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Factors Affecting Burden of Family Caregivers of Community-Dwelling Ambulatory Elders with Dementia in Korea
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Factors Affecting Burden of Family Caregivers of Community-Dwelling Ambulatory Elders with Dementia in Korea Young Mi Lim, Gwi-Ryung Son, Jun-Ah Song, and Elizabeth Beattie The purpose of the study was to test a staged causal model as a theoretical base to explain the burden of family caregivers of community-dwelling self-ambulatory persons with dementia (PWDs) in Korea. The model contained three stages including antecedents (Stage 1), behavior (Stage 2), and outcome (Stage 3). The antecedents were variables of the PWDs (e.g., cognitive impairment and activities of daily living [ADL] dependency of the PWDs) and caregiver variables (e.g., age, gender of caregiver, and the relationship of caregiver to PWD). Stage 2 focused on wandering behavior. In Stage 3, the outcome variable was caregiver burden. A total of 83 noninstitutionalized, community-dwelling elders with dementia and their family caregivers participated. The instruments used in this study were the Korean version of Mini Mental State Examination, K-PADL (Korean-Physical Activities of Daily Living), Korean-Revised Algase Wandering ScaleCommunity Version, and K-CWOB (Caregiver Worry, Overload, and Role Captivity Scale-Korean) Korean versions of standardized Western instruments. Results indicate that cognitive impairment and ADL dependency had an indirect influence on caregiver burden through wandering behavior. In addition, caregiver age had a direct impact on caregiver burden. The findings of this study suggest that further refinement of the underlying model is warranted. © 2008 Elsevier Inc. All rights reserved.
From the Yonsei University Wonju College of Medicine Department of Nursing; Hanyang University Department of Nursing; Korea University College of Nursing; University of Michigan School of Nursing. Address reprint requests to Young Mi Lim, PhD, RN, Associate Professor, Yonsei University Wonju College of Medicine, Department of Nursing, Kangwon-Do, 220-701, South Korea. This study was supported in part by the Center on Frail and Vulnerable Elders (COFVE), School of Nursing, University of Michigan, Pilot Grant to Dr. Gwi-Ryung Son Hong. E-mail address: [email protected] © 2008 Elsevier Inc. All rights reserved. 0883-9417/1801-0005$34.00/0 doi: 10.1016/j.apnu.2007.12.005
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N KOREA, THE proportion of persons with dementia (PWDs) is estimated to be approximately 8.3% of elders older than 65 years in 2005 (Ministry of Health & Welfare, 2004). Most PWDs live with their families. Regardless of culture, most families provide care to PWDs. Family caregiving is provided within a cultural context and thus shows a range of variation. The experience of caregiver burden is well documented and is shared by families of PWDs from very different cultural backgrounds (Chumbler, Grimm, Cody, & Beck, 2003; Kim, & Lee, 1999; Lee, 1995a, 1995b, 1999; Miura, Arai, & Yamasaki, 2005; Miyamoto, Ito, Ostuka, & Kurita, 2002; Rymer et al., 2002).
Archives of Psychiatric Nursing, Vol. 22, No. 4 (August), 2008: pp 226–234
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Caregiver burden is determined by several factors, including PWD variables (e.g., impairments, behavior problems) and caregiver variables (e.g., gender of caregiver, age of caregiver, relationship of caregiver to PWD). First, in many studies across cultures, cognitive impairment and difficulty with activities of daily living of PWDs impacted caregiver burden (Deimling & Bass, 1986; Rymer et al., 2002; Williams, Briggs, & Coleman, 1995; Wu, Chang, Lin, & Yao, 1992). Poulshock and Deimling (1984) suggest that burden is a highly individualized response to a specific caregiving context, which is influenced by the types of impairments the elder has. Second, in most studies in many countries, a high correlation was found between caregiver burden and behavioral disturbance in dementia (Dunkin & Anderson-Hanley, 1998; Coen, Swanwicj, O'Boyle, & Coakley, 1997; Haley, Brown, & Levine, 1987; Son, Wykle, & Zauszniewski, 2003; Williams et al., 1995). The wandering behavior of PWDs, especially, was strongly associated with caregiver burden (Donaldson, Tarrier, & Burns, 1998; Dunkin & Anderson-Hanley, 1998; Magone, Sanguinetti, & Baumann, 1993). Depending on the population studied and the definition of terms, prevalence estimates of wandering vary widely from 2% to 70% in the United States (Cohen-Mansfield, Werner, Watson, & Pasis, 1995; Logsdon et al., 1998). In Korea, based on family caregiver reports, the overall proportion of community-residing PWDs identified as wanderers ranges from 58% to 73% (Lee & Kwon, 1993; Oh, 1997). Korean caregivers of communityliving PWDs expressed high stress levels because of wandering behavior (Lee & Kwon, 1993). Third, regardless of culture, recent investigations have repeatedly shown that characteristics of the caregiver profoundly influence caregiver burden (Chumbler et al., 2003; Gallicchio, Siddiqi, Langenberg, & Baumgarten, 2002). Most of the studies across cultures (Freyne, Kidd, Coen, & Lawlor, 1999; Gallicchio et al., 2002; Kim & Lee, 1999; Sink, Covinsky, Barnes, Newcomer, & Yaffe, 2006; Song & Choi, 2007) reported that, especially, gender of caregiver, the relationship of caregiver to PWD, and the age of the caregiver, which are caregiver demographic characteristics, have an influence on caregiver burden. For example, female caregivers in particular (Donaldson & Burns, 1999; Gallicchio et al., 2002; Grafstrom & Winblad, 1995; Youn, Knight, Jeong, & Benton, 1999) and
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adult daughter caregivers (Chumbler et al., 2003) were at high risk of developing caregiver burden. Young caregivers were also more vulnerable to burden (Chumbler et al., 2003; Pratt, Schmall, Wright, & Cleland, 1985). Caregiver burden is evident in response to the impact of cognitive impairment and dependency of activities of daily living [ADL], the wandering behavior of PWDs, and characteristics of caregivers. Recently, many studies have focused on cognitive impairments as a major source of the wandering behavior of PWDs. Several studies have found that wandering was strongly associated with the severity of dementia (Algase, 1992; Burns, Folstein, Brandt, & Folstein, 1990; Burns, Jacoby, & Levy, 1990; Yang, Hwang, Tsai, & Liu, 1999) and dependency in ADL functioning (Kiely, Morris, & Algase, 2000; Logsdon et al., 1998; Teri, McCurry, Edland, Kukull, & Larson, 1995; Thomas, 1995). Although considerable attention has been paid to describing caregiver burden in Korea, few nursing studies have systematically tested a theorygrounded explanation for causal relationships affecting burden experienced by family caregivers of PWDs in Korea. Hence, this study was designed to test a staged theoretical model designed to explain relationships between caregiver factors, PWD factors such as wandering, and cognitive impairment and dependency in ADL affecting burden in family caregivers of PWDs. CONCEPTUAL FRAMEWORK
The model tests the theoretical assertion and certain empirical investigations in caregiver burden literature (Dunkin, & Anderson-Hanley, 1998; Lee, 1999; Torti, Gwyther, Reed, Friedman, & Schulman, 2004; Yang et al., 1999). This model has two assumptions. One is that contextual antecedents are sufficient to explain the factors affecting burden of family caregivers of elders with dementia. The other assumption is that wandering has a mediating effect on caregiver burden. The model in Figure 1 contains three stages composed of antecedent (Stage 1), behavior (Stage 2), and outcome (Stage 3). Stage 1 contains PWD variables and caregiver variables. PWD variables include elder's cognitive decrement (ECD) and elder's ability to perform activities of daily living (EADL). ECD refers to the extent of impairment to which the PWDs' memory, judgment, orientation, and ability to produce behavior
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Fig 1. A staged theoretical model.
