Informal Caregiving

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.