AREGIVERS OF ELDERLY RELATIVES: SPOUSES AND ADULT CHILDREN CARLA L. BARNES, BARBARA A. GIVEN, and CHARLES W. GIVEN A problem in the provision of home health care for elderly people is the limited number of family members available for caregiving. Current trends in federal, state, and local policy formation suggest an increasing emphasis on the family as an appropriate caregiver. Therefore, it is necessary to examine how family relationships affect the caregivers' responses to their caregiver situation. Data are presented from 206 caregivers enrolled in a larger longitudinal study of family members caring for elderly dependent relatives. The sample is divided into four caregiver groups: (1) spouses who have children, (2) spouses who have no children, (3) adult children who have siblings, and (4) adult children who have no siblings. Measures selected for comparison were perception of burden, caregiver involvement, affective social support, mental health status, and use of community services. Differences were found among the four groups of caregivers. Implications for social work intervention are discussed.
Approximately 80 percent of all elderly people in the United States have living adult children (Cicirelli, 1983), and approximately 40 percent of elderly people who are dependent and in need of care are cared for by their children. The remainder of these elderly people are usually cared for by their spouses (Stephens & Christianson, 1986). Current trends in federal, state, and local policy formation suggest an increasing emphasis on the family as the appropriate caregiver (Anastas, Gibeau, & Larson, 1990; 282
Archbold, 1982: Stone, 1986; Stone & Kemper, 1990). Future policy formation must consider the growing aging population in this country and the significantly declining birthrate. For instance, the proportion of one-child families has steadily increased and reached an all-time high of about 40 percent in the 1980s (Falbo, 1984). Given these shifts in population, a potential problem in the provision of home health care for elderly people is the limited number of family members available for caregiving. To
CCC Code: 0360-7283/92 $3.00 ©1992, National Association of Social Workers, Inc.
develop appropriate policy and services, it is necessary to examine how family relationships affect the caregivers' responses to their caregiving situation. It is well documented in the social work literature that the principal caregivers of elderly dependent family members are spouses, followed by adult children (Brody, 1981; Horowitz, 1985a). It is also well known that women are the predominant caregivers of elderly dependent family members: Wives assume the major caregiving responsibilities for their husbands, and daughters (including daughters-in-law) care for their elderly dependent parents (Barusch & Spaid, 1989; Brody, 1990; Cantor, 1983; Hooyman, 1990; Horowitz, 1985b; Stone & Kemper, 1990). Less is known about how the family constellation influences the experience and burden of caregiving. In particular, little attention is paid to adult child caregivers and their interaction with siblings in relation to caregiving for elderly parents (Brody, 1990; Brody, Hoffman, Kleban, & Schoonover, 1989), and even less is known about the impact of parental caregiving on adult children who have no siblings. One assumption found in the literature about adult children who provide care for their dependent mothers or fathers is that adult children without siblings experience caregiving relationships differently than do those who have siblings. For example, according to Hooyman and Lustbader (1986), an only child may find caregiving more burdensome than would an adult child caregiver with siblings because he or she has no one with whom to share caregiving responsibilities. Adult children with no siblings may be particularly vulnerable as parental caregivers because of emotionally close relationships to their parents, unresolved issues of independence, or role reversals that may occur (Staff, 1987). An area of inquiry that remains is to determine whether adult child caregivers with no siblings find caregiving more burdensome than do those with siblings. This study will explore whether there are differences between the two adult child caregiver groups. If the sharing of caregiving alleviates or lessens the burden for adult child caregivers with siblings, one also wonders whether spouse caregivers who have chilCAREGIVERS OF ELDERLY RELATIVES
dren to share responsibilities with or to support them may view caregiving as less burdensome than would those who have no children. Therefore, this study also addresses whether there are differences between the two spouse caregiver groups. Comparisons are also made among all four groups. An examination of how family relationships affect caregivers' responses to their caregiving situation could provide valuable information for social workers who are involved in the provision of direct services and in the development of policy.