appropriate to the situation were compromised (Pfeiffer, 1975). EADL refers to the ability to perform physical ADL (Lawton & Brody, 1969). Caregiver variables include caregiver's age (CA), caregiver's gender (CG), and relationship of caregiver to elder (RCE). In Stage 2, the behavior variable was wandering of PWDs. Wandering behavior refers to a six-dimensional concept consisting of frequency, pattern, spatial disorientation, eloping, negative outcomes, and mealtime impulsivity (Algase et al., 2004). Several studies indicated that wandering was positively associated with the extent of dementia (Algase, Beattie, Bogue, & Yao, 2001; Algase, Beattie, & Therrien, 2001; Burns, Jacoby, et al., 1990). In Stage 3, the outcome variable was family caregiver burden. In the theoretical staged model, a direct positive relationship was anticipated between wandering behavior of PWDs and the burden of family caregivers, with more wandering behaviors being associated with higher family caregiver burden (Miyamoto et al., 2002). Many studies report that caregiver burden results from caregiver variables (Kim & Lee, 1999; Lee, 1995a, 1999; Pushkar, Reis, Markiewicz, & Anders, 1995). In our study, PWD variables such as cognitive and physical functioning had a direct impact on burden (Poulshock & Deimling, 1984). Caregiver burden is a multidimensional concept encompassing various components of negative effects that the caregiver perceives, attention to
the emotional costs of caregiving, feelings associated with embarrassment and overload, changes and disruptions in the caregiver's life, and role strain and deterioration in physical health (George & Gwyther, 1986; Vitaliano, Young, & Russo, 1991). Family caregiver burden has emerged as an important concept for determining the impact of quality of family caregiving on PWDs (Schultz & Martire, 2004). Wandering was included as a mediating variable in this model to test the implicit, although untested, assumption that PWD variables have an indirect impact on caregiver burden through the wandering behavior of PWDs. In a caregiving study (Son et al., 2003) with Korean caregivers of PWDs, behavior problems were found to be the most significant factor influencing family caregiver burden. Behavior problems could include any disruptive behaviors such as wandering or physical aggressiveness (Algase et al., 1996), which are caused by declined memory function in PWDs. The authors of this study were especially interested in wandering behavior and its mediating effect on family caregiver burden. Although one study of caregiving in Koreans (Son et al., 2003) showed predictors of caregiver burden and stress, the relationship between wandering and caregiver burden has not been investigated. At this time, wandering is not a familiar clinical concept in Korea. Therefore, this study examines wandering behavior in PWD as a mediating factor on caregiving burden. Research Question What is the magnitude and direction of the relationships between the dependent variable (burden), one endogenous variable (wandering), and five exogenous variables (EADL, ECD, CA, CG, RCE)? METHOD
Design and Participants In this study, a cross-sectional descriptive research design was used to test a staged theoretical model designed to explain factors affecting family caregiver burden. Data were collected with a convenience sample of nonprobability dyads of PWDs and their family caregivers from an outpatient clinic and adult day care centers in Korea. A total of 83 noninstitutionalized, communitydwelling elders with dementia and their family caregivers participated. The inclusion criteria for
FACTORS AFFECTING BURDEN OF FAMILY CAREGIVERS
community residing PWDs were (a) age more than 60 years; (b) medical diagnosis of dementia; (c) Korean version of Mini Mental State Examination (K-MMSE) score less than 24/30; and (d) independent walking. The inclusion criteria for caregivers of PWDs were (a) a relative (older than 18 years); (b) serving as primary caregiver and has an intimate knowledge of that person over time; and (c) agreed to be interviewed. Description of Sample Ages of the family caregivers ranged from 20 to 83 years, with a mean of 53.4 years (SD = 15.6). Over two thirds of the caregivers (73.5%, n = 61) were female. Approximately 87% of caregivers (n = 72) were married. Most of the caregivers (74.7%, n = 62) had education beyond high school. Almost one third of the caregivers (32.5%, n = 27) were spouses of PWDs, and 22.9% of the caregivers (n = 19) were daughters-in-law of PWDs. Mean duration of caregiving was 40.5 months, which was more than 3 years (SD = 34.7). For PWDs, the mean age was 76.9 years, ranging from 60 to 94 years (SD = 7.7). Sixty-six percent of PWDs (n = 55) were female. Over half of PWDs were married (51.8%, n = 43), and 61% (n = 51) had education beyond elementary school. Instruments Korean Version of Mini Mental State Examination The translated version of the MMSE (Kang, Na, & Hahn, 1997) is a short measure of global cognitive functioning that has been widely used in clinical evaluation. It is an 11-question measure that tests five areas of cognitive function: orientation, registration, attention and calculation, recall, and language. The maximum score of the total sum of items is 30. Lower scores indicate greater cognitive impairment in PWDs. In our study, a coefficient alpha was .86. Korean-Physical Activities of Daily Living Physical dependency in ADLs was measured using the Korean physical ADL (PADL) Scale (Kwon, 1995), a nine-item, five-point Likert-type scale. The scores for the nine items are summed to determine the total score, which ranges from 9 to 45. Lower scores indicate that the elderly person performs ADLs independently. The K-PADLs include nine typical physical behaviors for which
