Family caregivers play a key role in delaying and possibly preventing institutionalization of chronically ill older patients. Although neighbors and friends may help, about 89% of help in the home (physical, emotional, social, economic) is provided by family caregivers (1). 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). About 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 about 22 hours per week giving care, and about 19% of these caregivers spend > 41 hours per week (1).
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). 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. 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 a more even distribution of the population across age groups compared with prior centuries, resulting in a much lower dependency ratio (currently about 28 older dependents for every 100 working-age adults compared with about 17 older dependents per 100 workers in 1960 [2]).
Increasing mobility of United States society and the increased divorce rate: 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 one family caregiver (1).
An increasing number of women in the workforce: Previously, women have 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 people 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 person 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. Although policies such as the Family Medical Leave Act assure mechanisms to challenge discriminatory termination or treatment associated with such absenteeism (including among same-sex couples), lost wages are a serious reality for many caregivers. Recent policies such as the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2018 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.
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 and a decrease in social participation and in their sense of financial well-being (3).
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 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 psychologic 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. Caregiving in the U.S 2020: A focused look at family caregivers of adults age 50+. The National Alliance for Caregiving, 2020. Accessed 3/24/23.
2. Ortman JM, Velkoff VA, Hogan H: An aging nation: The older population in the United States. Current Population Reports, 2014.
3. Beach SR, Schulz R, Donovan H, et al: Family caregiving during the COVID-19 pandemic. Gerontologist 61 (5):650–660, 2021 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.
Caregiving in the U.S. 2020: At this web site, the National Alliance for Caregiving (NAC) and American Association of Retired Persons (AARP) provide data, including the prevalence of caregivers in the United States, demographics of caregivers and care recipients, financial effects on caregivers, and many tables summarizing the information.
Medicaid's Home Care Benefits: This web site 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 web site provides information about FMLA eligibility and benefits from the United States Department of Labor.
