Institutionalization of an Elderly Family Member: Reactions of Spouse and

Nonspouse Caregivers Sharon King, Clare Collins, Barbara Given, and

Janet Vredevoogd

Although a prevalent clinical assumption is that the careglver well-being im- proves following patient institutionalization, recent research challenges this as- sumption. In this article, the impact of patient institutionalization on the well- being of family caregivers is examined. Caregiver reaction, sense of general well-being and level of depression are compared pre- and postinstitutionailzation and differences between spouse, adult child, and other caregivers are investi- gated. Copyright 0 1991 by W.B. Saunders Company

F AMILIES ARE rarely prepared on a psycho-

logical level for the institutionalization of one

of their members (Brody, 1986; Buckwaiter & Hail, 1987). The nursing home placement of a rel-

ative may be preceded by months of uncertainty and agonizing decisions (Morycz, 1985) or may be

the result of a health crisis that has befallen the

elderly family member. Feelings of guilt, shame,

and inadequacy may coexist with the strong desire to be relieved of the day-to-day burdens of provid-

ing and managing the care of an impaired relative.

The turmoil experienced by families through the

process of institutionalization is such a universal

experience that it has been termed a normative cri- sis (Brody, 1986). There are two contrasting hy- potheses about the effect of institutionalization of a

family member on the emotional well-being of a

caregiver. One prevailing hypothesis would sup- pose a sense of relief for the caregiver following

the burdensome events that precipitated the insti-

tutionalization. A contrasting hypothesis is that the event of institutionalization is in itself so traumatic

that the caregiver is left in a state of emotional

distress following its occurrence. Despite the in- creasing attention to family caregiving, relatively little research has focused on the emotional states of caregivers both preceding and following the in- stitutionalization of an elderly family member.

Health care professionals are becoming increas-

ingly aware of the need for collaborative relation-

ships with the family of the institutionalized el- derly as well as the potential of family members to

enhance the care of the elderly individual foliow- ing institutionalization (Hansen, Patterson, & Wii-

son, 1988). An understanding of the experience of

family members who institutionalize their relatives

will lay the groundwork for the formulation of

clinical interventions to assist families in the tran-

sition between home family care and collaborative

care provided by families and staff members in the

institutional setting. It is the purpose of this article

to examine how the reactions and mental health of family caregivers change following institutionali-

zation and how these changes are associated with the family relationship between caregiver and el-

derly relative.

From the College of Nursing, Michigan State University, East Lansing.

Supported by Grants No. 2 ROl AGO6584 from the Na- tional Institute of Aging; and ZROI MH 41766 from the National institute of Mental Health, Bethesda, MD.

Address reprint requests to Sharon King, R.N., C.S., Ph.D., College of Nursing, Michigan State University, East Lansing, Ml 48824

Copyright 0 1991 by W.B. Saunders Company 08839417l91/0506-0001$03.00/0

Archives of Psychiatric Nursing, Vol. V, No. 6 (December), 1991: pp. 323-330 323

324 KING ET AL.

FAMILY REACTIONS TO INSTITUTIONALIZATION

Although at one time it was assumed that patient

institutionalization represented the point at which

the formal caregiving relationship was terminated,

recent investigations have challenged this assump-

tion. Current reports have documented the continu-

ing involvement of family caregivers in the care of

their institutionalized relative (Bowers, 1988;

Buckwalter & Hall, 1987; George & Gwyther,

1984; Hansen et al., 1988; Pratt, Wright, & Schmall, 1987) and the value of this involvement

to the health and sense of well-being experienced

by the institutionalized elder. For example, Bow-

ers (1988), in a qualitative study of the experience

of institutionalization, reports that family in-home

care focuses on preventing the older person’s

awareness of functional decline, while family in- stitutional care centers on maintaining a sense of

family connectedness , hope of recovery, and sense of control over the new environment. The issues

for family caregivers change at the time of patient institutionalization, but the institutional environ-

ment is fertile ground for other stressful experi-

ences to occur for family caregivers (Bowers,

1988). Hansen et al. (1988) comment that families

often experience drastic changes in their relation-

ship with their relative after institutionalization and

may need support and guidance in establishing

new protective-kin roles. Both the source and the amount of stress experienced by family caregivers

who institutionalize their relative are areas for

which there are conflicting research findings. Studies have resulted in inconclusive and con-

flicting findings related to the amount of stress experienced by family caregivers who have placed their family member in an institutional setting.