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elders may need assistance: face washing, toileting, feeding, dressing, grooming, ambulating, getting up and going to bed, sitting down and standing up, and bathing. Kwon (1995) assessed content validity using five experts who reviewed the scale items. In his study, internal consistency has been reported with Cronbach's alphas of .92. In our study, the alpha coefficient for the K-PADL scale was .93. Korean-Revised Algase Wandering Scale—Community Version (K-RAWS-CV) The Revised Algase Wandering Scale—Community Version (RAWS-CV; Algase et al., 2004) was developed to quantify wandering behavior of community residing elders. The translated Korean version of RAWS-CV (Son, Song, & Lim, 2006) has six factors: persistent walking, repetitive walking, spatial disorientation, eloping behavior, negative outcomes, mealtime impulsivity. Internal consistency for K-RAWS-CV-K is high with Cronbach's alphas from .82 (negative outcome) to .93 (persistent walking; Son et al., 2006). The KRAWS-CV consists of 39 items using a five-point Likert-type scale on which scores range from 39 to 195. Scores were obtained by summing responses within subscales, with higher scores indicating more wandering behaviors. The item mean score was used in data analysis. In this study, internal consistency for the scale overall was .97 and its six subscales ranged from .80 (negative outcome) to .94 (persistent walking). The Caregiver Worry, Overload, and Role Captivity Scale–Korean The Caregiver Worry, Overload, and Role Captivity Scale (CWORC; Zarit, Stephens, & Greene, 2002) consists of an 18-item, four-point Likert-type scale designed to measure specific features of worry and role stress that are subcomponents of perceived burden. Three bilingual nursing scholars translated each item into Korean. After another bilingual scholar performed a blind back-translation, a native speaker compared it with the original English version. Total high scores indicate a higher level of burden. Item mean score was used in data analysis. In this study, Cronbach's alpha was .79. DATA COLLECTION
After obtaining approval from the institutional review board of the University of Michigan,
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Table 1. Descriptives of Main Variables Variable
Total possible score
MMSE PADLs K-RAWS-CV CWORC-K
30 45 5 5
M (SD)
13.43 20.70 1.89 2.46
(6.26) (10.52) (0.67) (0.29)
neurology clinics of the two general hospitals in 1 metropolitan city and adult day care centers in 2 metropolitan cities and 10 cities in Korea were contacted. A written consent of approval from the director of each institution was obtained prior to data collection. Lists of eligible elders were provided from referring doctors, nurses, and social workers. For elders recruited from outpatient clinics, with physician permission, data collectors approached family caregivers and PWDs in the waiting rooms of the neurology clinic to explain the study and asked potential participants for permission to describe the study to them. Potential participants then decided if they wished to participate. After informed consent was obtained, a trained data collector interviewed each of the caregivers. The caregivers were asked to fill out the questionnaire under the supervision of a data collector. A cognitive function test using K-MMSE was performed with the PWDs in a private room to minimize distraction and enhance privacy and dignity. For elders recruited from adult day care centers, arrangements were made with family caregivers for a trained data collector to visit the PWD and caregiver at home for the interview. DATA ANALYSIS
Possible range
Actual range
Reliability
1–23 9–45 1–5 1–4
1–23 9–45 1–4 1–4
0.86 0.93 0.97 0.79
For the MMSE, the mean was 13.43/30 (SD = 6.26), which was considered as moderate cognitive impairment. For the PADL, the total scores were 20.70/45 (SD = 10.52). The mean item score of the K-RAWS-CV was 1.89/5 (SD = 0.67), which falls at almost 2 (seldom), below the midpoint of the scale. For the CWORC-Korean (CWORC-K), the mean item score was 2.46/5(SD = 0.39). This score falls between 2 (sometimes) and 3 (almost), which is the midpoint of the scale. Figure 2 shows the empirical results in the staged theoretical model on burden of family caregivers of elders with dementia in Korea. For the dependent variable “burden,” the following equation was tested: burden = a + wandering + CA + CG + RCE + ECD + EADL. In the final model (Figure 2), burden (β = .28, P = .04) in Stage 2 and CA (β = .40, P = .02) in Stage 1 explained 28% of the variance in burden. These relationships indicate that the greater the wandering behaviors of PWDs and the older the caregiver, the more burden experienced by family caregivers caring for PWD. The other four variables made no significant contributions to the explained variance. For the mediating variable “wandering,” the following equation was tested: wandering = a + CA + CG + RCE + ECD + EADL. In the final
The research question was answered using the path analysis. Using enter method of regression, model variables were entered into the equation based on stage and their bivariate relationship to the dependent variable. Gender of the caregiver and the relationship of the caregiver to the PWDs were included as dichotomous data in this model. Gender of the caregiver was scored as 0 (male) or 1 (female). The relationship of the caregiver to the PWD was scored as 0 (spouse) or 1 (children). Beta weights statistically significant at the .05 level were included in the analysis. RESULTS
Descriptive statistics for four variables, calculated as the mean item score, are shown in Table 1.
Fig 2. Empirical results: a staged theoretical model.
