Copyright 1992 by The Gerontological Society of America The Cerontologist Vol.32, No. 4,541-545
In a multivariate study of 148 caregivers of chronically ill older persons, 22% of those caring for a continent senior reported that maintaining continence was a burden, and 75% of caregivers of incontinent seniors reported it as burdensome. The burden of maintaining urinary function was associated with lack of social support, time spent providing care, and care receiver's immobility. Caregivers' depressive symptoms were associated with perceived burden from providing care for urinary function, a confused care receiver, and post-stroke support. Key Words: Urinary incontinence, Caregiver burden, Immobility
Impact on Caregivers of Supporting Urinary Function in Noninstitutionalized, Chronically III Seniors1
Studies investigating caregivers of communitydwelling seniors with a variety of disabilities have documented adverse emotional, psychiatric, physiological, financial, and social consequences (George & Gwyther, 1986; Silliman et al., 1990; Zarit, Anthony, & Boutselis, 1987; Miller & Montgomery, 1990). Urinary incontinence (Ul) in the care receiver has been considered an important factor contributing to these problems in terms of its frequency and impact on the caregiver (Ory, Wyman, & Yu, 1986). Ul in an impaired senior has been associated with diminished quality of relationships with family and friends (Wyman, Harkins, & Fantl, 1990; Noelker, 1987), increased caregiver stress (Ory, Wyman, & Yu, 1986; Noelker, 1987), and perceived health deterioration of the caregiver (Noelker, 1987). However, the strength of association between Ul and caregiver distress and deterioration in health appeared to diminish when multivariate techniques were used to control for confounding factors (Ouslander et al., 1990; Kirshen & Novak, 1990; Noelker, 1987). We used multivariate techniques to examine the perceived consequences of caregiving in a group of caregivers providing services to impaired communitydwelling seniors. The purpose of this exploratory study was to examine: the burden imposed by Ul
compared with the burden associated with other care-receiver dependencies; factors associated with perceived urinary function burden; and the relative contribution of urinary function burden to caregivers' symptoms of depression or an adverse change in health since beginning caregiving. The conceptual framework chosen for this project was salutogenesis, developed by Antonovsky (1987). Salutogenesis is a variation of a more general stress response model and complements the familiar pathogenic model in that it examines how people stay well in addition to what makes people sick. Further, the concept permits one to view health status as a continuum rather than as a dichotomy (well vs ill). This approach may help explain the somewhat inconsistent findings of previous research on outcomes of potential stressors such as Ul. Methods
Sample Recruitment Programs providing services to chronically ill elderly persons in the St. Louis metropolitan area were contacted for cooperation in identifying caregivers. Participating programs included six senior centers, five adult day care centers, four caregiver support groups, three senior seminar programs, one geriatric clinic, and one hospice program. Questionnaires and preaddressed return envelopes were provided in bulk to one contact person at each site. The contact person then identified caregivers of older care receivers and distributed questionnaires to those persons willing to participate in the project. The contact person was asked to interpret caregiver as "anyone who helps in any way in the care of an elderly family member or friend." The survey instru-
1 This project was supported in part by grant AG-00302 from the National Institute on Aging. Address correspondence to Douglas K. Miller, MD, Division of Geriatric Medicine, St. Louis University Medical Center, 1402 S. Grand, Rm. M238, St. Louis, MO 63104. 2 Second-year resident, Department of Internal Medicine, Kansas University Medical Center, Kansas City, KS. 3 Geriatric Research, Education and Clinical Center, St. Louis Veterans Affairs Medical Center, St. Louis, MO. ••Division of Geriatric Medicine, St. Louis University Medical Center, St. Louis, MO. department of Community Medicine, St. Louis University Medical Center, St. Louis, MO.
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Joseph H. Flaherty, MD, 2 Douglas K. Miller, MD, 34 and Rodney M. Coe, PhD345
ment was identical across programs and did not indicate the social service involved in recruiting the caregiver respondent. Except for one home health care agency, we did not specify that questionnaires be given only to caregivers of elders with Ul. Respondents completed the questionnaires at home and returned them anonymously to the investigators. One hundred fifty-one questionnaires were returned, although 3 of these were completely blank. The remaining 148 questionnaires were usable. Because we could not determine the number of questionnaires distributed at each site, we were unable to determine the response ratio to any accurate extent.
sion using the BMDP statistical package was used to determine factors associated with dichotomous outcomes (perceived urinary function burden and adverse change in health since caregiving started). Stepwise multiple regression using SPSS/PC + was employed to identify factors associated with symptoms of depression as measured by the GDS. All multivariate analyses were performed twice for each dependent variable, first excluding variables for which the causal direction might be unclear and then again including these causally ambiguous variables.
Data Collection Program contact persons were requested to ask the caregiver to complete the questionnaire personally without help from anyone else. These instructions were repeated on the survey instrument itself. Information was requested regarding both the care receiver and caregiver. Data on the dependent person included presence of Ul, stroke, recent fracture, confusion, and Alzheimer's disease as well as use of assistive devices for walking. For example, items on Ul were: a dichotomous question about the presence of problems with urinary control; if yes, a question on the number of accidents per day; and an item asking respondents to rate the associated burden as a heavy burden, somewhat of a burden, or not a burden. Presence and associated burden for other problems were similarly tapped. Additional questions about the caregiver obtained the following information: sociodemographic characteristics; employment status; caregiver's ability in basic activities of daily living (ADLs) (Katz et al., 1963), shopping, and transportation (Spector et al., 1987); short form of the Geriatric Depression Scale (CDS) (Sheikh & Yesavage, 1986); relationship to the care receiver; living arrangements; length of time acting as caregiver; time per week spent assisting dependent person (categories ranged from a few hours per week to all day [continuous]); other informal and formal help being provided; desires for additional help; presence and impact on caregiving of personal health problems; and frequency of social contacts (assessed separately for family and friends/ neighbors). Care receiver daily functions assisted by the caregiver were assessed using the Katz scale for basic functions (Katz et al., 1963). Intermediate ADLs (Reuben & Solomon, 1989) were assessed by questions about the care receiver's need for help with shopping, transportation, errands, and medication management. General assistance was assessed by questions regarding need for companionship and "anything else." Data about the caregiver's visits to physicians, nights in hospital, and emergency room visits in the past 12 months were also collected.
