Families: a basic source of long-term care for the elderly

The growing need for services for the aging, whether formal or informal, is directly related to changes occurring in the world's population. Demographic projections indicate that the fastest-growing population group in the world continues to be the elderly. In 1980, there were an estimated 258 million persons aged 65 and over, with the number expected to rise to 396 million by the year 2000.

Since women tend to outlive men, the majority of older people are women, who also make up an increasingly large proportion of the extremely old--those 80 and older. In the United States, for example, women comprise 57 percent of persons 65 to 74, 63 percent of those 75 to 84, and 70 percent of those 85 and over. This sex imbalance has serious implications for the provision of care, since women are more likely to be widowed and living on limited incomes.

Equally significant, in terms of the need for social supports, is the rapid increase in the proportion of elderly aged 80 and over. It is estimated that by the year 2000 more than 10 percent of the aged populations of nearly all nations will be 80 and older. In the United States as in other developed countries, the proportion of these "old old" persons will be even higher, and is expected to double from the current 9 percent to approximately 18 percent of the elderly population by the year 2000. This continued increase in the number of old old coincides with the expanded involvement of women in the labor force and the resultant reduction in the pool of persons potentially able to provide family care.

Disability and Chronic Illness

Older people differ in their need for assistance. Although most older people suffer from one or more chronic illnesses, the majority are not disabled or dependent. Brody notes that "most older people do not need any more help than the normal garden variety of reciprocal services that family members of all ages need and give each other on a day to day basis and at times of emergency or temporary illness" (Brody and Brody, 1981).

Data on disability and the need for services in the United States support this view and suggest that there are roughly three distinct age groups of elderly with differing degrees of support needs. The largest group, about 60 percent of the aged population, are the young old, aged 65 to 74. The majority of the young old are relatively fit and active. Sixty-one percent have no major functional limitation, and their need for family supports are minimal, except in times of crisis. The next largest group consists of the moderately old, aged 75 to 84. Persons in this group, comprising 30 percent of the elderly, have increasing rates of illness and disability, and yet half of them have no limitations in their ability to carry out the activities of daily living. Thus, most are still independent, although they may increasingly need some assistance with more arduous tasks such as carrying heavy shopping bundles or heavy cleaning.

The oldest elderly, those aged 85 and over, are the most vulnerable and in need of assistance. Although they comprise only 9 percent of the elderly, the majority in this group either are limited in the kind or amount of major activity they can undertake, or are totally unable to carry out the major activities of daily living. This group requires the most extensive support, which often includes personal care such as washing, bathing, and supervision of medical regimes.

There are also sex and socioeconomic differences among the elderly. Women have a higher rate of illness, both acute and chronic, and are more likely to suffer limitations in their ability to perform normal routines. But, the diseases associated with women tend to be less life-threatening than those prevalent among men, suggesting one reason why women tend to outlive men. Furthermore, the burden of illness and chronic disability falls most heavily on those in the lowest socioeconomic position and members of minority groups.

Most older people who need care live in the community, not in institutions. A national health survey by Shanas found that among community-based elderly about 8 percent to 10 percent were bedfast or homebound and as functionally impaired as those in institutions (Shanas, 1979a and 1979b). Thus, there were twice as many bedfast or homebound elderly at home as in institutions. (Elderly persons in institutions are estimated to constitute 4 percent to 5 percent of the elderly population at any given time.) In addition, another 7 percent of the community residents surveyed were able to go outside, but only with difficulty.

While the amount of help needed by the elderly living in the community varies greatly, estimates of the overall proportion requiring some kind of supportive services range from 12 percent to 40 percent (depending on the services included). The majority of experts suggest that one-third of the elderly, or about eight million people, need some help.

Given the growing number of older people and particularly the rapid expansion in the number and proportion of the old old (who need the greatest amount of care), we can see that the role of the family is indeed crucial, from both the individual and societal points of view.

The Role of the Family

Is the family really involved in assisting older people? To what extent are family members responsible for the long-term care of the elderly? And what of the future of family care?

