Blackburn J.A., Dulmus C.N. (Editors). Handbook of gerontology: evidence-based approaches to theory, practice, and policy

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include activities that use dialogue among group members to normalize experi-

ences, give mutual support, and increase connections among the group members

(Acton & Kang, 2001). These educational formats usually include lectures, group

discussions, and written materials and are always led by a trained leader. Support

may be part of a psychoeducational group, but it is secondary to the education

content (Sorensen et al., 2002). Psychoeducational programs are more apt to focus

on issues such as anger, depression, grief, and loss (Coon, Thompson, Steffen,

Sorocco, & Gallagher-Thompson, 2003), as well as cognitive reframing (Depp

et al., 2003) and coping (Gallagher-Thompson et al., 2000).

Because caregiver educational programs may have very different foci and goals,

it is important for social workers to be aware of the content of programs to which

they refer caregivers. Education programs not only vary in content, but they can be

delivered in several formats. At one extreme are written, visual, and audio materi-

als that are generally made available through one-on-one contact. At the other ex-

treme are structured group programs led by a trained professional that follow a

prescribed curriculum (Acton & Kang, 2001). Many educational programs groups

also incorporate a support component. For example, through the discussion of a

topic about dementia and the disease process, participants begin to share their ex-

periences and strategies for coping with the challenges of caregiving. It is through

discussion of the topic that caregivers come to identify with others and form

informal support groups. Educational groups have been shown to effectively in-

crease caregiver knowledge and understanding of disease processes (Burgener,

Bakas, Murray, Dunahee, & Tossey, 1998) and problem-solving and coping strate-

gies related to the care-giving experience (Acton & Kang, 2001; Harding & Higgin-

son, 2003; Toseland et al., 2001).

UPPORT

ROUPS

The goal of support groups is to allow caregivers time to come together and re-

ceive mutual support from other caregivers (Sorensen et al., 2002). Most often,

support groups are informal, unstructured, and without specific content. Like

educational programs support groups vary widely in their structure, format, and

content (Toseland et al., 2001; Van den Heuvel et al., 2002). Caregivers meet in a

variety of places: homes of caregivers (Bass, McClendon, Brennan, & McCarthy,

1998), churches, agency buildings, via telephone (Brown et al., 1999), and even via

computers (Czaja & Rubert, 2002). The overarching goal of support groups is to

provide a forum for caregivers to share their care-giving experiences (Acton &

Kang, 2001). The benefits of support groups include the opportunity for care-

givers to have their experiences normalized (Brown et al., 1999; Cook & Heller,

1999; O’Connor, 2002) and to receive encouragement and validation for their ef-

forts (Diehl, Mayer, Foerstl, & Kurz, 2003; Quayhagen et al., 2000). Many support

groups also have an educational element that can provide caregivers with impor-

tant information about the progression of disease, the availability of support ser-

vices, and resources and strategies for coping. In some groups this information

may be shared informally among participants; in other groups, speakers or sup-

port group leaders provide this type of information (Diehl et al., 2003; Mahoney,

Tarlow, Jones, Tennstedt, & Kasten, 2001).

Although the impact of informal support groups has not been widely as-

sessed, it is generally believed that these informal networks help to improve the

Family Caregiving 437

quality of life for many caregivers, and there is some evidence that support

group interventions have positive impacts on caregiver well-being and coping

skills (Sorensen et al., 2002).

OUNSELING

Counseling interventions are designed to identify specific individual needs of the

caregiver and to facilitate change by working with caregivers to increase their

understanding of problematic behaviors and their reactions to the care-giving ex-

perience. Counseling sessions are conducted by trained professionals; they differ

from educational interventions in that counselors do not provide standardized

information to increase the caregivers’ skill in caregiving. Rather, counselors

focus on helping caregivers to understand and resolve their reactions to the care-

giving process (Acton & Kang, 2001). Counseling can be done through group

meetings or through individual meetings with family members; the latter are tai-

lored to address the caregiver’s individual needs and problems.