Sample Characteristics Most respondents were white (88%, black 12%) and female (75%), averaged 12.3 years of education (SD = 2.6), lived with the care receiver (78%), and had spent 2 or more years in the caregiver role (50%). Primary caregivers were composed of spouses (39%), adult children (41%), other relatives (12%), and nonrelatives (9%). The majority (83%) of respondents spent most of the day or many times off and on during the day taking care of the dependent person. Nearly half did this without help of other family, but 79% did receive help from at least one formal agency, in part a function of the respondent identification process. The majority (54%) of caregivers reported no change in health since caregiving, 41% noted somewhat of a change, and 5% indicated a serious change had occurred. The mean number of daily activities with which the caregiver helped the dependent person was 2.1 of 5 basic ADLs (bathe, dress, toilet, transfer, and feed) and 2.7 of 4 intermediate ADLs.
Results
Table 1 presents the proportion of care receivers reported to have each of the investigated dependency problems as well as the caregiver's perceived burden for each problem. Confusion in general and Alzheimer's disease were highly prevalent and the most burdensome of the problem areas assessed. Two-fifths of caregivers reported that the care receiver had periods of incontinence. The most remarkable finding was the proportion of caregivers who reported that urinary function was a burden for them even though the care receiver was considered continent. Of 88 continent care receivers, 15 (17%) and 4 (5%) of the caregivers reported this as somewhat or a heavy burden, respectively. This phenomenon was rare with the other care receiver problem areas, even though the relevant questions were very similar except for the problem referents. Only in the categories of fall (1%), fracture (1%), and personal assistance to walk (8%) was burden reported in the absence of a problem and then much less frequently. To assess further whether respondents understood the questions regarding Ul, responses to questions about care receivers' difficulty controlling urine were cross-tabulated with frequency of urinary acci-
Statistical Procedures Means, medians, and proportions were determined in the usual fashion. Stepwise logistic regres542
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Reported Problem Prevalence and Associated Burdens
Table 2. Factors Significantly Associated with Caregiver's Perception of Burden from Maintaining Care Receivers' Urinary Function, from Final Step of Stepwise Logistic Regression
Table 1 . Care Receiver's Dependency Problems and Caregiver's Perceived Burden
Not a burden
Dependency problem Incontinence Yes (39%) No (61%)
25% 78%
Confusion Yes (80%) No (20%) Alzheimer's disease Yes (45%) No (55%)
Somewhat of a burden 54% 17%
A heavy burden
Model and significant variables A. Causally ambiguous variables excluded (burdened n = 49, nonburdened n = 69) Care receiver has incontinent episodes Frequency of visits from friends/neighbors (from almost every day to never) Caregiver assistance for lADLs (per IADL assisted)3
21% 5%
19% 100%
47% 0%
34% 0%
8% 100%
32% 0%
60% 0%
t
(43%) (57%)
15% 99%
60% 1%
25% 0%
Stroke Yes No
(19%) (81%)
22% 100%
48% 0%
30% 0%
Fracture Yes (11%) No (89%)
40% 99%
47% 1%
13% 0%
55% 8%
9% 0%
Needs personal assistance to walk 36% Yes (55%) 92% No (45%)
7.7** 1.7**
29.1*** 9.7* 0.14** 6.8* 6.2* 2.8**
a
IADL denotes intermediate activities of daily living. * p « .05; * * p « .01; ***p *s .001.
dent. In all 88 cases that we considered the care receiver continent, respondents either left the accident question blank or indicated 0, supporting the conclusion that misunderstanding of the question did not account for perceived burden in the absence of Ul per se.
