Caregiving Under Stress
There is a group of health care workers that are not visible as the doctors, nurses, lab technicians, and other medical staff was commonly seen by patients. The vast majority of people in this unseen worker group do not have medical degrees or certificates but manage infusion pumps, operate feeding tubes, dress post-surgical wounds, and perform some of the same tasks as trained health care workers.
This group has a generalized name: Family Caregivers. And, just like professional health care workers, family caregivers are under stress, experience fatigue, and juggle work and their personal life while caring for their loved ones.
But unlike professional health care workers who care for people, they are not related to, family caregivers take care of their own family members, mainly their elderly parents, or children with disabilities, or other loved ones.
Eldercare and caregiver advocates contend that family caregivers are not recognized for their worth neither are they paid for their work. And, it’s time that caregivers get the support that they deserve. Caregiving advocacy groups are quick to point out that family caregivers save the healthcare system thousands of dollars a year. In Massachusetts, for instance, 844,000 family caregivers provide services worth over $11 billion a year, according to AARP Massachusetts.
In 2017, 41 million unpaid family caregivers provided an estimated 34 billion hours of care—worth $470 billion—to their parents, spouses, and friends 2017, according to a report by the national AARP organization.
What’s more, the total economic value of caregivers is more than all out-of-pocket spending on U.S. health care, which was worth $366 billion in 2017, the report said.
Since family caregivers are just as much a part of the healthcare industry as nurses and other trained professionals, it makes sense to think of them as a “large, diverse, and valuable industry,” Nancy LeaMond, AARP’S chief advocacy and engagement officer, wrote in an article published in the Boston Globe.
Most Caregivers Go Unpaid But Pay Caregiving Expenses
Although most family caregivers are not paid for their work, many pay for caregiving expenses out of their own pockets. David McNally, AARP’s director of Government Affairs, says 80 percent of people who care for a family member pay for out-of-pocket caregiving expenses.
A June 2021 AARP study shows caregivers spend an average of $7,242 each year for such out-of-pocket expenses as the caregiving recipient’s rent or mortgage, medical equipment, or devices.
A closer look at AARP’s “Caregiving Out-of-Pocket Costs Study” shows Hispanic/Latino and African American caregivers experience higher financial strain than White and Asian American caregivers. For instance, Hispanic/Latino caregivers spend, on average, $7,167 per year, and African American caregivers spend $6,746. Paying even higher out-of-pocket costs are those who care for someone with dementia who reported spending approximately $8,978 per year.
Eldercare and caregiver advocates have been pushing for lawmakers to create public policy that supports family caregivers. Currently, AARP is among more than 100 organizations supporting the proposed bipartisan Credit for Caring Act that is pending in Congress. The bill provides working family caregivers a tax credit of up to $5,000 to help with out-of-pocket caregiving expenses.
Also on the federal level, President Biden’s $2 trillion infrastructure proposal includes a $400 billion plan to expand access to Medicaid home and community-based services.
“They (caregivers) are breaking financially,” McNally says. “Family caregiving is a burden. It’s one that’s important to the caregiver and important to their loved one, but it takes its toll financially, physically, emotionally, and these folks need all the support they can get.”
Caregiving Contributes to Declining Health
Family caregivers are so focused on taking care of someone else that they often, unknowingly, neglect their own health. In a 2020 caregiver survey conducted by AARP and the National Alliance for Caregiving, respondents—across all ages and among all incomes, marital statuses, and those who had a choice and those who had no choice in providing care—reported having “significantly worse health due to taking care of someone else.”
The survey also found that caregivers 65 years old and older were more likely to have a chronic illness. Of those in that age group, 53.4 percent reported having two or more chronic diseases compared to 34.8 percent of caregivers who were between 45 to 84 years old.
The COVID-19 pandemic not only affected the physical health of caregivers but their emotional and mental health as well. According to a survey conducted by AARP and S&P Global, 3 out of 4 family caregivers reported rising stress in the pandemic — with more than a third citing a “strong” increase.
Among the factors contributing to the stress increase was the closing of medical offices and community support services for seniors which left caregivers and care recipients on their own. What’s more, caregivers and care recipients alike with pre-existing health conditions stayed close to home to avoid exposure to the coronavirus disease.
More Resources Proposed for Caregivers
With the number of older adults and people with disabilities living longer, the need for caregiving is growing. In an effort to help seniors, their families, and caregivers, tech firms are getting venture capital to fund new electronic and digital devices to help seniors live independently and for caregivers or family members to monitor older adults.
Caregiving technology is in its early stages, but family caregivers need more tools and resources now that are tailored to meet their specific needs, as well as solutions that are “culturally appropriate and user friendly,” AARP’s LeaMond said.
Besides tech companies, public health professionals can play a role in providing more support to caregivers and their families. For instance, the U.S. Centers for Disease Control and Prevention (CDC) recommends public health professionals develop strategies that produce needed changes in systems that improve the health of caregivers and care recipients. The CDC further suggests training healthcare providers about the importance of family caregivers, and provide caregivers with information and support to minimize the stress of caregiving.
Solutions are needed now because the issues facing caregivers will not go away any time soon.
“No one was looking as family caregiving became part of the infrastructure of America’s well-being,” LeaMond wrote. “Its role is now far too big to ignore. Keeping it strong should be a national priority.”