Family caregivers play a key role in caring for chronically ill older people. Although neighbors and friends may help, about 80% of help in the home (physical, emotional, social, and economic) is provided by family caregivers. About 38% of people age 80 years or older and 76% of people 90 years or older require routine help with self-care and household tasks. Family caregivers who assist with these routine needs can often delay or even prevent the need for care in residential care facilities.
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. Some family caregivers provide minimal assistance (for example, periodically checking in) while others provide full-time, complex care. Sometimes care is needed for a short time, as when a person is recovering from surgery. Often, care is needed for months or years. On average, family members caring for older people spend about 4 hours a day in caregiving activities.
Although society tends to view family members as having a responsibility to care for one another, the limits of such obligations vary among cultures, families, and individual family members. The willingness of family members to provide care may be bolstered by supportive services (for example, technical assistance in learning new skills, counseling services, and family mental health services) and supplemental services (for example, personal care such as assistance with grooming, feeding, and dressing, as well as home health care, adult day care, and meals programs). Supplemental services may be provided on a regular schedule or as respite care for a few hours or days.
Changes in demographics and social values have reduced the number of family members available to care for impaired older relatives. These changes include 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 life span, this delay has created a sandwich generation of caregivers who care simultaneously for their children and their parents.
- Increasing mobility of society and the increased divorce rate: Families are more likely to be geographically separated, and family ties may be weakened. Nonetheless, 80% of people 65 or older live within 20 minutes of one child.
- An increasing number of women in the workforce: Previously, women may have provided care for older parents, but the demands of a job may diminish or eliminate their ability to do so.
- The number of dependent and very sick older people is increasing.
These factors predict an increasing demand for home care services provided by someone other than family members, friends, and neighbors.
Although caregiving can be very rewarding, it can also have negative effects. Family caregivers may experience considerable stress and subsequent health problems, isolation, fatigue, and frustration, sometimes leading to a sense of helplessness and exhaustion (caregiver burnout) or mistreatment of the older person. The impact on the caregiver is likely to be greater when an older person has a greater burden of disease and disability and more care is required.
Caregiving may also become a financial burden. Couples in which one partner cares for the other tend to be disproportionately poor. Sometimes a working caregiver needs to leave full-time employment or reduce work hours to accommodate caregiving.
Effective interventions for caregivers include emotional support, counseling, respite (time away), and practical assistance with care tasks. Caregivers can often obtain reassurance or learn helpful information or strategies for caregiving from doctors, 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 psychologic support from other family members and friends
- Investigating outside groups that can offer psychologic support (such as support groups) or that can help with caregiving (such as counseling, home health care, adult day care, meals programs, and respite care)
- Avoiding taking the person's difficult behavior or hostility (if they occur) 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