Factors Associated with Urinary Function Burden Logistic regression was used to identify factors associated with any perceived burden from maintaining urinary function (either somewhat of a burden or a heavy burden) compared with no burden whether the care receiver was reported to be incontinent or not (Table 2). In the first step, independent variables entered in the analysis included characteristics of the caregiver, the care receiver, and the caregiving situation as well as the number of formal and other informal services assisting. Results are demonstrated in Table 3. Not surprisingly, the strongest predictor of burden from urinary function was urinary incontinence. A decrease in friends/neighbors' visits and intermediate ADLs also entered the explanatory equation. In the second step, the GDS and perceived burdens of care were added to the prior list of independent variables. Incontinent episodes remained the most important variable. Time spent helping the care receiver became statistically significant with an adjusted odds ratio of nearly 10. The care receiver's ability to use a wheelchair reduced perceived urinary burden, whereas care receiver's need for personal help to walk, caregiver's perception of burden from assisting walking, and caregiver's symptoms of depression were also associated with perceived urinary Vol. 32, No. 4,1992
16.7***
543
burden. Help from formal agencies was not significant in this equation. To gain further insight into the factors associated with perception of urinary function burden, the distribution of potentially important variables was examined separately for caregivers of incontinent and continent care receivers (Table 3). Small sample size and multiple testing limit the certitude with which one can draw conclusions; nevertheless, results suggested that reasons for perceived urinary function burden differed between the Ul groups. Although not all trends reached the commonly accepted level of statistical significance, it appeared that caregivers of incontinent care receivers were bothered particularly by lack of care-receiver mobility, those of continent care receivers were affected by the time and duration of caregiving, and depression was associated with perceived burden in both subgroups. Factors Associated with Change in Health When causally ambiguous variables were excluded, female gender (odds ratio [OR] 3.1, p = .02), time spent helping care receiver (from a few hours per week to all day/continuous; OR 5.7, p = .021), and help from other informal caregivers (64% reduction per additional group involved, p < .001) were associated with increased likelihood of experiencing an adverse health event. When causally ambiguous variables were included, only the GDS score (OR 3.1 per five positive answers, p = .000), burden of maintaining walking {OR 2.3, p = .03), and other informal help (63% reduction per additional group, p = .003) were associated with a reported adverse health event. Gender was no longer significantly associated with change in health status, probably due to confounding with depression symptoms (women aver-
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Fall Yes No
B. Causally ambiguous variables included (burdened n = 45, nonburdened n = 67) Care receiver has incontinent episodes Time spent helping care receiver (from a few hours per week to all day/continuous) Care receiver uses wheelchair Care receiver needs personal help to walk Maintaining walking is burden for caregiver Score on Geriatric Depression Scale (per 5 positive answers)
Odds ratio
Table 3. Characteristics of Caregiving Situation for Caregivers Burdened by Need to Maintain Care Receiver's Urinary Function, Separated by Continence Status of Care Receiver
Incontinent care receiver11
Characteristic of caregiving situation
Burdened by urinary function (n = 43)
Frequency of visits from friends/neighbors (% several times per week or more) Number of IADLsa assisted (0-4) Time spent caregiving (1-4 scale) Care receiver uses wheelchair (%) Care receiver needs personal help to walk (%)
23 2.5 3.5 26 71
Perceived burden of maintaining care receiver walking (%) Geriatric Depression Scale (1-15) Duration of caregiving situation (months)
66 5.8 37
Not burdened by urinary function (n = 14)
23 2.2 3.2 57* 100* 29** 3.5** 25
Continent care receiver Burdened by urinary function (n = 19)
Not burdened by urinary function (n = 69)
17 3.3 3.2 11 39
32 2.8 2.6 13 42
35 6.1 55
25 3.6 28**
a
IADLs denotes intermediate activities of daily living. *p ^ .10; **p =S .05.
Model and significant variables A. Causally ambiguous variables excluded (N = 91) Frequency of visits from friends or neighbors Care receiver uses wheelchair Amount of time spent helping care receiver R2 = 0.172 B. Causally ambiguous variables included {N - 88) Caregiver has noticed adverse change in health since starting caregiving Perceived burden from caring for urinary function Perceived burden from confused care receiver Care receiver uses wheelchair Perceived burden from post-stroke care R2 - 0.449
Beta
Discussion One of the most remarkable findings of this exploratory study was that the maintenance of urinary function was perceived as burdensome by some caregivers of disabled care receivers even though the dependent person did not experience urinary incontinent episodes. This phenomenon of perceived burden in the absence of a reported dependency problem was much stronger for urinary function than any other problem investigated. Although this may have resulted from respondents' misunderstanding of the questions, this seems unlikely because the phrasing of questions for all problem areas was the same except for referents, the terms used were no more technically demanding than the terms used for the other problem areas, and cross-tabulations among the urinary function questions suggested respondent understanding. From the perspective of salutogenesis, this finding could indicate that a "nonproblem" (e.g., continence) can still cause distress and needs to be assessed in a comprehensive evaluation. From a pathologic approach, a "nonproblem" would not be addressed at all. Although this study cannot be definitive, subgroup analyses suggested that reasons for urinary function burden differ depending on the Ul status of the care receiver. Caregivers of continent patients tended to express burden with greater time and duration of caregiving effort, whereas caregivers of incontinent care receivers appeared distressed if the care receiver lacked mobility. The latter finding is in agreement with the recent study by Kirshen and Novak (1990), which found that inclusion of the Barthel ADL index eliminated the significant association of Ul with caregiver burden. These results have implications for both research and clinical care. Research
•0.24* 0.24* 0.20*
0.38*** 0.25**
0.23** 0.21* 0.20*
*p*£ .05; * * p ^ .01; ***p « .001.
aged 4.9 depressive symptoms vs. 3.7 for men). At no time did urinary function variables enter either of these explanatory models. Factors Associated with Symptoms of Depression The number of positive responses on the short form GDS served as the continuous dependent variable. Results are displayed in Table 4. Fewer visits from friends or neighbors, providing care for a care receiver who uses a wheelchair, and amount of time spent helping care receiver were associated with more depressive symptoms in the caregivers. However, explained variance was not high. In the second step the factor most strongly associated with depressive symptoms was a change in caregiver's health, and caring for a care receiver who uses a wheelchair remained significant as well. In addition, the predic544
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tive equation included the perceived burdens from managing urinary function, caring for a confused care receiver, and assisting a care receiver recovering from a stroke.