ARE

ANAGEMENT

In addition to direct care services, most programs that serve families offer assis-

tance through care management services. Care managers assist families by coor-

dinating services and, in many situations, help arrange for the delivery of these

services. Often, care management serves as a first point of entry for families who

make their way into a system that is complex and often difficult to navigate. The

majority of care management is performed by social workers, who provide a

range of services: screening, assessment, planning, linking, monitoring, advo-

cacy, and evaluation (Austin & McClelland, 1996). The overarching goal of care

management is to link the family with services.

Despite the fact that the primary responsibility of care managers is to serve as

the link between caregivers and services, care management has recently become

viewed as a discrete service that can sufficiently address the individual needs of

caregivers. This assumption is problematic given the needs of many family care-

givers for direct services and the limited training and capacity of care managers

to provide caregivers with appropriate education or counseling. If the primary

goal of care management is to link caregivers to appropriate services, then suc-

cess with this process will depend on the implementation of an appropriate as-

sessment process.

AREGIVER

SSESSMENT

With the recognition that family members who provide care to persons with

chronic or disabling conditions are themselves at risk comes a mandate for assess-

ing caregivers’ needs. If the burdens and health risks that stem from the strains of

caregiving are to be adequately addressed it is important for social workers who

serve this group to be aware of the types and levels of stress that are being expe-

rienced as well as the care environment. Over the past 2 years the value of a sys-

tematic assessment of family caregiver needs has gained attention and moved to

the public policy agenda (Maslow, Levine, & Reinhard, 2005). A major conclusion

stemming from a recent National Censuses Development Conference sponsored

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by the Family Caregiver Alliance (2006a, 2006b) concerns the current gap be-

tween research and practice. Despite considerable consensus that social workers

need to understand the role of caregiving and its multiple stressors when devel-

oping a care plan for a care recipient, most federal and state programs that offer

home- and community-based services do not include a formal assessment process

for the caregiver.

A central principle to emerge from the consensus conference is that caregiver

assessment should embrace a family-centered perspective, inclusive of the needs

and preferences of both the care recipient and the family caregiver. Although the

consensus conference contributed to a growing public call for the inclusion of

caregiver assessment protocols, the exact nature of this process and of the tools to

be used remains a point of discussion. Seven domains were identified in the final

consensus report as essential for inclusion in any assessment: (1) the care-giving

context, which includes the physical and social environments; (2) caregivers’ per-

ceptions of health and functional status of the care recipient; (3) caregiver values

and preference; (4) measures of well-being (e.g., self-rated health and depres-

sion); (5) consequences of caregiving, including measures of caregiver strain and

perceived benefits; (6) caregivers’ skills, knowledge, and ability to provide care;

and (7) the availability of formal and informal supports (Family Caregiver Al-

liance, 2006b).

EFFECTIVE TARGETING OF SERVICES

Despite a general belief among service providers that caregiver support services

are valuable, provider organizations and social workers continue to wrestle with

two issues as they attempt to meet the needs of caregivers. First, a large number

of family caregivers who are judged to be in need of support services either do

not use them at all or use them too late to benefit from them. Second, results from

intervention studies have generally failed to provide clear guidance to practition-

ers (Pillemer, Suitor, & Wethington, 2003).

NSIGHTS INTO

ONUSE OF

ERVICES

A small number of studies that have examined patterns of respite use provide

some important insights into the reasons that caregivers fail to use services (Cox,

1997; Kosloski & Montgomery, 1994; Kosloski et al., 2001). Nonusers comprise two

groups of people. There is one group that is simply unaware of the availability of

a service. This group can be reached simply by improvement and expansion of

outreach activities. The second group of nonusers consists of persons who do not

perceive themselves as needing a specific service (Cox, 1997). A caregiver’s per-

ception of need is subjective, and many caregivers make a decision about need

based on factors other than the functional level or care needs of the care recipient.