FACTORS AFFECTING BURDEN OF FAMILY CAREGIVERS
model (Figure 2), ECD (β = −.24, P = .02) and EADL (β = .48, P = .00) explained 40% of the variance in wandering. The greater the impairment in cognitive and physical functioning of PWDs, the more wandering behavior occurred. Caregiver variables in Stage 1 made no significant contribution to the explained variance. PWD variables such as ECD and EADL had indirect effects on burden through wandering. DISCUSSION
A theoretical staged model was posited to explain the causal relationships affecting the burden of family caregivers caring for elders with dementia in Korea. The results in this study have four findings. First, ECD and EADL had a positively indirect impact on caregiving burden through the wandering behavior of PWDs. This result indicates that PWDs with a decrement in cognition and dependency in ADL had more wandering behaviors, which resulted in burden experienced by their family caregivers. Although previously untested and despite the result showing only a small amount of the burden being accounted for by the proposed model, these results support the assumption that wandering mediates the relationships between impairments of PWDs and caregiver burden as a negative outcome (Algase, Beattie, & Therrien, 2001; Logsdon et al., 1998; Miyamoto et al., 2002). Second, impaired cognitive functioning and decreased ADL in PWD in our study did not have a direct influence on burden experienced by family caregivers, indicating that PWD variables, both cognitive and physical impairments of PWD, were not directly associated with caregiver burden. This is inconsistent with findings from some studies across cultures, in which burden as a negative outcome was directly influenced by the types of impairments affecting the elders (Lee, 1995a, 1995b; Miura et al., 2005; Poulshock & Deimling, 1984). The results in our study, however, support the findings of other studies (Hadjistavropoulos, Taylor, Tuokko, & Beattie, 1994; Vitaliano et al., 1991), in which burden was not significantly related with the types of impairments affecting the elders. Accordingly, the studies on the relationship between caregiving burden and functional impairments of the elders had contradictory conclusion. On the other hand, the results in this study support the findings of some researchers who determined
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that behavioral problems such as wandering rather than cognitive and functional impairment appear to exert a greater effect on burden (Coen et al., 1997; Magone et al., 1993). Third, among the caregiver variables, only age of the caregiver had a direct impact on caregiver burden, indicating that the older the caregivers, the greater degree of burden expressed. This finding has been interpreted in many ways, including the possibility that there are caregiving task differences between younger and older age caregivers or the possibility that older caregivers have greater stress from multiple roles as compared with young caregivers. Two other caregiver variables, gender of caregiver and the relationship of the caregiver to PWD, were not significant in this study. This may indicate that the gender of the caregiver and the relationship of the caregiver to the PWD have little influence on caregiver burden. Although many researchers have identified caregiving burden, the research did not produce conclusive results. Some studies have shown that the gender of the caregiver and the relationship of the caregiver to the PWD influence caregiving burden regardless of culture (Bedard, Pedlar, Martin, Malott, & Stones, 2000; Chumbler et al., 2003; Gallicchio et al., 2002; Lee, 1995b, 1999; Yee & Schulz, 2000). Some studies, however, report that there was no significant gender difference among carers regarding the degree of burden (Helmes, Green, & Almeida, 2005; McConaghy & Caltabiano, 2005). Fourth, comparing the strength of the relationship among the antecedent variables wandering and burden, striking differences were apparent. In this study, the effect of dependency in ADL on wandering was stronger than cognitive impairment. Many studies (Algase, Beattie, Bogue et al., 2001; Algase, Beattie, & Therrien, 2001; Miyamoto et al., 2002), however, found that mobility was associated with wandering behavior. In future research studies, there is a need to examine this association further. In addition, it was found that the strength of the relationship between age of caregiver and burden was much stronger than the relationship between wandering and burden. In this study, burden might have been influenced more by caregiver demographic factors than by impairment and behaviors of elders. The findings have implications for nursing practice designed to help family caregivers reduce their experience of burden. In this study, cognitive
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and physical functioning of PWD had a negative influence on caregiving burden through wandering behavior of PWD, which was a mediating variable. These causal relationships about caregiver burden can guide researchers and psychiatric mental health nurses to understand the relative strength of predictors for caregiver burden. Such knowledge will enable us to understand wandering behavior of PWD as a mediating factor and to develop more sensitive caregiver interventions to reduce the burden. In addition, these findings have implication for caregiving strategies and suggest the need to modify the environmental and behavioral context in systematic and consistent ways. In other words, familiar environment and communication with PWD might be a significant component in caregiving strategies of cognitive and physical impairments in PWDs so that wandering can be reduced. It is, hence, suggested that further research is necessary to explore other various factors, including psychosocial and environmental factors, of burden experienced by family caregivers who care for PWDs living in community. In conclusion, replication of the study with a larger sample needs to be considered to further enrich specific knowledge regarding wandering behavior of PWDs and burden experienced by Korean family caregivers of PWDs. Whether caregiver burden is culturally relevant to other ethnic groups has not been identified yet. Crosscultural differences or similarities in the theoretical model to explain the PWDs' impairments factors that affect caregiver burden through wandering need to be examined. The findings of this study suggest that further refinement of the underlying the model is warranted. ACKNOWLEDGMENT
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Miura, H., Arai, Y., & Yamasaki, K. (2005). Feelings of burden and health-related quality of life among family caregivers after the impaired elderly. Psychiatry and Clinical Neurosciences, 59(5), 551. Miyamoto, Y., Ito, H., Ostuka, T., & Kurita, H. (2002). Caregiver burden in mobile and non-mobile demented patients: A comparative study. International Journal of Geriatric Psychiatry, 17, 765−773. Oh, B. (1997). The understanding of wandering behavior in persons with dementia and its management. Presented at the seminar for the third Worldwide Alzheimer's Day March, Seoul, Korea. Pfeiffer, E. (1975). A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients. Journal of the American Geriatrics Society, 23, 433−441. 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. Pushkar, G., Reis, M. F., Markiewicz, D., & Andres, D. (1995). When home caregiving ends: A longitudinal study of outcomes for caregivers of relatives with dementia. Journal of American Geriatrics Society, 43, 10−16. Pratt, C., Schmall, V. L., Wright, S., & Cleland, M. (1985). Burden and coping strategies of caregivers to Alzheimer's patients. Family Relations, 34, 27−33. Rymer, S., Salloway, S., Norton, L., Malloy, P., Correia, S., & Monast, D. (2002). Contributions to caregiver burden in Alzheimer's disease: Awareness of deficit and behavioral disturbance. Alzheimer's Disease and Associated Disorder, 16(4), 248−253. Schulz, R., & Martire, L. (2004). Family caregiving of persons with dementia. American Journal of Geriatric Psychiatry, 12(3), 240−249. Sink, K., Covinsky, K., Barnes, D., Newcomer, R., & Yaffe, K. (2006). Caregiver characteristics are associated with neuropsychiatric symptoms of dementia. Journal of the American Geriatrics Society, 54(5), 796−803. Son, G. R., Song, J., & Lim, Y. M. (2006). Translation and validation of the Revised Algase Wandering Scale (community version) among Korean elders with dementia. Aging & Mental Health, 10(2), 143−150. Son, G. R., Wykle, M. L., & Zauszniewski, J. A. (2003). Korean adult child caregivers of older adults with dementia: Predictors of burden and satisfaction. Journal of Gerontological Nursing, 29(1), 19−28. Song, M., & Choi, K. (2007). Factors affecting caregiving burden of family caregivers with dementia. Journal of Welfare for the Aged, 37, 131−160. Teri, L., McCurry, S. W., Edland, S. D., Kukull, W. A., & Larson, E. (1995). Cognitive decline in Alzheimer's disease: A longitudinal investigation of risk factors for accelerated decline. Journal of Gerontology, 50A, M49−M55. Thomas, D. W. (1995). Wandering: A proposed definition. Journal of Gerontological Nursing, 21(9), 35−41. Torti, F. M., Gwyther, L. P., Reed, S. D., Friedman, J. Y., & Schulman, K. A. (2004). A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer's Disease and Associated Disorder, 18, 99−109. Vitaliano, P. P., Young, H. M., & Russo, J. (1991). Burden: A review of measures used among caregivers of individuals with dementia. Gerontologist, 31, 67−75.