Riddick ( 1987) observed a dramatic decrease in the

level of stress reported by the family caregiver im- mediately following institutionalization of their

relative. The 84 family caregivers who were polled

in this study were individuals who had already in-

stitutionalized their family member and the mea- sure of stress before institutionalization was based on recall of the caregiver. No overall difference in the level of stress was observed between commu- nity caregivers and caregivers who had institution-

alized their relative in a study reported by Pratt et al. (1987); however, differences were observed in the sources of stress for those two groups of care- givers.

Research has also resulted in conflicting find- ings regarding the source of stress for family care-

givers who have institutionalized their relative.

Buckwalter and Hall (1987) discuss the adjustment

of family members to the need to function within the bureaucracy of the institution as resulting in a

burden associated with the loss of role and the

relinquishing of the rights of their relationship with

the patient. George and Gwyther (1984) reported on a longitudinal investigation of the well-being of

family caregivers of memory-impaired elders. Family caregivers in this study who had institu-

tionalized their relative before the first test date

and maintained their relative in an institution as of

the second date exhibited higher and more stable

well-being over time than family caregivers who

continued to provide home care or those who in- stitutionalized their relative between test dates.

Caregivers who had institutionalized their relative

between test dates reported increased levels of stress-related psychiatric symptoms and use of

psychotropic drugs. George and Gwyther (1984) suggest that the immediate postinstitutionalization

well-being of caregivers may decline because they have not yet begun the process of gradually relin-

quishing the caregiver role.

Several studies additionally link perceptions of quality of care in the institutional setting to the

stress experienced by the caregiver and the overall adjustment of the family to the institutionalization

experience (Riddick, 1987; Townsend, Deimling,

& Noelker, 1988). Overall, there seems to be good reason to challenge the assumption that caregiver

stress is alleviated by the institutionalization of an

impaired family member.

RELATIONAL DIFFERENCES IN REACTIONS

The experience of providing home care has been

documented as differing between spouse and non-

spouse caregivers. Caro and Blank (1984) docu- mented that daughters showed lower levels of in-

volvement in caregiving than did spouses. The stress and disruption of daily life has been cited by Cantor (1983) as being very different for spouse and nonspouse caregivers. According to Cantor, the closer the emotional bond, the more stressful the caregiving role. Related findings by Deimling and Bass (1986) indicated that the level of patient function had differential effects on the adult child caregiver’s and the spouse caregiver’s perceptions

lNSTlTUTlONALlZATlON 325

of stress and depression. Even as the home care- giving experience seems to vary according to fam- ily relationship, so does the attitude of the care-

giver concerning institutional care (Deimling &

Poulshock, 1985). Townsend, Deimling, and Noelker (1988) ob-

served no significant differences in the sources of

stress for spouses and children following institu- tionalization of their relative but do not report mea-

sures of depression or mental health for these two

caregiver groups. Pagel, Becker, and Coppel (1985) report only on spouse caregivers who have

institutionalized family members, and Riddick’s

analysis (1987) differentiated caregivers by spouse

and child versus others. Hence, it has been diffi- cult to form conclusions regarding the differential

effects of institutionalization on caregivers based on their relationship to the family member who has

been institutionalized.

