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426

CHAPTER 16

Family Caregiving

RHONDA J. V. MONTGOMERY, JEANNINE M. ROWE,

and KARL KOSLOSKI

HE PROVISION OF

care for frail and disabled relatives is now widely recog-

nized as a common role in later life for most women and many men. Indeed,

family members provide 80% of long-term care in this country, and it has

been estimated that if reimbursed these services would cost $302 billion per year.

That is the equivalent of 6% of the national cost of health care (Arno, 2006).

Clearly, family caregivers are the core of the long-term care workforce, and their

well-being is intricately linked to the well-being of frail older adults.

Over the past 2 decades, much attention has been given to the negative impacts

of caregiving by both social and health practitioners (Pinquart & Sorensen, 2003,

2005). This concern for family caregivers has prompted the National Institute on

Aging to designate caregiving as one of the top priorities for social and behav-

ioral research and has led to the creation of numerous programs for family care-

givers. Whereas in the past, the needs of family caregivers were ignored and

frequently treated as an illegitimate basis for government assistance of any type,

now the Administration on Aging, through the National Family Caregiver Sup-

port Program (NFCSP), has legitimized family caregivers as a group deserving

assistance. Since the initial implementation of the NFCSP in 2001, there has been

an explosion of newly developed family support programs at both the state and

local levels. This proliferation of family support services makes careful examina-

tion of our current knowledge of caregiving for older adults a timely endeavor. In

particular, it is useful to explore ways in which information gained from research

can be used to guide practice and policy.

If social workers are to effectively serve older adults, it is imperative that they

understand the contributions and needs of family caregivers. In this chapter, we

examine the composition of this largely unpaid workforce, the types of tasks and

responsibilities that they undertake, the impact of this role on caregivers’ lives

and well-being, and current knowledge about effective methods for supporting

their efforts.

Family Caregiving 427

WHO ARE THE CAREGIVERS?

The general consensus in the literature is that, most often, one family member

serves as the primary source of care for an impaired elderly person, although

others in the network of family and friends may serve as secondary caregivers.

This role of primary caregiver is not uniformly embraced by all potential care-

givers, nor is it experienced in the same manner by those who assume the role

(Acton & Kang, 2001; Anhensel, Pearlin, Mulan, Zarit, & Whitlach, 1995; Miller

& Lawton, 1997; Sorensen, Pinquart, & Duberstein, 2002). There is a hierarchy in

the selection of the primary caregiver that is linked to sex, generation, and geog-

raphy. When available, a spouse provides the majority of care. In the absence of a

spouse, a daughter is most likely to assume the role. Daughters are twice as

likely as sons to become the primary caregiver (AHRQ Research Report, 2001;

Campbell & Martin-Matthews, 2003). The crucial role of sex in the hierarchy of

obligation to elderly family members is reflected in the fact that after spouses

and daughters, it is daughters-in-law and not sons who are the next lines of re-

sort (Ory, Yee, Tennstedt, & Schulz, 2002). Although the participation of sons as

primary caregiver rose by 50% between 1984 and 1994, they still accounted for

only 15% of primary caregivers in 1994. In the absence of offspring, more distant

family members become responsible. It is also the case that the caregiver role

tends to fall to the person with the fewest competing responsibilities, including

obligations to spouse, children, and employers (Brody, 1990; Stern, 1996; Stueve

& O’Donnell, 1989). Geography also influences the selection of the primary care-

giver, in that adult children who live closer to a parent are more apt to assume

care-giving responsibilities. However, offspring who live at a distance often pro-

vide assistance with financial and legal matters and arrange for the provision of

direct care by paid caregivers.

Given the high rates of widowhood among the older population and sharing

of care-giving responsibilities by multiple siblings, children greatly outnumber

spouses as active caregivers (Spillman & Pezzin, 2000). The prevalence of dif-

ferent types of relatives (e.g., spouse, daughter, daughters-in-law, or son) has

also been found to differ by ethnicity and income (Dilworth-Anderson &

Gibson, 2002).

