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Review and analysis of caregiver burden and nursing home placement
Review and Analysis of Caregiver Burden and Nursing Home Placement The multiple problems and variables affecting the caregiving relationships require multiple approaches and interventions. BY
MARGARET
C.
CHENIER
Research studies published between 1989 and 1995 were analyzed to identify variables that led to caregiver burden and nursing home placement of nondemented elders. Although the variables impact each caregiving situation differently, decreased functional abilities of the care receive~ interrupted sleep of the caregive~ or the presence of multiple factors within the caregiving situation were positively correlated with caregiver burden and increased risk of nursing home placement. Increased awareness of these issues is essential to provide successfully for the aging population. Health care professionals should assess for these factors and plan interventions. Further research is needed to better meet the needs of the elderly caregiver and care receiver. (Geriatr Nurs 1997;18:121-6) he technologic advances of the 20th century have significantly increased the individual life span and have T had a direct impact on the health care system in this country. A rise in chronic disease and an increased need for informal caregiving in the home have accompanied this longer life span. Although the economic and quality-oflife benefits in caring for the frail or chronically ill elder in the home have been validated, caregiving can be difficult and burdensome for the caregiver. A review of the literature reveals varied opinions regarding what aspects of the caregiving situation create burden. Research studies have examined the relationship between various care receiver and caregiver characteristics and the development of caregiver burden. Some of these variables include de-
MARGARET C. CHENIER, RN, BSN, MS, is an assistant professor, adjunct, at Sullivan County Community College in Loch Sheldrake, New York. Copyright © I997 by Mosby-Year Book, Inc. 0197-4572/97/$5.00 + 0 3411176493
GERIATRICNURSING Volume18, Nurnber3
creased functional abilities of the care receiver, 14 age of caregiver, 1,6,7 and sex of caregiverl,3,8-1°(Table 1). Regardless of the burdensome nature of caregiving, nursing home placement is a difficult decision for both the caregiver and the care receiver. Research studies have identified variables that influence nursing home placement. Some of these variables included living arrangements2,1°-13; severity of symptoms, diminished functioning, and growing number of tasks2,4,5,13-15; and increased age of caregiver or care receiver2,1°,12IT(Table 1). Studies also addressed the relationship between caregiver burden and nursing home placement. 15,18,19
Caregivers vary in the degree of caregiver burden that they experience when caring for a frail elder. Caregivers vary in the degree of caregiver burden that they experience when caring for a frail elder. It has not been clear which specific aspects or characteristics of the caregiving situation lead to burden or affect caregiver burden. It has also been unclear which areas of caregiving are hardest for individual caregivers and most affect their health or well-being. The purpose of this article is to review and analyze the research studies that examined factors or variables that led to caregiver burden, as well as research studies that examined risk factors in nursing home placement for the nondemented, frail elderly population. The analysis yields data that identify the caregiv-
Chenier 121
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all caregivers. ,urden varies with diagnosis.
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home placement. ire. Compared eft nd psychological prob-
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SpoUse CaregiVing was identified as:.major zatiOn rate:' .... ~ , a n d MANOVA- Caregiving resulted in de;~regiVers; overall heaith problems for 21% i7%i Daughters had highest burden Score
May/June 1997 GERIATRICNURSING
ing variables correlated with the development of caregiver burden and the variables that are most likely to lead to nursing home placement.
excluded in this analysis. Only research studies that were reported in the literature between 1989 and 1995 were included.
Definitions
Results
For the purposes of this article, caregiver burden includes the number of tasks performed, restricted social contact, deteriorating physical or mental health, and the subjective feeling of stress or strain caused by the caregiving situation. Restricted social contact includes decreased communication and visits with family members and friends, as well as attending few, if any, social func, tions or gatherings outside the home. The physical demands or stress of caregiving can lead to or exacerbate physical illness. Caregiving can also lead to high levels of anxiety or depression in the caregiver. Sometimes caregivers are so involved in the caregiving that they neglect their own physical and mental well-being. The primary caregiver is the person, usually a spouse in this analysis, who provides most assistance to maintain the frail elder in the home. The care receiver or frail elder is a person who is at least 60 years old "and who needs assistance to live independently due to some type of disability. ''2° Formal services will include any paid home care services, as well as community services such as respite and hospice care and adult day care.
