CAREGIVING, INFORMAL

Although the majority of elderly people are able to manage independently in the community, a significant minority, particularly among those eighty-five and older, requires long-term assistance. Despite the popular association of frailty with nursing home placement, the majority of long-term care is provided in the community by family members, particularly spouses and adult children, with supplemental assistance from friends and neighbors. A 1997 study by the National Alliance for Caregiving and the American Association of Retired Persons estimated that 70 to 80 percent of all the in-home care for older people with chronic impairments is provided by families. According to the same study, nearly 25 percent of all households contain an adult who has provided care for an elderly person within the past year.

What is informal caregiving?

Caring for a frail elder can encompass a wide variety of tasks, from occasional help with heavy chores to daily assistance with personal care tasks. Family members provide instrumental assistance and financial management and, along with friends, offer emotional support. Relatives also mediate relationships between their elderly relatives and health care providers or social service agencies. Caregiving continues even if the elder relative enters a nursing home. Informal caregivers, particularly spouses and adult children, provide this complex mix of assistance for relatively long periods of time. One study estimated that caregiving for an elderly parent lasts an average of five to seven years, with caregivers helping the elderly care recipient between six and ten hours per week (Azarnoff and Scharlach). Another study estimated that American women will spend eighteen years caring for older family members, in comparison to only seventeen years for children (Stone, Cafferata, and Sangl).

As with many transitions in the life course of older families, the transition to the caregiver role is an unscheduled one. Sometimes the shift occurs suddenly, as when an older person suffers a stroke. More often, however, the transition begins almost imperceptibly, with caring for an older person at first entailing more a sense of responsibility than tangible assistance. A number of the adult daughters interviewed by Jane Lewis and Barbara Meredith felt they had "just drifted into caring" and were unable to identify the point at which they had assumed a caregiving role.

The types of assistance that gerontologists label as "caregiving" emerge gradually from the intergenerational exchanges that characterize family relationships. For most adult children, reciprocal exchanges of help with their parents are more common than one-way help, with the parental generation providing the bulk of the assistance. John Logan and Glenna Spitze report that elderly parents provide more assistance to their children than they receive in return at least until the parents are seventy-five years old. By that time, over half of elderly parents are receiving help from one or more children, although 30 percent of parents continue to provide assistance to at least one child. Their results do not argue against the importance of informal care to elderly parents encountering illness or disability. Informal caregiving is indeed the first line of defense against institutional placement in very old age. But Logan and Spitze's work reminds us of the importance of considering family care within a life course perspective.

Who are the family caregivers of frail elders?

The informal networks of older people are dominated by kin. For impaired elderly people who are married, the spouse is the first line of support. Spouses handle a broader range of tasks, provide more hours of assistance, and are more likely to provide personal care than are other caregivers. Husbands and wives are also more likely than other categories of caregivers to handle caregiving responsibilities on their own, without supplemental help from other informal caregivers or from formal services. The caregiver in an elderly couple is most likely the wife, since women generally live longer than men and are younger than their husbands. Most studies of spousal caregiving report that husbands experience lower levels of burden than wives. Husbands are also more likely than wives to receive supplemental assistance.

When a spouse is not present or when the level of support provided by the spouse is not sufficient, other family members—particularly adult children—step into the caregiving role. Research has demonstrated that children assist over shorter periods of time and provide less intensive assistance than do spouses, with the difference most pronounced among sons. Daughters are more likely than sons to assume the role of primary caregiver, even when the number and gender distribution of all siblings are considered. Daughters provide more hours and a broader range of tasks than do sons, who are less likely to provide daily assistance with routine household tasks or personal care. Daughters are more likely than sons to be monitors of care—assessing need, finding someone to provide the needed assistance, and making sure that tasks are performed correctly. The highest participation of sons in parental caregiving is found in families without daughters.