METHODS

Data from which this analysis is derived were

obtained from a longitudinal study of family care

in which 307 family caregivers participated in in-

tensive in-home or phone interviews at three points during the year that they were enrolled in the

study: at intake, at 6 months, and at 1 year follow-

ing entry in the study. Caregivers who participated in this study were

solicited through a variety of home-care agencies, private physicians, and community groups. After

receiving information about the research study, po- tential participants who were interested in taking

part in the study returned a postcard and were screened via telephone interview. Those who met

the criteria were the self-defined primary caregiver

of an elderly family member who had at least two

deficits in Activities of Daily Living (ADL) or In-

strumental Activities of Daily Living (IADL). At the conclusion of data collection, 35 of the

307 family caregivers taking part in the longitudi- nal study had institutionalized their family mem-

ber. For the purpose of this analysis, measures of caregiver well-being preceding institutionalization

were obtained at the most recent data collection point preceding institutionalization, and postinsti- tutionalization measures were obtained at the next data collection point following institutionalization. At the time of the postinstitutionalization measure, the mean duration of institutionalization of the pa-

tient had been 14.4 weeks, with a standard devia-

tion of 8.3 weeks and a range of from 4 to 29 weeks. Accordingly, this discussion will focus on

the experience of these 35 families in the early period following institutionalization of their el-

derly relative. In this analysis of the pre- and postinstitutional-

ization well-being of family caregivers, the con-

cept of caregiver well-being has been operational-

ized using two categories of measures. The first

category of measures survey the specific reactions that the caregiver reports relative to their caregiv-

ing role. Caregivers’ reactions to their caregiving

role were measured with the Caregiver Reactions

Inventory (Given, King, Collins, & Given, 1988).

This instrument assesses the perceived impact of

caregiving on daily schedule, finances, and care-

giver health. Measures of caregivers’ reactions were devel-

oped from a pool of 111 items that were introduced to an independent pilot group of caregivers (n =

96). An initial exploratory factor analysis reduced

the pool to 77 items. A confirmatory factor anal-

ysis approach was used with the present sample.

Hypothesized dimensions were used to group

items into subscales and the number of items were

reduced to 42 (Given, Stommel, Collins, King &

Given, 1990). Table 1 contains the items that make

up the Caregiver Reactions Inventory subscales used in this analysis and the a-coefficient for each

subscale. o-coefficients for these subscales were

calculated from the responses of the 307 subjects who participated in the longitudinal study.

The Impact on Schedule subscale of the Care-

giver Reactions Inventory assesses caregivers’ per- ceptions of the degree to which the caregiver role

intrudes upon their scheduling and carrying out of daily activities. The Financial Impact subscale of

the caregiving role is assessed in terms of the per-

ception that the role results in a financial strain for

the caregiver. The degree to which the health of the caregiver is affected by the carrying out of caregiving activities is assessed by the Impact on Health subscale.

All items are self-rated by the caregiver on a

five-point Likert scale ranging from Strongly

Agree to Strongly Disagree. Negatively worded items were reflected in coding so that in all in- stances higher scores indicate higher perceptions

of being affected by the area in question as part of the caregiving role. Table 2 contains the range of

326 KING ET AL.

Table 1. a-Coefficients and Items for Caregiving Reactions inventory Subscales

Subscales a

Coefficient Itern

Impact on finances

Impact on health

.71

.89

Impact on schedule .85 My activities are centered around care for

I have to stop in the middle of my work or activities to provide care.

I have eliminated activities from my schedule since caring

for

The constant interruptions make it difficult to find time for relaxation.

I visit family and friends less since I have been caring for

My financial resources are adequate to pay for things that are required for

caregiving.*

it’s difficult to pay for ‘s health needs and services.

Caring for has put a financial strain on the family.

I am healthy enough to care for .*

It takes all my physical strength to care for

My health has worsened since I’ve been caring for

I have enough physical strength to care for .*

Since caring for , it seems like I’m tired all the time.

NOTE. Caregiver reactions inventory: 1, strongly disagree; 2, disagree; 3, neither agree nor disagree; 4, agree; 5, strongly agree. l Reflect item coding.

scores for each subscale, mean score for the sub- scale, and standard deviation pre- and postinstitu- tionalization. Paired t tests were performed to test for significant differences in reaction measures pre- and postinstitutionalization. Subscales that were significantly different at a .05 level before and following institutionalization are indicated on Table 2.