Two factors that have been linked to perceived need are high levels of caregiver

stress and the absence of an alternative caregiver in an individual’s informal net-

work of family and friends (Kosloski et al., 2001). The perception of need can also

be influenced by culturally based attitudes and beliefs about personal obligations

to provide care. For example, caregivers have reported not using respite due to

guilt or the sense of failure that they incur when they abdicate care tasks to oth-

Family Caregiving 439

ers. Others have reported a reluctance to leave the elder with a stranger, believing

that a respite program may be too upsetting for the relative (Cox, 1997; Hooyman

& Gonyea, 1995; Kosloski et al., 2001). These reasons reflect normative expecta-

tions and cultural beliefs about familial responsibility. Several studies have noted

a strong sense of filial responsibility among African Americans, Asian Ameri-

cans, Latinos, and other minority groups that includes the responsibility to en-

gage in direct care (Clark & Huttlinger, 1998; Cox, 1993; Delgado & Tennstedt,

1997b; Henderson & Gutierrez-Mayka, 1992; Ishii-Kuntz, 1997). These beliefs

about family responsibility may prevent some caregivers from perceiving them-

selves to be in need of services (Kosloski, Montgomery, & Karner, 1999).

Variations among ethnic groups in family structures and the availability of al-

ternative caregivers may also contribute to differences in patterns of service use.

A number of studies have found that minority groups draw on a wider circle of

helpers than do Caucasians (Forester, Young, & Langhorne, 1999; Ishii-Kuntz,

1997; Laditka & Laditka, 2001). Both Latino and African American caregivers ob-

tain help from members of the extended family. Fictive kin serve as a source of in-

formal support for African Americans, who, like the Latino population, tend to

rely more on informal services (i.e., family, friends, and volunteers) and are less

likely to use formal services, which they often perceive as less accessible. These

findings suggest that race and culture play a significant role in how minority

groups view the utility of services and consequently their judgment of need for

respite services and ultimately their use of services.

In addition to personal beliefs, characteristics of the services or service deliv-

ery may influence caregiver’s perception of need. A number of studies have noted

that nonuse of services is linked to inappropriate targeting of services to care-

givers’ needs (Horowitz, 1985; Montgomery & Kosloski, 2000) or barriers created

by providers in the manner in which services are delivered. The costs for services,

lack of transportation, cumbersome assessment process, and eligibility criteria

have all been identified as barriers that may influence caregivers’ perceptions of

need for services (Caserta, 1987; Gwyther & Ballard, 1990; Montgomery, Marquis,

Schaefer, & Kosloski, 2002; Montoro-Rodriguez, Kosloski, & Montgomery, 2003).

HALLENGES TO THE

FFECTIVE

ARGETING OF

ERVICES

Currently, there is little information available to guide care managers or service

providers as they make decisions about the effective allocation and delivery of

services (Knight et al., 1993). A large majority of intervention studies have failed

to support a statistically significant link between specific caregiver support ser-

vices and relief of caregiver stress (Acton & Kang, 2001; Pillemer et al., 2003;

Sorensen et al., 2002; Yin, Zhou, & Bashford, 2002) or have identified effect sizes

that are not clinically significant (Knight et al., 1993; Schulz et al., 2002; Sorensen

et al., 2002). The most promising findings regarding the positive impact of sup-

port services have emerged from intervention studies that have included multiple

and a relatively comprehensive set of support services (Acton & Kang, 2001; Bur-

gio, Solano, Fisher, Stevens, & Gallagher-Thompson, 2003; Mittelman, 2000; Mit-

telman et al., 1993; Schulz, Gallagher-Thompson, Haley, & Czaja, 2000). Although

informative and important, this finding does not provide critical information for

targeting specific services in a service package (Bourgeois et al., 1996; Burgio

et al., 2003; Pillemer et al., 2003). The need to understand more about which

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services are most expedient for serving different types of caregivers at different

points in their care-giving careers remains a challenge for service providers

(Coon, Gallagher-Thompson, & Thompson, 2003; Knight et al., 1993; Sorensen

et al., 2002). This challenge has been the focus of several studies conducted by

Montgomery and Kosloski (Kosloski, Schaefer, Allwardt, Montgomery, & Karner,

2002; Montgomery, 2002) and has led to the development of the caregiver identity

theory, which has important implications for targeting of support services.

