Caregiving

formalellie brubaker, timothy h. brubaker

informaldavid e. biegel, barbara l. wieder

FORMAL

Formal caregiving services for elderly individuals are those services bureaucratically provided by nonfamilial and noninformal social systems. Although families provide the majority of care to their older members who require aid with activities of daily living, formal services exist to support both the older individual and the family.

When the United States enacted the Social Security Act in 1935, it was intended to provide resources for older adults. With the 1965 Older American's Act and subsequent amendments, attempts were made to increase the well-being of elderly persons in the United States. The Older Americans Act authorized to Area Agencies on Aging to support programs which provide a variety of formal services to older Americans (Ozawa and Tseng 1999). Numerous other formal service policies and programs exist for older individuals and their families.

Internationally, various pension and retirement systems exist for aging individuals. For example, in Chile, a pension system is in place which allows each Chilean citizen to choose the age at which she or he will retire with the retirement pension based on that individual's contribution throughout his or her work life (Dychtwald 1999). Canada, Sweden, and United Kingdom are among other countries with pension systems for their citizens. In Switzerland, a national pension system exists with workers and employers each paying half the contribution to the pension system (Dychtwald 1999).

Variety of Services Available

Formal care to older adults includes care provided in the home and care away from the home. In-home services include, but are not limited to, visiting nurse services, homemaker services, respite care, and home health aide services. Care away from the home involves services such as care provided in a physician's office, day care provided in a nursing facility or other bureaucratic facility, congregate housing, senior center activities, nursing care provided in residential settings, and transportation.

Individuals receiving formal services may be provided with just one service, such as meals on wheels, or may receive a variety of services at any given time. An older individual living in his or her own home might be visited weekly by a visiting nurse, receive homemaker services, and have family members who shop for groceries, mow the lawn and provide transportation when needed, while carrying out tasks to care for her/himself as well. The recipient of formal services may work with a social worker who acts as a liaison between the recipient and providers of informal services and formal services. This social worker would be a formal service provider as well.

One family caregiver related the combination of services provided to her elderly mother. The adult daughter provided emotional support, transportation, and brought food she had cooked to the home. Physicians and nurses provided medical care. Several different types of homemaker services were used but none satisfied the mother. Finally, the mother and daughter agreed upon having the woman who had cleaned the mother's home for years come to the home for an hour each day to help with bathing and other personal tasks. This combination of informal, formal, and semiformal services met the mother's needs and allowed the daughter to remain involved as a partner in planning and providing care.

Factors Influencing Utilization of Formal Resources

Each older individual and later life family is unique. Throughout the elderly population, there are significant variations in the amount of dependency experienced as well as in the amount of care received (Uhlenberg 1996). In a study of 18,136 older adults, it was found that various factors influenced the utilization of formal resources, including marital status, race, age, and education (Ozawa and Tseng 1999). Younger, well educated, single, or widowed adults were more likely to utilize out of home services. White, as opposed to nonwhite, older adults were more likely to subscribe to in-home services. Married adults were less likely to receive formal services than nonmarried, due to the informal supports more available to married adults (Ozawa and Tseng 1999).

An individual's geographic location is also a factor in relation to use of formal services. In some countries, formal services are not as readily available as in the United States, or family members are expected to meet the service needs of their older relatives. Misa Izuhara (2000), for example, notes that in Japan although family relationships may have become less dependent, the government has not developed necessary services to meet the needs of the older population. In the United Kingdom, surveys have found that older individuals are supported by their families when needed, but that informal social supports often provide for the older individual also (Botelho and Thane 2001). Paul B. Baltes and Karl Ulrich Mayer (1999) report on findings that in Berlin, Germany, formal care is associated with older elders who experience lack of physical mobility, who are educated, and live alone.

Several studies have found that having adult children is not a predictor of use of formal services. Spouses are a more likely resource than are children (Cicirelli 1981; Ozawa and Tseng 1999). Consequently, older, divorced, or widowed individuals with children may use formal resources to a greater extent than older, married persons without children.

Availability and Prevalence of Formal Services

Little information is available concerning the extent to which older individuals utilize the vast array of formal services available (Ozawa and Tseng 1999). Frequently, older persons are unaware of formal services available to them and "some studies have found that the level of use is even lower than the level of awareness of services" (Ozawa and Tseng 1999, p. 5). One factor which increases the difficulty of gaining information regarding service use is the fact that information about the prevalence of home care services is dependent upon data reported by the recipients of those services and their families (Diwan, Berger, and Manns 1997).

Little information exists regarding the ways in which formal services and programs are provided or how various racial and ethnic populations respond to those services and programs. However, what research does exist in this area indicates that older individuals of color are less likely to utilize formal services than are white elderly. It has been suggested that for some individuals and families of color, acceptance of formal services has been influenced by experiences of discrimination and a lack of input into the development of formal services (Toseland and McCallion 1997).

The lack of specific information concerning the prevalence of formal services has a direct influence on the ability of social policy to provide for programs and services to meet the needs of later life families. In the same way, needs assessments of the later life families would provide rich data from which policies and programs could be developed.

Policies and Programs Related to Formal Services

Policies and programs established to meet the needs of the elderly population exist at the federal, state, and local levels. The gerontological literature both describes policy regarding social services as well as makes recommendations for policy development in areas which research has found lacking.