The second category of measures includes scales to assess more global mental health outcomes ex- perienced by individuals, regardless of whether or not these individuals occupy the caregiving role. A general measure of depression, the CESD-20, (Myers & Weisman, 1980) was used to assess de-

pression, and a sense of positive well-being was measured by use of an instrument developed by the Rand Corporation (Veit & Ware, 1983) to assess optimism and general life view. Both a measure of depression and a measure of positive well-being were included, based on the belief that these mea- sures, while highly correlated, do measure concep- tually distinct components of the concept of well- being.

The 20-item Center for Epidemiologic Studies Depression Scale (Myers & Weisman, 1980) used a four-point Like&response format. Items were prefaced with the statement, “During the past month, how much of the time . . .” and provided

Table 2. Preinstitutionalization and Postinstitutionalization Scores for Caregiver Reactions Inventory Subscales (n = 35)

Subscale Preinstitutionaliration Postinstitutionalization

Impact on schedule (n = 35)

Range

Mean

Standard deviation

Impact on finances (n = 35)

Range

Mean

Standard deviation

Impact on health (n = 35)

Range

Mean

Standard deviation

2.4-5.0 1.4-5.0

4.0 3.4x

.68 34

1 .o-5.0 1.0-5.0

2.8 3.0

1.1 1.0

1 .o-5.0 1.2-4.8

2.9 3.1

.8% .95

NOTE. Caregiver reactions inventory: 1, strongly disagree; 2, disagree; 3, neither agree nor disagree; 4, agree; 5, strongly agree.

l P < .05.

INSTITUTIONALIZATION 327

caregivers the following response options: Almost All of the Time, Most of the Time, Some of the Time, Rarely, or None of the Time.

The lo-item Positive Well-Being Scale from the Rand Corporation (Veit & Ware, 1983) was used to assess caregivers’ sense of optimism and global well-being. This scale used a four-point Likert re- sponse format with item response options and an item preface that were identical to those used for the CESD-20 depression scale. Items were de- signed to determine the degree to which the indi- vidual perceives herself or himself to be happy, calm, peaceful, cheerful, relaxed, and anticipating life as interesting and hopeful.

DESCRIPTION OF SAMPLE

The 35 individuals who institutionalized their relative during the course of this study were six men and 29 women. Their mean age was 58 years. The relationship of the caregiver to the institution- alized family member included equal numbers of spouses and adult children (n = 13 for each group) and nine other caregivers. The nine others included six daughters-in-law, one niece, one niece-in-law and one granddaughter-in-law. Sociodemographic characteristics of both caregivers and the relatives who were institutionalized are summarized in Ta- ble 3.

The involvement of caregivers following insti- tutionalization was summarized in terms of the fre- quency and duration of their visits to the institu- tionalized relative. Spouse caregivers reported spending significantly (P < .Ol) longer periods of time visiting the care recipient than did children or

Table 3. Sociodemographic Characteristics of Caregivers

and Institutionalized Relatives

Caregivers In = 35)

Institutionalized Relatives In = 35)

Sex Male

Female

Age

6 (17%) 12 (34%)

29 (83%) 23 (66%)

Mean

Range

Relationship

Spouse

Child

Other

58 yr 79 yr

45-71 yr 72-86 yr

13 137%)

13 137%)

9 (26%)

others, but the frequency of the visits did not differ significantly between groups. A significant differ- ence was observed in the number of dependencies reported for the care recipients before institution- alization. Spouses and adult children were caring for significantly more dependent (P < .04) rela- tives than were other caregivers.

The perceived health status of all institutional- ized elderly had significantly deteriorated between the pre- and postinstitutionalization measures, with no differences in the degree of deterioration of health reported for persons being cared for by spouse, child or other caregivers. The mean num- ber of patient dependencies at institutionalization and mean number of visits to the patient following institutionalization are summarized in Table 4.

ANALYSIS

Mean responses of caregivers to three categories of burden, depression, and positive well-being, both pre- and postinstitutionalization, are summa- rized in Table 5. In all instances, higher scores indicate a greater magnitude of the measured con- cept. Indications of statistical significance in Table 5 are all based on a significance level of .05 and indicate whether there is a significant difference between the spouse, adult child, and other relatives. Both before and after institutionalization, spouse caregivers reported more intense responses in all areas than did adult child and other caregivers.