METHOD Subjects The subjects were 206 primary caregivers who were participants in a larger longitudinal study of 307 family members caring for elderly dependent patients (Given & Given, 1986-1989). (Of the total study sample, 52 percent [n = 160] of the caregivers were spouses. Of the nonspouse caregivers, 70 percent [n = 103] were adult children, 25 percent [n = 37] were female in-laws, and 5 percent [n = 7] were a diverse group of distant relatives and companions.) Community public health and home care agencies recruited caregivers by distributing a single-page description of the study that explained the role of the caregiver, role of the patient, purpose and length of the study, and protection of subject information. Clipped to the sheet was a self-addressed, stamped postcard that asked for the client's name, address, and phone number and whether the client wanted to participate, needed more information about the study, or did not want to participate. No agency released names of clients to the project. Criteria for inclusion in the study were as follows: the care recipient had to be 64 years of age or older, the care recipient had to be dependent in two or more self-care activities, and the family member or caregiver had to be self-acknowledged as the primary caregiver for the care recipient. Trained interviewers, using a written script, conducted phone interviews with all of the caregivers. Details of the training are published elsewhere (Collins, Given, Given, & King, 1988). 283
Data presented were collected at intake and at six months. The subjects were divided into four groups: (1) spouse caregivers who have children (n = 114); (2) spouse caregivers who have no children (n = 13); (3) adult child caregivers who have siblings (n= 55); and (4) adult child caregivers who have no siblings (n = 24). Caregiver Characteristics
Selected characteristics of spouse and adult child caregivers are shown in Table 1. Spouses. The majority (76 percent, n = 97) of spouse caregivers were women with a mean age of 70.2 years (range, 52 to 84 years), and the average duration of care was 5.3 years. Their mean annual income was a little more than $19,000. The caregivers were well educated: 72 percent ( n = 91) were high school graduates, and 44 percent (n = 56) had attended college. No statistically significant differences were found between spouse caregivers with and without children. Children. The adult child caregivers were mainly daughters (89 percent, n = 70) with a
mean age of 56.8 years (range, 32 to 83 years). Slightly more than half (54 percent, n = 43) were married; 89 percent (n = 70) were high school graduates, and 67 percent (n = 53) had attended college. Average income was a little more than $26,000 per year. The majority (80 percent, n = 63) of the adult children lived with their elderly parents, and the average duration of caregiving was 5.6 years. No statistically significant differences were found between the adult child caregivers with and without children on these characteristics. The one statistically significant difference found between the groups was employment: 64 percent (n = 35) of the caregivers with siblings were unemployed, compared with 46 percent (n = 11) of the caregivers without siblings. Of those employed, 45 percent (n= 5) of the child caregivers without siblings and 25 percent (n = 5) of the caregivers with siblings were employed full-time [t (102) = .14497, p< .05]. Care Recipient Characteristics
Selected characteristics of spouse and parent care recipients are found in Table 2.
Table 1. Selected Characteristics of Caregiver Spouses and Caregiver Adult Children Caregiver Spouses (n = 127)
Characteristic Familial relationship Wife Husband Daughter Son Age (years) Mean Range Annual income Mean Range Living arrangement Living with parent Living with spouse Marital Status Married Education Attended college Graduated from high school Attended high school Attended grade school
Caregiver Children (n = 79)
76% 24% 89%
11% 70.2 52-84
$26,184 $4,500-$80,000 80%
44% 28% 18% 10%
67% 22% 8% 3%
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Spouses. The care recipients were mainly husbands (76 percent, n = 97) with a mean age of 70 years. Parents. No differences were found between the parents who had one child and those who had two or more children. The care recipients were mainly widowed mothers (91 percent, n = 72) who lived with their children and had a mean age of 83.5 years (range, 66 to 102 years). Their average annual income was less than $10,000. Measures
Twelve measures were selected for caregiver comparison. The instruments used measured perception of burden, caregiver involvement, affective social support, mental health status, and use of community services. All of the measures were rated on either a four-point Likert-type scale (4 = almost all the time, 3 = most of the time, 2 = some of time, and 1 = rarely or never) or a five-point Likert-type scale (5 = strongly agree, 4 = agree, 3 = neither agree or disagree, 2 = disagree, and 1 = strongly disagree). Perception of Burden. Six measures assessed at the caregivers' perception of burden:
1. "Financial impact of caregiving" measures the degree to which caregiving affected the caregiver's financial status and is made up of four items (for example, "My financial resources are adequate to pay for the things that are required for caregiving") (alpha = .72). 2."Impact of caregiving on caregiver's health" comprises five items that measure the extent of the physical burdens the caregiver experiences from caring for a dependent relative (for example, "It takes all my physical strength to care for [relative's name]") (alpha = .85). 3. "Impact of caregiving on schedule" consists of five items that measure the degree to which caregiving alters the caregiver's normal routine (for example, "I have to stop in the middle of my work or activities to provide care") (alpha = .81). 4. "Feelings of family abandonment" comprises six items and examines the caregiver's perceptions of other family members' involvement in caring for the elderly family member (for example, "It is very difficult to get help from my family in taking care of [relative's name]") (alpha = .87). 5. The role responsibility scale reflects the caregiver's beliefs about the personal importante of his or her caregiving role. It includes
Table 2. Selected Characteristics of Care Recipients
Familial relationship Wife Husband Mother Father Marital status Married Widowed Divorced Age (years) Mean Range Annual income Mean Less than $10,000 $10,000—$29,999 More than $30,000
CAREGIVERS OF ELDERLY RELATIVES
(n = 127)
24% 76% 80% 20%
4% 91% 5%
$19,196 72% 24% 4%
the degree to which caregivers want to care for their relative as well as the extent to which they feel obligated to care for their relative (for example, "I believe it is my responsibility to care for [relative's name]") (alpha = .88). 6. "Negative reaction to caregiving" represents a general psychological response by the caregivers on the ways that caregiving has affected their life and their future (for example, "I feel overwhelmed by the problems I have caring for [relative's name]") (alpha = .87). Caregiver Involvement. Caregiver involvement was defined as the frequency with which caregivers assisted their relatives with specific tasks. Two measures of caregiver involvement were chosen: (1) "caregiver involvement in activities of daily living" (ADL) measure, which consists of 10 items that focus on assisting the relative with bathing, dressing, toileting, eating, grooming, getting around the house, walking, getting in and out of bed, and controlling bowel and bladder (alpha = .90), and (2) "caregiver involvement in instrumental activities of daily living" (IADL) measure, which includes six items to assess caregiver involvement with shopping, laundry, housework, transportation, cooking, and cleaning (alpha = .78). Affedive Social Support. The affective social support scale measures the degree to which caregivers perceive that there are people who are available and helpful to them. Caregivers responded to questions such as, "I have close relationships that provide me with a sense of emotional security and well-being" (alpha = .88). Mental Health Status. Assessment of caregiver mental health status was made based on two scales: (1) the Positive Well-being Scale (Veit & Ware, 1983), which consists of 10 items (for example, "Have you been waking up feeling fresh and rested") (alpha = .92) and (2) the Center for Epidemiologic Studies Depression Scale (Radloff, 1977), which consists of 20 items (for example, "Have you feit that everything you did was an effort?") (alpha = .88). Use of Community Services. The last measure chosen for comparison was "utilization of services," which determined the number of instances a visiting nurse service, home compan286
ion service, chore or housekeeping service, or adult day care was used. RESULTS
A repeated-measures analysis of variance with family grouping and sibling and offspring status as independent variables and time period as a repeated measure was conducted for each of the 12 dependent measures. Total Group
No statistically significant differences were found among the four groups on the following five measures: financial impact of caregiving, caregiver involvement in ADL, impact of caregiving on schedule, positive well-being, and depression. Statistically significant differences were found on the other seven measures: impact on caregiver's health, feelings of family abandonment, caregiver role responsibility, negative reaction to caregiving, caregiver involvement in IADL, affective social support, and community services used. Caregiver Groups
Spouse Groups. No statistically significant differences were found between the spouse caregivers who had children and those who had no children. It is not surprising that differences were not found because of the small number of spouse caregivers with no children. Data from the two groups were combined for further analysis. Spouse Groups versus Adult Child Groups. Caregiving activities carried out by spouse caregivers compared with adult child caregivers had a greater negative impact on the spouse caregiver's health [1(1, 199) = 9.69, p < .02]. This result is expected because of the spouse caregiver age. Spouse caregivers reported having greater role responsibilities than did adult child caregivers [F(1, 200) = 6.20, p < .01], as well as greater IADL involvement [F(1, 193) = 3.75, p< .05). By virtue of being the spouse in a marriage of many years duration, the spouse may feel a greater obligation to perform the