The long-standing pervasive myth of the elderly as isolated and abandoned without meaningful kin relationships has been destroued by study after study. What has emerged instead is a picture of urban industrial society in which the social support system of the elderly increasingly involves an amalgam of informal assistance provided by family and significant others (such as frineds and neighbors) and formal services offered by large-scale organizations, both governmental and voluntary, usually supported by public funds. We have seen an evolution of the traditional extended family to a modified extended family characterized by a coalition of separately housed, semiautonomous, semidependent families. Often possessing a quality called intimacy at a distance, these family units--some nuclear, some female-headed single-parent, others composed of nonrelated adults--share with formal organizations the function of family. As a result, there has been a shift in the importance of familial and societal roles, with regard to the elderly in such areas as income maintenance, health, and housing, but the family has by no means been supplanted by formal organizations. And nowhere has the family been more crucial than in the provision of social supports, particularly in the case of the long term care needs of the frail elderly.

Social Supports

What are the social supports needed by the elderly, and how are they provided? Three decades of gerontological research and practice have shown that the conditions of the elderly that require supports are usually chronic, calling for sustained assistance. And, although purely medical or medically related services are sometimes involved, in general the supports are social and health related in nature and are needed to help an older person maintain physical, psyhcological, and social integrity over time. Thus, a social support system provides assistance to older people fulfilling three major needs:

* Socialization and personal development.

* The carrying out of daily living tasks such as shopping, cleaning, and laundry, and

* Personal assistance during times of crisis or illness.

Research has also shown that older Americans perceive the informal network of kin (particularly spouse and children), friends, and neighbors as the most appropriate source of social supports in most situations, and they turn to this entwork first and most frequently. Only when assistance from the informal system is unavailable or no longer able to absorb the burden of such care is help sought from formal organizations. The social support system in the United States can therefore be categorized as heirarchical-compensatory, with kin as the first and preferred avenue of assistance, followed next by frineds and neighbors and lastly by government and other formal organizations.

Research in New York City and elsewhere discloses a pattern of reciprocal aid between generations, including emotional support, economic aid, child care, household management, and health care. The amount of help that parents receive from their children is related to the level of the parent's frailty and the paucity of his or her income, suggesting that as older people become more vulnerable, children respond with more assistance. Although research in New York and Los Angeles shows that the role of family as a support giver is strongest among the Hispanic population, where the traditional extended family is more in evidence, white and black elderly also have substantial informal support networks, involving one or more children usually living close by. Interestingly enough, the extent of informal supports does not vary much by social class, although the form of interaction may differ. Working- and lower-middle-class families interact with direct assistance. Upper-income families rely more heavily on gifts of money or the purchase of outside services. But no matter the form, the family remains the prime caretaker of its older members in the United States today.

However, focus on the family should not obscure the fact that there are a significant number of elderly, probably at least one-third, without children or with no children nearby. For such older people, other relatives, friends, and particularly neighbors can and indeed often do compensate as primary social supports. Even though most elderly live in age-integrated neighborhoods and the majority of neighbors may be younder, this does not preclude the development of mutual systems of assistance between the elderly and their younger neighbors. Thus neighbors and the elderly socialize, shop for each other, and help in emergencies; and neighbors, like family members, accompany older people to the doctor or clinic. However, the most frequent form of assistance is help during illness or emergencies.

In most cases, assistance from neighbors during illness is either short-term or sporadic, with the longer-range care of the more seriously or chronically ill generally assumed by kin. However, because neighbor-friends often play an important surrogate family role with respect to those elderly who have no kin, it is not uncommon in such cases for a neighbor to be involved in more long-range responsibilities, or those involving crucial decision making, such as hospitalization. The degree of involvement of a neighbor or friend at times of illness or in assisting with the chores of daily living is therefore not only a function of the intimacy of the relationship and the nature of the task, but is heavily influenced by the presence or absence of kin.

Perhaps most striking is the role of family and significant others in providing services in the home when older people are sick or grow frail with increased age. An analysis of two studies that sought to estimate the extent of current family responsibility to the functionally disabled elderly suggests that between 60 percent and 85 percent of all impaired elderly are helped by the family members, not professionals, give the bulk of the care of the impaired elderly. Eighty percent of medically related care and personal care, and 90 percent of home help services, to say nothing of extensive emotional support and response in crisis are provided by family members.