In the United States, the older population with developmental disabilities serves as an example of the ability of policies and programs to provide formal services for caregivers and recipients of care alike. As individuals with developmental disabilities age, the need for formal services for this population has increased. "The increased life expectancy of persons with developmental disabilities between 1970 and the present accounts for a significant percentage, perhaps as much as 20% or more, of the long-term care resources now being consumed by such persons in the formal out-of-home long term care system" (Braddock 1999, p. 158).

As this population ages, so do their caregivers. Older individuals with developmental disabilities may outlive their parents who have been their lifelong caregivers. Sibling caregivers will age correspondingly with the recipients of their care. The need for formal services will dramatically increase as these families of caregivers and recipients enter later life.

The demand for long-term care for this population of elderly has exceeded the available placements. The state of New Jersey responded to this by designating $30 million during the 1999 fiscal year to help reduce its waiting list for community based residential services (Braddock 1999).

Policy directed toward racially and ethnically diverse older populations has been successful in California. Policy in the state of California was developed to increase the participation of ethnically diverse elderly in a dementia-specific program. Due to underutilization of services by ethnically diverse populations, the California Department of Health Services developed an outreach program to overcome barriers to utilization of Alzheimer's disease diagnostic centers. In addition to the development of an outreach manual distributed to its community centers, this policy provided for education and linkages with established community agencies already engaged with the populations to be served. The result of these efforts is that Hispanic, African-American, and Asian populations in California "are utilizing the network of state diagnostic centers at a rate proportional to their representation in the population" (Hart et al. 1996, p. 259).

The success of a policy funded to train home-care workers providing services to American Indians is described by Robert John and his colleagues (1996). This policy directed funds to a community college in Minnesota to develop a curriculum that would train students, including American-Indian students, as home-care workers with information about aging American Indians. John and his colleagues (1996) speak to the success of this program, which has provided jobs for American Indians; supported frail, elderly American Indians so that they may remain in their own homes; and enhanced the community's knowledge about the needs of elderly American Indians.

The gerontological literature provides numerous recommendations for policy related to formal caregiving services and family caregivers. The need for policy makers and service providers to view family members as partners in the provision of services to older clients is suggested repeatedly in the literature. Family members may have been providing services before formal service providers became involved. The caregiving ethos that family caregivers and older recipients have provided will benefit from formal service provision that supports that ethos and the family's established values and traditions. Formal services that incorporate the wishes of the elderly recipient and involved family members are more likely to be successful and garner continued participation. Karen D. Pyke and Vern L. Bengston stress that "it is incumbent on researchers and policymakers to consider the ways that families organize their response to needy members" (1996, p. 390).

In an article written for practitioners providing formal care to elderly clients and their family caregivers Judy M. Zarit (1999) states, "the nature of family caregiving is so diverse that it lends itself to endless variation, and it takes practice and skill to come up with solutions that speak to the obvious demands of problems while simultaneously addressing the underlying family dynamics . . ." (p. 430). Zarit's (1999) advice to practitioners is also beneficial for policy makers: ignoring the aging-family ethos may result in disruptions of formal services at a later date. Service delivery does not occur in a vacuum, but interacts with the overt and underlying interactions and dynamics of the families served. Developing policies that attend to the idiosyncrasies of each family will allow programs and services to function more successfully.

One study of later life families caring for older members with developmental disabilities reported on focus groups with American-Indian, Hispanic/Latino-American, Korean-American, Haitian-American, African-American, and Chinese-American communities (McCallion, Janicki, and Grant-Griffin 1997). The study stressed the need to understand the older family's caregiving history and to create a partnership with family members. Margaret B. Neal, Berit Ingersoll-Dayton, and Marjorie Starrels (1997) suggest that social service programs located in the community should increase the hours in which they are available to family members and elders so that later life families can more effectively become involved with formal services in the provision of care.

It is frequently suggested that policies should provide for formal caregiving to the family caregivers themselves. For example, it has been suggested that counseling services be specifically tailored to meet the needs of caregiving daughters and sons (Mui 1995). Wives who are caregivers would benefit from policies and programs that function to enhance the ways in which the husbands receiving care and the wives providing care emotionally support one another (Wright and Aquilino 1998).

The gerontological literature suggests that older elderly clients and their families, the consumers of formal services, be educated to maximize their utilization of those services. For Hispanic elderly, a language barrier may deny access to programs available to them. The differing cultural backgrounds of Hispanic consumers and service providers may prevent successful delivery of services and, in effect, deny services to that population (Hildreth and Williams 1996). The literature suggests that culturally sensitive policies will incorporate training for both consumers (Dilworth-Anderson and Williams 1996) and formal service providers. The literature calls for policies attentive to the unique and diverse perspectives of older recipients and their families.

Costs and/or Benefits for Families

Families are involved in providing care to their elderly members. In the United States, family members provide for the majority of care for elderly individuals who live in noninstitutionalized settings (Choi and Wodarski 1996). Karen D. Pyke and Vern L. Bengtson (1996) report that family members provide more care for their older relatives than ever before in our history. Informal care provided to older individuals is a typical occurrence in the United States, and that family members incur great economic, emotional, and time-related costs.

Alun E. Joseph and Bonnie C. Hallman (1996) note that in Canada, families are decreasing in size whereas more elderly individuals are living longer. In the United States and Canada, women who have traditionally been informal caregivers are in the workforce. The benefits of formal services to female caregivers in Canada are similar to those in the United States. Caregivers of older individuals have role requirements beyond caring for an older family member. Many caregivers of older individuals are employed and have families of their own. Women in particular provide a disproportionate amount of care to families' elders. For women who have been traditionally viewed as the family caregivers the demands of children, careers, spouses, and caregiving tasks may prevent them from full participation in the roles they have chosen. Jean Pearson Scott (1996) states, "the significant amount of unpaid care women provide to their families often removes them from the paid workforce and jeopardizes their financial security in the later years" (p. 26). The benefits of formal services for family members include the provision of services which family members cannot provide themselves, a sense of shared burden, and a respite from care which is too demanding.