Table 4. Variables Significantly Associated with Increased Scores on Geriatric Depression Scale for Caregivers, from Final Step of Stepwise Multiple Regression
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formed a number of analyses on a relatively small sample, so the results should be considered preliminary rather than definitive. We believe, however, that the results are interesting enough to be explored in additional studies with larger samples. References Antonovsky, A. (1987). Unraveling the mystery of health: How people manage stress and stay well. San Francisco: Jossey-Bass. Clipp, E.C.,& George, L. K. (1990). Psychotropic drug use among caregivers of patients with dementia. Journal of the American Geriatrics Society, 38, 227-235. George, L. K., & Gwyther, L. P. (1986). Caregiver well-being: A multidimensional examination of family caregivers of demented adults. The Gerontologist, 26, 253-259. Gilleard, C. J., Belford, H., Gilleard, E., Whittick, J. E., & Gledhill, K. (1984). Emotional distress amongst the supporters of the elderly mentally infirm. British Journal of Psychiatry, 145, 172-177. Katz, S., Ford, A. B., Moskowitz, R. W., Jackson, B. A., & Jaffe, M. W. (1963). Studies of illness in the aged. The index of ADL: A standardized measure of biological and psychosocial function. Journal of the American Medical Association, 185, 914-919. Kirshen, A. J., & Novak, M. (1990). Urinary incontinence in the elderly [Abstract]. The Gerontologist, 30(Suppl.), 5-6A. Miller, B., & Montgomery, A. (1990). Family caregivers and limitations in social activities. Research on Aging, 12, 72-93. Moritz, D. J., Kasl, S. V., & Berkman, L. F. (1989). The health impact of living with a cognitively impaired elderly spouse: Depressive symptoms and social functioning, journal of Gerontology, 44, S17-27. Noelker, L. S. (1987). Incontinence in elderly cared for by family. The Gerontologist, 27, 194-200. Ory, M. G., Wyman, J. F., & Yu, L. (1986). Psychosocial factors in urinary incontinence. Clinics in Geriatric Medicine, 2, 657-671. Ouslander, J. G., Zarit, S. H., Orr, N. K., & Muira, S. A. (1990). Incontinence among elderly community-dwelling dementia patients: Characteristics, management, and impact on caregivers. Journal of the American Geriatrics Society, 38, 440-445. Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583-594. Poulshock, S. W., & Deimling, G. T. (1984). Families caring for elders in residence: Issues in the measurement of burden. Journal of Gerontology, 39, 230-239. Reuben, D. B., & Solomon, D. H. (1989). Assessment in geriatrics: Of caveats and names. Journal of the American Geriatrics Society, 37, 570-572. Sheikh, J. I., & Yesavage, J. A. (1986). Geriatric Depression Scale (CDS): Recent findings and development of a shorter version. In T. L. Brink (Ed.), Clinical gerontology: A guide to assessment and intervention (pp. 165-173). New York: Haworth. Silliman, R. A., McGarvey, S. T., Raymond, P. M. ; & Fretwell, M. D. (1990). The Senior Care Study: Does inpatient interdisciplinary geriatric assessment help the family caregivers of acutely ill older patients? Journal of the American Geriatrics Society, 38, 461-466. Spector, W. D., Katz, S., Murphy, J. B., & Fulton, J. P. (1987). The hierarchical relationship between activities of daily living and instrumental activities of daily living. Journal of Chronic Disease, 40, 481-489. Vitaliano, P., Young, H. M., & Russo, J. (1991). Burden: A review of measures used among caregivers of individuals with dementia. The Gerontologist, 31, 67-75. Wyman, J. F., Harkins, S. W., & Fantl, J. A. (1990). Psychosocial impact of urinary incontinence in the community-dwelling population. Journal of the American Geriatrics Society, 38, 282-288. Zarit, S. H., Anthony, C. R., & Boutselis, M. (1987). Interventions with caregivers of dementia patients: Comparison of two approaches. Psychology of Aging, 2, 225-232.
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regarding the impact of "urinary incontinence" on caregiver stress needs to consider the influence of care-receiver immobility on caregiver perceptions. Clinically, health care providers cannot assume that the lack of reported urinary incontinence in the care receiver prevents the caregiver from the stress and strain of maintaining urinary function. Two other important findings were the deleterious effect of amount of time spent caregiving and the protective effect of social support networks. Similar to our findings, Moritz, Kasl, & Berkman (1989) reported that financial support from friends and relatives was associated with fewer depressive symptoms in husband-caregivers of cognitively impaired wives, and George and Gwyther (1986) found that caregiver burden was associated with perceived need for more social support. Contrary to our findings, however, a study by Gilleard et al. (1984) indicated that caregiver stress was associated with neither contact time nor other support, and another study by Clipp and George (1990) found no association between level of informal support for the caregiver and measures of burden. Symptoms of depression were associated with both perceived urinary function burden and adverse change in caregiver's health. The causal direction of these relationships is unclear (Poulshock & Deimling, 1984). However, from a clinical point of view, caregivers who express urinary function burden or experience a change in their own health are likely to be depressed as well. Providers should search for the presence of treatable affective disorder in such persons. The limitations of this study should be kept in mind. Although it is unknown how many of the questionnaires provided to contact persons were actually given to caregivers for completion, the response rate may have been relatively small. This could have introduced bias into the results. However, the finding that urinary function burden is perceived even in the absence of Ul is so strong that we doubt that it would have been altered significantly by a larger response rate. We did not measure caregiver burden in a global fashion but chose to measure perceived burden related directly to specific caregiving problems to gain greater specificity. It is possible that use of a global or "objective" measure would have found different results, but, on the other hand, the proper measurement of burden globally or objectively is far from settled (Pearlin et al., 1990; Vitaliano, Young, & Russo, 1991). We per-
In a multivariate study of 148 caregivers of chronically ill older persons, 22% of those caring for a continent senior reported that maintaining continence was a burden, and 75% of caregivers of incontinent seniors reported it as burdensome. The burden of maintaining urinary function was associated with lack of social support, time spent providing care, and care receiver's immobility. Caregivers' depressive symptoms were associated with perceived burden from providing care for urinary function, a confused care receiver, and post-stroke support. Key Words: Urinary incontinence, Caregiver burden, Immobility
