Looking After Those With Special Needs Exacts Toll on Caregivers — and the Pandemic Made That Worse

A large majority of caregivers looking after family members or friends with special needs say they are so focused on their duties that they put off addressing their own needs — and the COVID-19 pandemic has made things even tougher for them, according to a recent study.

No fewer than 70 percent of caregivers said they were putting their wards’ needs ahead of theirs, and 67 percent reported that the pandemic had left them feeling more isolated, according to Fidelity Investments’ 2022 American Caregivers Study: The Facts on Disability & Special Needs Planning. A third of the respondents said they lost their work income during the pandemic, or saw it reduced. Forty percent said they expect the pandemic to present “ongoing challenges” in “securing resources, getting health care for loved ones, and even working as a family to provide care.”

All caregivers are busy, but women are especially so, according to the study. While the typical caregiver works 34.4 hours each week on average caring for a person with special needs, women report working 30 percent more hours than men. Among caregivers who are employed full- or part-time, women spend an average 36.2 hours caregiving each week — 35 percent more than their employed male counterparts.

Yet for all the added burden of simultaneously holding down jobs and caregiving, only 54 percent of respondents said they had looked into the availability of workplace benefits.

Top concerns among caregivers included worries about:

• What happens when they are no longer able to provide care (32 percent)
• Personal burnout (26 percent)
• Concerns about making the best decisions for those they are caring for (26 percent)
• The toll their caregiving is exacting on their own health (22 percent)

The researchers, who surveyed 766 U.S. adults for the study, found that 40 percent of respondents identified as a close family friend, and 39 percent as parents of someone with special needs. The survey also revealed that 44 percent of those responding became caregivers by default, while 31 percent volunteered, and 29 percent took on the role through a family discussion.

The average caregiver of a loved one, Fidelity reports, has been providing care for nine years.