When an elderly relative requires services that are more extensive than family members can offer, the provision of formal services does not mean the end of informal services provided by family members. For some families, lifting an elderly family member or providing medical services is beyond their ability. When an older relative enters a nursing home, many families stay involved in caregiving activities. "A growing body of research ... suggests that responsibilities of family members continue after an elderly member has been admitted to a ltc [long-term care] facility" (Keefe and Fancey 2000).

Clearly the benefits of formal caregiving can extend to both the caregivers and to the recipients of care as well. Formal care that exists in partnership with the family and the care recipient will most likely benefit those individuals. Formal care provided without familial and recipient input and investment may be contrary to the expectations and wishes of the family and recipient, confounding rather than minimizing caregiving issues. In these situations, family members may find that the costs of care outweigh the benefits. The reality that someone outside of the family is making decisions for their loved one or that someone unrelated to the family has taken control over tasks the family wishes to carry out may be perceived as a disadvantage by family members.

A U.S. study of family members with elderly relatives in long-term care found that the staff of those facilities did not include families in decision making. The authors of the study suggest that involvement of family members be encouraged and that staff educate family members about the resident's needs. As a result, family visits can be beneficial to the family and to the elderly resident (Keefe and Fancey 2000). The manner in which formal care is provided is important in its influence on the well-being of the family and care recipient.

The Future of Formal Care

Paul S. Haggen (1998) views future changes in the aging landscape as a challenge for formal services providers. With a growing aging population and smaller families to provide care, he suggests that adult children will be "grossly unprepared to meet both personal needs and the developmental needs of their parents. This creates an opportunity for mental health professionals to assist in changes with societal implications that may enrich the lives of many generations" (p. 333).

The changes occurring in society will require more complex service provision to meet the needs of families as they age. Mental health care is just one aspect of those requirements. "Policies and programs are needed which strengthen the ability of formal service caregivers to effectively provide services and empower families and older individuals to determine the types and quality of services provided" (Brubaker 1996, p. 10).

Although the outcomes of current political discussions about changes in Medicaid and Medicare will affect all the elderly, some older populations will be influenced more than others. Elderly African Americans and Hispanic families, more than white elderly, are dependent upon formal support systems (Hildreth and Williams 1996) and federal programs such as social security, Medicare, and Medicaid. Reductions in those federal programs greatly disadvantage those populations (Dilworth-Anderson and Williams 1996). Future formal care policies will determine the well-being of both elderly recipients and their later life family members.

See also:Alzheimer's Disease; Caregiving: Informal; Chronic Illness; Dementia; Disabilities; Elders; Hospice: Later Life Families; Respite Care: Adult; Substitute Caregivers

Bibliography

baltes, p. b., and mayer, k. u. (1999). the berlin agingstudy: aging from 70 to 100. cambridge, uk: cambridge university press.

botelho, l., and thane, p. (2001). women and ageing inbritish society since 1500. harlow, uk: longman.

braddock, d. (1999). "aging and developmental disabilities: demographic and policy issues affecting american families." mental retardation (april):155–161.

brubaker, e. (1996). "families and nursing homes." invision 2010: families and aging, ed. t. h. brubaker. minneapolis, mn: national council on family relations.

choi, n. g., and wodarski, j. s. (1996). "the relationshipbetween social support and health status of elderlypeople: does social support slow down physical and functional deterioration?" social work research 20:52–63.

cicirelli, v. g. (1981). "kin relationships of childless and one-child elderly in relation to social services." journal of gerontological social work 4:19–33.

dilworth-anderson, p., and williams, s. w. (1996)."african american elderly." in vision 2010: families and aging, ed. t. h. brubaker. minneapolis, mn: national council on family relations.

diwan, s.; berger, c.; and manns, e. k. (1997). "composition of the home care service package: predictors of type, volume, and mix of services provided to poor and frail older people." gerontologist 17:169–181.

dychtwald, k. (1999). age power: how the 21st centurywill be ruled by the new world. new york: putnam.

hart, v. r.; gallagher-thompson, d; davies, h. d.;diminno, m.; and lessin, p. j. (1996). "strategies for increasing participation of ethnic minorities in alzheimer's disease diagnostic centers: a multifaceted approach in california." gerontologist 36:259–262.

hildreth, g. j., and williams, n. (1996). "older hispanicfamilies." in vision 2010: families and aging, ed. t. h. brubaker. minneapolis, mn: national council on family relations.

izuhara, m. (2000). family change and housing in post-war japanese society: the experiences of older women. aldershot, uk: ashgate.

john, r.; salvini, m. l.; dietz, t. l.; gittings; r.; and roy,l. (1996). "training in support of the american indian eldercare campaign: replication of an american indian home-care training program." educational gerontology 22:723–734.

joseph, a. e., and hallman, b. c. (1996). "caught in thetriangle: the influence of home, work and elder location on work-family balance." canadian journal on aging 15:393–412.

keefe, j., and fancey, p. (2000). "the care continues:responsibility for elderly relatives before and after admission to a long term care facility." family relations 49:235–244.