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necessary role responsibilities. The IADL involvement can be viewed as an extension of responsibilities that spouses assumed prior to their husband's or wife's illness. Very few services were used by any of the caregivers. However, the most frequently used service, which was used mainly by the spouse caregivers, was a chore or housekeeping service (that is, people who washed walls and windows and performed other physical tasks that were difficult for the spouse caregivers to perform) [F(1, 200) = 3.81, p < .05]. All of the child caregivers had greater feelings of abandonment than did the spouse caregivers [R12, 199) = 9.44, p < .002]. It may be that spouses feel it is their role to care for their spouse or do not expect others to help and therefore that they feel less abandoned than do the child caregivers, at least initially. Adult Child Groups. Adult child caregivers with siblings expressed greater feelings of abandonment than did adult child caregivers without siblings [F(1,199) = 7.17, p< .008]. It would seem that caregivers who have siblings expect their siblings to share in parent care, and when this does not happen they feel abandoned. Adult child caregivers without siblings may be less apt to feel abandoned because they have fewer expectations that others are available to assist in caregiving activities. Another difference found between the two groups was that adult child caregivers with siblings had a greater negative reaction to caregiving than did those without siblings [R1, 199) = 3.83, p < .05]. Again, it appears that the burden of caregiving was left to one family member and not shared by the other siblings, which supports the feelings of abandonment that this group expressed. A third difference found between these two groups was that adult child caregivers without siblings feit a greater role responsibility over time compared with those with siblings [F(1, 200) = 6.32, p < .01]. It would seem that because there were no other family members, at least not siblings, adult child caregivers without siblings had to take on more responsibilities over time and thus were expressing that sense of responsibility. CAREGIVERS OF ELDERLY RELATIVES
All Caregiver Groups. Three measures were found to affect all caregivers over time. First, all caregivers reported a negative impact on health [F(1, 199) = 4.82, p < .03]. Second, all expressed receiving less affective support [R1, 197) = 6.40, p < .01]. Third, all expressed increased feelings of abandonment over time [F(1, 199) = 10.80, p< .001].
DISCUSSION The findings indicate that spouse caregivers are at greatest risk for health problems and role overload. These findings imply that special and immediate attention is needed by spouse caregivers early in their caregiving experience. Because of their spousal role and their advanced age, the impact of caregiving on caregiver spouses has initial as well as long-term negative effects on their health. The spousal role expands as the caregivers become more involved in IADL and as they feel a greater obligation to care for their spouse. A major implication for social work intervention is the necessity for an appraisal or needs assessment as early as possible to assist the couple, particularly the spouse caregiver, with caregiving plans. Ongoing supportive treatment for both the care recipient and caregiver, regular monitoring and periodic reassessment of the caregiving situation, and assistance in finding concrete community services are important. The data also indicate that adult child caregivers with siblings are at risk for feeling overburdened at the initial period of their caregiving activities. This group expressed the most negative feelings toward caregiving and the greatest feelings of abandonment. These negative feelings could be diminished or at least lessened by professional intervention. Social work interventions, such as conducting a preliminary needs appraisal, facilitating family meetings to encourage sibling involvement and to determine division of caregiving tasks, providing guidance, teaching coping strategies, suggesting ways to obtain various needed forms of assistance, and assisting in the development of needed community programs are potentially useful approaches to intervention. 287