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Williams, R., Briggs, R., & Coleman, P. (1995). Carer rated personality changes associated with senile dementia. International Journal of Geriatric Psychiatry, 10, 231−236. Wu, S. L., Chang, Y. J., Lin, F. H., & Yao, K. M. (1992). A study on the burdens and demands of primary caregivers of frail elderly in the community of Taiwan province. Public Health, 19, 166−177. Yang, C. H., Hwang, J. P., Tsai, S. J., & Liu, C. M. (1999). Wandering and associated factors in psychiatric inpatients with dementia of Alzheimer's type in Taiwan:
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Clinical implications for management. Journal of Nervous Mental Disorder, 187(11), 695−697. Yee, J. K., & Schulz, R. (2000). Gender differences in psychiatric morbidity among family caregivers: A review and analysis. Gerontologist, 40, 147−164. Youn, G., Knight, B. G., Jeong, H. S., & Benton, D. (1999). Differences in familism values and caregiving outcomes among Korean, Korean American, and White American dementia caregivers. Psychology Aging, 14, 355−364. Zarit, S.H., Stephens, M.A.P., & Greene, R. (2002). Adult day care collaborative study. 5R01 AG11354-02.
Factors Affecting Burden of Family Caregivers of Community-Dwelling Ambulatory Elders with Dementia in Korea Young Mi Lim, Gwi-Ryung Son, Jun-Ah Song, and Elizabeth Beattie The purpose of the study was to test a staged causal model as a theoretical base to explain the burden of family caregivers of community-dwelling self-ambulatory persons with dementia (PWDs) in Korea. The model contained three stages including antecedents (Stage 1), behavior (Stage 2), and outcome (Stage 3). The antecedents were variables of the PWDs (e.g., cognitive impairment and activities of daily living [ADL] dependency of the PWDs) and caregiver variables (e.g., age, gender of caregiver, and the relationship of caregiver to PWD). Stage 2 focused on wandering behavior. In Stage 3, the outcome variable was caregiver burden. A total of 83 noninstitutionalized, community-dwelling elders with dementia and their family caregivers participated. The instruments used in this study were the Korean version of Mini Mental State Examination, K-PADL (Korean-Physical Activities of Daily Living), Korean-Revised Algase Wandering ScaleCommunity Version, and K-CWOB (Caregiver Worry, Overload, and Role Captivity Scale-Korean) Korean versions of standardized Western instruments. Results indicate that cognitive impairment and ADL dependency had an indirect influence on caregiver burden through wandering behavior. In addition, caregiver age had a direct impact on caregiver burden. The findings of this study suggest that further refinement of the underlying model is warranted. © 2008 Elsevier Inc. All rights reserved.
From the Yonsei University Wonju College of Medicine Department of Nursing; Hanyang University Department of Nursing; Korea University College of Nursing; University of Michigan School of Nursing. Address reprint requests to Young Mi Lim, PhD, RN, Associate Professor, Yonsei University Wonju College of Medicine, Department of Nursing, Kangwon-Do, 220-701, South Korea. This study was supported in part by the Center on Frail and Vulnerable Elders (COFVE), School of Nursing, University of Michigan, Pilot Grant to Dr. Gwi-Ryung Son Hong. E-mail address: [email protected] © 2008 Elsevier Inc. All rights reserved. 0883-9417/1801-0005$34.00/0 doi: 10.1016/j.apnu.2007.12.005
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I
N KOREA, THE proportion of persons with dementia (PWDs) is estimated to be approximately 8.3% of elders older than 65 years in 2005 (Ministry of Health & Welfare, 2004). Most PWDs live with their families. Regardless of culture, most families provide care to PWDs. Family caregiving is provided within a cultural context and thus shows a range of variation. The experience of caregiver burden is well documented and is shared by families of PWDs from very different cultural backgrounds (Chumbler, Grimm, Cody, & Beck, 2003; Kim, & Lee, 1999; Lee, 1995a, 1995b, 1999; Miura, Arai, & Yamasaki, 2005; Miyamoto, Ito, Ostuka, & Kurita, 2002; Rymer et al., 2002).