mccallion, p.; janicki, m.; and grant-griffin, l. (1997)."exploring the impact of culture and acculturation on older families caregiving for persons with developmental disabilities." family relations 46:347–357.

mui, a. c. (1995). "caring for frail elderly parents: acomparison of adult sons and daughters." gerontologist 35:86–93.

neal, m. b.; ingersoll-dayton, b.; and starrels, m. e.(1997). "gender and relationship differences in caregiving patterns and consequences among employed caregivers." gerontologist 37:804–816.

ozawa, m. n., and tseng, h. (1999). "utilization of formal services during the 10 years after retirement." journal of gerontological social work 31:3–20.

pyke, k. d., and bengston, v. l. (1996). "caring more orless: individualistic and collectivist systems of family eldercare." journal of marriage and the family 58:379–392.

scott, j. p. (1996). "women in later life." in vision 2010:families and aging, ed. t. h. brubaker. minneapolis, mn: national council on family relations.

toseland, r., and mccallion, p. (1997). "trends in caregiving intervention research." social work research 21:154–164.

uhlenberg, p. (1996). "the burden of aging: a theoreticalframework for understanding the shifting balance of caregiving and care receiving as cohorts age." gerontologist 36:761–767.

wright, d. l., and aquilino, w. s. (1998). "influence ofemotional support exchange in marriage on caregiving wives' burden and marital satisfaction." family relations 47:195–204.

zarit, j. m. (1999) "caring for the caregivers of theelderly: having fun while doing good." family relations 48:429–431.

ellie brubaker timothy h. brubaker

INFORMAL

There has been increasing awareness in both the popular and scientific literatures about the roles that families play in providing care to a relative with a chronic illness and/or a functional impairment. About three-quarters of caregivers are women who tend to provide hands-on care as compared to men who provide care management (Hooyman and Gonyea 1995). Such informal caregiving often allows ill family members to remain at home or to live in a community residence rather than be hospitalized or institutionalized. The value of such care to society has been estimated to be significant and without its provision, professional care would be needed. Although families report many positive effects of their caregiving experience, including feelings of satisfaction, effectiveness, gratification, and love (Veltman, Cameron, and Stewart 2002; Walker, Shin, and Bird 1990), caregiving can also be a source of stress for family caregivers and can result in negative health and mental health outcomes for the caregivers (Friesen 1996).

Definition of Family Caregiving

The provision of assistance and support by one family member to another is a regular and usual part of family interactions, and is in fact a normal and pervasive activity. Thus, caregiving due to chronic illness and disability represents something that, in principle, is not very different from traditional tasks and activities rendered to family members. This is especially true for women, who, across cultures, have traditionally shouldered a disproportionate amount of family caregiving responsibility (McGoldrick 1989). The difference, however, is that caregiving in chronic illness often represents an increase in care that surpasses the bounds of normal or usual care.

Caregiving in chronic illness involves a significant expenditure of time and energy over extended periods of time, involves tasks that may be unpleasant and uncomfortable, is likely to be nonsymmetrical, and is often a role that had not been anticipated by the caregiver. When these unanticipated roles are incongruent with stereotypical gender expectations (e.g., when a male caregiver must attend to a disabled relative's bathing or laundry or when a female caregiver is responsible for controlling a mentally ill relative's troublesome or dangerous behavior), the stress can be exacerbated (Tessler and Gamache 2000).

Although much of the empirical research on caregiving limits the definition of family caregivers to blood relatives, factors such as families' nationality and race/ethnicity, and the sexual orientation of the ill relative may dictate broader conceptualizations. These may include more extended kin and non-kin relationships (Tessler and Gamache 2000).

Extent of Family Caregiving

The expectation and prevalence of caregiving in families is high. As social welfare costs rise in many nations, there are increasing obligations placed on family members, primarily females, to undertake caregiving responsibilities (Barusch 1995; Olson 1994). One might argue that a caregiver is needed for every person with health-related mobility and self-care limitations that make it difficult to take care of personal needs, such as dressing, bathing, and moving around the home. Current estimates indicate that 4 percent of the noninstitutionalized U.S. population under the age of fifty-five meet these criteria. Over the age of fifty-five, the proportion of persons with mobility or self-care limitations, or both, increases dramatically; fully half of the population falls into this category after the age eight-five (U.S. Bureau of the Census 1990). If it is assumed that each of these individuals requires a minimum of one caregiver, such an estimate would yield over 15 million caregivers in the United States alone. Added to this number would be persons with, by and large, no mobility problems and who are able to perform most self-care tasks, but who require vigilance and supervision, such as adults with severe and persistent mental illness. Indeed, a recent national survey of caregivers reported that there were 22.4 million households meeting broad criteria for the presence of a caregiver in the past twelve months. Of course, not all persons who need assistance from family caregivers actually receive this help for a variety of reasons, including a lack of family members or unwillingness or inability of family members to provide care.

The provision of care by family members to other family members who become dependent due to physical and/or mental effects of chronic illness is not a new phenomenon. In fact, families have always provided care to their dependent family members (Lefley 2001; Olson 1994). However, there is now growing recognition among service providers and researchers that family caregiving will become more significant in the future because of demographic, economic, and social changes in the late twentieth century that are anticipated to continue into the next century.