CAREGIVER IDENTITY THEORY AND

PRACTICE IMPLICATIONS

The caregiver identity theory is an extension of the caregiver marker framework,

which was advanced as a tool useful for guiding the design and delivery of sup-

port services (Montgomery & Kosloski, 2000, 2001, in press). The caregiver iden-

tity theory also builds on research (Sherrell, Buckwalter, & Morhardt, 2001) that

indicates that caregivers will not use services that they do not “perceive as

needed or useful” (Montgomery & Kosloski, 2001, p. 13). The underlying premise

of the model is that caregiving is a dynamic change process. This change process

includes changes in care activities, changes in the relationship between the care-

giver and the care recipient, and changes in the caregiver’s identity.

DENTITY

HANGE

According to the theory, the care-giving role emerges out of an existing role rela-

tionship, usually a familial role such as daughter, wife, or husband. As the needs

of the care recipient increase in quantity and intensity over time, the initial fa-

milial relationship gives way to a relationship characterized by caregiving and

corresponding changes in the caregiver’s role and identity in relation to the care

recipient. This identity change occurs because the care tasks that are required to

maintain the health of the care recipient become inconsistent with the expecta-

tions associated with the caregiver’s initial familial role. Most often this shift in

identity is necessitated by a significant increase in the level of dependency of the

care recipient. Other significant changes in the care context might include an in-

crease or decrease in the availability of informal or formal supports or a change

in living arrangement.

For most caregivers of persons with chronic conditions or dementia, the

change in role identity is a slow and insidious process that occurs in stops and

starts. Initially, the care needs of the elder may be relatively small and the corre-

sponding care tasks may represent only minimal extensions of the familial role

relationship. For example, a daughter may quite easily and without experiencing

stress assist her mother who has some memory impairment with paying bills,

shopping, or transportation to appointments. As the disease progresses, the

needs of the mother, and resultant demands placed on the daughter, increase.

The daughter’s activities gradually increase in intensity and become inconsistent

with the norms that she has internalized with respect to her role as a daughter.

Consequently the daughter begins to assume a “caregiver” identity. Thus, over

time, the care-giving activities transform the initial mother-daughter relation-

ship into a care-giving relationship.

Family Caregiving 441

Figure 16.1 Caregiver Identities Mapped to Phases of Care-Giving Career.

Phase I

A B

Phase II

B C

Phase III

C D

Phase IV

D E

Phase V

Spouse

Caregiver

Spouse

Caregiver

Spouse

Caregiver

Spouse

Caregiver

Montgomery and Kosloski (in press) have identified five phases of the care-

giving career that are linked to changes in the care recipient’s need for assis-

tance. Figure 16.1 illustrates the phases. Phase I of the career is the period of role

onset. This period begins at the point that a caregiver assists the care recipient in

a manner that is not usually a part of the caregiver’s familial (e.g., daughter or

spouse) role. In this first phase of the care process, caregivers are rarely aware of

their care-giving role identity. Phase II of the care-giving career begins when the

caregiver acknowledges that his or her care activities are beyond the normal

scope of the initial familial role. This is the point of self-identification as a care-

giver (Montgomery & Kosloski, 2000). During this phase of the career, a caregiver

is still maintaining his or her primary familial identity in relation to the care re-

cipient, but acknowledges the presence of the caregiver role. Phase III begins

when the care needs of the care recipient increase in quantity and intensity to a

level that requires assistance that is substantially beyond the normal boundaries

of the initial familial relationship. At this point, the caregiver is often torn be-

tween maintaining his or her initial identity as a relative and assuming the role of

caregiver as a primary identity in relation to the care recipient. Caregivers who

opt to continue with their care-giving tasks through Phase III usually increase

the intensity of care they provide over time to such an extent that the caregiver

role comes to dominate the dyadic relationship. Eventually, the caregiver consid-

ers placing the care recipient in some other setting such as assisted living or a

nursing home. At that point in time the caregiver moves into Phase IV. For many

spouses, Phase IV can continue for an extended time period in which the care-

giver continues to revisit the option of nursing home placement. The final phase

of the care-giving career, Phase V, begins when the care recipient is moved to a

setting that relieves the caregiver of primary responsibility for care. Most often

this phase entails placement in a nursing home, but it could be movement to the

home of another family member or movement into an assisted living facility.

