Family caregivers play a key role in delaying and possibly preventing institutionalization of chronically ill older patients. Although neighbors and friends may help, approximately 89% of help in the home (physical, emotional, social, economic) is provided by family caregivers (1, 2). When the patient is mildly or moderately impaired, a spouse or adult children often provide care, but when the patient is severely disabled, a spouse is more likely to be the caregiver, often along with others in or outside the family. In 2020, > 40 million caregivers in the United States provided unpaid care to a family member or another person age ≥ 50 (1, 2). Approximately 38% of people ≥ 80 years and 76% of people ≥ 90 years require routine help with self-care and household tasks.
The amount and type of care provided by family members depend on economic resources, family structure, quality of relationships, and other demands on the family members’ time and energy. Family caregiving ranges from minimal assistance (eg, periodically checking in) to elaborate full-time care. On average, family caregivers for older adults spend approximately 22 hours per week giving care, and approximately 19% of these caregivers spend > 41 hours per week (1, 2).
Caregivers of older adults > 55 report that > 66% of their care recipients have long-term physical conditions, and > 24% have memory problems with an increase of nearly double by age 85 (1, 2). Caregiving for older adults with neurocognitive disorders is known to be particularly intense and burdensome and to have harmful effects on caregivers.
Although society tends to view family members as having a responsibility to care for one another, the limits of filial and spousal obligations vary among cultures, families, and individual family members. The willingness of family members to provide care may be bolstered by supportive services (eg, technical assistance in learning new skills, counseling services, family mental health services) and supplemental services (eg, personal care [assistance with grooming, feeding, and dressing], home health care, adult day care, meal programs). Supplemental services may be provided on a regular schedule or as respite care for a few hours or days. Some older adults with significant care needs do not have any available, willing, or capable family members or friends to provide care and are living with unmet needs and sometimes social isolation.
Changes in demographics and social values have reduced the number of family members available to care for impaired older relatives because of the following:
Increased life span: As a result, the population of the very old has been increasing (3). Thus, their children, who are potential caregivers, are likely to be old also.
Delayed procreation: Combined with increased longevity, this delay has created a sandwich generation of caregivers who care simultaneously for their children and their parents.
Smaller family size: Reduced numbers of offspring throughout the past several decades have resulted in fewer (and older) children to help with caring for their older family members.
Increases in the mobility of society overall as well as in the divorce rate (in the United States): As a result, families are more likely to be geographically separated, and family ties are more complex. Nonetheless, 76% of people ≥ 65 live within 20 minutes of 1 family caregiver (1, 2).
An increasing number of women in the workforce: Previously, women had provided the majority of care for older parents due to gender role expectations, but the demands of careers have diminished their availability to do so.
Improved management of chronic conditions: The number of dependent and very sick older adults is increasing.
These factors predict an increasing demand for home health care services provided by someone other than family members, friends, and neighbors.
Effects of caregiving
Although caregiving can be very rewarding, it can also have negative effects. Family caregivers may experience considerable stress (called caregiver burden) and subsequent health problems, isolation, fatigue, and frustration, sometimes leading to a sense of helplessness and exhaustion (caregiver burnout) or elder abuse. The impact on the caregiver is likely to be greater when an older adult has a greater burden of disease and disability and greater intensity of care is required.
Caregiving may also become a financial burden. Couples in which one partner cares for the other tend to be disproportionately poor. Adult children or their spouses may need to reduce work hours or take prolonged leaves of absence from work to provide care. Lost wages are a serious reality for many caregivers. Recent policies aim to identify steps that government, communities, health care professionals, employers, and others can take to help relatives and partners who provide care to loved ones (4).
During the COVID-19 pandemic (because it required isolation and disrupted formal care), family caregivers reported significant increases in stress, anxiety, depression, sleep disturbance, fatigue, food insecurity, and financial worries. They also experienced a decrease in social participation as well as in their sense of financial well-being (5).
All caregivers of older adults should be connected to social workers to assess their needs for support, referral to services, and counseling and to assess their eligibility for the training, respite, financial support, and other services made available to caregivers. In the United States, these services are available through Medicaid-waiver programs for nursing home–eligible older adults who elect to remain at home.
Effective interventions for caregivers include interdisciplinary care coordination; benefits optimization; education about conditions and treatments; immediate and ongoing emotional support; individual, family and group counseling; respite care services; and pragmatic assistance with care tasks. Importantly, caregivers can often obtain reassurance and learn helpful information or strategies for caregiving from physicians, nurses, social workers, and case managers.
Caregivers can also take the following measures to prepare themselves for caregiving and to avoid caregiver burnout:
Attending to their own physical, emotional, recreational, spiritual, and financial needs
When appropriate, asking for help with caregiving or support from other family members and friends
Investigating outside groups that can offer psychological support (eg, support groups) or help with caregiving (eg, counseling, home health care, adult day care, meals programs, respite care)
If their family member is hostile or difficult, learning strategies for not taking it personally and coping with emotional strain
References
1. National Alliance for Caregiving (NAC). Caregiving in the U.S. 2020: A focused look at family caregivers of adults age 50+. Accessed October 29, 2024.
2. National Alliance for Caregiving (NAC).. Together in Care: Empowering Direct Care Workers and Family Caregivers to Meet Growing Demand for Care Accessed December 9, 2024.
3. United States Census Bureau. Older Population and Aging. Accessed December 9, 2024.
4. The Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council & The Advisory Council to Support Grandparents Raising Grandchildren. 2022 National Strategy to Support Family Caregivers. Accessed December 13, 2024.
5. Beach SR, Schulz R, Donovan H, Rosland AM. Family Caregiving During the COVID-19 Pandemic. Gerontologist. 2021;61(5):650-660. doi:10.1093/geront/gnab049
More Information
The following English-language resources may be useful. Please note that The Manual is not responsible for the content of these resources.
Medicaid's Home Care Benefits: This website provides information about the types of home care that are covered and about eligibility, waivers, and applications for coverage.
Family Medical Leave Act (FMLA): This website provides information about FMLA eligibility and benefits from the United States Department of Labor.