A critical analysis and comparison of the caregiving literature is very difficult because few studies examined the same sets of variables or hypotheses. Additionally, some studies used large samples from longitudinal studies and broad geographic areas whereas other studies used convenience samples from small geographic areas. Some studies did not identify the familial relationship be, tween the care receivers and caregivers. This complicates the interpretation and application of findings. However, the research literature supports the concept that caregiving is burdensome. Although caregiving can negatively impact the caregiver's sense of well-being and physical and mental health, Wilson, a2 Draper et al., 23 and Gaynor 6 identified some positive effects of caregiving. Some caregivers reported better relationships with their care receivers, 23 whereas others experienced a sense of satisfaction in being able to meet their spouses' needs. 6,23 The caregiving tasks performed varied with the elder's disability and the relationship between the caregiver and care receiver. Continuous supervision or worry about the care receiver, 21,22 interrupted sleep, 22 and lack of time for self or social and leisure activities also contributed to the development of caregiver burden. ~°,2224 Given et a l . y LaLonde and Kasprzyk, 7 Miller et al., 9 and others generally agreed that the level of impairment of activities of daily living (ADL) and instrumental activites of daily living (IADL) was significantly correlated with the development of caregiver burden 3,24,26 (Table 1). Caregiving also had a negative effect on the health of the caregivers.3,6,22,23,26-28 Age. Increasing age of the caregiver was another vari-able correlated with increased burden. 7,a5,26 Gaynor 6 identified greater physical burden in caregivers older than age 54 and greater emotional burden in those caregivers younger than age 54 (Table 2). Furthermore, Jutras and Veilleux 26 urged more services to support the older caregiver to prevent caregiver burden. Burden and nursing home placement. Caregiving is a stressor with which the caregiver can have difficulty coping on a long-term basis. In this analysis, only three'. studies 15,Is,19 specifically addressed the relationship between the phenomenon of caregiver burden and nursing home placement. Each study identified a positive correlation between these two variables. In their study, Miller and McFall 4 indirectly correlated caregiver burden with nursing home placement. They demonstrated that caregiver burden led to increased use of formal services and the use of formal services was re-. lated to nursing home placement. Boaz and Mullerl9 referred to the "physical burden" of caregiving as a factor in nursing home placement, and Browning and Schwirian 18 stated that overwhelming caregiver burden may lead to nursing home placement. The literature credits caregivers as being instrumental in preventing or postponing nursing home placement.* "Spouses provide the
Sometimes caregivers are so involved in the caregiving that they neglect their own physical and mental, well-being. Method To gather sufficient data for the analysis, the author did a Medline search for the variables that can lead to caregiver burden and nursing home placement: decreased functional abilities of the care receiver, age and sex of the caregiver or care receiver, number of tasks, and income. Additionally, a manual search of the Social Sciences Index, the Cumulative Index to Nursing and Allied Health Literature, and the reference lists of all reviewed studies was conducted. Only studies examining caregiver burden (stress or strain) or variables that influence nursing home placement were included in the analysis. Sample criteria for inclusion in this analysis were as follows: care receiver was at least 60 years and required assistance to remain at home because of a chronic, long-term, nondementing illness, and caregivers were the primary caregiver, usually the spouse, for the frail elder. Consequently, caregiver burden studies with fewer than 40% spouse caregivers were eliminated. Similarly, studies that focused on dementia-related problems were also
GERIATRIC NURSING Volume 18, Number 3
Chenier 123
Regression analysis. Identified having 6 to 7 ADL impairments, physical caregiver burden, sleep interruption, or inability to leave care receiver alone as causes of caregiver attrition, resulting in nursing home placement or institutionalization for half of care receivers. Factor analysis and ANOVA. Caregiver burden varies with diagnosis. More burden with mental impairment ~urden may lead to nurs; having an in-home =ite, female, or a nonnts and cognitive impair-
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ursing home placement predictors in outside mobility, impaired ADLs, low inJ-old, and previous nursing home stay, rives. Caregiver burden was not home lurden, il-
59
Not specified pai~ment, and past nursing home placement. Presence of a combination of risk factors further increased risk of nursing home placement. Having a spouse or placement risk. Not specified:
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;e, ADL impairment, cognitive impairment, MCA home use, living alone, unmarried status; low d having fewer children were associated with
nursing home placemenL Single and multiple variable analysis and logistic regression. Significant predictors md older, 1 or more ADL impairments, poor alone. Low income was only significant with
No data
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124
Chenier
May/June 1997 G E R I A T R I C N U R S I N G