A repeated measures analysis of variance with two sets of contrasts between spouse, adult child, and other caregivers was used to test for the fol- lowing questions: (1) Are there differences be- tween spouse caregivers versus adult child caregiv- ers and other caregivers (contrast l), and between spouse and adult child caregivers versus others (contrast 2) in levels of burden, depression, and well-being before institutionalization? (2) Do

Table 4. Mean Number of Patient Dependencies and Visits

Per Month by Relationship In = 35)

spouse hl = 131

Child hl = 13)

Other In = 91

Mean number

of patient

dependencies

Mean number of

visits to patient

per month

4.0 4.8 3.5

24.2 16.4 6.8

328 KING ET AL.

Table 5. Mean Scores on Reactions to Csreaivina Preinstitutionalization and Postinstitutionalization of Familv Member In = 35)

Preinditutionalization PoStinstitutionalization

spouse Child Other spouse Child Other In = 13) In = 13) (n = 91 hl = 13) (n = 13) In = 9)

Caregiver reactions inventory

Impact on schedule

Impact on finances

Impact on health

Mental health measures

Depression

Positive well-being

4.2 3.7 4.0 4.0” 3.3 3.1

3.0 2.7 2.7 3.5 2.6 2.8

3.4’ 2.6 2.6 3.6’ 2.5 2.9

1.1 .J .9 1.2* .J .a 1.0 2.6 2.2 2.01 2.6 2.7

NOTE. Caregiver reactions inventory, 1, strongly disagree; 2, disagree; 3, neither agree nor disagree; 4, agree; 6, strongly agree.

Mental health measures: 1, rarely; 2, some of the time; 3, most of the time; 4, almost all of the time.

l P < .05.

levels of burden, depression, and well-being change significantly following institutionalization? (3) Is the amount of change following institution- alization associated with the relationship of the caregiver and institutionalized family member? Each of these questions is addressed with an awareness of the limitations on significance testing imposed by small sample size. The methodological difficulties associated with obtaining large samples of caregivers who are in the process of institution- alizing family members and adjusting to that change requires that significance testing be viewed with caution and the potential value of mean dif- ferences between scores not be ignored.

Although all caregivers reported a significant decrease in perceived impact on schedule follow- ing institutionalization (P < .006), the decrease in perceived impact on schedule was significantly less for spouses (contrast 1, P < .03) than for adult child or other caregivers. The differences observed in spouse caregivers may be reflective of the greater amount of time that spouse caregivers re- ported spending with the care recipient following institutionalization.

No significant differences were observed be- tween categories of caregivers in relation to per- ceived impact on finances and changes pre- and postinstitutionalization were not found to be sig- nificant. It is interesting to note, however, in view of current legislative efforts to protect the assets of spouse caregivers who must institutionalize their spouse, that while the perceived impact on fi- nances for the adult child caregiver decreased fol- lowing institutionalization, the perceived financial impact both of spouses and of others increased.

The lack of statistical significance may be due to the small sample size.

The perceived impact of caregiving on the health of the caregiver was significantly greater for spouses than for adult child or other caregivers (P < .002), but the perceived impact on health did not change significantly for any of the caregiver categories following institutionalization.

Mean levels of depression are higher for spouse than for nonspouse caregivers (P < .Ol), both be- fore and following institutionalization. There was no significant decrease in depression following in- stitutionalization, although positive well-being was lower for spouses at all collection points than for adult child or other caregivers (P -=c .006).

CONCLUSIONS

It is important to be aware of several limitations when addressing conclusions from this analysis. The sample was small, predominantly female, and was not randomly selected, leading to perils in both significance testing and the generalizability of the findings. It is also worthy of note that these postinstitutionalization data were collected during the 6-month period immediately following place- ment of the relative, before the caregiver had ad- equate time for adjustment. Additionally, it is not known if these caregivers were anticipating that the duration of the institutional placement was to be permanent or temporary. These factors have bearing on the reactions expressed by the caregiv- ers to the institutionalization and would indicate the need for a more longitudinal follow-up on care- givers who place their relatives in nursing homes.

