recognition Month. But you won’t hear most employees with caregiving duties talking about the details of care. Keeping their responsibilities to themselves, it turns out, is a Catch 22. Their skill in juggling priorities, managing their emotions in tough times—even their ability to learn new technology, is hidden. What coworkers see, may be someone who appears tight-lipped, tired or in need of scheduling flexibility they may not get.

Instead, “admitting you have a nearly full-time caregiving responsibilities—and you don’t know when those duties will subside—is career suicide,” one woman told me. Her husband had fallen off a ladder and suffered a traumatic brain injury wo days after moving into their new home in upstate New York. She continued to commute two hours to New York City for her job even though she worried he shouldn’t be alone in the house. Ultimately, she found remote work. If you can’t imagine being in this kind of scenario, you should.

There is new public attention being paid to raising awareness of the issues, including a television series with Lisa Ling. Caregiving infrastructure is getting a much needed makeover and a 2022 national strategy to support caregivers as well as multiple pieces of legislation. But businesses seem left out of the discussion, which makes little sense. Every working person will need to take time away from a job to care for their health or a family member, but only 14 states have paid family and medical leave programs, according to the National Partnership for Women & Families.

The good news is that some forward-thinkers, many who have been caregivers themselves, are creating services that businesses can use to help their employees. And in a huge recent win, tax law was clarified to promote business involvement. Here’s a look at how ‘secret side gigs’ can become more openly discussed, respected and addressed.

Normalizing and Navigating Care

A report by the Rosalynn Carter Institute for Caregivers (RCIC) concluded that both normalizing caregiving and helping people to navigate helpful programs should be the status quo. But how do you normalize a taboo topic and create systems to navigate it without enough information? The stigma is so high that only 28% of caregivers were willing to admit that caregiving limited their increases in pay and career prospects. More than half of employers did not measure and do not know the extent of care. The problem is broad, but the opportunity for communication that feels safe and confidential are nominal. Nearly one third of caregivers who provide support for a family member voluntarily decided to leave their job due to emotional exhaustion, according to RCIC.

Unfortunately, many workers like Katherine in upstate New York, don’t trust their employers to keep their discussions confidential or worry that asking for time off to care for loved ones will limit their chances for promotion. Research from an MIT study shows that employees who trust their employers are 260% more motivated to work. Creating connection and feelings of support make navigating home and work more manageable.

Meet the Problem Solvers

The U.S. is the only industrialized nation without federal paid leave, even though the number of people needing caregiving is rising. Each of the company founders here had a first-row seat to caregiving responsibilities. Here’s what they told me they wish the workforce talked more about:

Filling A Gap in Complex Care Needs: Melissa Danielson (CEO) and her sister Melanie responsibilities. Fountaine (COO) of Joshin cared for their sibling, who had developmental disabilities and epilepsy, for much of their early adult lives. “Like the 1-in-5 families across the country with complex needs, we continuously struggled to find reliable care.” Melissa Danielson, CEO and co-founder of Joshin, a company providing ongoing, specialized support for individuals and families at every stage of life understands this complex medical care cohort. “Their needs don’t fit neatly into benefits packages designed for children under 12 and over the age of 65,” says Danielson. “Gone are the days of a one-size-fits-all solution. Employees expect tailored, personalized support to meet their dynamic needs. We felt this gap when we supported our brother, Josh.” The sisters translated their lived experience into action and built a platform that provides ongoing support for individuals and families at every state of life.

Grey Areas in the Tax Code

Lindsay Jurist-Rosner mom was diagnosed with M.S. when she was 9 years old, which meant that as she grew up, she helped with everything from making breakfast and toileting and shopping to ultimately, finding her home care that could help with her declining mobility. “I wish people knew that it can be a full-time second job,” she told me. She founded Wellthy, to help caregivers manage the logistics of caregiving—managing paperwork, talking to insurance companies, hiring and scheduling extra help and filing claims. While Wellthy is a service for caregivers, Jurist-Rosner is also deep in the weeds of helping companies sort out grey areas like tax codes for care benefits. This past week, Wellthy partnered with national trade groups and the Biden Administration and the Department of Treasury to publish guidelines that such work-life services that help an employee identify a care provider or other services…are excluded from an employee’s taxable income.”

Both Wellthy and Joshin help with this least group —caregivers helping young adults and aduls with complex needs . These are people who have multiple physical conditions, mental health needs and may also face housing, food insecurity and social isolation. Some are children or older adults, but many fall somewhere in the middle. Their unique situations defy simple solutions and require caregivers to juggle competing needs. One woman I spoke to was trying to manage her son’s post-surgical paralysis and rehabilitation as well as his cancer diagnosis. She was given little notice that her son would be leaving a rehabilitation facility and had not yet secured nursing care or a place for him to live that was accessible. Another parent was juggling a teen’s eating disorder, learning disability and depression. She questioned whether pressuring her child to go to school—so that she would not need to ask to work remotely—would exacerbate her symptoms.

Offering Families Need More Caregiving Training

“What keeps me up at night is everything getting harder for caregivers,” says Dawn Oates, founder of The Play Brigade in Brookline, Massachusetts, which educates and advocates for disability equity inclusion in healthcare, education, and recreation. “The healthcare system counts way too much on families to be the glue that keeps their families care together and navigate care decisions.”

Along with complex medical care patients of all ages, more than half of all adults over age 65 “have difficulty carrying out daily tasks…due to chronic, disabling or serious health conditions,” according to the AARP’s Public Policy Institute. Caregivers are primarily women but include a growing number of men (38%), according to EBN’s State of Caregiving 2023 Report. The care they give ranges from supporting loved ones who have trouble with fine motor skills, use medical equipment, such as breathing tubes or have a neurological or a developmental diagnosis.

At Ianacare, the founders built an I Am Not Alone Alliance to help ease the cycle of secrecy, stigma and the loneliness that it fosters. The network helps employees find community and resources and gives them a much-needed network to solve problems and find a sense of belonging.

Wellthy, Joshin and Ianacare are only a few of the companies now meeting the planning, logistics and emotional needs of the 73%. By intervening in the toughest care decision-making processes, they are building trust between managers and employees that rarely spoke openly something as simple as care.

These services are essentially offer solutions to missing local and national caregiving infrastructure. Companies including those mentioned here—Joshin, Wellthy, and Ianacare, are among the pioneers. They have created portals for both employers who want to offer their care as a benefit and for individuals who pay for their services independently. But many workers say they have either never heard of these benefits or haven’t even had the time to ask about them. It is time for businesses to help employees navigate every part of their lives and explore the options. By doing so, you will earn their trust, avoid secrecy that leads to burnout, and gain deep insights to help save costs and connect with employees.