Today, in the United States, more than 50 million people are caregivers for aging parents, ill spouses, or other loved ones with chronic diseases or disabilities. And for more than 20 years, family caregivers have been honored and recognized in the month of November as part of National Family Caregivers month. According to the National Association for Area Agencies on Aging, families are the major providers of long-term care for older adults, and that unpaid caregiving accounts for over $500 billion annually.
“Family caregivers are an integral but often under-appreciated force in the American care system,” says Marcia Ory, PhD, MPH, founding director of the Texas A&M Health Center for Population Health and Aging. “They are the unsung heroes behind the medical teams and health-care providers, helping with everyday routines and dealing with challenges of living with health problems.”
According to the Caregiving in the US 2020 report, the prevalence of caregiving for adults has risen from 16.6 to 19.2% in from 2015 to 2020 — an increase of more than 8 million adults providing care to family or friends.
While caregivers of adults primarily care for a relative — with 50% of those care recipients being a parent or parent-in-law — other care recipients include spouses/partners, grandparents/grandparents-in-law, and adult children. About 10% of caregivers provide care to their neighbors or friends. In addition, a greater proportion of caregivers are providing care to two or more recipients: from 18% in 2015 to 24% in 2020.
“Caregiving is an activity that doesn’t discriminate. People of all generations, racial/ethnic groups, income or education levels, family types, gender identities, and sexual orientations can be caregivers,” Ory says. “And many of these familial caregivers are providing care without pay.”
In fact, according to the aforementioned report, family caregivers provide roughly 24 unpaid hours of care each week. Longer term, these caregivers find themselves providing care for 4.5 years, on average, and an increasing proportion have been providing care for 5 years or longer (29%, up from 24% in 2015).
While caregivers rely on health-care professionals as a source of information about providing care (55%), few report talking with health-care professionals about what they need to provide care (29%) and what they need to do to support their own well-being as a caregiver (13%).
“Caregivers often feel the push and pull of providing care on their time, their financial well-being, their health, their family, their work, and their own personal well-being,” Ory says. “They may find themselves in need of information, resources, or programs—but it’s often difficult to sort through the maze of information or to access potential solutions like in-home or residential care which are often too expensive to afford. This can lead to family caregiving affecting families economically and financially—a situation which is especially true for those caring for persons living with dementia.”
In fact, 1 in 5 caregivers report high financial strain as a result of caregiving, with 3 in 10 stopping saving and 1 in 4 taking on more debt. In addition, 6 in 10 caregivers report working while caregiving often causes them to experience work-related impacts like going in late, leaving early, or taking off time to provide and accommodate care. 1 in 10 report having to give up working entirely.
So what can caregivers do to ensure their physical and emotional health and financial wellbeing?
“Be sure to take time for yourself and nurture your own mind and body” Ory says. “If you aren’t healthy, both you and the person you care for will suffer. There are great resources from organizations, like AARP and the National Alliance for Caregiving, that can give you the information to find support.”
Additionally, the Center for Population Health and Aging is conducting studies to better understand the situation of caregivers of persons living with dementia and invites those interested to contact Aya Yoshikawa, PhD, at (979) 436-9527 or activeagingtexas@tamu.edu.