Daughters and more distant relatives are more prevalent as caregivers in His-

panic and Black populations than they are in White populations, but this trend is

moderated among higher income groups (Laditka & Laditka, 2001). Among Asian

groups, sons are more frequently identified as caregivers who assist with instru-

mental activities of daily living (IADLs), and daughters-in-law are more preva-

lent as caregivers who provide assistance with household tasks and personal care

(Youn, Knight, Jeong, & Benton, 1999).

IVERSITY OF

ARE

ASKS

Caregivers not only differ in terms of their relationship to the care receiver, but

also in the manner in which they embrace and experience the care-giving role.

That is, caregivers differ in what they do, how they do it, and how long they do it.

In general, the closeness of the familial relationship is directly linked to the

amount, type, and duration of care provided. As a rule, relatives who are more

closely related to the care recipient provide greater amounts of care, as measured

by the types of assistance provided, the time spent performing care tasks, and the

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length of time they are willing to persist in the care-giving role. Hence, spouses

tend to provide more care than adult children, and adult children tend to provide

more care than do siblings, nieces or nephews, or grandchildren (Delgado &

Tennstedt, 1997a).

There is also substantial evidence that within groups of caregivers who have the

same relationship to the care recipient, care activities differ by sex (Delgado &

Tennstedt, 1997b; Matthews, 1995; Montgomery & Kamo, 1989). Among spouses,

wives tend to provide more hours of care and accept less help from formal providers

(Barusch & Spaid, 1996; Dwyer & Conrad, 1992; Merrill, 1997). There is also some

evidence that husbands and wives differ in their style of care. Wives are more apt to

be concerned with the emotional well-being of their husband and frequently under-

take tasks intended to maintain continuity of a husband’s identity. Husbands, in

contrast, are more apt to approach caregiving using a managerial style primarily fo-

cused on the physical needs of their wife (Pinquart & Sorensen, 2006).

Few differences in helping behaviors have been reported between daughters

and sons assisting parents who have minimal need for assistance. There is, how-

ever, strong evidence of differences between sons and daughters when they are

assisting parents who have significant functional or cognitive impairment. When

parents are more severely impaired, daughters provide more hours of care than

do sons, perform a broader range of care tasks, and are more apt to provide help

that must be performed on a regular basis (Cicirelli, Dwyer, & Coward, 1992;

Mittelman, 2003). Although daughters often seek assistance from their own im-

mediate family members, including their husband and children, they tend to re-

ceive less assistance from siblings or distant kin than do sons. In part, these

differences in care patterns reflect a difference between sons and daughters in

the duration of the care-giving role. Fewer sons than daughters are willing or

able to continue in the care-giving role when the functional level of their parent

declines to a level that requires assistance with activities of daily living (ADLs),

such as dressing and bathing. Consequently, as a group, daughters are more apt

to be caring for parents with greater needs for assistance, and the care recipient

is more likely to be residing with a daughter than with a son (Brody, Litvin,

Hoffman, & Kleban, 1995). There has been some speculation that this pattern re-

flects social norms and taboo (Montgomery & Kamo, 1989), but there is also evi-

dence that these patterns are related to stronger normative ties between mothers

and daughters (Dilworth-Anderson & Gibson, 2002).

Much less information is available about siblings and caregivers who are more

distantly related to the care recipient, as these groups tend to account for a

smaller proportion of caregivers and have not been widely studied. Generally,

however, these more distant caregivers tend to provide assistance to persons with

fewer needs and do so for much shorter periods than that observed for spouses

and adult children. There is some evidence, however, that a small segment of sib-

lings and distant relatives do establish close emotional ties with their elderly rela-

tive and assume care-giving roles that more closely mirror those of adult children.

Certainly, more research needs to be conducted with this somewhat unique group

of caregivers to provide a more complete understanding of their experience.