During this final phase, the caregiver is often able to shift his or her primary

identity back to the initial familial role and significantly reduce the salience of

the caregiver role (Coe & Neufeld, 1999). The salience of the caregiver role relative

to the familial role would be very similar to that experienced in Phase II.

During this change process there are lag periods when there is a misfit be-

tween what a caregiver is doing and what the caregiver thinks he or she should be

doing given his or her personal identity. The core tenet of the caregiver identity

theory is that caregivers will experience distress during those periods when they

are engaged in activities that are inconsistent with their views of self. Subse-

quently, this distress will prompt caregivers to be open to and seek help. These

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points of distress may be viewed as periods in the care-giving process at which a

caregiver is “servable.” For example, a daughter who began her care-giving career

by assisting with shopping and banking matters may now find herself engaging

in activities with respect to her parent that she never engaged in previously, such

as assisting with meal preparation or bathing. Simply put, her activities are now dis-

crepant with her previous role identity. Furthermore, these activities make time de-

mands that limit her other role performances (e.g., time for being a spouse, for

being a mother to her own children, for friendship roles). The end result is incon-

gruence between what the daughter is now doing as a caregiver and the way she

views herself and her obligations as a daughter. In the context of the caregiver

identity model, the personal expectations or rules that individuals use to define

“appropriate behavior” for themselves are referred to as “identity standards.” It

is the incongruence between the care-giving tasks and personal identity stan-

dards that causes caregivers’ distress. In turn, it is this distress that prompts care-

givers to take actions to restore congruence between their care behaviors and

their personal expectations. When caregivers experience discrepancy between

what they are doing and their personal expectations or rules, they are most apt to

accept support services.

Tremendous variation exists in the trajectory of care-giving careers. Movement

between phases is not a universal experience for caregivers, nor is it a steady,

smooth process. Many caregivers, especially adult children, exit from the care-

giving role during Phase II or Phase III and move directly into Phase V. The type

and level of impairment that the care recipient exhibits, the relative stability of

functioning level, the physical and social environment in which care is provided,

and the initial familial relationship between the caregiver and the care recipient

all influence the care-giving trajectory. The only uniform aspect of the care-giv-

ing process is that caregivers experience significant distress at the points of tran-

sition between the phases. To successfully support caregivers at these stress

points, it is necessary to identify and deliver those services that reduce the dis-

crepancy between their care activities and their sense of self.

RACTICE

MPLICATIONS

Several insights emerge from the caregiver identity theory that can help social

workers effectively target support to caregivers. First, the theory highlights the

fact that specific care tasks, such as managing behavior problems or engaging in

personal care tasks, are not inherently stressful. Rather, it is the performance of

care tasks that are inconsistent with one’s identity that is stressful to a caregiver.

With this knowledge that a major source of stress is a discrepancy between what a

caregiver is doing and what he or she expects to be doing, the goal for selecting a sup-

port service becomes clear: to reduce stress by reducing the discrepancy. Clearly,

no single support service will be uniformly effective, because no single care activ-

ity or responsibility is more or less stressful to the full range of caregivers. In

short, the theory both explains and underscores the fact that shotgun approaches

to offering services tend to be very inefficient strategies for supporting care-

givers (Coon, Gallagher-Thompson, et al., 2003). At the same time, the theory pro-

vides important guidance for effectively targeting services.

Targeting Supports toward Stress Reduction Social workers can strategically target

support services when they are informed with an understanding that the pri-

Family Caregiving 443

mary goal of support services should be the reduction of distress that stems from

a caregiver’s judgment that his or her behaviors are inconsistent with his or her

expectations. Essentially, there are three strategies that can be used to help care-

givers avoid or alleviate stress. Support services can aid caregivers by helping

them to (1) change their behaviors to bring them in line with their identity stan-

dard, (2) change their self-appraisal, or (3) change their identity standard. When

specific support services such as respite care, education programs, counseling,

support groups, or case management are understood to be mechanisms for

achieving one or more of these three outcomes, providers will be better able to

target services to effectively help caregivers.