Elderly people without children living nearby compensate by developing close relationships with other kin and with friends or neighbors. Victor Cicirelli, who has studied sibling relationships in late life, reports that a small percentage of elderly persons rely on siblings for psychological support, for help with business dealings and homemaking, and as companions for social or recreational activities. Deborah Gold argues that elderly siblings serve as ready sources of support in times of crisis or as backups to regular caregivers. Consistent with gender differences in other relationships, sisters both give and receive more help than brothers.

Relationships with extended kin, including aunts, uncles, cousins, nieces, and nephews, vary in both emotional closeness and exchanges of assistance. The amount of assistance provided by extended kin ranges from moderate to low, with the level of help declining with the distance of the kinship relationship. Variation in the level of help also reflects differences in geographic proximity, norms embedded in ethnic culture, and individual family histories. Researchers report that extended kin occupy more pivotal roles in the helping networks of African-American elders than of white elders, a difference that persists when controlling for economic resources.

While older people, especially those without close kin, rely on friends or neighbors, these helpers provide a more limited range of assistance. Friends provide emotional support and, along with neighbors, offer assistance with occasional tasks like running errands or providing transportation. But friends or neighbors are rarely mentioned as a source of help with daily household chores or personal care in long-term illness. Older women are more likely than older men to have developed a network of close friendships that would foster the provision of informal care. The role of friends in providing informal care in late life also varies with ethnicity. For example, research indicates that African-American friendships exhibit greater exchange of both instrumental and emotional support than do white friendships. Friends also play a greater role in linking elders to formal services among ethnic minority elders.

The majority of the literature on caregiving for frail elders is consistent with the concept of a hierarchy of preferred caregivers. The hierarchical compensatory model, developed by Marjorie Cantor, posits that involvement of informal helpers reflects a normatively defined preference hierarchy based on the relationship between the care provider and the older care recipient (Cantor and Little). This notion of "preferred helpers" is used to explain the successive involvement of spouse, adult children, other family members, and friends and neighbors described in the empirical literature. The selection order becomes relevant when a previous category of helper is unavailable (a situation referred to as "substitution") or is unable to provide enough help to satisfy the older person's needs (a situation referred to as "supplementation"). This approach argues that the availability of helpers rather than the types of assistance needed by the older person explains the composition of informal networks (Miller and McFall).

The empirical research on informal caregiving is generally consistent with this preference hierarchy, but the hierarchical compensatory model does not explain which adult children or which other relatives will be recruited into the support networks of frail elders. Researchers studying the selection or recruitment of specific individuals as caregivers have identified characteristics of the elderly person, the potential caregiver, and their relationship as key predictors. Marital status of the care recipient is an importance factor, since spouses are the first-line caregivers. Gender is another factor. Most caregivers are women, but the gender of the elderly care recipient is also important. The predominance of adult daughters over adult sons can in part reflect the fact that most widowed parents are women, and older women may prefer to receive hands-on personal assistance from a daughter than from a son because of taboos involving intimate body contact (Lee). Geographic proximity is a prerequisite for routine, daily assistance, but emotional support and financial assistance can be accomplished over the miles.

Economic resources of both parents and adult children also mediate caregiving strategies. Affluent elderly families sometimes prefer to hire private-sector outside help with instrumental tasks. Hiring people to perform occasional chores allows older people to feel that they are still managing on their own, minimizing demands on their children and other informal helpers, and retaining control of the caregiving situation. Social class also influences the experience of providing family care, since affluent families have resources to hire supplementary assistance or purchase market alternatives for caregiving tasks.

There are also race and ethnic differences in regards to caregiving. For example, African-Americans are more likely to see informal caregiving as their familial responsibility. Cagney and Agree found that African-Americans were more likely to postpone the hiring of formal caregivers or the implementation of institutionalization than were white families.