OUTCOMES OF CAREGIVING

An extensive body of work now exists that documents both positive and negative

outcomes of caregiving. The large majority of research that has examined these out-

Family Caregiving 429

comes has been guided by the stress model, which was most clearly articulated by

Pearlin and his colleagues (Pearlin, Mullan, Semple, & Skaff, 1990). The model pro-

vides a conceptual framework that identifies four domains that make up the stress

process: the background and the context of stress, the stressors, the mediators of

stress, and the outcomes or manifestations of stress. The background and the con-

text factors include the demographic and ascribed characteristics of the caregiver,

the relationship between the caregiver and the care receiver, and aspects of the so-

cial and service delivery environment that frame the context in which care is pro-

vided. As individuals become caregivers, they are exposed to primary stressors and

secondary stressors. Primary stressors are conditions and characteristics of the care

receiver that translate into the care tasks and responsibilities that are assumed by

the caregiver. These include the care receiver’s cognitive status, problematic behav-

iors, and the need for assistance with ADLs and IADLs. Primary stressors may im-

pact negatively on the caregiver and lead to secondary role and intrapsychic strains.

That is to say, primary stressors may produce secondary strains that translate into a

subjective sense of role overload and relational deprivation. These secondary strains

on the caregiver include constraints on other aspects of the caregiver’s life, includ-

ing family and occupational role and social and recreational activities, and intrapsy-

chic strains such as loss of self-esteem, loss of self, role captivity, and lowered sense

of competence. The outcomes of the care-giving stress process may include caregiver

depression, a subjective sense of stress or anxiety, and change in caregiver physical

and mental health. These in turn can prompt caregivers to leave the care-giving role.

In general, negative impacts of caregiving can be grouped under four general head-

ings: infringement on time and lifestyle, impacts on the caregiver/care receiver re-

lationship, mental health, and physical health.

EGATIVE

ONSEQUENCES OF

AREGIVING

Infringement on Time and Activities The most immediate impact of providing care

is the use of the caregiver’s time, which often infringes on the time available for

other life activities. Caregivers have reported restrictions on personal time and

socialization as a result of caregiving. This restriction on caregivers’ activities

has, in turn, been identified as a critical cause of depression among caregivers

(Yee & Schulz, 2000). In addition, the objective demands of providing care impact

other aspects of the caregiver’s life and may manifest in perceptions of role con-

flict and overload (Yates, Tennstedt, & Chang, 1999; Yee & Schulz, 2000). The con-

flict between caregiving and employment has been of particular interest to

researchers (Fredriksen & Scharlach, 1997; Kramer & Kipnis, 1995).

Relationship with Care Recipient As caregiving continues, the change in the care-

giver or progression of the disease inevitably impacts the relationship between

the caregiver and the care recipient. For example, as cognitive abilities decline

and needs for assistance with basic ADLs increase, the individual with dementia

becomes less able to contribute reciprocally to the relationship (Ory et al., 2002).

This is critical because it is typically this relational connection or history that

prompts relatives or friends to assume the care-giving role in the first place.

Eventually, the demented individual becomes unable to even recognize or com-

municate with the caregiver. It is suggested that caregivers are thus faced with

additional demands of grieving for the loss of their relationship while continuing

to meet objective demands for care (Meuser & Marwit, 2001).

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Physical Health Negative effects of caregiving on the health of caregivers have

also been established (Beach et al., 2005; Bookwala et al., 2000). Declines in im-

mune functions have been measured (Kiecolt-Glaser, Glaser, Gravenstein,

Malarkey, & Sheridan, 1996), as well as decreases in the rate of wound healing

(Kiecolt-Glaser, Maruchas, Malarkey, Mercado, & Glaser, 1995). Women have

been found to be less likely to engage in preventive health behaviors such as time

for rest and exercise, when compared to men (Burton, Newsom, Schulz, Hirsch, &

German, 1997). In addition, cardiovascular changes such as increases in blood

pressure have also been found (Vitaliano et al., 2005). Lack of time to devote to

self-care and preventive health behaviors due to caregiving demands may con-

tribute to long-term negative health outcomes for caregivers, in addition to direct

effects of objective burden and depression (Vitaliano, Young, & Zhang, 2004).

Mental Health and Psychological Outcomes Impacts on mental health have been

variously conceptualized as caregiver distress, burden, strain, depression, and

psychological well-being (Chappell & Reid, 2002). Caregiver stress or strain has

been linked to both the functional level of the elder and the activities of the care-

giver. In general, the demands of assisting with personal care and dealing with

problem behaviors of the care recipient and the need for constant supervision are

stressful and lead to psychological distress, changes in social activities, and nega-

tive feelings about caregiving (Levesque, Cossette, & Laurin, 1995; McKinlay,

Crawford, & Tennstedt, 1995; Montgomery, 1989). Increases in depression and

anxiety have been reported by caregivers (Schulz et al., 1997; Schulz, O’Brien,

Boodwasa, & Fleissner, 1995), and increased psychotropic drug use by caregivers

has also been documented, reflecting the negative psychological effects of care-

giving (Sleath, Thorpe, Landerman, Doyle, & Clipp, 2005).