Change of Behaviors The most direct way to create congruence between a care-

giver’s behavior and his or her identity standard is to change the caregiver’s be-

haviors to make them consistent with an established identity standard. For most

caregivers, this means avoiding care tasks that infringe upon an initial familial

role (e.g., daughter role), which usually leads to obtaining outside assistance. The

introduction of in-home chore services, respite care, and meal programs can all

serve this purpose, depending on the needs of the care recipient and the relation-

ship of the caregiver to the care receiver. A daughter who cares for her mother

may maintain congruence between her care activities and her internalized norms

for performing as a daughter (e.g., her identity standards) by using respite ser-

vices. Respite care may relieve the daughter from the time demands associated

with her care-giving responsibilities and allow her sufficient time for other roles

in her life, such as being a spouse, a mother, or an employee. That is, the daughter

is able to maintain her initial role identity as daughter by shifting care tasks that

are not consistent with this identity to other formal or informal helpers.

Enhance Self-Appraisal A second avenue for relieving caregiver distress caused by

the perception of incongruence between a caregiver’s actions and his or her iden-

tity standard is to alter the caregiver’s self-appraisal in some way. This can be ac-

complished by helping caregivers to cognitively reframe their situation and

thereby counter any negative self-evaluation. For example, a common lament of

social workers concerns caregivers’ reluctance to use respite services in a timely

way. The identity theory offers insights here as well as guidance for practice.

Caregivers may not accept respite services because of their belief that the use of

such supports is inconsistent with their personal norms or identity standard.

That is to say, a wife might not be open to using services because she believes that

“a good wife” must provide care herself. In this case, the issue is one of changing

the caregiver’s self-appraisal by changing her norms to accept that respite use is

an appropriate behavior. This can be accomplished by helping her to cognitively

reframe her situation and thereby counter any negative self-evaluation. Some-

times this entails countering negative messages that caregivers may receive from

the care recipient or other family members (Levesque et al., 1995). Another exam-

ple of this type of intervention would be a social worker assisting the caregiver to

see the adult day center as mutually beneficial to the care recipient and the care-

giver. By explaining that adult day services not only give the caregivers a rest that

will improve their ability to continue providing care, but also give the care recip-

ient new opportunities for socialization, the social worker could help the care-

giver see use of day services as appropriate. This type of cognitive reframing

allows caregivers to transform negative feelings into positive appraisals.

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Change of Identity Standard A third means to reduce distress caused by incongru-

ence between identity standards and behavior is to help the caregiver alter his or

her identity standards. When discrepancies are small, providers can help care-

givers to stretch an identity standard to fit the behavior and thereby allow a pos-

itive self-appraisal. A daughter operating primarily in the role of daughter may

expand or stretch her identity standard to include such tasks as daily telephone

check-up calls, weekly shopping, or even weekly housekeeping for her parent.

This extension of her personal norms allows the daughter to appraise her care ac-

tivities as consistent with the daughter role. She can judge herself to be acting as

a “good” daughter within the constraints of her current identity standard. This

strategy is consistent with the work of Sherrell and her colleagues (2001, p. 390),

who recommend that when working with adult children, counselors should em-

phasize psychological processes of change that will help “endow the experience

of caregiving with new meaning.”

When incongruence between behaviors and identity standards leads to signifi-

cant distress, it may be necessary to encourage caregivers to adopt a new identity

that will be accompanied by a new set of rules or identity standards. Through ed-

ucation or counseling caregivers can be taught about the changing needs of the

care recipient and encouraged to embrace an identity in relation to the care recip-

ient that places greater emphasis on the caregiver role than on the initial familial

role. In the case of the daughter caring for her mother, the daughter may come to

define herself primarily as a caregiver. With this shift in identity, the daughter

may comfortably discontinue activities associated with other roles (e.g., em-

ployee, friend, or club member) that are less salient or less central to her overall

role (Coe & Neufeld, 1999). An emotion-focused strategy of acceptance described

by Levesque and her colleagues (1995) serves as an example of an intervention

that may lead to identity change. Through this educational program caregivers

were encouraged to focus on the present reality. By acknowledging the current

condition of their loved one, caregivers were helped to begin the process of ac-

cepting daily losses and a new identity.