Researchers have also focused on competing demands on the time and resources of informal caregivers, exploring the hypothesis that other family and employment responsibilities "pull" from caring for elderly relatives. Most of these studies focus on adult children caring for elderly parents. For example, some studies suggest that parental caregiving falls most heavily on unmarried adult children. Other studies explore employment as a constraint on the flexibility of adult children in responding to parental needs, but, with the exception of a slight decrease among adult sons, most studies report that employment has no impact on relationships between adult children and their elderly parents. Logan and Spitze tested the impact of particular configurations of roles on parental caregiving by adult children. They report that combinations of roles have no effect beyond the individual effect of specific roles. They conclude that stresses reported by caregivers who occupy multiple roles come not from the particular configuration of responsibilities but from the stressful responsibility of caring for a frail elderly parent.

The consequences of providing informal care

Informal caregivers often experience a number of negative outcomes, including emotional strain, financial losses, disruptions of plans and lifestyles, and health declines. Gerontologists distinguish between caregiver burden, which refers to management of tasks, and caregiver stress, which refers to the strain felt by the caregiver. Both burden and stress are highest within informal networks of Alzheimer's patients. There are a number of reasons why caring for a frail elderly person leads to more burden and stress than providing other types of informal assistance. First, the total task load can be greater, with caregiving obligations involving several generations and perhaps several households. As the range of assistance needs to expand, scheduling and supervising becomes more difficult. Lifting and assisting nonambulatory adults involves heavy physical labor, and helping people with personal care tasks violates norms of privacy.

Secondly, caregiving is often done alone, and caregivers who do not receive outside help often express feelings of isolation. Maintaining friendships becomes increasingly difficult, since caregiving disrupts social routines and restricts mobility. Neighbors and friends who had previously dropped in as part of a normal social routine withdraw as the caring tasks become more disruptive or distasteful. Informal helping networks often diminish as disability increases, until caring for the most severely impaired elderly usually falls on one person.

The strains of caregiving reverberate throughout families. Watching an older relative negotiate losses can initiate a process of anticipatory bereavement. Married couples struggle with the loss of time for each other when caring for an older parent or parent-in-law. Children can resent loss of their caregiving parents' attention, the disruption of their social life, more crowded households, and financial sacrifices when family resources are directed to caring for their grandparent. Siblings sometimes disagree over how to care for an elderly parent, and primary caregivers often complain that their sisters and brothers not only fail to carry their share of the burden but also fail to appreciate their efforts. Although the research literature emphasizes negative outcomes, many caregivers report satisfaction from fulfilling the needs of an older relative. These families report that sharing this last stage of life strengthens relationships and enhances self-esteem.

Caregivers who live with older care recipients usually report higher levels of stress than caregivers who maintain separate households. This result is not surprising, since limited financial resources and serious disability are the major impetus to shared living arrangements. Caregivers who live with the care recipient are always "on call," with a resulting loss of privacy, autonomy, and sleep. They may avoid the work of managing and traveling between two households, but they lose control over personal time and space.

Recent studies have explored the economic costs of caregiving. Arno, Levine, and Memmott estimate the economic value of informal caregiving at $196 billion in 1997. This figure exceeds the combined estimates of the cost of formal health care ($32 billion) and nursing home care ($83 billion). This amount is approximately 18 percent of the total national health care expenditures. As these figures indicate, the costs of community care cannot be estimated accurately with an exclusive focus on public expenditures. When elders are cared for in institutional settings, the costs of providing care include the wages paid to nursing home employees. When relatives or friends in the community provide the same care, the economic costs are overlooked because no money changes hands.

A key factor in assessing economic costs is the impact of caregiving on labor force participation and productivity. Caregivers who remain in the work force sometimes report that their work performance suffers. In one study, about one-third of employed caregivers reported being so tired that they could not work effectively. Some had to reject jobs requiring travel away from home, overtime, or irregular hours. Data from the National Long Term Care survey revealed that 40 percent of employed caregiving daughters had rearranged their work schedules, 23 percent cut back on hours, and 25 percent took time off without pay to balance the dual demands of paid work and family care (Quadagno).