most consistent and dependable care, and they resist in- Discussion stitutional placement of the disabled elderly for a longer Caregiving is an intense and complicated activity. The period of time than nonspouse caregivers regardless of amount and type of caregiving required and given varies the level of disability, v3 McFall and Miller 15 also found from one caregiving dyad to another. ADL and IADL imspousal caregivers less likely to place their spouses in pairments3,7,9.24-26 and increased age of the carenursing homes. giver 6,7,a5,26 were correlated with caregiver burden. The Sex. Although a larger proportion of women than men continuous demands of caregiving and the lack of perreside in nursing homes, sex alone should not be consid- sonal time for the caregiver 2°,22-24 also led to caregiver ered a risk factor for nursing home placement. 1°,14,~7 The burden. ADL t and IADL 2,15,29 impairments, white greater percentage of female nursing home residents was race, 2,13-16,29,3° living alone, 1M3,16,29,3° and caregiver a reflection of women's longer life span. Chronic ill- burden 15,18,~9 were correlated with nursing home placenesses, increased likelihood of being widowed, and de- ment. Clearly, the need to support the caregiving dyad is creased ability to function independently rather than sex great. The multiple problems and variables affecting the alone increased the risk of nursing home placement. caregiving relationships require multiple approaches and Race. Being white was a consistent care receiver charinterventions. Nursing has a traditional focus on health acteristic that placed the frail elder at risk for nursing maintenance and health promotion, as well as expertise home placement. 2,13-16,29,3° The researchers were unsure in patient assessment. Consequently, nursing is well whether the reason for this was strictly cultural or qualified to assess the caregiving situation and, in conwhether this finding was evidence of a socioeconomic junction with the caregiving dyad, to identify and implebarrier to nursing home use. Miller et al. 31 believed that ment measures to prevent or minimize caregiver burden race alone could not explain this finding and that a "fuller and to postpone or avoid nursing h o m e placement. In array of social and health characteristics" needed to be their study, McFall and Miller 4 found that caregivers examined. Salvie et al. 3° and Wolinsky et al. 13 attributed waited too long to use formal services for them to be sucthis finding to cultural norms. Silverstein and Waite 32 cessful in preventing nursing home placement. This indiidentified increased social supports for elderly black pa- cates the need for both early and periodic needs tients as compared with elderly white patients. They also assessment and education regarding the availability and attributed "selective mortality" to decreasing the risk of importance of using both informal and formal services to nursing home placement for black patients. Selective assist and support the caregiver and the care receiver. Several other researchers also recommended assessing mortality results in a larger proportion of "hardy, selfthe needs of the caregiver and the caregiving dyad,* as sufficient" black patients surviving into old age whereas well as educating the caregiver. 6,18,21,23,25 If nursing is to frail black patients die younger than frail white patients. effectively meet the multiple needs of the caregiving Income. Findings of income as a reliable predictor of dyad, current and future nurses will need to be educated nursing home placement were conflicting. Greene and about the complexities of home care and the need to asOndrich 2 and Hanley 14 did not find income to be a sig- sess and support both the care receiver and caregiver. nificant factor in predicting placement. Salvie et al. 3° Planning for home care and evaluating the caregiver's found low income to be a risk factor for nursing home ability to assist the care receiver should begin in the hosplacement. When analyzing income as a single variable, pital. ;7 Gaynor 6 recommended involving the home careSteinbach 12 and Coughlin et al. 16 found that low income giver in hospital care and reinforcing the caregiver's was a risk. However, when analyzing income in combi- skills. Browning and Schwirian 18 also called for collabonation with other variables, low income was not a signif- ration between the hospital and home care services and icant predictor or risk factor in those studies. Foley et periodic assessment of the caregiving dyad by the home al. I° believed that low income was a risk for nursing health care nurse. A comprehensive home care plan may home placement because of the higher morbidity and dis- include the use of formal services to prolong home care and reduce burden, 18,2°-22,27 especially as the caregiver ability levels found in the poor. The findings of Jette et becomes older 26 or more frail. 4 Frequently, the caregiver al. 33 concerning income appear to be conflicting. Their may need information about the available services and study found low income to be a risk factor for the young- assistance in locating them. 6,7,24,26 Some researchers also old. They attributed this finding to the advocacy and the identified the value of counseling services 21,2224 and supassistance of hospital discharge planners and community port groups 18,2°'24 for the caregivers. care providers. They also identified high income to be a Additionally, many of the researchers called for more risk factor for the old-old. Because of the higher fees as- research § and changes in public policy 6,18,19,22,23 that will sociated with private pay and shorter life expectancy for support frail elders and their caregivers. Gaynor 6 called the old-old and, hence, shorter length of stay, they were for research to identify supportive services and programs, at greater risk for placement when compared with old-old whereas Given et al. 25 recommended research into specific interventions and their impact on continuing the of low or medium income.
* References 3,15,16,18,20,22,29.
GERIATRIC NURSING Volume 18, Number 3
t References 10,12-14,16,17,19,33. ;~ References 4,6, l 8,20,21,23,25,27. § References 5,6,8,15,21,22,25.
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caregiver role. Miller and Cafasso 8 stated that more theory-based research was needed to explain the findings. They also recommended research with more homogeneous groups and more studies to examine the differences between services that male and female caregivers provide. Stull et al. 5 recommended more research on the concept of caregiver burden and its effects, whereas McFall and Miller 15 called for research on caregiver burden, caregiving, and change in living arrangements. Greene and Ondrich 2 stated that high income could increase the probability of placement because of the ability to pay nursing home costs or decrease the probability of placement because of the ability to pay for home care. These conflicting findings, as well as those of Jette et al. 33 concerning the poor young-old and the rich old-old, warrant further study to develop appropriate services to meet the needs of the caregiving dyad.