A number of important trends are likely to shape the future of informal caregiving. Life expectancy and the aging of the population have increased dramatically during this century with the world's population aging at a fast rate, especially in developing countries. A shift in the epidemiology of disease from acute to chronic diseases and also a decrease in accidental deaths in developed countries has resulted in an increase in the number of persons in the population with functional activity and mobility limitations. The number of multigenerational families has increased, resulting in a growing number of elderly caregivers as well as increased numbers in the sandwich generation. With greater numbers of women, the traditional caregivers, in the labor force in the United States and in developed countries, the combination of working outside the home and providing care for dependent family members has become increasingly more difficult. The search for alternatives to institutional care due to financial considerations and efforts to reduce unnecessary institutionalization in the United States and in other countries have led to more community-based treatment options and therefore have placed more demands on family caregivers. Increases in the divorce rate have weakened caregiving ties. Changes in health care reimbursement and medical technology in developed countries have shifted the burden of post-acute care to family caregivers. Increased geographic mobility in the United States and the movement of youth from rural to urban areas in developing countries has distanced adult children from chronically ill siblings and/or parents (Barusch 1995; Levkoff, Macarthur, and Bucknall 1995; Olson 1994).

Nature of Family Caregiving

The roles and functions of family caregivers vary by type and stage of illness and include both direct and indirect activities. Direct activities can include provision of personal care tasks, such as helping with bathing, grooming, dressing, or toileting; health care tasks such as catheter care, giving injections, or monitoring medications; and checking and monitoring tasks, such as continuous supervision, regular checking, and telephone monitoring. Indirect tasks include care management, such as locating services, coordinating service use, monitoring services, or advocacy; and households tasks, such as cooking, cleaning, shopping, money management, and transportation of family members to medical appointments and day care programs (Noelker and Bass 1994). The intensity with which some or all of these caregiving activities are performed varies widely; some caregivers have only limited types of involvement for a few hours per week whereas other caregivers might provide more than forty hours a week of care and be on call twenty-four hours per day. There are, for example, significant differences in caregiving responsibilities and tasks for caregivers of elderly persons as compared to caregivers of persons with mental illness, with the former involving more hands-on care, in other words, personal care and households tasks and the latter potentially carrying social stigma and pervasive worry about the relative's safety.

Caregiver Burden and Effects of Caregiving

Although the literature on caregiver burden tends to highlight the negative effects on persons in the caregiver role, numerous studies have investigated the positive impact of tending to an ill relative's needs. Findings from a Swedish study, for example, suggest that satisfaction from caregiving derives from varied sources and that most caregivers do experience some kind of benefit (Lundh 1999). Some families of adults with severe mental illness report instrumental as well as psychological reward, notably when the care recipient is able to reciprocate with both concrete and emotional contributions to the family (Tessler and Gamache 2000). Elderly spousal caregivers of persons with Alzheimer's disease studied in a cross-national study were found to derive satisfaction from doing their job well, experiencing affection and companionship from the care recipient, and fulfilling a perceived dutiful role (Murray et al 1999).

Nevertheless, many families report caregiving to be an emotional, physical, and at times, financial burden. However, the caregiving literature contains little consensus as to the conceptualization and measurement of caregiver burden, with criteria for defining burden ranging from care-recipient behaviors to caregiver tasks to general caregiver wellbeing. Although the definition of what constitutes caregiving and the caregiving experience varies widely among studies (Malone, Beach, and Zarit 1991), it is generally agreed that a conceptualization of caregiver burden contains both objective and subjective dimensions.

Objective burden can be defined as the time and effort required for one person to attend to the needs of another. Thus, it might include the amount of time spent in caregiving, the type of caregiving services provided, and financial resources expended on behalf of the dependent elder. Subjective burden refers to perceived beliefs and feelings by the caregiver about the performance of caregiver tasks and assumptions of the caregiver role. Definitions of subjective burden are more varied than those of objective burden and studies have included such elements as the extent to which caregiving causes strain with regard to work, finances, well-being, family relationships and social life, or emotional distress associated with caregiving. Some researchers have suggested that specific burdens are linked to specific types of impairment (Rolland 1994); caregivers of persons with mental illness and Alzheimer's disease report that disruptive or bizarre behaviors are especially troubling. In addition, caregivers' perceptions that ill relatives are increasingly dependent and that other family members are not contributing assistance and support may increase the burden.

Significant effects of family caregiving include: restrictions on social and leisure activities; infringement upon privacy; disruption of household and work routines; conflicting multiple role demands, and disruption of family roles and relationships. Because of the emotional, physical, and at times, financial burden reported by many family caregivers, these effects may be salient in the decision to institutionalize an elderly parent. Data indicate that almost one-third of caregivers do not receive any assistance in their caregiving functions from other informal or formal providers; further, family caregivers are more likely to have lower income and lower self-reported health than the population at large. Research shows that the burden of caring for a relative with severe mental illness or Alzheimer's disease can contribute to caregivers' depressive symptomatology and that, in turn, as caregivers are less able to provide support for their ill relatives, their relatives' well-being, and ability to remain in the community suffer (Song, Biegel, and Milligan 1997).

Factors Affecting Caregiver Burden

When the relationships between caregiver burden and a range of caregiver and care-recipient demographic, socioeconomic, and illness characteristics are examined, the results across studies are consistent for some variables and inconsistent for others. Generally, findings concerning the role of objective stressors, such as illness-related variables, are more consistent than findings concerning contextual variables such as caregiver demographic and socioeconomic characteristics and social support.

