Family caregivers play a key role in caring for chronically ill older people. Although neighbors and friends may help, almost 90% of help in the home (physical, emotional, social, and economic) is provided by family caregivers. One of every six Americans provides care to a family member age 50 years or older. About 38% of people age 80 or older and 76% of people age 90 or older require routine help with personal 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). Others provide full-time, complex care. On average, family caregivers for an older person spend about 22 hours a week giving 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.
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 the following:
Supportive services, such as technical assistance in learning new skills, counseling services, and family mental health services
Supplemental services, such as personal care (including help with grooming, eating, and dressing), home health care, adult day care, and meal programs
Supplemental services may be provided on a regular schedule or as respite care (time away from caregiving) 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 childbearing: Combined with increased life span, this delay has created a sandwich generation of caregivers who care simultaneously for their children and their parents.
Smaller family size: There are fewer (and older) children to help with caring for their older family members.
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.
An increase in the number of dependent and very sick older people due to improved management of chronic conditions
These factors predict an increasing demand for home care services provided by someone other than family members, friends, and neighbors.
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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 effect on the caregiver is likely to be greater when an older person has a serious disorder and/or a severe 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.
The COVID-19 pandemic created more problems for family caregivers because it required isolation and disrupted formal care, Family caregivers reported substantially more stress, anxiety, depression, sleep disturbances, fatigue, food insecurity, and financial worries. They were less able to interact with other people and participate in their usual social activities.
Caregivers and/or the older person can talk to health care professionals about getting help, and health care professionals should offer such help, which includes
Connecting caregivers to social workers
Coordinating interdisciplinary care
Referring them to services they need, such as counseling (individual, family, and/or group) and education about the older person's condition and available treatments
Making sure older people receive all the benefits they are eligible for, including financial support, training, and respite care (time away from caregiving)
Providing immediate and ongoing emotional support
Suggesting organizations that providing practical help with daily tasks
These measures can often give caregivers the reassurance they need. Caregivers can be given helpful information and/or learn strategies for caregiving from doctors, nurses, social workers, and other health care professionals.
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)
If their family member is hostile or difficult, learning strategies for not taking it personally and coping with emotional strain.
Taarifa Zaidi
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: At this web site, the National Alliance for Caregiving (NAC) and American Association of Retired Persons (AARP) provides information about caregiving in the US, such as the types of caregiving caregivers do, such as help with daily activities (including personal care), coordinating health care from different health care professionals, and helping with medical and nursing tasks (such as injections and tube feedings). Accessed 4/1/23.
Medicaid's Home Care Benefits: This web site provides information about the types of home care that are covered and eligibility, waivers, and applications for coverage. Accessed 4/1/23.
Family Medical Leave Act (FMLA): This web site provides information about FMLA eligibility and benefits from the US Department of Labor. Accessed 4/1/23.