Archives of Psychiatric Nursing, Vol. 22, No. 4 (August), 2008: pp 226–234
FACTORS AFFECTING BURDEN OF FAMILY CAREGIVERS
Caregiver burden is determined by several factors, including PWD variables (e.g., impairments, behavior problems) and caregiver variables (e.g., gender of caregiver, age of caregiver, relationship of caregiver to PWD). First, in many studies across cultures, cognitive impairment and difficulty with activities of daily living of PWDs impacted caregiver burden (Deimling & Bass, 1986; Rymer et al., 2002; Williams, Briggs, & Coleman, 1995; Wu, Chang, Lin, & Yao, 1992). Poulshock and Deimling (1984) suggest that burden is a highly individualized response to a specific caregiving context, which is influenced by the types of impairments the elder has. Second, in most studies in many countries, a high correlation was found between caregiver burden and behavioral disturbance in dementia (Dunkin & Anderson-Hanley, 1998; Coen, Swanwicj, O'Boyle, & Coakley, 1997; Haley, Brown, & Levine, 1987; Son, Wykle, & Zauszniewski, 2003; Williams et al., 1995). The wandering behavior of PWDs, especially, was strongly associated with caregiver burden (Donaldson, Tarrier, & Burns, 1998; Dunkin & Anderson-Hanley, 1998; Magone, Sanguinetti, & Baumann, 1993). Depending on the population studied and the definition of terms, prevalence estimates of wandering vary widely from 2% to 70% in the United States (Cohen-Mansfield, Werner, Watson, & Pasis, 1995; Logsdon et al., 1998). In Korea, based on family caregiver reports, the overall proportion of community-residing PWDs identified as wanderers ranges from 58% to 73% (Lee & Kwon, 1993; Oh, 1997). Korean caregivers of communityliving PWDs expressed high stress levels because of wandering behavior (Lee & Kwon, 1993). Third, regardless of culture, recent investigations have repeatedly shown that characteristics of the caregiver profoundly influence caregiver burden (Chumbler et al., 2003; Gallicchio, Siddiqi, Langenberg, & Baumgarten, 2002). Most of the studies across cultures (Freyne, Kidd, Coen, & Lawlor, 1999; Gallicchio et al., 2002; Kim & Lee, 1999; Sink, Covinsky, Barnes, Newcomer, & Yaffe, 2006; Song & Choi, 2007) reported that, especially, gender of caregiver, the relationship of caregiver to PWD, and the age of the caregiver, which are caregiver demographic characteristics, have an influence on caregiver burden. For example, female caregivers in particular (Donaldson & Burns, 1999; Gallicchio et al., 2002; Grafstrom & Winblad, 1995; Youn, Knight, Jeong, & Benton, 1999) and
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adult daughter caregivers (Chumbler et al., 2003) were at high risk of developing caregiver burden. Young caregivers were also more vulnerable to burden (Chumbler et al., 2003; Pratt, Schmall, Wright, & Cleland, 1985). Caregiver burden is evident in response to the impact of cognitive impairment and dependency of activities of daily living [ADL], the wandering behavior of PWDs, and characteristics of caregivers. Recently, many studies have focused on cognitive impairments as a major source of the wandering behavior of PWDs. Several studies have found that wandering was strongly associated with the severity of dementia (Algase, 1992; Burns, Folstein, Brandt, & Folstein, 1990; Burns, Jacoby, & Levy, 1990; Yang, Hwang, Tsai, & Liu, 1999) and dependency in ADL functioning (Kiely, Morris, & Algase, 2000; Logsdon et al., 1998; Teri, McCurry, Edland, Kukull, & Larson, 1995; Thomas, 1995). Although considerable attention has been paid to describing caregiver burden in Korea, few nursing studies have systematically tested a theorygrounded explanation for causal relationships affecting burden experienced by family caregivers of PWDs in Korea. Hence, this study was designed to test a staged theoretical model designed to explain relationships between caregiver factors, PWD factors such as wandering, and cognitive impairment and dependency in ADL affecting burden in family caregivers of PWDs. CONCEPTUAL FRAMEWORK
The model tests the theoretical assertion and certain empirical investigations in caregiver burden literature (Dunkin, & Anderson-Hanley, 1998; Lee, 1999; Torti, Gwyther, Reed, Friedman, & Schulman, 2004; Yang et al., 1999). This model has two assumptions. One is that contextual antecedents are sufficient to explain the factors affecting burden of family caregivers of elders with dementia. The other assumption is that wandering has a mediating effect on caregiver burden. The model in Figure 1 contains three stages composed of antecedent (Stage 1), behavior (Stage 2), and outcome (Stage 3). Stage 1 contains PWD variables and caregiver variables. PWD variables include elder's cognitive decrement (ECD) and elder's ability to perform activities of daily living (EADL). ECD refers to the extent of impairment to which the PWDs' memory, judgment, orientation, and ability to produce behavior
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Fig 1. A staged theoretical model.
appropriate to the situation were compromised (Pfeiffer, 1975). EADL refers to the ability to perform physical ADL (Lawton & Brody, 1969). Caregiver variables include caregiver's age (CA), caregiver's gender (CG), and relationship of caregiver to elder (RCE). In Stage 2, the behavior variable was wandering of PWDs. Wandering behavior refers to a six-dimensional concept consisting of frequency, pattern, spatial disorientation, eloping, negative outcomes, and mealtime impulsivity (Algase et al., 2004). Several studies indicated that wandering was positively associated with the extent of dementia (Algase, Beattie, Bogue, & Yao, 2001; Algase, Beattie, & Therrien, 2001; Burns, Jacoby, et al., 1990). In Stage 3, the outcome variable was family caregiver burden. In the theoretical staged model, a direct positive relationship was anticipated between wandering behavior of PWDs and the burden of family caregivers, with more wandering behaviors being associated with higher family caregiver burden (Miyamoto et al., 2002). Many studies report that caregiver burden results from caregiver variables (Kim & Lee, 1999; Lee, 1995a, 1999; Pushkar, Reis, Markiewicz, & Anders, 1995). In our study, PWD variables such as cognitive and physical functioning had a direct impact on burden (Poulshock & Deimling, 1984). Caregiver burden is a multidimensional concept encompassing various components of negative effects that the caregiver perceives, attention to
the emotional costs of caregiving, feelings associated with embarrassment and overload, changes and disruptions in the caregiver's life, and role strain and deterioration in physical health (George & Gwyther, 1986; Vitaliano, Young, & Russo, 1991). Family caregiver burden has emerged as an important concept for determining the impact of quality of family caregiving on PWDs (Schultz & Martire, 2004). Wandering was included as a mediating variable in this model to test the implicit, although untested, assumption that PWD variables have an indirect impact on caregiver burden through the wandering behavior of PWDs. In a caregiving study (Son et al., 2003) with Korean caregivers of PWDs, behavior problems were found to be the most significant factor influencing family caregiver burden. Behavior problems could include any disruptive behaviors such as wandering or physical aggressiveness (Algase et al., 1996), which are caused by declined memory function in PWDs. The authors of this study were especially interested in wandering behavior and its mediating effect on family caregiver burden. Although one study of caregiving in Koreans (Son et al., 2003) showed predictors of caregiver burden and stress, the relationship between wandering and caregiver burden has not been investigated. At this time, wandering is not a familiar clinical concept in Korea. Therefore, this study examines wandering behavior in PWD as a mediating factor on caregiving burden. Research Question What is the magnitude and direction of the relationships between the dependent variable (burden), one endogenous variable (wandering), and five exogenous variables (EADL, ECD, CA, CG, RCE)? METHOD