OSITIVE

UTCOMES OF

AREGIVING

Although widespread agreement exists that caregiving has negative conse-

quences for many caregivers, positive outcomes have also been observed, in-

cluding a sense of mastery, positive affect, and an improvement in the quality of

the dyadic relationship between the caregiver and the care recipient (Beach,

Schulz, Yee, & Jackson, 2000). There is also growing evidence that feelings of

caregiver satisfaction or gratification may be linked to subjective meanings at-

tributed to the caregiver role. In their study of role engulfment or loss of self in

the care-giving role, Skaff and Pearlin (1992) report that one of their intriguing

findings is the lack of relationship between loss of self and self-gain. That is,

some caregivers may feel that they have grown as a result of their experiences,

but whatever personal enrichment they might experience does not protect them

from suffering a loss of identity.

Braithwaite (2000) found that love and intimacy appraisals were not related to

burden, but were associated with improved psychological well-being. Similarly,

in a qualitative study conducted with 48 caregivers, Noonan, Tennstedt, and

Rebelsky (1996) found that predominant themes of care-giving meaning included

gratification and satisfaction, family responsibility and reciprocity, and friend-

ship and company. Kramer (1997) analyzed 29 studies that focused on positive

gains; she argues for research that focuses on the positive aspects of caregiving.

She suggests that understanding the positive gains may enable professionals to

Family Caregiving 431

work more effectively with families and may enhance theories of care-giving

adaptation and well-being. These findings support the proposition that there are

uplifts in the care-giving experience that may prevent the stress of caregiving

from dominating all spheres of life.

XPLAINING

IFFERENTIAL

MPACTS AND

UTCOMES

Perhaps the most perplexing question that persists for practitioners despite ex-

tensive research about the impact of caregiving on family members concerns the

differential impact of the care-giving experience. For some family members care-

giving is a difficult experience that has serious negative consequences. Yet other

caregivers that have similar responsibilities are able to cope well and report little

impact of the experience on their well-being (Call, Finch, Huck, & Kane, 1999;

Levesque et al., 1995; Merrill, 1997; Montgomery & Datwyler, 1990; Pyke &

Bengston, 1996).

Studies directed toward understanding variation in the consequences of care-

giving have focused on a large number of factors: the health characteristics of the

care recipient and of the caregiver (Beach et al., 2000; Kramer & Kipnis, 1995),

the level and type of care provided (Beach et al., 2000), the gender relationship of

the caregiver to the care recipient (Miller & Cafasso, 1992; Miller, McFall, &

Montgomery, 1991; Stephens, Townsend, Martire, & Druley, 2001), race and cul-

ture (Dilworth-Anderson, Canty Williams, & Gibson, 2002; Farran, Miller, Kauf-

man, & Davis, 1997; Janevic & Connell, 2001; Knight & McCallum, 1998; Lawton,

Rajagopal, Brody, & Kleban, 1992), the length of caregiving (Donaldson & Burns,

1999; Van den Heuvel, Witte, Schure, Sanderman, & Meyboom-de Jong, 2001),

and the availability and use of informal and formal sources of support (Bass &

Noelker, 1996; Chappell & Reid, 2002).

Functional Level of the Care Recipient A small number of studies have reported a

statistically significant relationship between caregiver outcomes and elder’s level

of functioning (Beach et al., 2000, 2005); others have noted the absence of a rela-

tionship (George & Gwyther, 1986). Caregiver burden may increase incremen-

tally as an additive effect of the demands on increasing care-giving tasks.

