Whether they are loving family members or paid healthcare and social services professionals, the dedicated individuals who identify as U.S. “caregivers” represent profoundly significant sources of support to anyone who is sick or nearing the end of life.
According to recent data, the number of paid and unpaid caregivers continues to grow, the stresses and benefits they report continue to evolve, and the economic impact of their care increases as the U.S. population ages.
One recent national report, in fact, describes caregivers as “the cornerstone of society” as they tend to the medical, emotional, physical and spiritual needs of their family members and patients. As such, they play a very hands-on, valuable role across the healthcare spectrum.
Who Are These Caregivers?
The nation’s unpaid family caregivers include husbands and wives of all ages, caring for their spouses and partners as they face an advanced illness or the end of life. They are middle-aged sons and daughters who simultaneously juggle caring for aging parents and parenting duties for their own children. They are siblings, in-laws and friends of all ages and from all socioeconomic and demographic sectors.
The nation’s paid caregiving professionals are dedicated nurses, nursing assistants, home care aides, social workers, chaplains and other professionals. Their collective dedication to caring ensures that adults and children who struggle with severe illness or who are approaching the end of life receive personalized, supportive care for their physical, emotional and spiritual health.
What is the impact of caregivers? What challenges do they face, and what benefits do they gain by caring for others?
Caregiving by the Numbers: 2020 Data
The 2020 “Caregiving in the U.S.” research report by AARP Family Caregiving® and the National Alliance for Caregiving paints a robust picture of caregiving and its evolution over time:
- About 53 million U.S. adults — slightly more than 1 in every 5 Americans (21.3 %) — provided care to an adult or special-needs child at home in the previous year, up from an estimated 43.5 million caregivers in 2015
- The average caregiver is 49 years old — 61% women and 39% men
- 61% are White, 17% are Hispanic/Latino, 14% are Black, 5% Asian American-Pacific Islander, and 3% other race/multiracial
- 89% of caregivers are a relative, 50% a parent-in-law, 12% a spouse/partner, 8% a grandparent/grandparent-in-law, 7% a sibling/sibling-in-law, 6% an adult child, and 6% another relative (10% are non-relatives)
- 61% of caregivers continue to work at another job; 45% have experienced at least one financial impact because of their caregiving duties
- 76% care for one adult, 24% care for two or more adults, a trend that is rising
- Caregivers provide about 24 hours of care each week, on average, with activities of daily living representing 99% of duties (for such things as bathing, feeding, dressing, toileting, moving, and self-care) and 60% involving medical/nursing tasks
- 74% of caregivers visit once a week or more; 13% visit a few times a month, 4% visit once a month, and 9% visit less often than monthly
- 51% say they gain a “sense of purpose” by being a caregiver, a figure that rises to 61% among Hispanic caregivers
“The demographic characteristics of caregivers remain largely unchanged since 2015: caregiving remains an activity that occurs among all generations, racial/ethnic groups, income or educational levels, family types, gender identities, and sexual orientations,” note the AARP report’s authors.
“The shifts we do see in caregiver demographics reflect general changes in the demographic composition of the U.S. population over the past five years. As the country continues to age, the need to support caregivers as the cornerstone of society will only become more and more.”
“Valuing the Invaluable”
The AARP’s estimated economic value of family caregiving was , based on about 41 million caregivers providing an average of 16 hours of care per week, at an average value of $13.81 per hour. The same value in 2022 would be far higher, given the increase in the number of caregivers, hours of care provided, rising wages, and the amount of care required as the US population ages.
Common challenges among caregivers, according to the 2020 report:
- 36% describe caregiving as highly stressful, 18% report financial strain (stopped saving, took on more debt, used up savings, borrowed money, left bills unpaid/paid late), and 17% report physical strain
- 26% have difficulty coordinating care (up from 19% in 2015, and defined as “navigating the health care and long-term services and supports” systems)
- 23% say that caregiving has made their health worse
- 21% say that their own health is fair to poor because of caregiving, up from 17% in 2014
- The 21% who say they feel alone as caregivers experienced more stress, strain and decreased health than those who do not feel alone
Data Identifies Positive Aspects of Caregiving
In 2011, researchers for the National Study of Caregiving identified 18 million friends and family members who provided 1.3 billion hours of monthly care to more than 9 million older adults in 2011; two-thirds of those caregivers were adult children or spouses.
Positive aspects of caregiving, according to the NSOC data, include:
- 86% report satisfaction that a loved one is well cared for
- 69% of caregiver grew closer to the loved one
- 68% of caregivers received a substantial benefit
- 52% of caregivers learned how to deal with difficult situations
- 46% of caregivers gained more confidence
For caregivers who reported physical or emotional struggles, researchers also identified factors “that might make caregiving a little less challenging.” Those who said they felt they had a greater purpose in life reported fewer physical difficulties, and among women, that same sense of purpose was linked to fewer caregiving-related emotional difficulties.
Paid vs. Unpaid Care, and the Value of Palliative & EOL Care
Recent data from the National Hospice and Palliative Care Organization reports that as of 2019, 4,840 hospice programs provide care in the U.S., up 18.3% from 2014. Patients become eligible for Medicare-funded hospice care when a physician certifies a life expectancy of 6 months or less if the disease runs its normal course, although many family caregivers do not take advance of professional hospice services.
A 2011 analysis of caregivers of 8,245 Medicare beneficiaries found that 90% of care was provided by family members, with about 10% provided by paid caregivers. Of paid care, about 9% was funded through federal, state, or insurance programs, especially if the ailing family member had cancer, heart disease, or dementia.
With a focus on end-of-life (EOL) care, the study pointed out that “palliative care provides an added layer of support for patients and families … and is available at any point in one’s illness. Hospice care, in contrast, is limited to the last months of life only and may arrive too late to fully benefit caregivers who have already experienced tremendous caring-related strain. Continued expansion of access to high-quality hospice and palliative care programs, which have demonstrated effective support for patients and their caregivers, will be a critical tool to support EOL caregivers.”