Design and Participants In this study, a cross-sectional descriptive research design was used to test a staged theoretical model designed to explain factors affecting family caregiver burden. Data were collected with a convenience sample of nonprobability dyads of PWDs and their family caregivers from an outpatient clinic and adult day care centers in Korea. A total of 83 noninstitutionalized, communitydwelling elders with dementia and their family caregivers participated. The inclusion criteria for
FACTORS AFFECTING BURDEN OF FAMILY CAREGIVERS
community residing PWDs were (a) age more than 60 years; (b) medical diagnosis of dementia; (c) Korean version of Mini Mental State Examination (K-MMSE) score less than 24/30; and (d) independent walking. The inclusion criteria for caregivers of PWDs were (a) a relative (older than 18 years); (b) serving as primary caregiver and has an intimate knowledge of that person over time; and (c) agreed to be interviewed. Description of Sample Ages of the family caregivers ranged from 20 to 83 years, with a mean of 53.4 years (SD = 15.6). Over two thirds of the caregivers (73.5%, n = 61) were female. Approximately 87% of caregivers (n = 72) were married. Most of the caregivers (74.7%, n = 62) had education beyond high school. Almost one third of the caregivers (32.5%, n = 27) were spouses of PWDs, and 22.9% of the caregivers (n = 19) were daughters-in-law of PWDs. Mean duration of caregiving was 40.5 months, which was more than 3 years (SD = 34.7). For PWDs, the mean age was 76.9 years, ranging from 60 to 94 years (SD = 7.7). Sixty-six percent of PWDs (n = 55) were female. Over half of PWDs were married (51.8%, n = 43), and 61% (n = 51) had education beyond elementary school. Instruments Korean Version of Mini Mental State Examination The translated version of the MMSE (Kang, Na, & Hahn, 1997) is a short measure of global cognitive functioning that has been widely used in clinical evaluation. It is an 11-question measure that tests five areas of cognitive function: orientation, registration, attention and calculation, recall, and language. The maximum score of the total sum of items is 30. Lower scores indicate greater cognitive impairment in PWDs. In our study, a coefficient alpha was .86. Korean-Physical Activities of Daily Living Physical dependency in ADLs was measured using the Korean physical ADL (PADL) Scale (Kwon, 1995), a nine-item, five-point Likert-type scale. The scores for the nine items are summed to determine the total score, which ranges from 9 to 45. Lower scores indicate that the elderly person performs ADLs independently. The K-PADLs include nine typical physical behaviors for which
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elders may need assistance: face washing, toileting, feeding, dressing, grooming, ambulating, getting up and going to bed, sitting down and standing up, and bathing. Kwon (1995) assessed content validity using five experts who reviewed the scale items. In his study, internal consistency has been reported with Cronbach's alphas of .92. In our study, the alpha coefficient for the K-PADL scale was .93. Korean-Revised Algase Wandering Scale—Community Version (K-RAWS-CV) The Revised Algase Wandering Scale—Community Version (RAWS-CV; Algase et al., 2004) was developed to quantify wandering behavior of community residing elders. The translated Korean version of RAWS-CV (Son, Song, & Lim, 2006) has six factors: persistent walking, repetitive walking, spatial disorientation, eloping behavior, negative outcomes, mealtime impulsivity. Internal consistency for K-RAWS-CV-K is high with Cronbach's alphas from .82 (negative outcome) to .93 (persistent walking; Son et al., 2006). The KRAWS-CV consists of 39 items using a five-point Likert-type scale on which scores range from 39 to 195. Scores were obtained by summing responses within subscales, with higher scores indicating more wandering behaviors. The item mean score was used in data analysis. In this study, internal consistency for the scale overall was .97 and its six subscales ranged from .80 (negative outcome) to .94 (persistent walking). The Caregiver Worry, Overload, and Role Captivity Scale–Korean The Caregiver Worry, Overload, and Role Captivity Scale (CWORC; Zarit, Stephens, & Greene, 2002) consists of an 18-item, four-point Likert-type scale designed to measure specific features of worry and role stress that are subcomponents of perceived burden. Three bilingual nursing scholars translated each item into Korean. After another bilingual scholar performed a blind back-translation, a native speaker compared it with the original English version. Total high scores indicate a higher level of burden. Item mean score was used in data analysis. In this study, Cronbach's alpha was .79. DATA COLLECTION
After obtaining approval from the institutional review board of the University of Michigan,
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Table 1. Descriptives of Main Variables Variable
Total possible score
MMSE PADLs K-RAWS-CV CWORC-K
30 45 5 5
M (SD)
13.43 20.70 1.89 2.46
(6.26) (10.52) (0.67) (0.29)
neurology clinics of the two general hospitals in 1 metropolitan city and adult day care centers in 2 metropolitan cities and 10 cities in Korea were contacted. A written consent of approval from the director of each institution was obtained prior to data collection. Lists of eligible elders were provided from referring doctors, nurses, and social workers. For elders recruited from outpatient clinics, with physician permission, data collectors approached family caregivers and PWDs in the waiting rooms of the neurology clinic to explain the study and asked potential participants for permission to describe the study to them. Potential participants then decided if they wished to participate. After informed consent was obtained, a trained data collector interviewed each of the caregivers. The caregivers were asked to fill out the questionnaire under the supervision of a data collector. A cognitive function test using K-MMSE was performed with the PWDs in a private room to minimize distraction and enhance privacy and dignity. For elders recruited from adult day care centers, arrangements were made with family caregivers for a trained data collector to visit the PWD and caregiver at home for the interview. DATA ANALYSIS
Possible range
Actual range
Reliability
1–23 9–45 1–5 1–4
1–23 9–45 1–4 1–4
0.86 0.93 0.97 0.79
For the MMSE, the mean was 13.43/30 (SD = 6.26), which was considered as moderate cognitive impairment. For the PADL, the total scores were 20.70/45 (SD = 10.52). The mean item score of the K-RAWS-CV was 1.89/5 (SD = 0.67), which falls at almost 2 (seldom), below the midpoint of the scale. For the CWORC-Korean (CWORC-K), the mean item score was 2.46/5(SD = 0.39). This score falls between 2 (sometimes) and 3 (almost), which is the midpoint of the scale. Figure 2 shows the empirical results in the staged theoretical model on burden of family caregivers of elders with dementia in Korea. For the dependent variable “burden,” the following equation was tested: burden = a + wandering + CA + CG + RCE + ECD + EADL. In the final model (Figure 2), burden (β = .28, P = .04) in Stage 2 and CA (β = .40, P = .02) in Stage 1 explained 28% of the variance in burden. These relationships indicate that the greater the wandering behaviors of PWDs and the older the caregiver, the more burden experienced by family caregivers caring for PWD. The other four variables made no significant contributions to the explained variance. For the mediating variable “wandering,” the following equation was tested: wandering = a + CA + CG + RCE + ECD + EADL. In the final
The research question was answered using the path analysis. Using enter method of regression, model variables were entered into the equation based on stage and their bivariate relationship to the dependent variable. Gender of the caregiver and the relationship of the caregiver to the PWDs were included as dichotomous data in this model. Gender of the caregiver was scored as 0 (male) or 1 (female). The relationship of the caregiver to the PWD was scored as 0 (spouse) or 1 (children). Beta weights statistically significant at the .05 level were included in the analysis. RESULTS
Descriptive statistics for four variables, calculated as the mean item score, are shown in Table 1.