Nurses need to collaborate with other health care professionals to support the quafity of life for both the frail elderly care receivers and their caregivers to effectively minimize the burden of caring and to reduce the risk of nursing home placement. As the focus of health care shifts from the hospital to the community and the proportion of elders continues to grow, the researchers have identified important roles for nurses as practitioners, educators, case mangers, advocates, and researchers. Nurses need to collaborate with other health care professionals to support the quality of life for both the frail elderly care receivers and their caregivers to effectively minimize the burden of caring and to reduce the risk of nursing home placement. The outcomes of successful collaboration should be improved quality of life for the elderly care receivers and their caregivers, decreased burden, and reduced risk of nursing home placement. •
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REFERENCES 1. Cafferata GL, Stone R. The caregiving role: dimensions of burden and benefits. Compr Gerontol Suppl A & B 1989;3:57-64. 2. Greene VL, Ondrich I. Risk factors for nursing home admissions and exits: a discrete-time hazard function approach. J Gerontol: Social Sciences 1990;45:$2505. 3. Miller B. Gender differences in spouse caregiver strain: socialization and role explanations. J Marriage and the Family 1990;52:311-21. 4. Miller BH, McFalI S. The effect of caregiver's burden on change in frail older persons use of formal helpers. J Health Soc Behav 1991;32:165-79. 5. Stull DE, Kosloski K, Kercher K. Caregiver burden and generic well-being: opposite sides of the same coin? Gerontologist 1994;34:88-94. 6. Gaynor SE. The long haul: the effects of home care on caregivers. Image: J Nurs Sch 1990;22(4):208-12. 7. LaLonde B, Kasprzyk D. Correlates of earegiver slraln in home health care. Home Health Care Serv Q 1993; 14(2/3)97-110. 8. Miller B, Cafasso L. Gender differences in caregiving: fact or artifact. Gerontologist 1992;32(4):498-507. 9. Miller B, McFall S, Montgomery A. The impact of elder health, caregiver involvement, and global stress on two dimensions of caregiver burden, J Gerontol 1991;46:$7-S19. 10. Foley D, Ostfetd A, Branch L, Wallace R, McGnin J, Comoni-Huntley J. The risk of nursing home/tdmission in three communities. J Aging Health 1992;4:155-73. 11. Newman SJ, Struyk R, Wright P, Rice M. Overwhelming odds: caregiving and the risk of institutionalization. J Gerontol Soc Sci 1990;45:$173-$183. 12. Steinbach U. Social networks, institutionalization, and mortality among elderly people in the United States. J Gerontol 1992;47:$183-$190. 13. Wolinsky F, Callahan C, Fitzgerald J, Johnson R. The risk of nursing home placement and subsequent death among older adults. J Gerontology 1992;47:$173-$182. 14. Hanley R, Alecxth L, Wiener J, Kennell, D. Predicting elderly nursing home admission. Res Aging 1990;12:199-228. 15. McFall S. Miller BH. Caregiver burden and nursing home admission of frail elderly persons. J Gerontol 1992;47:$73-$79. 16. Coughlin % McBride T, Liu K. Determinants of transitory and permanent nursing home admissions. Med Care 1990;26:616-31. 17. Weissert W, Cready C. Toward a model for improved targeting of aged at risk of institutionalization. Health Serv Res 1989;24:k~84-510. 18. Browning JS, Schwirian PW. Spousal caregivers' burden: impact of care recipient health problems and mental status. J Gerontol Nuts 1994;20(3):17-22. 19. Boaz R, Muller C. Why do some caregivers of disabled and frail elderly quit? Health Care Financing Rev 1991; 13(2):41-7. 20. Abraham PY, Berry ML. Needs of the family caregivers of frail elderly. Can J Public Health 1992;83:147-9. 21. Wallhagen, MI. Caregiving demands: their difficulty and effects on the wellbeing of elderly caregivers. Scholar Inq Nurs Pract 1992;6:111-27. 22. Wilson V. The consequences of elderly wives caring for disabled husbands: implications for practice. Social Work 1990;35:417-21. 23. Draper BM, Poulos CJ, Cole AM, Poulos RG, Ehrlich E A comparison of caregivers for elderly stroke and dementia victims. J Am Geriatr Soc 1992;40:896901. 24. Stalghi R Harvey S. Caregiver burden: a comparison between elderly women as primary and secondary caregivers for their spouses. J Gerontologic Social Work 1990;15:89-104, 25. Given B, Smmmel M, Collins D, King S, Given C. Response of elderly spouse caregivers. Res Nurs Health 1990;13:77-85. 26. Jutras S, Veilleux E Informal caregiving: correlates of perceived burden. Can J Aging 1991;10:40-55. 27. Bames CL, Given BA, Given CW. Caregivers of elderly relatives: spouses and adult children. Health Social Work 1992;17:282-9. 28. Young RE Kahana E. Specifying caregiver outcomes: gender and relationship aspects of caregiving strain. Gerontologist 1989;29:660-6. 29. Pearlman DN, Crown WH. Alternative sources of social support and their impacts on institutional risk. Gerontologist 1992;32:527-35. 30. Salvie M, Collins K, Foley D, George L. Predictors of nursing home admission in a biracial population. Am J Public Health 1993;83:1765-7. 31. Miller B, McFall S, Campbell RT. Changes in sources of community long-term care among African American and white frail older persons. J Gerontol Soc Sci 1994;49:S 14-$24. 32. Silverstein M, Wake LJ. Are blacks more likely than whites to receive and provide social support in middle and old age? Yes, no, and maybe so. J Gerontol Soc Sci 1993;48:$212-$222. 33. Jette AM, Branch LG, Sleeper LA, Feldman H, Sullivan LM. High-risk profiles for nursing home admission. Gerontologist 1992;32:634-40.