INSTlTUTlONALlZATlON

Spouse and other caregivers reported an increase

in stress related to their own health and finances following the institutionalization of their relative,

while adult child caregivers reported a decrease in stress in these areas. While not statistically signif-

icant, these findings would seem to support reports of Pratt et al. (1987) that sources of stress differ

following institutionalization. Few other refer- ences to changes in caregivers’ finances and daily

demands of caregiving over time could be located

in the literature. The reports in this sample of stable levels of

depression and slightly increased levels of positive

sense of well-being for all caregivers fail to vali-

date George and Gwyther’s (1984) supposition of decline in well-being immediately following in-

stitutionalization related to relinquishing of the caregiver role. Trends suggested by differences in

mean scores preinstitutionalization and postinstitu-

tionalization support Deimling and Poulshock (1985) in their observation that caregiving, whether in the home or within an institution, varies

according to the relationship to the impaired indi- vidual .

In summarizing these findings, it appears that

there is some decrease in burden for caregivers

after they have institutionalized their relative, but

only in some aspects of burden. Only the burden associated with perceived impact on schedule im-

proved for all caregivers following institutional

placement of their relative. At the same time, there were areas that become more intensely burden-

some for spouse and other caregivers after place-

ment of their relative.

It is apparent that, as documented in the litera-

ture by a number of researchers, caregiving does not cease at institutionalization (Bowers, 1988;

Montgomery, 1982; Smith & Bengston, 1979; To- bin & Lieberman, 1976). The time that caregivers

report spending with their relative after institution-

alization supports Bowers’s (1988) documentation of the continuation of caregiving following place- ment of the relative, especially for spouse caregiv- ers .

The reactions of this group of caregivers follow-

ing institutionalization of their relative serve to

point toward the need for increased attention to the experience of family members within institutional settings. During the period following placement of their relative, family caregivers are frequent visi-

tors to the institution. At this time, many of these

caregivers, especially spouses, experience high levels of depression and strain associated with their

own health status. Hansen et al. (1988) call for the creation of le-

gitimate roles for the family members of nursing

home residents within the institution and tested a

pilot program for enriching the environment of nursing home residents using family volunteers.

The family members who participated in this pro-

gram reacted positively to the opportunity to do

something productive within the nursing home and

expressed a sense of shared caregiving with the

institutional staff. A series of workshops that stresses increased

understanding of the aging process and communi-

cation for family members of nursing home resi-

dents was reported on by Shulman and Mandel (1988) who observed that families desperately

sought the opportunity for information and coping skills. Participants in these workshops were found

to report increased satisfaction with nursing home

visits and more positive relationships with their institutionalized relative.

Riddick (1987), in a report on the impact of an

elderly relative’s admission to a nursing home on

family caregivers, supports orientation and in-

service training efforts for nursing home staff, which will facilitate the adjustment of both the

caregiver and the individual who has been institu-

tionalized. Included in Riddick’s report is a call for mechanisms within nursing homes that solicit fam-

ily input regarding the nursing home environment

and for research on the efficacy of pre- and post-

nursing home admission counseling on the mental

health of family caregivers.

Much remains to be learned about the effects of

institutionalizing an elderly relative for whom a

family member has been providing care. The role

of the family caregiver clearly changes and the act

of institutionalization has an impact on the family caregiver as well as on the relative who enters an institution for care. As Elaine Brody ( 1986) states

most eloquently, “Families will continue to expe-

rience strain, to worry, to be upset, and to be sad.

They will be anxious about their own aging. They will inevitably (and often legitimately) find things to complain about in the nursing home. They will feel guilt and sorrow. But the task of social policy and of nursing homes is to mitigate such pain to the

330 KING ET AL.

fullest possible extent, rather than to exacerbate an

intrinsically painful situation. ”

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