A number of variables pertaining to the nature of chronic illness affect the type and level of burden that will be experienced by family members. John Rolland's (1994) psychosocial typology of chronic illness gauges the influence of illness on caregivers using four criteria:

1. Onset, in other words, whether the illness begins gradually, as in Alzheimer's and Parkinson's diseases, or suddenly, as in stroke and myocardial infarction;
2. Disease course, of which there are three types—progressive, such as in Alzheimer's disease and cancer, with increased severity and continual adaptations over time; constant, as in stroke, where an initial acute event stabilizes and persists over time; or relapsing/episodic, as in severe and persistent mental illness and certain cancers, where periods of remission from acute illness provide relief for caregivers only to be followed by repeated, often unpredictable, acute exacerbations;
3. Outcome, in other words, whether the illness diagnosis carries a prognosis of fatality, or shortening of the lifespan; and
4. Incapacitation, in other words, whether the ill family member experiences short- or long-term cognitive, movement, or speech impairment, social impairment such as stigma, or incapacitating effects of medical intervention, for example, chemotherapy, as well as the degree of that impairment or incapacitation.

Additional variables pertaining to the illness that affect family caregivers are: the stage of illness (i.e., onset, long haul, end stage, etc.), and the duration of illness (i.e., lifetime vs. old age). There is also a strong relationship between care-recipient behaviors and caregiver burden. Care-recipient behaviors that are known to be especially burdensome include: incontinence, severe functional impairments, hallucinations, suspiciousness, agitation, wandering, catastrophic emotional reactions, disruptiveness at night, behaviors dangerous to the patient, and the need for constant supervision. Because many of these characteristics are common among dementia patients, it is believed that caregiving for an elderly person with dementia is more difficult than providing care to an elderly person with physical rather than mental limitations (Ory et al. 1999).

The structure of the family providing care for an ill relative (e.g., child[ren] of divorce providing care for aging, chronically ill parents in geographically disparate sites) as well as the life stage of the family (e.g., elderly parent[s] caring for an adult child with severe mental illness, or a mid-life mother of teenaged children caring for her husband, former family breadwinner, incapacitated by multiple sclerosis) can present different challenges to caregivers (Pot, Deeg, and Knipscheer 2001). Added to the interface of illness type and stage and family life stage and functioning, caregivers' interactions with health care providers and the health care system can have an important impact on their perceptions of caregiver distress (Friesen and Huff 1996). Research studies have shown that for family caregivers of persons with severe and persistent mental illness, dissatisfaction with their interactions with mental health providers (i.e., they perceive the interactions to be inadequate, exclusionary, or negative) are associated with higher levels of caregiver burden and depressive symptomatology (Song, Biegel, and Milligan 1997).

Although the literature shows a moderate relationship between the level of patient disability and psychological distress of the caregiver, there is considerable variability in caregiver outcomes. Such outcomes are thought to be mediated and/or moderated by a variety of factors including the viability of relationships between caregiver and ill relative that predate the illness, as well as the quality of individuals'—both caregivers' and care recipients'—pre-existing emotional resources. The availability of economic and social supports and a host of individual factors, such as gender, personality attributes (optimism, self-esteem, self-mastery), caregiving beliefs and values (guilt, stigma), and coping strategies used, have been found to be significant. Reliance on religious beliefs and faith has been shown to be an important coping strategy, particularly among African-American caregivers (Adler 2001; Songwathana 2001; Yates, Tennstedt, and Chang 1999).

Researchers have further extended basic stress-coping models to include examination of secondary stressors, such as the number and variety of the caregivers' other roles and role conflict engendered by caregiving demands, and have applied a number of additional theoretical perspectives borrowed from social and clinical psychology, sociology, and the health and biological sciences to help understand specific aspects of the caregiving situation (Pearlin, Aneshensel, and LeBlanc 1997).

Female caregivers show higher levels of caregiver burden than males (Miller and Cafasso 1992). Spousal caregivers have higher burden levels than nonspousal caregivers, but this finding may be confounded with age, since spousal caregivers are more likely to be elderly. Eileen Malone Beach and Steve Zarit (1991) believe that some of the inconsistencies in the effects of caregiver characteristics on caregiver burden are due to a failure to disentangle caregiver gender, age, and relationship, which can interact to cause confounding effects.

This complexity is compounded if ethnic identity is added to this mix. For example, data indicate that African-American caregivers do not have the same levels of stress and depressive symptomatology as white caregivers, that African-American and Latino/a caregivers are more likely to provide more challenging personal care and experience greater financial hardship when compared to Asians or whites, and that culture and ethnicity affect access to and use of professional services, with caregivers from minority groups often indicating problems in these areas (Aranda and Knight 1997; Martin 2000; Song, Biegel, and Milligan 1997).

As stated previously, caregiving can have positive effects for the caregiver as well (Beach et al. 2000; Bulger, Wandersman, and Goldman 1993). For example, Steve Beach and his colleagues found that elderly spousal caregivers demonstrated improved mental and physical health as caregiving activity increased. Adult children who are caregivers to elderly parents report that they find caregiving gratifying because they can "pay back" the care that their parents provided to them when they were young. In addition, caregivers report that being a caregiver helps them gain inner strength or learn new skills. Michael Bulger, Abraham Wandersman, and Charles Goldman (1993) found that parents caring for adult children with schizophrenia report that the caregiving experiences aided their personal growth and increased their understanding of family problems.