However, burden is not necessarily proportional to increase in physical disabili-

ties (Braithwaite, 1996). There is also some evidence that declining cognition and

problem behaviors contribute to caregiver burden. Levesque, Ducharme, and

Lachance (1999) reported greater stress among individuals caring for a demented

relative as opposed to those caring for an elder with physical impairments. Again,

however, findings have been inconsistent. For example, Barusch and Spaid (1996)

observed less burden for some family members caring for a loved one with de-

mentia than for family members caring for a physically disabled person. It has

been speculated that the absence of a direct link between elder’s level of function-

ing and caregiver burden is associated with the sex of the caregiver (Montgomery

& Williams, 2001).

Gender and Familial Relationships The two factors most consistently reported to

be associated with higher levels of stress are sex and living arrangement. Gener-

ally, women and caregivers who reside with the care recipient experience

higher levels of stress (Merrill, 1997; Yee & Schulz, 2000). Women are generally

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believed to experience more primary stress and secondary role strain, and they

experience greater occupational disruption as a result of care-giving responsi-

bilities (Merrill, 1997; Winslow, 1999; Yee & Schulz, 2000). These patterns

are frequently explained as a consequence of the more intense care and the

greater amount of personal care that women provide. Yet even the pattern of

greater stress among women caregivers has not been uniformly supported by

past research. A number of studies of spouse caregivers report no differences

in caregiver outcomes associated with sex (Barusch & Spaid, 1996; Kramer &

Kipnis, 1995).

The inconsistencies in findings related to sex have prompted researchers to

consider the association of caregiver outcomes within the familial relationship

between the care recipient and the receiver (i.e., spouse versus child). Matire

and her colleagues (Matire, Parris-Stephens, & Franks, 1997) explained the

higher level of strain that they observed among daughters than among wives or

husbands as a consequence of multiple and competing roles. Yet a number of in-

vestigators have reported lower levels of burden among adult children than

spouses. It has also been suggested that spouses may experience more strain be-

cause they provide a greater quantity of care and more intense care than do

children (Spillman & Pezzin, 2000). However, evidence of a direct link between

care load and caregiver burden and stress remains unsubstantiated. An alterna-

tive explanation for the lower levels of burden observed among spouses may

center on the isolation that spouses experience. In contrast, caregiving may pro-

vide an additional role for daughters that enhances well-being by competing

with demands of multiple roles (Doress-Worters, 1994). Farkas and Himes

(1997) noted that for many of the daughters included in their study the addition

of care-giving responsibilities did not limit their involvement in community ac-

tivities, but instead these activities may have increased and served as a mediat-

ing buffer to stress.

Ethnicity There is a growing body of research that explores how culture or

ethnicity influences the care-giving experience. In a review of the care-giving

literature, Dilworth-Anderson and colleagues (2002) found that care-giving ex-

periences and outcomes varied by race, ethnicity, and culture. Their examina-

tion of literature that included negative effects of caregiving (depression,

burden, role strain, psychological distress, and relationship strain) found that,

in general, White caregivers were significantly more depressed and burdened

than African American caregivers. Hispanic and White caregivers experienced

higher levels of role strain compared to African Americans. Findings also show

that in general, African American caregivers were more likely than Whites

to cope with difficulties of caregiving with prayer, faith in God, and religion

in general. Picot and her colleagues suggests that for many African American

caregivers faith and prayer may act as a buffer to care-giving stresses and may

be associated with perceptions of rewards (Picot, Debanne, Namazi, & Wykle,

1997). African American caregivers were also found to use more positive reap-

praisal than White caregivers when dealing with the difficulty of caring for

their elder (Farran et al., 1997; Knight & McCallum, 1998; Knight, Silverstein,

McCallum, & Fox, 2000). Together, these studies underscore the importance of

understanding how social and cultural factors influence both caregiver out-

comes and appraisals.

Family Caregiving 433

Social Support Consistent with the stress model of Pearlin and his colleagues

(Pearlin, Turner, & Semple, 1989), social support and formal resources have been

identified as specific buffers to caregiver stress. The mediating effect of these

variables has been found to vary depending on the care-giving situation. Overall,

formal and informal supports are believed to mitigate the burdens of caregiving.