May/June 1997 GERIATRIC NURSING
MARGARET
C.
CHENIER
Research studies published between 1989 and 1995 were analyzed to identify variables that led to caregiver burden and nursing home placement of nondemented elders. Although the variables impact each caregiving situation differently, decreased functional abilities of the care receive~ interrupted sleep of the caregive~ or the presence of multiple factors within the caregiving situation were positively correlated with caregiver burden and increased risk of nursing home placement. Increased awareness of these issues is essential to provide successfully for the aging population. Health care professionals should assess for these factors and plan interventions. Further research is needed to better meet the needs of the elderly caregiver and care receiver. (Geriatr Nurs 1997;18:121-6) he technologic advances of the 20th century have significantly increased the individual life span and have T had a direct impact on the health care system in this country. A rise in chronic disease and an increased need for informal caregiving in the home have accompanied this longer life span. Although the economic and quality-oflife benefits in caring for the frail or chronically ill elder in the home have been validated, caregiving can be difficult and burdensome for the caregiver. A review of the literature reveals varied opinions regarding what aspects of the caregiving situation create burden. Research studies have examined the relationship between various care receiver and caregiver characteristics and the development of caregiver burden. Some of these variables include de-
MARGARET C. CHENIER, RN, BSN, MS, is an assistant professor, adjunct, at Sullivan County Community College in Loch Sheldrake, New York. Copyright © I997 by Mosby-Year Book, Inc. 0197-4572/97/$5.00 + 0 3411176493
GERIATRICNURSING Volume18, Nurnber3
creased functional abilities of the care receiver, 14 age of caregiver, 1,6,7 and sex of caregiverl,3,8-1°(Table 1). Regardless of the burdensome nature of caregiving, nursing home placement is a difficult decision for both the caregiver and the care receiver. Research studies have identified variables that influence nursing home placement. Some of these variables included living arrangements2,1°-13; severity of symptoms, diminished functioning, and growing number of tasks2,4,5,13-15; and increased age of caregiver or care receiver2,1°,12IT(Table 1). Studies also addressed the relationship between caregiver burden and nursing home placement. 15,18,19
Caregivers vary in the degree of caregiver burden that they experience when caring for a frail elder. Caregivers vary in the degree of caregiver burden that they experience when caring for a frail elder. It has not been clear which specific aspects or characteristics of the caregiving situation lead to burden or affect caregiver burden. It has also been unclear which areas of caregiving are hardest for individual caregivers and most affect their health or well-being. The purpose of this article is to review and analyze the research studies that examined factors or variables that led to caregiver burden, as well as research studies that examined risk factors in nursing home placement for the nondemented, frail elderly population. The analysis yields data that identify the caregiv-
Chenier 121
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all caregivers. ,urden varies with diagnosis.
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home placement. ire. Compared eft nd psychological prob-
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SpoUse CaregiVing was identified as:.major zatiOn rate:' .... ~ , a n d MANOVA- Caregiving resulted in de;~regiVers; overall heaith problems for 21% i7%i Daughters had highest burden Score
May/June 1997 GERIATRICNURSING
ing variables correlated with the development of caregiver burden and the variables that are most likely to lead to nursing home placement.
excluded in this analysis. Only research studies that were reported in the literature between 1989 and 1995 were included.
Definitions
Results
For the purposes of this article, caregiver burden includes the number of tasks performed, restricted social contact, deteriorating physical or mental health, and the subjective feeling of stress or strain caused by the caregiving situation. Restricted social contact includes decreased communication and visits with family members and friends, as well as attending few, if any, social func, tions or gatherings outside the home. The physical demands or stress of caregiving can lead to or exacerbate physical illness. Caregiving can also lead to high levels of anxiety or depression in the caregiver. Sometimes caregivers are so involved in the caregiving that they neglect their own physical and mental well-being. The primary caregiver is the person, usually a spouse in this analysis, who provides most assistance to maintain the frail elder in the home. The care receiver or frail elder is a person who is at least 60 years old "and who needs assistance to live independently due to some type of disability. ''2° Formal services will include any paid home care services, as well as community services such as respite and hospice care and adult day care.