The economic consequences are most severe for caregivers who limit their work time. Caregivers who undertake part-time work confront the disadvantages common to part-time workers, including low status, few opportunities for advancement, and limited fringe benefits. The visibility of women's caregiving obligations sometimes means that employers devalue their productivity and commitments to paid work (Williams). Caregivers who leave the labor market for substantial periods can have difficulty finding jobs at comparable wages. For many older caregivers, leaving the work force amounts to early retirement, especially given the low probability of reemployment among older workers.

The future availability of informal caregivers

Increases in the proportion of elderly persons, particularly those over eighty-five years of age, have lead to forecasts of increasing demands on family members to provide informal long-term care in the future. Changes in medical care mean that older people spend less time in the hospital, often discharged with more intense needs for care.

Meanwhile, there is concern that the availability of family caregivers has declined. Changes in fertility have led to what family sociologists describe as a "beanpole family," with fewer adult children available to assume caregiving responsibilities. The prevalence of divorce and remarriage will be higher in future cohorts of elders. Some studies report a decrease in the exchange of support between divorced fathers and their children, although a similar decline has not been confirmed among divorced mothers and their children. A study by Merrill Silverstein and Vern Bengtson found that children of divorced parents express a lower sense of obligation to parents than do children from intact families. Labor force rates among women raise concerns about the ability of adult daughters to continue to provide the majority of home care for parents requiring personal care. In addition, divorce impacts the number of available caregivers, because daughters-in-law often provide care to their husbands' parents.

Women's multiple responsibilities for paid and unpaid labor raised concerns regarding what became known as "women in the middle" or "the sandwich generation." Women in the middle are middle-aged and occupy the middle position in multigenerational families. Responsible for homemaking and paid employment, these women were caught between demands of caring for young children and caring for their frail elderly parents. Despite the intensity of demands on women occupying these multiple roles, recent research indicates that the prevalence of the phenomena may be less widespread than initially believed. Occupying multiple roles of spouse, parent, adult child of an elderly parent, and employed worker is relatively common among people in their forties and fifties. But the parents of people with dependent children are likely to be relatively healthy. By the time most adult daughters face caregiving demands from their elderly parents, their own children are usually living independently, thus reducing the likelihood of experiencing simultaneous demands from both older and younger generations.

Logan and Spitze found little evidence to support fears that demographic trends such as the aging of the population, increased divorce rate, declines in family size, or increasing labor force participation rates among women are disrupting family networks and shifting elder care responsibilities to public institutions. Contrary to the myth that family resources disappear when public supports become available, research on informal caregiving indicates that local networks dominated by geographically proximate kin provide the vast majority of long-term care to frail elders and families, turning to supplemental formal assistance only when the elderly relative's needs exceed the resources of informal caregivers. Nevertheless, the availability of formal support services is crucial to the ability of families to care for frail elderly relatives within community settings.

Policy recommendations addressing informal caregiving

A growing body of literature calls for programs to alleviate stress and burden on caregivers, including support groups, day treatment centers, respite care, home health, and housekeeping assistance. Although these programs can extend the length of time in which informal networks can provide care, many gerontologists suggest that they are essentially palliative or band-aid approaches that fail to alter the structural arrangements that produce caregiver burden and stress.

Recognition of the long-term disruptive affects on employment has generated recommendations for caregiving leaves and greater job security. The U.S. Family and Medical Leave Act (FMLA) addresses employed caregivers' need for job protection, but other aspects of the legislation curtail its potential benefits, particularly for women. Small businesses employing fifty or fewer employees are exempt from the FMLA. Over half of all private sector employees, including a disproportionately large number of women, work for such firms. Furthermore, most workers cannot afford to take an unpaid leave from work.

Family-friendly workplace policies are advocated as another approach to alleviating strains of providing family care across the life course, including care for frail elderly relatives. But family-friendly policies are often sold to business as strategies for recruiting and retaining valued employees, strengthening company loyalty, reducing absenteeism, and enhancing work performance (Hochschild). Thus, these policies are designed to help employees find ways to cope with caregiving demands that interfere with job performance. They do nothing to change the features of the workplace that contributes to strain.