Yet empirical evidence of these relationships has been inconsistent (Sorensen

et al., 2002). Studies of intervention aimed at enhancing support interventions to

relieve caregiver burden have reported mixed results, ranging from lack of psy-

chological benefit for caregivers (Franks & Parris Stephens, 1996) to modest ef-

fects (Bourgeois, Schulz, & Burgio, 1996). Similarly, the importance of a network

of caregivers to meet multiple demands of caregiving is disputed by studies that

suggest that supplementary caregivers are not always beneficial and may indeed

contribute to stress due to caregiver conflict (Penrod, Kane, Kane, & Finch, 1995).

FORMAL SUPPORT SERVICES

Current knowledge about the impact of formal service provision also remains some-

what limited (Gottlieb & Johnson, 2000; Kosloski, Montgomery, & Youngbauer, 2001;

Sorensen et al., 2002). With the introduction of the National Family Caregiver Sup-

port program and greater interest by the National Institute on Aging in caregiver

research, a wide range of support services have been developed by state and local

agencies to support family caregivers. Both the goals and the content of these sup-

port services vary widely. Home health and chore services are frequently available

to the family member with care tasks, and skilled nursing care (e.g., home health

care) that may exceed the abilities or capacities of informal providers is available.

These services may also be made available with the intent to provide caregivers

respite or relief from their responsibilities for short periods of time. Respite is usu-

ally offered with the expectation that it will enable caregivers to continue in their

role as primary sources of long-term care. In addition to direct care services, many

programs offer education, counseling, and support groups to enhance the skills of

caregivers and address their psychological needs. Although there is some consis-

tency in the types of services available, there is great variation in the structure and

content of programs and in the manner in which they are delivered. Each of the dif-

ferent types of caregiver support services and their variations are described next.

ESPITE

ERVICES

Respite care is the most frequently requested service by caregivers of dementia

patients (Gallagher-Thompson, 1994; Montgomery, 2005; Montgomery & Rowe,

2003; Wykle, 1994) and the most frequently prescribed by practitioners (Mont-

gomery, 2005; Montgomery & Rowe, 2003). Perhaps the reason for this stems from

a prevailing belief that respite will relieve the burden or stresses associated with

caregiving and allow family caregivers to continue caring when nursing home

placement is imminent.

The term respite care refers to a range of services designed to give caregivers

time off or away from care-giving responsibilities (Gaugler et al., 2003; Mont-

gomery & Kosloski, 1995; Sorensen et al., 2002). These include informal help pro-

vided by family members, as well as formal help provided in the home or in

group or institutional settings. Informal respite refers to unpaid assistance with

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care and is typically performed by family members, relatives, friends, or volun-

teers. Formal respite refers to care for an individual that is typically performed

by an employee of a direct service provider.

Formal respite services can be categorized by the location or setting in which

the service is delivered and the level of care that is provided. Out-of-home services

include nonresidential care delivered in group settings such as adult day centers

and residential settings such as homes, nursing homes, and, although rare, hospi-

tals. In-home services include companion programs and personal care services of-

fered in a recipient’s home. Many respite programs offer multiple levels of

assistance or offer services in multiple settings. The most common form of out-of-

home respite is provided through adult day centers (ADCs). Historically, ADCs

were best able to serve clients who needed minimal assistance, and these centers

often did not enroll elders who were incontinent or wandered (Montgomery,

1988, 1996). Today, however, adult day programs are viewed as a realistic way to

provide respite to caregivers of individuals suffering from Alzheimer’s disease or

other forms of dementia (Dziegielewski & Ricks, 2000).

Adult day centers vary widely in their hours of operation and the types of ser-

vices they provide. At one extreme are programs that operate 5 days a week and

are open between 8 and 10 hours a day. These comprehensive programs are most

often located in urban areas. At the other extreme are adult day programs that

operate only 1 or 2 days per week for 3 to 4 hours. These are often located in local

churches or community buildings and are frequently referred to as Brookdale

models because they were initially funded by a large grant program of the Brook-

dale Foundation. Between these extremes are a large number of ADC programs

that are open for 5 to 6 hours a day. Some of these programs are restricted to 2 or

3 days a week; others operate daily.