It appears that over time adult child caregivers who have no siblings incur increased risk for poor health, feelings of abandonment, and lack of affective support. Caregiver role responsibility, along with the strain of caregiving and possibly the deterioration of the parent, increases. Social workers can assist this caregiver group by conducting periodic appraisals and by providing regular monitoring in anticipation of the caregiver's needs. Assisting in the suggestion or acquisition of specific services as the need arises, as well as offering anticipatory guidance and teaching coping strategies, are appropriate. The results of this research indicate that there are differences between spouse caregivers and adult child caregivers. Specific social work interventions could be helpful for such caregivers at particular points during the span of caregiving. About the Authors
Carla L. Barnes, PhD, ACSW, is Assistant Professor; Barbara A. Given, PhD, RN, FAAN, is Professor, College of Nursing; and Charles W. Given, PhD, is Professor, College of Human Medicine, Michigan State University, A109 Life Sciences Building, East Lansing, MI 48824-1317. This research is supported by grant no. 1 RO1 AG06584, "Caregiver Responses to Managing Elderly Patients at Home" funded by the National Institute on Aging. References
Anastas, J. W., Gibeau, J. L., & Larson, P. J. (1990). Working families and eldercare: A national perspective in an aging America. Social Work, 35,405-411. Archbold, P. (1982). An analysis of parent caring by women. Health Care Quarterly, 3(2), 5-10. Barusch, A. S., & Spaid, W. M. (1989). Gender differences in caregiving: Why do wives report greater burden? Gerontologist, 29, 667-676. Brody, E. M. (1981). Women in the middle and family help to older people. Gerontologist, 21, 471-480. Brody, E. M. (1990). Women in the middle: Their parent-care years. New York: Springer Press. 288
Brody, E. M., Hoffman, C., Kleban, M. H., & Schoonover, C. B. (1989). Caregiving daughters and their local siblings: Perceptions, strains, and interactions. Gerontologist, 29, 529-538. Cantor, M. H. (1983). Strain among caregivers: A study of experience in the United States. Gerontologist, 23, 597-604. Cicirelli, V. (1983). Adult children and their elderly parents. In T. H. Brubaker (Ed.), Family relationships in later life (pp. 31-46). Beverly Hills, CA: Sage Publications. Collins, C., Given, B., Given, C. W., & King, S. (1988). Interviewer training and supervision. Nursing Research, 37,122-124. Falbo, T. (1984). The single-child family. New York: Guilford Press. Given, C. W., & Given, B. A. (1986-1989). Caregiver igsponses to managing elderly patients at home (Year II Progress Report, Grant No. 1 ROl AG06584, funded by Health and Human Services, National Institute on Aging). Unpublished report. Hooyman, N. R. (1990). Women as caregivers of the elderly. In D. E. Biegel & A. Blum (Eds.), Aging and caregiving (pp. 221-241). Newbury Park, CA: Sage Publications. Hooyman, N., & Lustbader, W. (1986). Taking care: Supporting older people and their families.
New York: Free Press. Horowitz, A. (1985a). Family caregiving to the frail elderly. In C. Eisdorfer (Ed.), The annual review of gerontology and geriatrics (pp. 194-246). New York: Springer. Horowitz, A. (1985b). Sons and daughters as caregivers to older parents: Differences in role performance and consequences. Gerontologist, 25, 612-617. Radloff, L. S. (1977). The CESD-D scale: A selfreport depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401. Staff. (1987, May/June). Only children as caregivers. Parent Care: Resources to Assist Family Caregivers, p. 3. Stephens, S., & Christianson, J. (1986). Informal care of the elderly. Lexington, MA: Lexington Books. Stone, R. (1986). Aging in the eighties, age 65 years and over: Use of community services. Advancedata, 124, 108.
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Stone, R. I., & Kemper, P. (1990). Spouses and children of disabled elders: How large a con- stituency for long-term care reform? Milbank Quarterly, 67, 485-506. Veit, C. T., & Ware, J. E. (1983). The structure of psychological distress and well-being in gen-
eral populations. Journa/ of Consulting and Clinical Psychology, 51, 730-742. Accepted January 24, 1992
GERONTOLOGY FOR HEALTH PROFESSIONALS: A PRACTICE GUIDE Florence Safford and George 1. Krell, Editors More than 31 million people-12.6% of our population—are over age 65. As more people survive into advanced age, health practitioners must prepare for changes in family structure, social services, and health services. Gerontology for Health Professionals offers an interdisciplinary look at the knowledge, skins' , and attitudes required of gerontological practitioners. Contributions from social workers, health care administrators, nurses, and educators make it a book uniquely suited to the entire gerontological health care field. Social workers, senior center personnel, hospice workers, and others will appreciate this thorough examination of the complex process of agingand the complex process of serving this treasured segment of society. 192 pages $20.95 Item # 2189 ISBN # 0-87101-218-9 Send $23.95 each (includes $3.00 postage and handling) to NASW Distribution Center, P.O. Box 431, Annapolis JCT, MD 20701. For credit card orders, call 1.800-227-3590 or fax 301.206.7989. Make checks payable to NASW Press.
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