care | The Memories Project

The National Alliance of Caregiving released a new report, Caregiving in the US, which offers insights on the latest trends in caregiving. This comprehensive 140-page report provides data on America’s family caregivers, including insights on who is providing care and what type of care, the financial impact and the ongoing challenges caregivers encounter when trying to access support and resources. In addition, the report takes a look at how caregiving affects a person’s emotional, physical, and mental health.

Key findings:

Approximately 1 in 4 American adults is a family caregiver.
The average age of a family caregiver is 51, which happens to be my current age. My parents were older when they had me, therefore I began the family caregiver journey sooner than some of my peers.
Women make up the majority (61 percent) of family caregivers.
Twenty percent of caregivers live in rural areas, which can complicate access to care resources and support.
40 percent of caregivers live with their care recipient.
Family caregivers spend an average of 27 hours per week providing care; nearly a quarter provide 40 or more hours per week.
7 in 10 caregivers also work, which can add to a caregiver’s daily stress of trying to juggle two demanding positions. For many caregivers, not working outside of caregiving is not an option, with almost half reporting at least one negative financial impact. Finding affordable care support services has also become more expensive.
It should come as no surprise that caregivers’ own health is negatively impacted. According to the report, 1 in 5 family caregivers rate their health as fair or poor and 64 percent experienced emotional strain.
Caregivers are performing a wide range of duties: two-thirds help with at least one activity of daily living (ADL) like bathing, dressing, toileting, feeding, and mobility assistance. 8 in 10 caregivers are handling multiple instrumental activities of daily living (IADLs)—such as shopping, managing finances, preparing meals, and arranging transportation.
An alarming statistic: more caregivers are performing complex medical or nursing tasks such as managing catheters, giving injections, or monitoring vital signs. While more than half (55 percent) perform complex tasks, only 22 percent received training. Learning medical tasks on the fly is common but definitely stressful. I wrote about this aspect of caregiving in The Reluctant Caregiver.

One statistic that stuck out to me due to my advocacy work in respite care is that few caregivers (just 13 percent) are utilizing respite resources, even though nearly 40 percent recognize that respite services would be helpful. This reluctance to use respite care and the barriers that prevent caregivers from seeking respite is one of the main reasons I started Respite Care Share. As the study points out, the low usage of respite care is not just due to lack of accessibility; for some caregivers, there are cultural connotations to accepting help that must be addressed in order to reduce the risk of caregiver burnout.

How caregivers want to be supported

According to the caregivers surveyed in the report, tax credits and direct payments were nearly equally cited as preferred sources of financial support. Paid leave also received support from a majority of caregivers.

In addition to financial support, caregivers requested services like respite care, emotional support, and health care training. As pointed out above, it’s not enough to just offer these services but find ways to break down barriers to make sure the services are truly accessible and designed to meet the diverse needs of communities throughout the country.