Impact on Caregivers of Supporting Urinary Function in Noninstitutionalized, Chronically III Seniors1
Studies investigating caregivers of communitydwelling seniors with a variety of disabilities have documented adverse emotional, psychiatric, physiological, financial, and social consequences (George & Gwyther, 1986; Silliman et al., 1990; Zarit, Anthony, & Boutselis, 1987; Miller & Montgomery, 1990). Urinary incontinence (Ul) in the care receiver has been considered an important factor contributing to these problems in terms of its frequency and impact on the caregiver (Ory, Wyman, & Yu, 1986). Ul in an impaired senior has been associated with diminished quality of relationships with family and friends (Wyman, Harkins, & Fantl, 1990; Noelker, 1987), increased caregiver stress (Ory, Wyman, & Yu, 1986; Noelker, 1987), and perceived health deterioration of the caregiver (Noelker, 1987). However, the strength of association between Ul and caregiver distress and deterioration in health appeared to diminish when multivariate techniques were used to control for confounding factors (Ouslander et al., 1990; Kirshen & Novak, 1990; Noelker, 1987). We used multivariate techniques to examine the perceived consequences of caregiving in a group of caregivers providing services to impaired communitydwelling seniors. The purpose of this exploratory study was to examine: the burden imposed by Ul
compared with the burden associated with other care-receiver dependencies; factors associated with perceived urinary function burden; and the relative contribution of urinary function burden to caregivers' symptoms of depression or an adverse change in health since beginning caregiving. The conceptual framework chosen for this project was salutogenesis, developed by Antonovsky (1987). Salutogenesis is a variation of a more general stress response model and complements the familiar pathogenic model in that it examines how people stay well in addition to what makes people sick. Further, the concept permits one to view health status as a continuum rather than as a dichotomy (well vs ill). This approach may help explain the somewhat inconsistent findings of previous research on outcomes of potential stressors such as Ul. Methods
Sample Recruitment Programs providing services to chronically ill elderly persons in the St. Louis metropolitan area were contacted for cooperation in identifying caregivers. Participating programs included six senior centers, five adult day care centers, four caregiver support groups, three senior seminar programs, one geriatric clinic, and one hospice program. Questionnaires and preaddressed return envelopes were provided in bulk to one contact person at each site. The contact person then identified caregivers of older care receivers and distributed questionnaires to those persons willing to participate in the project. The contact person was asked to interpret caregiver as "anyone who helps in any way in the care of an elderly family member or friend." The survey instru-
1 This project was supported in part by grant AG-00302 from the National Institute on Aging. Address correspondence to Douglas K. Miller, MD, Division of Geriatric Medicine, St. Louis University Medical Center, 1402 S. Grand, Rm. M238, St. Louis, MO 63104. 2 Second-year resident, Department of Internal Medicine, Kansas University Medical Center, Kansas City, KS. 3 Geriatric Research, Education and Clinical Center, St. Louis Veterans Affairs Medical Center, St. Louis, MO. ••Division of Geriatric Medicine, St. Louis University Medical Center, St. Louis, MO. department of Community Medicine, St. Louis University Medical Center, St. Louis, MO.
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Joseph H. Flaherty, MD, 2 Douglas K. Miller, MD, 34 and Rodney M. Coe, PhD345
ment was identical across programs and did not indicate the social service involved in recruiting the caregiver respondent. Except for one home health care agency, we did not specify that questionnaires be given only to caregivers of elders with Ul. Respondents completed the questionnaires at home and returned them anonymously to the investigators. One hundred fifty-one questionnaires were returned, although 3 of these were completely blank. The remaining 148 questionnaires were usable. Because we could not determine the number of questionnaires distributed at each site, we were unable to determine the response ratio to any accurate extent.
sion using the BMDP statistical package was used to determine factors associated with dichotomous outcomes (perceived urinary function burden and adverse change in health since caregiving started). Stepwise multiple regression using SPSS/PC + was employed to identify factors associated with symptoms of depression as measured by the GDS. All multivariate analyses were performed twice for each dependent variable, first excluding variables for which the causal direction might be unclear and then again including these causally ambiguous variables.
Data Collection Program contact persons were requested to ask the caregiver to complete the questionnaire personally without help from anyone else. These instructions were repeated on the survey instrument itself. Information was requested regarding both the care receiver and caregiver. Data on the dependent person included presence of Ul, stroke, recent fracture, confusion, and Alzheimer's disease as well as use of assistive devices for walking. For example, items on Ul were: a dichotomous question about the presence of problems with urinary control; if yes, a question on the number of accidents per day; and an item asking respondents to rate the associated burden as a heavy burden, somewhat of a burden, or not a burden. Presence and associated burden for other problems were similarly tapped. Additional questions about the caregiver obtained the following information: sociodemographic characteristics; employment status; caregiver's ability in basic activities of daily living (ADLs) (Katz et al., 1963), shopping, and transportation (Spector et al., 1987); short form of the Geriatric Depression Scale (CDS) (Sheikh & Yesavage, 1986); relationship to the care receiver; living arrangements; length of time acting as caregiver; time per week spent assisting dependent person (categories ranged from a few hours per week to all day [continuous]); other informal and formal help being provided; desires for additional help; presence and impact on caregiving of personal health problems; and frequency of social contacts (assessed separately for family and friends/ neighbors). Care receiver daily functions assisted by the caregiver were assessed using the Katz scale for basic functions (Katz et al., 1963). Intermediate ADLs (Reuben & Solomon, 1989) were assessed by questions about the care receiver's need for help with shopping, transportation, errands, and medication management. General assistance was assessed by questions regarding need for companionship and "anything else." Data about the caregiver's visits to physicians, nights in hospital, and emergency room visits in the past 12 months were also collected.