Multiple Support Services as Vehicles to Change It is important to note that a variety

of support services can be used to reduce discrepancy, regardless of which type

of change is being attempted (e.g., change in behavior, change in self-appraisal,

change in identity standard). For example, one way to relieve a spouse caregiver

of care tasks that she deems too excessive may be to teach the caregiver more effi-

cient or effective ways of performing tasks such as grooming or bathing. In this

way the care tasks can be reduced to a level that is manageable and more congru-

ent with an existing identity standard. This same change might be accomplished

by introducing an in-home respite program that offers personal care services. In

short, multiple support services could be used to help caregivers maintain con-

gruence between an existing identity standard and the caregiver’s behaviors.

Multiple Benefits of a Single Support Service Just as it is possible to use a number of

different support services to achieve a desired change for a caregiver, it is possi-

ble that a single support service can be used to achieve multiple changes. For ex-

ample, an education program can reduce stress by teaching a caregiver more

efficient or effective methods for performing care tasks and in this way directly

change the caregiver’s behavior. An education program can also help caregivers

Family Caregiving 445

to make a realistic self-appraisal of their performance. Similarly, a support group

can help a caregiver to adjust behavior to fit an existing identity or can serve as a

source of positive feedback to reinforce a positive self-appraisal.

FAMILY CAREGIVING IN THE CONTEXT

OF PUBLIC POLICY

Any examination of the activities and needs of family caregivers would be incom-

plete without a discussion of the interface between informal caregiving and pub-

lic policy. Historically, in all societies, the family has been the primary, and most

often sole, source of assistance for dependent elders (Caro, in press). The emer-

gence of public interventions to support family caregivers has taken place in

more advanced societies over the past 3 decades. The range and intensity of these

services have varied considerably across nations and across states within the

United States. The belief that society has the primary or a significant responsibil-

ity for elder care has been most fully embraced in the Scandinavian countries,

where home care services have been made available as a right for senior citizens

(Johansson & Sundstrom, in press; Stuart & Boll Hansen, in press). In the United

States, long-term care policies and practices have been built on the premise that

the family is, and should be, the primary party responsible for care (Montgomery,

1999). Policy built on this premise persists despite changing demographics and

social trends that have limited the number of family members available to provide

care. Specifically, family size has decreased and women have entered the work-

force in greater numbers.

Summarizing findings from an extensive review of published studies that

have examined laws and policy relevant to elder policy, Hill (in press) concludes

that in the United States there is a general trend toward increased use of a

broader definition of family. This broader definition implies that spouses, the

nuclear family, extended kin, stepkin, and sometimes in-laws constitute an on-

going collective, whose members share economic resources and risks over their

lives and beyond. However, there is considerable variation among states in the

laws that are created and the rules that are enforced with respect to family fi-

nancial obligations and accountability. Some states facilitate conservation of

family resources; others are far more concerned with minimizing public assis-

tance and public costs. More problematic than the variation in the laws con-

cerned with financial obligations is the ambivalence exhibited in public policy

with regard to obligations of family members for direct care of dependent eld-

ers. Although there are no laws that require family members to provide care,

the absence of feasible alternatives in the form of public services or financial re-

sources often forces family members to undertake care tasks that tax their capa-

bilities and exhaust their personal resources. Moreover, the costs of such care

are not equally distributed in society, but are more heavily borne by women and

low-income and minority groups.

To a large extent, then, the failure of policy makers to create programs to sup-

port family caregivers reflects an underlying belief that family members should

be responsible for elder care and the belief that the introduction of public sup-

port services will cause families to abdicate this obligation. One consequence of

this situation is a bias toward institutional care that is built into public policies

in most states, due to the fact that Medicaid will cover the costs of support