Assistance to the Moderately and Severely Impaired Elderly

As older people become more frail and dependent, a shift occurs in the kinds of social supports they need and the patterns of assistance. Families respond with more help. Studies involving the impaired elderly (ranging from persons with moderate functional limitations to the homebound and bedfast) indicate that the helping patterns are different from those involving the well elderly in the following ways:

* The time frame of assistance changes from intermittent and crisis-oriented to continual and long term.

* The degree of family involvement in the day-to-day lives of the elderly increases from relatively minimal to considerable.

* Assistance patterns between generations are no longer reciprocal, and assistance flows more clearly from children to parents.

* The nature of the tasks changes from peripheral to mroe central, including direct intervention in housekeeping, personal care and total management.

Perhaps most important is the fact that family members often continue to care for the frail elderly even at great personal sacrifice. In a recently completed study, what emerged as the overriding problem for all types of caregivers--spouse, children, and friends--was not the physical or financial strain, but the emotional impact of dealing with increased frailty in a prson with whom one is close. We find caregivers, mainly women, often working outside the home and already committed to a variety of roles, extending themselves even further to encompass the additional regular tasks involved in the care of a frail parent or relatives. Even when a homemaker service provided some relief, the families continued to remain in the picture, merely shifting the focus of their caregiving from cleaning and personal care to emotional support, socialization, and overall care management tasks.

But what of the future of the family as a provider of social care? In any cosideration of an appropriate balance between informal and formal long-term care for the elderly, there are some important trends and issues that require research and policy attention in the period ahead.

The number of older people in the population relative to younger adults is expected to increase worldwide, and the fastest-growing segment of the elderly, particularly in developed countries, are the older elderly. These are the very people who will need the greatest amount of assistance. Thus the need for long-term care will be greater, not less, in the coming decades.

And yet women, the very group now involved in providing most of the informal social care, are increasingly entering the labor market and remaining in it, even during the years of child rearing. The trend toward more working women is certainly influenced by the increase in divorce and single-parent households. But working women are found as well in the traditional nuclear husband-wife household, where two-wage-earner families are one answer to inflation and unemployment. Particularly significant is the continued rise in working among women aged 45 to 54, the very women who have traditionally contributed many hours to volunteer service and the informal support of elderly parents.

However, there is no indication that today's women, including those who work outside the home are abandoning their filial responsibilites. Work as such does not seem to be a reason for relinquishing responsibilities to the old. Rather, research suggests that these "women in the middle" appear to be extending themselves further to assume the multiple roles of caring for their own families and for aged parents, in addition to working at paid jobs. Furthermore, in interviews with children who care for frail parents, there emerges a deep sense of moral obligation on the children's part to both their own families and their older relatives. The dilemma of conflicting demands, in most cases, is handled not by denial of responsibility but through considerable personal sacrifice.

Coping mainly involves restricting life to the minimum essentials of family, work, and care for dependent elderly. Thus free time, relaxation, socializing with peers, and the pursuit of personal interests are sacrificed under the relentless time and energy constraints of caregiving. How long this pattern will continue we do not know. However, the strain involved is considerable, and some way must be found to lessen the burden in order to prevent both younger and older families from suffering.

Furthermore, spouses, friends, and neighbors are also involved as informal caregivers. Much less is known about the difficulties they can reasonably be expected to endure and still continue as viable sources of long-term care. Most important for elderly spouses, who are often in poor health themsevles, are in-home and respite services, sponsored by public or voluntary agencies, at a cost that the elderly can afford.

Friends and neighbors, although not usually as centrally involved in the care of the frail homebound elderly, are also a source of help. Their geographic proximity makes them particularly suitable for providing time-limited neighborhood-based assistance, such as shopping, escorting people to medical care, friendly visiting, and acting as "spotters" who alert family or community agencies in case of crisis. More attention needs to be directed to such secondary informal support groups, as well as to the appropriate involvement of other neighborhood helpers, such as churches, block associations, and the mail carrier.