Policy and Program Support for Family Caregivers

A number of countries provide tax relief and/or direct payments to family members who care for family members with disabilities (Barusch 1995). In addition, a range of programmatic interventions have been developed to address the needs of families with a member who has a chronic illness and/or a functional disability. The availability of particular interventions varies greatly by country and by location within a given country (i.e., urban vs. rural areas). However, even where interventions are offered, caregivers' ethnicity and socioeconomic status can act as barriers to access and utilization of services (Biegel, Johnsen, and Shafran 1997; Bruce and Paterson 2000; Olson 1994). Interventions for families can be conceptualized as falling into the following categories:

Support groups. A group-based intervention intended to provide families and family caregivers with social and psychological support, and in most instances with varying amounts of information about a particular chronic illness, as well as suggestions for coping with that illness. Support groups may be professionally led (usually time-limited) or peer led (usually open-ended and ongoing). The former are often conducted in facilities such as hospitals or clinics, whereas the latter are typically held in community meeting places such as churches, libraries, or social centers. Although support groups can be found in many countries in addition to the United States, they are more likely to be found in developed than in developing countries.

Education. An individual- or group-based intervention for families of persons with chronic illness, usually of short duration (less than six months) focusing on provision of information about the chronic illness and its management, including advice for family members. This intervention may be led by either mental health professionals or by trained, lay group leaders. A newer implementation of educational support is computer-based and may include websites, chat rooms, listservs, and e-mail services. This approach is particularly useful for caregivers living with their ill family members who have may not have back-up care for their family member that would enable them to participate in an agency-based intervention program. This latter type of educational support, which requires access to advanced technology, is less widespread than other types of educational interventions.

Psychoeducation. Psychoeducational interventions have, as a principal component, a focus on changing family coping behaviors and attitudes. In addition to the presentation of information, they typically include skills training for families in communication and problem-solving. Although the designated target of change is the family, the ultimate impact of psychoeducation is on the patient's symptoms and functioning. Psychoeducational interventions are provided in both multi-family and single family formats and are most likely to be found in developed rather than developing countries.

Counseling and family support. Counseling, therapy, and/or other direct family support services are provided to individual family units or their members by professionals. This category consists of a wide variety of services, the most prominent of which are family therapy, individual supportive therapy, family consultation, and case management. Counseling and family support services are often provided on an open-ended, as-needed basis, with the option of becoming long term. Such services are most likely to be founded in developed countries.

Respite and day care services. These are services that although designed for the family member with chronic illness and/or disability, are offered in part to give the family caregiver a break from caregiver responsibilities. Services offered are both in-home and in-agency institutional settings for short periods of time ranging from a few hours per day to a week or two while the caregiver may be out of town. These services are being provided in both developed and developing countries (Levkoff, Macarthur, and Bucknall 1995).

There is usually some overlap among intervention categories, particularly between education and support groups. For example, most support groups do contain an education component, although generally informal in nature, and many education groups attempt to provide social support for their participants.

There have been several studies of the outcomes of interventions for family caregivers of particular chronic illnesses (Biegel, Robinson, and Kennedy 2000; Kennet, Burgio, and Schulz 2000). In general, interventions that are comprehensive, intensive, long-term, and individually tailored are likely to be more effective than those that are not (Mittleman et al. 1996).

Despite the availability of an increasing range of intervention programs for family caregivers of persons with a variety of chronic illnesses, significant gaps in services exist. There is considerable unevenness in the degree to which interventions for family caregivers of particular chronic illnesses have been implemented. For example, even those interventions for family caregivers of persons with serious mental illness that have demonstrated effectiveness have not been widely adopted as standard practice by most mental health systems in the United States (Lehman et al. 1998).

Conclusion

Although the activity of tending to the needs of an ill relative by another member of the family is surely as old as the institution of the family itself, many factors throughout history have influenced the nature, extent, and cost, as well as the inevitability of such activity. The surge in awareness and study of informal family care to persons with chronic illnesses and impairments points to the recognition that family caregivers provide services to their relatives that are beyond the capacity of the formal system of care, both structurally and financially. Recent research has also highlighted the need to pay attention to the well-being of these caregivers so that their ability to continue to provide support for their ill family members is not compromised. It appears that the necessity for ongoing attention to and inquiries about the many factors that affect the viability of family caregiving will increase as the social, political, economic, and cultural currents of world society ebb and flow.

See also:Alzheimer's Disease; Caregiving: Formal; Chronic Illness; Dementia; Disabilities; Division of Labor; Elder Abuse; Elders; Filial Responsibility; Health and Families; Hospice; Housework; Respite Care: Adult; Stress; Substitute Caregivers

Bibliography

adler, l. l. (2001). "women and gender roles." in cross-cultural topics in psychology, ed. l. l. adler and u. p. gielen. westport, ct: praeger.

aranda, m. p., and knight, b. g. (1997). "the influence of ethnicity and culture on the caregiver stress and coping process: a sociocultural review and analysis." gerontologist 37(3):342–354.

barusch, a. s. (1995). "programming for family care ofelderly dependents: mandates, incentives, and service rationing." social work 40(3):315–322.

beach, s. r.; schulz, r.; yee, j. l.; and jackson, s. (2000)."negative and positive health effects of caring for a disabled spouse: longitudinal findings from the caregiver health effects study." psychology and aging 15(2):259–271.

biegel, d. e.; johnsen, j. a.; and shafran, r. (1997)."overcoming barriers faced by african-american families with a family member with mental illness." family relations 46(2):163–178.

biegel, d. e.; robinson, e. m.; and kennedy, m. (2000)."a review of empirical studies of interventions for families of persons with mental illness." in research in community mental health, vol. 11, ed. j. morrisey. greenwich, ct: jai press.

