Family caregivers play a key role in delaying and possibly preventing institutionalization of chronically ill older patients. Although neighbors and friends may help, about 80% of help in the home (physical, emotional, social, economic) is provided by family caregivers. 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 (usually a wife) is more likely to be the caregiver, often along with others in or outside the family. Approximately 39 million Americans, more than 16% of the US population, were estimated to have served as an unpaid caregiver for someone age 50 or older in the year 2020. 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 caregiving for older adults consumes about 24 hours per week, and about 20% of the time more than 40 hours per week. Caregivers of older adults report that 63% of their care recipients have long-term physical conditions and 29% have cognitive impairment. 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, meals 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 to prior centuries, resulting in a much lower dependency ratio (currently about 24 older dependents for every 100 working-age adults compared to about 15 older dependents per 100 workers in 1960).
- Increasing mobility of US society and the increased divorce rate: As a result, families are more likely to be geographically separated, and family ties are more complex. Nonetheless, 80% of people ≥ 65 live within 20 minutes of one child.
- 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. New policies such as the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2018 aim to identify steps that government, communities, health providers, employers, and others can take to help relatives and partners who provide care to loved ones.
Caregivers should be connected to social workers 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 emotional support, counseling, respite, 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, or 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 loved one is hostile or difficult, not taking it personally
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 United States 2020: Data on the prevalence of caregivers in the US, demographics of caregivers and care recipients, financial impacts on caregivers, and more provided by the National Alliance for Caregiving (NAC) and American Association of Retired Persons (AARP)
- Medicaid's Home Care Benefits: Information on the types of home care that are covered and eligibility, waivers, and applications for coverage
- Family Medical Leave Act (FMLA): Information from the US Department of Labor regarding FMLA eligibility and benefits