A critical analysis and comparison of the caregiving literature is very difficult because few studies examined the same sets of variables or hypotheses. Additionally, some studies used large samples from longitudinal studies and broad geographic areas whereas other studies used convenience samples from small geographic areas. Some studies did not identify the familial relationship be, tween the care receivers and caregivers. This complicates the interpretation and application of findings. However, the research literature supports the concept that caregiving is burdensome. Although caregiving can negatively impact the caregiver's sense of well-being and physical and mental health, Wilson, a2 Draper et al., 23 and Gaynor 6 identified some positive effects of caregiving. Some caregivers reported better relationships with their care receivers, 23 whereas others experienced a sense of satisfaction in being able to meet their spouses' needs. 6,23 The caregiving tasks performed varied with the elder's disability and the relationship between the caregiver and care receiver. Continuous supervision or worry about the care receiver, 21,22 interrupted sleep, 22 and lack of time for self or social and leisure activities also contributed to the development of caregiver burden. ~°,2224 Given et a l . y LaLonde and Kasprzyk, 7 Miller et al., 9 and others generally agreed that the level of impairment of activities of daily living (ADL) and instrumental activites of daily living (IADL) was significantly correlated with the development of caregiver burden 3,24,26 (Table 1). Caregiving also had a negative effect on the health of the caregivers.3,6,22,23,26-28 Age. Increasing age of the caregiver was another vari-able correlated with increased burden. 7,a5,26 Gaynor 6 identified greater physical burden in caregivers older than age 54 and greater emotional burden in those caregivers younger than age 54 (Table 2). Furthermore, Jutras and Veilleux 26 urged more services to support the older caregiver to prevent caregiver burden. Burden and nursing home placement. Caregiving is a stressor with which the caregiver can have difficulty coping on a long-term basis. In this analysis, only three'. studies 15,Is,19 specifically addressed the relationship between the phenomenon of caregiver burden and nursing home placement. Each study identified a positive correlation between these two variables. In their study, Miller and McFall 4 indirectly correlated caregiver burden with nursing home placement. They demonstrated that caregiver burden led to increased use of formal services and the use of formal services was re-. lated to nursing home placement. Boaz and Mullerl9 referred to the "physical burden" of caregiving as a factor in nursing home placement, and Browning and Schwirian 18 stated that overwhelming caregiver burden may lead to nursing home placement. The literature credits caregivers as being instrumental in preventing or postponing nursing home placement.* "Spouses provide the
Sometimes caregivers are so involved in the caregiving that they neglect their own physical and mental, well-being. Method To gather sufficient data for the analysis, the author did a Medline search for the variables that can lead to caregiver burden and nursing home placement: decreased functional abilities of the care receiver, age and sex of the caregiver or care receiver, number of tasks, and income. Additionally, a manual search of the Social Sciences Index, the Cumulative Index to Nursing and Allied Health Literature, and the reference lists of all reviewed studies was conducted. Only studies examining caregiver burden (stress or strain) or variables that influence nursing home placement were included in the analysis. Sample criteria for inclusion in this analysis were as follows: care receiver was at least 60 years and required assistance to remain at home because of a chronic, long-term, nondementing illness, and caregivers were the primary caregiver, usually the spouse, for the frail elder. Consequently, caregiver burden studies with fewer than 40% spouse caregivers were eliminated. Similarly, studies that focused on dementia-related problems were also
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Regression analysis. Identified having 6 to 7 ADL impairments, physical caregiver burden, sleep interruption, or inability to leave care receiver alone as causes of caregiver attrition, resulting in nursing home placement or institutionalization for half of care receivers. Factor analysis and ANOVA. Caregiver burden varies with diagnosis. More burden with mental impairment ~urden may lead to nurs; having an in-home =ite, female, or a nonnts and cognitive impair-
,~ ~i~
of
ursing home placement predictors in outside mobility, impaired ADLs, low inJ-old, and previous nursing home stay, rives. Caregiver burden was not home lurden, il-
59
Not specified pai~ment, and past nursing home placement. Presence of a combination of risk factors further increased risk of nursing home placement. Having a spouse or placement risk. Not specified:
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;e, ADL impairment, cognitive impairment, MCA home use, living alone, unmarried status; low d having fewer children were associated with
nursing home placemenL Single and multiple variable analysis and logistic regression. Significant predictors md older, 1 or more ADL impairments, poor alone. Low income was only significant with
No data
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tatistically home Not specified ower body, and hospitalization or nursing home