Just as there is variation among ADCs in their hours of operation, there is also

great variation in the level of care that is provided within day centers. Broadly de-

fined, ADCs provide therapeutic services, personal assistance, meals, social ser-

vices, transportation, and personal care services, with the goal of allowing

families to relinquish care responsibilities for several hours during the day (Gau-

gler et al., 2003). Many ADCs also perform a range of health-related services and

some forms of skilled nursing care (Montgomery, 1988, 1996). Initially most ADC

programs operated as social models of care by providing “sitting” services for care

recipients outside their homes that included a variety of social activities. The goal

was to give the caregiver a break from care-giving responsibilities. Centers that

follow the social model often offer a range of social activities, such as games, arts

and crafts, and discussion groups, and also provide some interaction or attention

from staff. This model of service still prevails, but many ADC programs now op-

erate using a medical model of care in order to qualify for reimbursement though

Medicaid waiver programs. These programs are staffed with skilled nurses, ther-

apists, and social workers and offer an array of medical services.

In-home respite services include companion programs, homemaker services,

and personal care services delivered in the care recipient’s home, most often by

home health agencies or homemaker services. Like ADC programs, in-home pro-

grams vary widely in terms of the level of care and the amount and duration of

service available. Some programs limit their services to short periods of 2 to 4

hours; others provide in-home respite for periods of 24 hours or greater. To a

large degree, the availability of services is linked to payment sources. Private-pay

Family Caregiving 435

clients can usually obtain services in any quantity; however, the hours of services

available through publicly funded programs are often capped in terms of the

number of hours per day or per month. Some programs offer emergency respite

services, but most programs require advance notice (Montgomery, 2002).

It is widely believed by service providers and policy makers that this relief

from stress will enable caregivers to continue in the care-giving role longer and

will translate into the prevention or delay of nursing home placement (Mont-

gomery & Kosloski, 1994). Although these potential benefits of respite for reliev-

ing caregiver stress and reducing the public costs of long-term care have been

widely touted, evidence to support these assertions has been somewhat limited.

The most consistent finding from studies of respite programs is that clients are

satisfied with the services they receive (Baumgarten, Lebel, Laprise, Leclerc, &

Quinn, 2002; Dziegielewski & Ricks, 2000; Townsend & Kosloski, 2002; Warren,

Kerr, Smith, Godkin, & Schalm, 2003).

With respect to the impact of respite services on stress or burden, the findings

have been inconsistent. One meta-analysis of 13 studies concluded that respite in-

terventions have been effective at reducing caregiver burden and depression and

improving well-being (Sorensen et al., 2002). Indeed, a small number of studies

have successfully documented a link between the use of respite services and im-

proved psychological conditions, including decreased burden and stress and in-

creased well-being among caregivers (Dellasega & Zerbe, 2002; Gaugler et al., 2003;

Kosloski & Montgomery, 1995; Levesque et al., 1995). Conversely, Baumgarten and

colleagues (2002) found that respite care had no or a mild effect on care-giving out-

comes. Similarly, an earlier meta-analysis of 18 articles published between 1980

and 1990 on psychosocial interventions and respite care concluded that respite ser-

vices had a moderate effect (Knight, Lutzky, & Macofsky-Urban, 1993).

There is also limited evidence to support the notion that when respite is pro-

vided in an appropriate manner and used in sufficient quantity, it may reduce in-

stitutionalization. Most early studies of respite care provided little evidence to

support the prevention or delay of nursing home placement. Later findings from a

few large studies are more encouraging. Examining data from a study of 541

caregiver and care receiver dyads, Kosloski and Montgomery (1995) found that

respite intervention did delay nursing home placement. More recently, Gaugler

and his colleagues (2000) found that caregivers were far less likely to institution-

alize their relatives when family members provided overnight help and assisted

with ADLs.

DUCATION

Over the past 2 decades numerous educational programs have been developed to

help family caregivers. Education interventions are designed to provide care-

givers with critical information that will enhance their abilities to provide care

and cope with the associated stresses. Most of these programs are intended to

either increase the knowledge or skills of caregivers to provide care or address

the psychoemotional needs of caregivers by teaching self-care or coping skills.

Skill-focused educational programs include those that teach about specific dis-

ease processes, direct care skills, and behavior management.

In addition to providing standardized information about the disease process,

disruptive behaviors, and care-giving skills, psychoeducational programs usually