Caregiving happens when you’re grocery shopping or in a meeting. Caregiving happens when you’re trying to get out the door to go to work and it happens when you least expect it.
#CaregivingHappens raises awareness of your role as a family caregiver as people realize that you may be running late because you’re picking up your loved one from chemo or your friend understands that you’re not avoiding them, you’re caring for your mom with Alzheimer’s.
#CaregivingHappens when you’re busy with something else or have plans. It may make you miss meetings or other appointments.
When #CaregivingHappens, it’s not always convenient or expected. We understand, and we get it.
Who Are Family Caregivers?
A caregiver—sometimes called an informal caregiver—is an unpaid individual (for example, a spouse, partner, family member, friend, or neighbor) involved in assisting others with activities of daily living and/or medical tasks. Formal caregivers are paid care providers providing care in one’s home or in a care setting (day care, residential facility, long-term care facility). For the purposes of the present fact sheet, displayed statistics generally refer to caregivers of adults.
According to estimates from the National Alliance for Caregiving, approximately 66 million Americans (or 29 percent of the adult U.S. adult population involving 31 percent of all U.S. households) have served as family caregivers for an ill or disabled relative.
Estimates also suggest the majority of caregivers are female. The percentage of family or informal caregivers who are women range from 53 to 68 percent, according to the Family Caregiver Alliance. While men also provide assistance, female caregivers tend to spend more time providing care than male caregivers (21.9 versus 17.4 hours per week). Further, women are likely to assist with more difficult caregiving tasks, such as toileting and bathing, while men are more likely to assist with finances or arrange for other care.
Nearly two-thirds of family caregivers are employed full or part time. They disproportionately come from lower-income households: 44 percent live in households under twice the federal poverty level, compared with one-third of non-caregivers. Caregivers are equally distributed among urban, suburban, and rural areas. However, caregivers in rural areas face unique challenges, including limited access to primary and emergency health care, supportive services, and accessible transportation.
Grandparents as caregivers. The U.S. Census Bureau estimates approximately 5.7 million grandparents live with grandchildren in their households, and that 2.4 million of those co-resident grandparents are primary caregivers for their grandchildren, representing 42 percent of all grandparents residing with their grandchildren. Grandmothers constitute the largest proportion — 63 percent — of these caregivers, and African-American families represent the majority — 52 percent of — all caregiving grandparents. In some disadvantaged neighborhoods, up to 20 percent of children have a grandparent or relative as their primary caregiver. A reported 26 percent of the 7 million grandparents co-residing with grandchildren, and 24 percent of the 2.7 million who are primary caregivers for them, reported significant disability themselves, which makes it likely that some of the youth in these households have caregiving responsibilities as well.
Youth as caregivers. Many children and adolescents, referred to as caregiving youth, are also serving as caregivers for sick or disabled siblings, parents or aging relatives. Nationwide, there are approximately 1.3 to 1.4 million child caregivers who are between the ages of 8 and 18. Of the 28.4 million caregiving households that have a child 8 to 18 years of age living there, 3.2 percent, or 906,000 households, include a child caregiver. More than 8 million U.S. families include at least one parent that has a disability.
Young Adults as caregivers. Between 12 to 18 percent of the total adult caregivers in the US are estimated to be between the ages of 18 and 24, a group known as emerging adults, and they have many of the same caregiving responsibilities as older adults.
Elders as caregivers. Many caregivers of older people are themselves older adults. Of those caring for someone aged 65 or older, the average age of caregivers is 63, with a third of these caregivers in fair to poor health themselves.
LGBTQ+ as caregivers. Almost half — 46 percent — of lesbian, gay, bisexual and transgendered elders provide caregiving assistance to families of origin or families of choice.
Estimates suggest that the number of caregivers will only continue to rise. Two-thirds of the U.S. public expects to be caregivers in the future, and 43 percent report that it is very likely that they will become a family caregiver at a future time.
- The Caregiver Action Network
- Administration on Aging (2004). National Family Caregiver Support Program (FCSP) Complete Resource Guide. Washington, D.C.: Author.
- Butts, D. M. (2005). Kinship Care: Supporting Those Who Raise our Children. Baltimore, Md.: Annie E. Casey Foundation. Retrieved from http://www.aecf.org/resources/kinship-care-supporting-those-who-raise-our-children/
- Commonwealth Fund (2005). Issue Brief: A Look at Working-Age Caregivers’ Roles, Health Concerns, and Need for Support. Retrieved from http://www.commonwealthfund.org
- Easters Seals & the National Alliance for Caregiving (2007). Caregiving in Rural America. Retrieved from http://www.easterseals.com
- Family Caregiver Alliance (2012, November). Selected Caregiver Statistics (Fact Sheet). Retrieved from https://www.caregiver.org/selected-caregiver-statistics
- Levine, C., Hunt, G.G., Halper, D., Hart, A.Y., Lautz, J., & Gould, D.A. (2005). Young Adult Caregivers: A First Look at an Unstudied Population. American Journal of Public Health, 95 (11), 2071-2075.
- National alliance for Caregiving (2010). Caregivers of Veterans: Serving on the Homefront. Retrieved from: http://www.caregiving.org/data/2010_Caregivers_of_Veterans_FULLREPORT_WEB_FINAL.pdf (PDF, 2.46MB)
- National Alliance for Caregiving (2009). Caregiving in the U.S., from http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf (PDF, 410KB)
- National Alliance for Caregiving (2004). Caregiving in the U.S. Washington, D.C.: Author.
- National Alliance for Caregiving (2005). Young Caregivers in the U.S., from http://www.caregiving.org/data/youngcaregivers.pdf (PDF, 503KB)
- National Gay and Lesbian Task Force Policy Institute (2005) Selling Us Short: How Social Security Privatization Will Affect Lesbian, Gay, Bisexual, and Transgender. From http://thetaskforce.org/downloads/reports/reports/SellingUsShort.pdf (PDF, 328KB)
- Opinion Research Corporation (2005). Attitudes and Beliefs about Caregiving in the United States: Findings of a national opinion survey. Opinion Research Corporation.
- Parents with Disabilities Online (2010). Retrieved from http://www.disabledparents.net/
- Pew Research Center (September 4, 2013). At Grandmother’s House We Stay. Retrieved from: http://www.pewsocialtrends.org/2013/09/04/at-grandmothers-house-we-stay/
- United States Census Bureau, (2006). 2005 American Community Survey: Tables S1001 and S1002. Washington, D.C.: U.S. Census Bureau.
We hope this information is helpful to you in the important work you do as a family caregiver.
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