If informal supports are to continue to be a principal mode of social care for older people, serious consideration must be given to methods of assisting family, friends, neighbors, and other informal groups in their efforts. Many forms of assistance merit consideration, including home care, respite service and counseling, training, and self-help groups for caregivers. Is support best given in the form of direct services, vouchers for service, cash allowances, or a combination thereof? Throughout the world there is a growing awareness that methods of assisting informal networks are essential, but widespread and comprehensive family-oriented policy in this area has yet to emerge.

Taking care of a frail dependent person often involves considerable emotional strain, particularly for the informal caregiver. Special services geared to caregiver needs should, therefore, be considered. Support groups for caregivers under the auspices of a church or social agency are a growing response. Through the sharing of experiences, information on the aging process, and available community resources, the burden is eased, to the benefit of all concerned.

Such groups, sponsored by unions or employee assistance programs, could function equally well in the workplace and, along with flexible work schedules, could make a difference in the well-being and productivity of caregiving employees.

Of great importance to the informal support system, particularly spouse and children, is gaining access to those community resources that exist. Given the fragmented nature of the social-health-care system in the United States, caregivers need information on resources and the availability of professionally supervised social services, including assessment and some form of care management. We often speak of "one-step entry points" for older people, but too often children and others giving care are enmeshed in time-consuming and bureaucratic duplications of effort.

With informal care playing such a crucial part in the social care system, the question of the proper interaction between informal and formal subsystems becomes critical. To bring about a positive interaction we need to know more about the appropriate balance among individual, familial, and societal responsibilities for the care of dependent elderly.

Furthermore, positive interaction requires training the formal system in the value and importance of the informal. Formal helpers of all disciplines must learn to appreciate the role of family, friends, and neighbors, must take the time to work with them and include them in care planning for older persons. Such an interface probably involves radical re-examination and changes in prevailing attitudes about professionalism, status, and the importance of technical expertise. A shortage of resources may force such a reappraisal, but it is hoped that the new working relationships which must emerge can be built upon a positive appreciation for the respective roles of each sector, formal and informal.

If we accept the premise that both informal and formal social care have unique value and that the welfare of older persons is advanced by cooperative efforts, we must be careful not to upset the delicate balance between the two subsystems. The tendency to formalize the informal system, regulate it, and bureaucratize it, in our desire to enhance and support, poses a real and serious threat. Does filial responsibility under law really promote informal support, or is the widely accepted moral imperative of caring for parents the more important motivating force? How does one help such mediating structures as churches and neighborhood groups to play a role with the elderly, without interfering with those structures? Even the granting of modest sums for development costs involves issues of accountability and regulation.

In a similar vein, although direct or indirect financial incentives may require less regulation, can the frail elderly realistically assume responsibility for obtaining and supervising home services, without the supervisory assistance of a case manager or younger family member? These are complex issues requiring more study. Solutions will differ, depending on the mix of public and private services, and the value systems, in particular countries. However, the basic issue of how to strengthen informal networks without transforming them into formal entities and creatures of government is crucial everywhere.

Finally, in a climate of service retrenchment and economic restraint it is particularly important that the role of community-based, publicly supported social-care services be reaffirmed. It is clear that the family and other informal supports have a unique and valuable role to play in the long-term care of the elderly. It is this informal system to which older people turn naturally, and there is little indication that the moral responsibility to care for the old eill be eroded in the coming period.

At least one-third of the elderly, however, are childless and perhaps without other family members to act as substitutes. In other cases, families are not close by, or can no longer carry the burden of in-home care without assistance. Thus, the informal system in highly industrialized societies cannot function adequately unless there is a floor of comprehensive social care entitlements and services in place in the community. Only with such a floor of services can we ensure, on the one hand, that older persons without kin are adequately cared for and, on the other hand, that assistance will be readily available when the need for care is beyond the capacity of the informal network.

There is always the danger, in periods of presumed limited resources, that the informal care system, whether it consists of family, friends, or neighbors, will be offered as a viable alternative to community-based services. Such an approach would not only destroy the balance between informal and formal but would result in a serious reduction in care for older people. Only when both systems are in place and functioning at optimum levels will the increasing number of elderly be assured the long-term care they need and desire.

COPYRIGHT 1985 U.S. Government Printing Office
COPYRIGHT 2004 Gale Group