Sample Characteristics Most respondents were white (88%, black 12%) and female (75%), averaged 12.3 years of education (SD = 2.6), lived with the care receiver (78%), and had spent 2 or more years in the caregiver role (50%). Primary caregivers were composed of spouses (39%), adult children (41%), other relatives (12%), and nonrelatives (9%). The majority (83%) of respondents spent most of the day or many times off and on during the day taking care of the dependent person. Nearly half did this without help of other family, but 79% did receive help from at least one formal agency, in part a function of the respondent identification process. The majority (54%) of caregivers reported no change in health since caregiving, 41% noted somewhat of a change, and 5% indicated a serious change had occurred. The mean number of daily activities with which the caregiver helped the dependent person was 2.1 of 5 basic ADLs (bathe, dress, toilet, transfer, and feed) and 2.7 of 4 intermediate ADLs.
Results
Table 1 presents the proportion of care receivers reported to have each of the investigated dependency problems as well as the caregiver's perceived burden for each problem. Confusion in general and Alzheimer's disease were highly prevalent and the most burdensome of the problem areas assessed. Two-fifths of caregivers reported that the care receiver had periods of incontinence. The most remarkable finding was the proportion of caregivers who reported that urinary function was a burden for them even though the care receiver was considered continent. Of 88 continent care receivers, 15 (17%) and 4 (5%) of the caregivers reported this as somewhat or a heavy burden, respectively. This phenomenon was rare with the other care receiver problem areas, even though the relevant questions were very similar except for the problem referents. Only in the categories of fall (1%), fracture (1%), and personal assistance to walk (8%) was burden reported in the absence of a problem and then much less frequently. To assess further whether respondents understood the questions regarding Ul, responses to questions about care receivers' difficulty controlling urine were cross-tabulated with frequency of urinary acci-
Statistical Procedures Means, medians, and proportions were determined in the usual fashion. Stepwise logistic regres542
The Gerontologist
Downloaded from http://gerontologist.oxfordjournals.org/ at University of Sussex on July 23, 2015
Reported Problem Prevalence and Associated Burdens
Table 2. Factors Significantly Associated with Caregiver's Perception of Burden from Maintaining Care Receivers' Urinary Function, from Final Step of Stepwise Logistic Regression
Table 1 . Care Receiver's Dependency Problems and Caregiver's Perceived Burden
Not a burden
Dependency problem Incontinence Yes (39%) No (61%)
25% 78%
Confusion Yes (80%) No (20%) Alzheimer's disease Yes (45%) No (55%)
Somewhat of a burden 54% 17%
A heavy burden
Model and significant variables A. Causally ambiguous variables excluded (burdened n = 49, nonburdened n = 69) Care receiver has incontinent episodes Frequency of visits from friends/neighbors (from almost every day to never) Caregiver assistance for lADLs (per IADL assisted)3
21% 5%
19% 100%
47% 0%
34% 0%
8% 100%
32% 0%
60% 0%
t
(43%) (57%)
15% 99%
60% 1%
25% 0%
Stroke Yes No
(19%) (81%)
22% 100%
48% 0%
30% 0%
Fracture Yes (11%) No (89%)
40% 99%
47% 1%
13% 0%
55% 8%
9% 0%
Needs personal assistance to walk 36% Yes (55%) 92% No (45%)
7.7** 1.7**
29.1*** 9.7* 0.14** 6.8* 6.2* 2.8**
a
IADL denotes intermediate activities of daily living. * p « .05; * * p « .01; ***p *s .001.
dent. In all 88 cases that we considered the care receiver continent, respondents either left the accident question blank or indicated 0, supporting the conclusion that misunderstanding of the question did not account for perceived burden in the absence of Ul per se.