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most consistent and dependable care, and they resist in- Discussion stitutional placement of the disabled elderly for a longer Caregiving is an intense and complicated activity. The period of time than nonspouse caregivers regardless of amount and type of caregiving required and given varies the level of disability, v3 McFall and Miller 15 also found from one caregiving dyad to another. ADL and IADL imspousal caregivers less likely to place their spouses in pairments3,7,9.24-26 and increased age of the carenursing homes. giver 6,7,a5,26 were correlated with caregiver burden. The Sex. Although a larger proportion of women than men continuous demands of caregiving and the lack of perreside in nursing homes, sex alone should not be consid- sonal time for the caregiver 2°,22-24 also led to caregiver ered a risk factor for nursing home placement. 1°,14,~7 The burden. ADL t and IADL 2,15,29 impairments, white greater percentage of female nursing home residents was race, 2,13-16,29,3° living alone, 1M3,16,29,3° and caregiver a reflection of women's longer life span. Chronic ill- burden 15,18,~9 were correlated with nursing home placenesses, increased likelihood of being widowed, and de- ment. Clearly, the need to support the caregiving dyad is creased ability to function independently rather than sex great. The multiple problems and variables affecting the alone increased the risk of nursing home placement. caregiving relationships require multiple approaches and Race. Being white was a consistent care receiver charinterventions. Nursing has a traditional focus on health acteristic that placed the frail elder at risk for nursing maintenance and health promotion, as well as expertise home placement. 2,13-16,29,3° The researchers were unsure in patient assessment. Consequently, nursing is well whether the reason for this was strictly cultural or qualified to assess the caregiving situation and, in conwhether this finding was evidence of a socioeconomic junction with the caregiving dyad, to identify and implebarrier to nursing home use. Miller et al. 31 believed that ment measures to prevent or minimize caregiver burden race alone could not explain this finding and that a "fuller and to postpone or avoid nursing h o m e placement. In array of social and health characteristics" needed to be their study, McFall and Miller 4 found that caregivers examined. Salvie et al. 3° and Wolinsky et al. 13 attributed waited too long to use formal services for them to be sucthis finding to cultural norms. Silverstein and Waite 32 cessful in preventing nursing home placement. This indiidentified increased social supports for elderly black pa- cates the need for both early and periodic needs tients as compared with elderly white patients. They also assessment and education regarding the availability and attributed "selective mortality" to decreasing the risk of importance of using both informal and formal services to nursing home placement for black patients. Selective assist and support the caregiver and the care receiver. Several other researchers also recommended assessing mortality results in a larger proportion of "hardy, selfthe needs of the caregiver and the caregiving dyad,* as sufficient" black patients surviving into old age whereas well as educating the caregiver. 6,18,21,23,25 If nursing is to frail black patients die younger than frail white patients. effectively meet the multiple needs of the caregiving Income. Findings of income as a reliable predictor of dyad, current and future nurses will need to be educated nursing home placement were conflicting. Greene and about the complexities of home care and the need to asOndrich 2 and Hanley 14 did not find income to be a sig- sess and support both the care receiver and caregiver. nificant factor in predicting placement. Salvie et al. 3° Planning for home care and evaluating the caregiver's found low income to be a risk factor for nursing home ability to assist the care receiver should begin in the hosplacement. When analyzing income as a single variable, pital. ;7 Gaynor 6 recommended involving the home careSteinbach 12 and Coughlin et al. 16 found that low income giver in hospital care and reinforcing the caregiver's was a risk. However, when analyzing income in combi- skills. Browning and Schwirian 18 also called for collabonation with other variables, low income was not a signif- ration between the hospital and home care services and icant predictor or risk factor in those studies. Foley et periodic assessment of the caregiving dyad by the home al. I° believed that low income was a risk for nursing health care nurse. A comprehensive home care plan may home placement because of the higher morbidity and dis- include the use of formal services to prolong home care and reduce burden, 18,2°-22,27 especially as the caregiver ability levels found in the poor. The findings of Jette et becomes older 26 or more frail. 4 Frequently, the caregiver al. 33 concerning income appear to be conflicting. Their may need information about the available services and study found low income to be a risk factor for the young- assistance in locating them. 6,7,24,26 Some researchers also old. They attributed this finding to the advocacy and the identified the value of counseling services 21,2224 and supassistance of hospital discharge planners and community port groups 18,2°'24 for the caregivers. care providers. They also identified high income to be a Additionally, many of the researchers called for more risk factor for the old-old. Because of the higher fees as- research § and changes in public policy 6,18,19,22,23 that will sociated with private pay and shorter life expectancy for support frail elders and their caregivers. Gaynor 6 called the old-old and, hence, shorter length of stay, they were for research to identify supportive services and programs, at greater risk for placement when compared with old-old whereas Given et al. 25 recommended research into specific interventions and their impact on continuing the of low or medium income.
* References 3,15,16,18,20,22,29.
GERIATRIC NURSING Volume 18, Number 3
t References 10,12-14,16,17,19,33. ;~ References 4,6, l 8,20,21,23,25,27. § References 5,6,8,15,21,22,25.
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caregiver role. Miller and Cafasso 8 stated that more theory-based research was needed to explain the findings. They also recommended research with more homogeneous groups and more studies to examine the differences between services that male and female caregivers provide. Stull et al. 5 recommended more research on the concept of caregiver burden and its effects, whereas McFall and Miller 15 called for research on caregiver burden, caregiving, and change in living arrangements. Greene and Ondrich 2 stated that high income could increase the probability of placement because of the ability to pay nursing home costs or decrease the probability of placement because of the ability to pay for home care. These conflicting findings, as well as those of Jette et al. 33 concerning the poor young-old and the rich old-old, warrant further study to develop appropriate services to meet the needs of the caregiving dyad.