bruce, d. g., and patterson, a. (2000). "barriers to community support for the dementia carer: a qualitative study." international journal of geriatric psychiatry 15(5):451–457.

bulger, m. w.; wandersman, a.; and goldman, c. r.(1993). "burdens and gratifications of caregiving: appraisal of parental care of adults with schizophrenia." american journal of orthopsychiatry 63(2):255–265.

friesen, b. j. (1996). "family support in child and adultmental health." in redefining family support: innovations in public-private partnerships, ed. g. h. s. singer, l. e. powers, and a. l. olson. baltimore, md: paul brookes.

friesen, b. j., and huff, b. (1996). "family perspectives onsystems of care." in children's mental health: creating systems of care in a changing society, ed. b. a. stroul. baltimore, md: paul brookes.

hooyman, n. r., and gonyea, j. (1995). feminist perspectives on family care. newbury park, ca: sage.

kennet, j.; burgio, l.; and schulz, r. "interventions forin-home caregivers: a review of research 1990 to present." in handbook of dementia caregiving: evidence-based interventions for family caregivers, ed. r. schulz. newbury park, ca: sage.

lefley, h. (2001). "mental health treatment and servicedelivery in cross-cultural perspective." in cross-cultural topics in psychology, ed. l. l. adler and u. p. gielen. westport, ct: praeger.

lehman, a. f.; steinwachs, d. m.; dixon, l. b.; goldman,h. h.; osher, f.; postrado, l.; scott, j. e.; thompson, j. w.; fahey, m.; fischer, p.; kasper, j. a.; lyles, a.; skinner, e. a.; buchanan, r.; carpenter, w. t., jr.; levine, j.; mcglynn, e. a.; rosenheck, r.; and zito, j. (1998). "translating research into practice: the schizophrenia patient outcomes research team (port) treatment recommendations." schizophrenia bulletin 24(1):1–10.

levkoff, s. e.; macarthur, i. w.; and bucknall, j. (1995)."elderly mental health in the developing world." social science and medicine 41(7):983–1003.

lundh, u. (1999). "family carers: sources of satisfaction among swedish carers." british journal of nursing 8(10):647–652.

malone beach, e. e.; and zarit, s. h. (1991). "current research issues in caregiving to the elderly." international journal of aging and human development 32(2):103–114.

martin, c. d. (2000). "more than the work: race andgender differences in caregiving burden." journal of family issues 21(8):986–1005.

mcgoldrick, m. (1989). "women and the family lifecycle." in the changing family life cycle: a framework for family therapy, 2nd edition, ed. b. carter and m. mcgoldrick. boston: allyn and bacon.

miller, b., and cafasso, l. (1992). "gender differences incaregiving: fact or artifact?" gerontologist 32:498–507.

mittleman, m. s.; ferris, s. h.; shulman, e.; steinberg, g.; and levin, b. (1996). "a family intervention to delay nursing home placement of patients with alzheimer's disease." journal of the american medical association 276:1725–1731.

murray, j.; scheider, j.; banerjee, s.; and mann, a. (1999)."eurocare: a cross-national study of co-resident spouse carers for people with alzheimer's disease." international journal of geriatric psychiatry 14(8):662–667.

noelker, l. s., and bass, d. m. (1994). "relationships between the frail elderly's informal and formal helpers." in family caregiving across the lifespan, ed. e. kahana, d. e. biegel, and m. l. wykle. family caregiver applications series, vol. 4. newbury park, ca: sage.

olson, l. k., ed. (1994). the graying of the world: whowill care for the frail elderly. new york: haworth press.

ory, m. g.; hoffman iii, r. r.; yee, j. l.; tennstedt, s.; and schultz, r. (1999). "prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers." the gerontologist, 39:117–185.

pearlin, l. i.; aneshensel, c. s.; and leblanc, a. j. (1997)."the forms and mechanisms of stress proliferation: the case of aids caregivers." journal of health and social behavior 38(3):223–236.

pot, a. m.; deeg, d. j. h.; and knipscheer, c. p. m. (2001)."institutionalization of demented elderly: the role of caregiver characteristics." international journal of geriatric psychiatry 16(3):273–280.

rolland, j. s. (1994). families, illness and disability: anintegrated treatment model. new york: basic books.

song, l.; biegel, d. e.; and milligan, e. (1997). "predictors of depressive symptomatology among lower social class caregivers of persons with chronic mental illness." community mental health journal 33(4):269–286.

songwathana, p. (2001). "women and aids caregiving:women's work?" health care for women international 22(3):263–279.

tessler, r., and gamache, g. (2000). family experiences with mental illness. westport, ct: auburn house.

u.s. bureau of the census. (1990). the need for personalassistance with everyday activities: recipients andcaregivers. current populations reports: household economic studies (series p-70, no. 19). washington, dc: government printing office.

veltman, a.; cameron, j.; and stewart, d. e. (2002). "theexperience of providing care to relatives with chronic mental illness." journal of nervous and mental disease 190(2):108–114.

walker, a. j.; shin, h.; and bird, d. n. (1990). "perceptions of relationship change and caregiver satisfaction." family relations 39(2):147–152.

yates, m. e.; tennstedt, s.; and chang, b. h. (1999). "contributors to and mediators of psychological well-being for informal caregivers." psychological and social sciences 54b(1):p12–p22.

david e. biegel barbara l. wieder