Fig 2. Empirical results: a staged theoretical model.
FACTORS AFFECTING BURDEN OF FAMILY CAREGIVERS
model (Figure 2), ECD (β = −.24, P = .02) and EADL (β = .48, P = .00) explained 40% of the variance in wandering. The greater the impairment in cognitive and physical functioning of PWDs, the more wandering behavior occurred. Caregiver variables in Stage 1 made no significant contribution to the explained variance. PWD variables such as ECD and EADL had indirect effects on burden through wandering. DISCUSSION
A theoretical staged model was posited to explain the causal relationships affecting the burden of family caregivers caring for elders with dementia in Korea. The results in this study have four findings. First, ECD and EADL had a positively indirect impact on caregiving burden through the wandering behavior of PWDs. This result indicates that PWDs with a decrement in cognition and dependency in ADL had more wandering behaviors, which resulted in burden experienced by their family caregivers. Although previously untested and despite the result showing only a small amount of the burden being accounted for by the proposed model, these results support the assumption that wandering mediates the relationships between impairments of PWDs and caregiver burden as a negative outcome (Algase, Beattie, & Therrien, 2001; Logsdon et al., 1998; Miyamoto et al., 2002). Second, impaired cognitive functioning and decreased ADL in PWD in our study did not have a direct influence on burden experienced by family caregivers, indicating that PWD variables, both cognitive and physical impairments of PWD, were not directly associated with caregiver burden. This is inconsistent with findings from some studies across cultures, in which burden as a negative outcome was directly influenced by the types of impairments affecting the elders (Lee, 1995a, 1995b; Miura et al., 2005; Poulshock & Deimling, 1984). The results in our study, however, support the findings of other studies (Hadjistavropoulos, Taylor, Tuokko, & Beattie, 1994; Vitaliano et al., 1991), in which burden was not significantly related with the types of impairments affecting the elders. Accordingly, the studies on the relationship between caregiving burden and functional impairments of the elders had contradictory conclusion. On the other hand, the results in this study support the findings of some researchers who determined
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that behavioral problems such as wandering rather than cognitive and functional impairment appear to exert a greater effect on burden (Coen et al., 1997; Magone et al., 1993). Third, among the caregiver variables, only age of the caregiver had a direct impact on caregiver burden, indicating that the older the caregivers, the greater degree of burden expressed. This finding has been interpreted in many ways, including the possibility that there are caregiving task differences between younger and older age caregivers or the possibility that older caregivers have greater stress from multiple roles as compared with young caregivers. Two other caregiver variables, gender of caregiver and the relationship of the caregiver to PWD, were not significant in this study. This may indicate that the gender of the caregiver and the relationship of the caregiver to the PWD have little influence on caregiver burden. Although many researchers have identified caregiving burden, the research did not produce conclusive results. Some studies have shown that the gender of the caregiver and the relationship of the caregiver to the PWD influence caregiving burden regardless of culture (Bedard, Pedlar, Martin, Malott, & Stones, 2000; Chumbler et al., 2003; Gallicchio et al., 2002; Lee, 1995b, 1999; Yee & Schulz, 2000). Some studies, however, report that there was no significant gender difference among carers regarding the degree of burden (Helmes, Green, & Almeida, 2005; McConaghy & Caltabiano, 2005). Fourth, comparing the strength of the relationship among the antecedent variables wandering and burden, striking differences were apparent. In this study, the effect of dependency in ADL on wandering was stronger than cognitive impairment. Many studies (Algase, Beattie, Bogue et al., 2001; Algase, Beattie, & Therrien, 2001; Miyamoto et al., 2002), however, found that mobility was associated with wandering behavior. In future research studies, there is a need to examine this association further. In addition, it was found that the strength of the relationship between age of caregiver and burden was much stronger than the relationship between wandering and burden. In this study, burden might have been influenced more by caregiver demographic factors than by impairment and behaviors of elders. The findings have implications for nursing practice designed to help family caregivers reduce their experience of burden. In this study, cognitive
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and physical functioning of PWD had a negative influence on caregiving burden through wandering behavior of PWD, which was a mediating variable. These causal relationships about caregiver burden can guide researchers and psychiatric mental health nurses to understand the relative strength of predictors for caregiver burden. Such knowledge will enable us to understand wandering behavior of PWD as a mediating factor and to develop more sensitive caregiver interventions to reduce the burden. In addition, these findings have implication for caregiving strategies and suggest the need to modify the environmental and behavioral context in systematic and consistent ways. In other words, familiar environment and communication with PWD might be a significant component in caregiving strategies of cognitive and physical impairments in PWDs so that wandering can be reduced. It is, hence, suggested that further research is necessary to explore other various factors, including psychosocial and environmental factors, of burden experienced by family caregivers who care for PWDs living in community. In conclusion, replication of the study with a larger sample needs to be considered to further enrich specific knowledge regarding wandering behavior of PWDs and burden experienced by Korean family caregivers of PWDs. Whether caregiver burden is culturally relevant to other ethnic groups has not been identified yet. Crosscultural differences or similarities in the theoretical model to explain the PWDs' impairments factors that affect caregiver burden through wandering need to be examined. The findings of this study suggest that further refinement of the underlying the model is warranted. ACKNOWLEDGMENT
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