Nurses need to collaborate with other health care professionals to support the quafity of life for both the frail elderly care receivers and their caregivers to effectively minimize the burden of caring and to reduce the risk of nursing home placement. As the focus of health care shifts from the hospital to the community and the proportion of elders continues to grow, the researchers have identified important roles for nurses as practitioners, educators, case mangers, advocates, and researchers. Nurses need to collaborate with other health care professionals to support the quality of life for both the frail elderly care receivers and their caregivers to effectively minimize the burden of caring and to reduce the risk of nursing home placement. The outcomes of successful collaboration should be improved quality of life for the elderly care receivers and their caregivers, decreased burden, and reduced risk of nursing home placement. •
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REFERENCES 1. Cafferata GL, Stone R. The caregiving role: dimensions of burden and benefits. Compr Gerontol Suppl A & B 1989;3:57-64. 2. Greene VL, Ondrich I. Risk factors for nursing home admissions and exits: a discrete-time hazard function approach. J Gerontol: Social Sciences 1990;45:$2505. 3. Miller B. Gender differences in spouse caregiver strain: socialization and role explanations. J Marriage and the Family 1990;52:311-21. 4. Miller BH, McFalI S. The effect of caregiver's burden on change in frail older persons use of formal helpers. J Health Soc Behav 1991;32:165-79. 5. Stull DE, Kosloski K, Kercher K. Caregiver burden and generic well-being: opposite sides of the same coin? Gerontologist 1994;34:88-94. 6. Gaynor SE. The long haul: the effects of home care on caregivers. Image: J Nurs Sch 1990;22(4):208-12. 7. LaLonde B, Kasprzyk D. Correlates of earegiver slraln in home health care. Home Health Care Serv Q 1993; 14(2/3)97-110. 8. Miller B, Cafasso L. Gender differences in caregiving: fact or artifact. Gerontologist 1992;32(4):498-507. 9. Miller B, McFall S, Montgomery A. The impact of elder health, caregiver involvement, and global stress on two dimensions of caregiver burden, J Gerontol 1991;46:$7-S19. 10. Foley D, Ostfetd A, Branch L, Wallace R, McGnin J, Comoni-Huntley J. The risk of nursing home/tdmission in three communities. J Aging Health 1992;4:155-73. 11. Newman SJ, Struyk R, Wright P, Rice M. Overwhelming odds: caregiving and the risk of institutionalization. J Gerontol Soc Sci 1990;45:$173-$183. 12. Steinbach U. Social networks, institutionalization, and mortality among elderly people in the United States. J Gerontol 1992;47:$183-$190. 13. Wolinsky F, Callahan C, Fitzgerald J, Johnson R. The risk of nursing home placement and subsequent death among older adults. J Gerontology 1992;47:$173-$182. 14. Hanley R, Alecxth L, Wiener J, Kennell, D. Predicting elderly nursing home admission. Res Aging 1990;12:199-228. 15. McFall S. Miller BH. Caregiver burden and nursing home admission of frail elderly persons. J Gerontol 1992;47:$73-$79. 16. Coughlin % McBride T, Liu K. Determinants of transitory and permanent nursing home admissions. Med Care 1990;26:616-31. 17. Weissert W, Cready C. Toward a model for improved targeting of aged at risk of institutionalization. Health Serv Res 1989;24:k~84-510. 18. Browning JS, Schwirian PW. Spousal caregivers' burden: impact of care recipient health problems and mental status. J Gerontol Nuts 1994;20(3):17-22. 19. Boaz R, Muller C. Why do some caregivers of disabled and frail elderly quit? Health Care Financing Rev 1991; 13(2):41-7. 20. Abraham PY, Berry ML. Needs of the family caregivers of frail elderly. Can J Public Health 1992;83:147-9. 21. Wallhagen, MI. Caregiving demands: their difficulty and effects on the wellbeing of elderly caregivers. Scholar Inq Nurs Pract 1992;6:111-27. 22. Wilson V. The consequences of elderly wives caring for disabled husbands: implications for practice. Social Work 1990;35:417-21. 23. Draper BM, Poulos CJ, Cole AM, Poulos RG, Ehrlich E A comparison of caregivers for elderly stroke and dementia victims. J Am Geriatr Soc 1992;40:896901. 24. Stalghi R Harvey S. Caregiver burden: a comparison between elderly women as primary and secondary caregivers for their spouses. J Gerontologic Social Work 1990;15:89-104, 25. Given B, Smmmel M, Collins D, King S, Given C. Response of elderly spouse caregivers. Res Nurs Health 1990;13:77-85. 26. Jutras S, Veilleux E Informal caregiving: correlates of perceived burden. Can J Aging 1991;10:40-55. 27. Bames CL, Given BA, Given CW. Caregivers of elderly relatives: spouses and adult children. Health Social Work 1992;17:282-9. 28. Young RE Kahana E. Specifying caregiver outcomes: gender and relationship aspects of caregiving strain. Gerontologist 1989;29:660-6. 29. Pearlman DN, Crown WH. Alternative sources of social support and their impacts on institutional risk. Gerontologist 1992;32:527-35. 30. Salvie M, Collins K, Foley D, George L. Predictors of nursing home admission in a biracial population. Am J Public Health 1993;83:1765-7. 31. Miller B, McFall S, Campbell RT. Changes in sources of community long-term care among African American and white frail older persons. J Gerontol Soc Sci 1994;49:S 14-$24. 32. Silverstein M, Wake LJ. Are blacks more likely than whites to receive and provide social support in middle and old age? Yes, no, and maybe so. J Gerontol Soc Sci 1993;48:$212-$222. 33. Jette AM, Branch LG, Sleeper LA, Feldman H, Sullivan LM. High-risk profiles for nursing home admission. Gerontologist 1992;32:634-40.
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