Factors Associated with Urinary Function Burden Logistic regression was used to identify factors associated with any perceived burden from maintaining urinary function (either somewhat of a burden or a heavy burden) compared with no burden whether the care receiver was reported to be incontinent or not (Table 2). In the first step, independent variables entered in the analysis included characteristics of the caregiver, the care receiver, and the caregiving situation as well as the number of formal and other informal services assisting. Results are demonstrated in Table 3. Not surprisingly, the strongest predictor of burden from urinary function was urinary incontinence. A decrease in friends/neighbors' visits and intermediate ADLs also entered the explanatory equation. In the second step, the GDS and perceived burdens of care were added to the prior list of independent variables. Incontinent episodes remained the most important variable. Time spent helping the care receiver became statistically significant with an adjusted odds ratio of nearly 10. The care receiver's ability to use a wheelchair reduced perceived urinary burden, whereas care receiver's need for personal help to walk, caregiver's perception of burden from assisting walking, and caregiver's symptoms of depression were also associated with perceived urinary Vol. 32, No. 4,1992
16.7***
543
burden. Help from formal agencies was not significant in this equation. To gain further insight into the factors associated with perception of urinary function burden, the distribution of potentially important variables was examined separately for caregivers of incontinent and continent care receivers (Table 3). Small sample size and multiple testing limit the certitude with which one can draw conclusions; nevertheless, results suggested that reasons for perceived urinary function burden differed between the Ul groups. Although not all trends reached the commonly accepted level of statistical significance, it appeared that caregivers of incontinent care receivers were bothered particularly by lack of care-receiver mobility, those of continent care receivers were affected by the time and duration of caregiving, and depression was associated with perceived burden in both subgroups. Factors Associated with Change in Health When causally ambiguous variables were excluded, female gender (odds ratio [OR] 3.1, p = .02), time spent helping care receiver (from a few hours per week to all day/continuous; OR 5.7, p = .021), and help from other informal caregivers (64% reduction per additional group involved, p < .001) were associated with increased likelihood of experiencing an adverse health event. When causally ambiguous variables were included, only the GDS score (OR 3.1 per five positive answers, p = .000), burden of maintaining walking {OR 2.3, p = .03), and other informal help (63% reduction per additional group, p = .003) were associated with a reported adverse health event. Gender was no longer significantly associated with change in health status, probably due to confounding with depression symptoms (women aver-
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Fall Yes No
B. Causally ambiguous variables included (burdened n = 45, nonburdened n = 67) Care receiver has incontinent episodes Time spent helping care receiver (from a few hours per week to all day/continuous) Care receiver uses wheelchair Care receiver needs personal help to walk Maintaining walking is burden for caregiver Score on Geriatric Depression Scale (per 5 positive answers)
Odds ratio
Table 3. Characteristics of Caregiving Situation for Caregivers Burdened by Need to Maintain Care Receiver's Urinary Function, Separated by Continence Status of Care Receiver
Incontinent care receiver11
Characteristic of caregiving situation
Burdened by urinary function (n = 43)
Frequency of visits from friends/neighbors (% several times per week or more) Number of IADLsa assisted (0-4) Time spent caregiving (1-4 scale) Care receiver uses wheelchair (%) Care receiver needs personal help to walk (%)
23 2.5 3.5 26 71
Perceived burden of maintaining care receiver walking (%) Geriatric Depression Scale (1-15) Duration of caregiving situation (months)
66 5.8 37
Not burdened by urinary function (n = 14)
23 2.2 3.2 57* 100* 29** 3.5** 25
Continent care receiver Burdened by urinary function (n = 19)
Not burdened by urinary function (n = 69)
17 3.3 3.2 11 39
32 2.8 2.6 13 42
35 6.1 55
25 3.6 28**
a
IADLs denotes intermediate activities of daily living. *p ^ .10; **p =S .05.
Model and significant variables A. Causally ambiguous variables excluded (N = 91) Frequency of visits from friends or neighbors Care receiver uses wheelchair Amount of time spent helping care receiver R2 = 0.172 B. Causally ambiguous variables included {N - 88) Caregiver has noticed adverse change in health since starting caregiving Perceived burden from caring for urinary function Perceived burden from confused care receiver Care receiver uses wheelchair Perceived burden from post-stroke care R2 - 0.449
Beta
Discussion One of the most remarkable findings of this exploratory study was that the maintenance of urinary function was perceived as burdensome by some caregivers of disabled care receivers even though the dependent person did not experience urinary incontinent episodes. This phenomenon of perceived burden in the absence of a reported dependency problem was much stronger for urinary function than any other problem investigated. Although this may have resulted from respondents' misunderstanding of the questions, this seems unlikely because the phrasing of questions for all problem areas was the same except for referents, the terms used were no more technically demanding than the terms used for the other problem areas, and cross-tabulations among the urinary function questions suggested respondent understanding. From the perspective of salutogenesis, this finding could indicate that a "nonproblem" (e.g., continence) can still cause distress and needs to be assessed in a comprehensive evaluation. From a pathologic approach, a "nonproblem" would not be addressed at all. Although this study cannot be definitive, subgroup analyses suggested that reasons for urinary function burden differ depending on the Ul status of the care receiver. Caregivers of continent patients tended to express burden with greater time and duration of caregiving effort, whereas caregivers of incontinent care receivers appeared distressed if the care receiver lacked mobility. The latter finding is in agreement with the recent study by Kirshen and Novak (1990), which found that inclusion of the Barthel ADL index eliminated the significant association of Ul with caregiver burden. These results have implications for both research and clinical care. Research
•0.24* 0.24* 0.20*
0.38*** 0.25**
0.23** 0.21* 0.20*
*p*£ .05; * * p ^ .01; ***p « .001.
aged 4.9 depressive symptoms vs. 3.7 for men). At no time did urinary function variables enter either of these explanatory models. Factors Associated with Symptoms of Depression The number of positive responses on the short form GDS served as the continuous dependent variable. Results are displayed in Table 4. Fewer visits from friends or neighbors, providing care for a care receiver who uses a wheelchair, and amount of time spent helping care receiver were associated with more depressive symptoms in the caregivers. However, explained variance was not high. In the second step the factor most strongly associated with depressive symptoms was a change in caregiver's health, and caring for a care receiver who uses a wheelchair remained significant as well. In addition, the predic544
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tive equation included the perceived burdens from managing urinary function, caring for a confused care receiver, and assisting a care receiver recovering from a stroke.