Public opinion surveys indicate that most Americans believe that the government has an obligation to finance care for elders who cannot afford to purchase care themselves. However, as Atchley claims, "economically pressured state and federal governments have an interest in shifting as much of this financial responsibility onto the family as possible" (p. 213). Development and provision of formal services reflects a context in which care of the frail elderly is defined as a private responsibility of families, with formal intervention most likely at crisis points or when informal resources are exhausted or unavailable (Hooyman and Gonyea).

Eleanor Palo Stoller Lisa Martin

See also Filial Obligations; Kin; Parent-Child Relationship.

BIBLIOGRAPHY

Arno, P.; Levine, C.; and Memmott, M. "The Economic Value of Informal Caregiving." Health Affairs. Bethesda, Md.: Project HOPE, The People to People Health Foundation, Inc., 1999.

Atchley, R. Social Forces and Aging: An Introduction to Social Gerontology, 9th ed. Belmont, Calif.: Wadsworth Publishing Co., 2000.

Azarnoff, R., and Scharlach, A. "Can Employees Carry the Eldercare Burden?" Personnel Journal 67 (1988): 67–69.

Cagney, K., and Agree, E. "Racial Differences in Skilled Nursing Care and Home Health Use: The Mediating Effects of Family Structure and Social Class." Journals of Gerontology, Series B: Psychological and Social Sciences 54 (1999): S223–S236.

Cantor, M., and Little, V. "Aging and Social Care." In Handbook of Aging and the Social Sciences. Edited by R. Binstock and E. Shanas. New York: Van Nostrand, 1985.

Cicirelli, V. Sibling Relationships across the Lifespan. New York, N.Y.: Plenum Press, 1995.

Gold, D. "Continuities and Discontinuities in Sibling Relationships Across the Life Span." In Adulthood and Aging: Research on Continuities and Discontinuities. Edited by Vern L. Bengtson. New York, N.Y.: Springer Publishing Company, 1996. Pages 228–245.

Hochschild, A. The Time Bind: When Work Becomes Home and Home Becomes Work. New York, N.Y.: Metropolitan Books, 1997.

Hooyman, N., and Gonyea, J. Feminist Perspectives on Family Care: Policies for Gender Justice. Thousand Oaks, Calif.: Sage Publications, 1995.

Lee, G. "Gender Differences in Family Caregiving: A Fact in Search of a Theory." In Gender, Elders and Family Care. Edited by J. Dwyer and R. Coward. Newbury Park, Calif.: Sage, 1995.

Lewis, J., and Meredith, B. "Daughters Caring for Mothers: The Experience of Caring and its Implications for Professional Helpers." Ageing and Society 8 (1988): 1–21.

Logan, J., and Spitze, G. Family Ties: Enduring Relationships Between Parents and their Grown Children. Philadelphia, Pa.: Temple University Press, 1996.

Miller, B., and McFall, S. "Stability and Change in the Informal Task Support Network of Frail Older Persons." The Gerontologist 31 (1991): 735–745.

National Alliance for Caregiving and the American Association of Retired Persons. Family Caregiving in the U.S.: Findings from a National Survey. Bethesda, Md.: National Alliance for Caregiving, 1997.

Quadagno, J. Aging and the Life Course: An Introduction to Gerontology. Boston: McGraw-Hill, 2000.

Silverstein, M., and Bengtsen, V. "Intergenerational Solidarity and the Structure of Adult Child-Parent Relationships in American Families." American Journal of Sociology 103 (1997): 429–460.

Stone, R.; Cafferata, G.; and Sangl, J. "Caregivers for the Frail Elderly: A National Profile." The Gerontologist 20 (1987): 616–627.

Williams, J. Unbending Gender: Why Family and >Work Conflict and What To Do About It. New York: Oxford University Press, 2000.