Table 4. Variables Significantly Associated with Increased Scores on Geriatric Depression Scale for Caregivers, from Final Step of Stepwise Multiple Regression
Vol. 32, No. 4,1992
formed a number of analyses on a relatively small sample, so the results should be considered preliminary rather than definitive. We believe, however, that the results are interesting enough to be explored in additional studies with larger samples. References Antonovsky, A. (1987). Unraveling the mystery of health: How people manage stress and stay well. San Francisco: Jossey-Bass. Clipp, E.C.,& George, L. K. (1990). Psychotropic drug use among caregivers of patients with dementia. Journal of the American Geriatrics Society, 38, 227-235. George, L. K., & Gwyther, L. P. (1986). Caregiver well-being: A multidimensional examination of family caregivers of demented adults. The Gerontologist, 26, 253-259. Gilleard, C. J., Belford, H., Gilleard, E., Whittick, J. E., & Gledhill, K. (1984). Emotional distress amongst the supporters of the elderly mentally infirm. British Journal of Psychiatry, 145, 172-177. Katz, S., Ford, A. B., Moskowitz, R. W., Jackson, B. A., & Jaffe, M. W. (1963). Studies of illness in the aged. The index of ADL: A standardized measure of biological and psychosocial function. Journal of the American Medical Association, 185, 914-919. Kirshen, A. J., & Novak, M. (1990). Urinary incontinence in the elderly [Abstract]. The Gerontologist, 30(Suppl.), 5-6A. Miller, B., & Montgomery, A. (1990). Family caregivers and limitations in social activities. Research on Aging, 12, 72-93. Moritz, D. J., Kasl, S. V., & Berkman, L. F. (1989). The health impact of living with a cognitively impaired elderly spouse: Depressive symptoms and social functioning, journal of Gerontology, 44, S17-27. Noelker, L. S. (1987). Incontinence in elderly cared for by family. The Gerontologist, 27, 194-200. Ory, M. G., Wyman, J. F., & Yu, L. (1986). Psychosocial factors in urinary incontinence. Clinics in Geriatric Medicine, 2, 657-671. Ouslander, J. G., Zarit, S. H., Orr, N. K., & Muira, S. A. (1990). Incontinence among elderly community-dwelling dementia patients: Characteristics, management, and impact on caregivers. Journal of the American Geriatrics Society, 38, 440-445. Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583-594. Poulshock, S. W., & Deimling, G. T. (1984). Families caring for elders in residence: Issues in the measurement of burden. Journal of Gerontology, 39, 230-239. Reuben, D. B., & Solomon, D. H. (1989). Assessment in geriatrics: Of caveats and names. Journal of the American Geriatrics Society, 37, 570-572. Sheikh, J. I., & Yesavage, J. A. (1986). Geriatric Depression Scale (CDS): Recent findings and development of a shorter version. In T. L. Brink (Ed.), Clinical gerontology: A guide to assessment and intervention (pp. 165-173). New York: Haworth. Silliman, R. A., McGarvey, S. T., Raymond, P. M. ; & Fretwell, M. D. (1990). The Senior Care Study: Does inpatient interdisciplinary geriatric assessment help the family caregivers of acutely ill older patients? Journal of the American Geriatrics Society, 38, 461-466. Spector, W. D., Katz, S., Murphy, J. B., & Fulton, J. P. (1987). The hierarchical relationship between activities of daily living and instrumental activities of daily living. Journal of Chronic Disease, 40, 481-489. Vitaliano, P., Young, H. M., & Russo, J. (1991). Burden: A review of measures used among caregivers of individuals with dementia. The Gerontologist, 31, 67-75. Wyman, J. F., Harkins, S. W., & Fantl, J. A. (1990). Psychosocial impact of urinary incontinence in the community-dwelling population. Journal of the American Geriatrics Society, 38, 282-288. Zarit, S. H., Anthony, C. R., & Boutselis, M. (1987). Interventions with caregivers of dementia patients: Comparison of two approaches. Psychology of Aging, 2, 225-232.
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regarding the impact of "urinary incontinence" on caregiver stress needs to consider the influence of care-receiver immobility on caregiver perceptions. Clinically, health care providers cannot assume that the lack of reported urinary incontinence in the care receiver prevents the caregiver from the stress and strain of maintaining urinary function. Two other important findings were the deleterious effect of amount of time spent caregiving and the protective effect of social support networks. Similar to our findings, Moritz, Kasl, & Berkman (1989) reported that financial support from friends and relatives was associated with fewer depressive symptoms in husband-caregivers of cognitively impaired wives, and George and Gwyther (1986) found that caregiver burden was associated with perceived need for more social support. Contrary to our findings, however, a study by Gilleard et al. (1984) indicated that caregiver stress was associated with neither contact time nor other support, and another study by Clipp and George (1990) found no association between level of informal support for the caregiver and measures of burden. Symptoms of depression were associated with both perceived urinary function burden and adverse change in caregiver's health. The causal direction of these relationships is unclear (Poulshock & Deimling, 1984). However, from a clinical point of view, caregivers who express urinary function burden or experience a change in their own health are likely to be depressed as well. Providers should search for the presence of treatable affective disorder in such persons. The limitations of this study should be kept in mind. Although it is unknown how many of the questionnaires provided to contact persons were actually given to caregivers for completion, the response rate may have been relatively small. This could have introduced bias into the results. However, the finding that urinary function burden is perceived even in the absence of Ul is so strong that we doubt that it would have been altered significantly by a larger response rate. We did not measure caregiver burden in a global fashion but chose to measure perceived burden related directly to specific caregiving problems to gain greater specificity. It is possible that use of a global or "objective" measure would have found different results, but, on the other hand, the proper measurement of burden globally or objectively is far from settled (Pearlin et al., 1990; Vitaliano, Young, & Russo, 1991). We per-
