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Caregivers' self-efficacy and burden of managing behavioral problems in Taiwanese aged 65 and over with dementia.

Dementia is a serious public health problem that affects a large proportion of the aging population worldwide (World Health Organization, 2012). In Taiwan, approximately 4.8% of community-dwelling older people are diagnosed with Alzheimer's disease (AD) and related dementia, and over 10,000 new cases are being identified each year (Taiwan Alzheimer's Disease Association, 2011). In Asian societies, adult children have an obligation and are expected to care for their parents when they are old and sick at home because of the value of filial piety (Stiens, Maeck, & Stoppe, 2006). Institutionalized care may only be considered as a last resort when the family caregivers are unable to fulfill this obligation (Chen et al., 2006). Researchers (e.g., Huang, 2004) have found that some primary family caregivers in Taiwan spend more than 40 hours per week in caring for their aging relatives with dementia and this causes a significant burden.

Dementia behavior disturbance (DBD) is a common symptom of dementia (Fuh, Liu, Mega, Wang, & Cummings, 2001; O'Rourke, Bedard, & Bachner, 2007). Behavioral symptoms include restlessness, verbal abuse, physical assault, communication difficulties, narrative or behavioral repetition, disorientation, and wandering (Chiu, Chen, Yip, Hua, & Tang 2006; Fuh & Liu, 2006). Researchers have reported that inappropriate sexual behavior is one of the most troublesome symptoms for caregivers (Ehrenfeld, Tabak, Bronner, & Bergman, 1997; Huang, Shyu, Chen, & Hsu, 2009; Schindel, 2011). Caregivers reported that they did not know how to manage the behavioral problems of those with dementia and often experienced feelings of powerlessness (Davidhizar, 1992). However, it was found that when family caregivers had positive perceptions of their abilities to manage DBD of those with dementia successfully, they reported increased levels of self-efficacy and confidence and decreased levels of stress (Contador, Fernandez-Calvo, Palenzuela, Migueis, & Ramos, 2012; Gallagher et al., 2011).

Self-efficacy is defined as one's belief in one's ability to achieve, and refers to the amount of confidence held that one can achieve specific behaviors or tasks (Bandura, 1991). Therefore, self-efficacy often affects how well an individual deals with a particular situation (Campbell et al., 2008). Several researchers have found that low levels of self-efficacy are associated with high levels of perception of burden and depression among family caregivers of people with dementia (Cheng, Lam, Kwok, Ng, & Fung, 2013; Gallagher et al., 2011). The level of self-efficacy of family caregivers in DBD management has been described as one of the indicators of the level of a caregiver's burden (Campbell et al., 2008).

Traditional social values provide the moral basis for family-centered caregiving in Taiwan, leading to the majority of Taiwanese people with dementia being cared for at home (Huang et al., 2009). Around 50%-90% of people with dementia were reported as having experienced medium to severe behavioral symptoms during the course of their disease (O'Rourke et al., 2007). Therefore, caring for relatives with dementia represents a potentially stressful challenge for family caregivers, particularly when dealing with behavioral disturbance (Black et al., 2010; Gallicchio, Siddiqi, Langenberg, & Baumgarten, 2002). To date, little is known about the family caregivers' level of self-efficacy in regard to dealing with behavior problems and their perceived burden in caring for relatives with dementia in Taiwan. Therefore, our aim in this study was to explore family caregivers' self-efficacy in managing DBD of their perception of the relatives with dementia and the factors related to their care burden.

Method

Participants

We used a cross-sectional design to investigate a purposive sample of 162 community-dwelling people aged 65 and over being treated for dementia in the psychiatric and neurological outpatient departments in a hospital and 162 primary family caregivers of these people in Eastern Taiwan. The inclusion criteria for dementia patients were: (a) a diagnosis of dementia based on the criteria in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; American Psychiatric Association, 2000), (b) mild to moderate severity based on the Clinical Dementia Rating (CDR), and (c) an age of 65 years or older. The inclusion criteria for primary family caregivers were: (a) age older than 18 years, and (b) self-identified as the person who was mainly responsible for caring for their relative with dementia.

The mean age of the people with dementia was 80.6 [+ or -] 8.5 years. The majority were female (59.3%) with formal education levels of fewer than nine years (78.4%). The mean duration of suffering from dementia was 1.7 [+ or -] 2.2 (range 0.8-17) years. Among the caregivers, 67.3% were female, 77.8% were adult children of the people with dementia, and 68.8% had more than nine years of formal education.

Measures

Assessment of people with dementia. We evaluated the functional status of the people with dementia using Barthel's Index for Basic Activities of Daily Living (BADL; Wade, 1992) and the scale of Instrumental Activities of Daily Living (IADL; Lawton & Brody, 1969). Higher scores on the BADL and IADL indicate higher functional status.

Severity of cognitive impairment was measured using the Chinese version of the Clinical Dementia Rating (CDR; Lin & Liu, 2003). A CDR score of 0 indicates normal, and scores of 0.5, 1, 2, and 3 indicate possible, mild, moderate, and severe dementia, respectively.

The 28-item Dementia Behavioral Disturbance (DBD) Scale was adapted from Baumgarten, Becker, and Gauthier (1990) for use in assessing the frequency of behavior problems of the participant group with dementia. This scale has eight factors: general aimlessness, aggressiveness, forgetfulness, lack of cooperation, restlessness or agitation, incontinence, apathy, and inappropriate sexual behaviors. Correlations among the factors ranged from -0.11 to 0.08 (Chappell & Penning, 1996). Primary caregivers rated the frequency of each of the 28 items of the DBD Scale during the previous week on a 5-point scale, 0 = never, 1 = seldom (1-3 times per week), 2 = sometimes (4-6 times per week), 3 = often (once per day), and 4 = always (several times per day). Higher scores indicate greater severity of DBD (Baumgarten et al., 1990).

Assessment of primary family caregivers. Caregivers' self-efficacy level of managing behavioral problems of their relative with dementia was assessed using the DBD self-efficacy scale, which was developed by the researchers of this study based on the DBD scale (Baumgarten et al., 1990). The validity of the DBD self-efficacy scale was evaluated by a clinical psychiatrist, a neurologist, and two psychiatry nursing educators. The content validity index value of this scale was 0.91 with a Cronbach's alpha coefficient of 0.90. The caregivers were asked to rate their self-efficacy level of managing DBD of their relative with dementia on a 5-point scale (0 = none, 1 = little, 2 = some, 3 = fair, 4 = good).

Caregiver burden was assessed using the Chinese version of Zarit's Burden Interview (CZBI; Zarit, Reever, & Bach-Peterson, 1980), which we translated from the original version. The CZBI comprises 22 items rated on a scale of 0 to 4, with scores ranging from 0 to 88. Higher scores indicate a higher level of care burden. Caregivers reported on the frequency of specific occurrences or problems related to health, finances, social life, and interpersonal relationships of their relatives with dementia. The translated CZBI has a Cronbach's alpha coefficient of 0.89 so it can be considered to have a high degree of reliability (Ko, Yip, Liu, & Huang, 2008).

Procedure

This study was approved by an Institute of Review Board at a hospital in Eastern Taiwan. The group of people with dementia who had been selected as eligible to take part and their primary family caregivers or the authorized representatives of the people with dementia were informed and invited to participate in the study. Informed consent was obtained from the primary caregivers. Not every person in the group with dementia was able to give their informed consent due to cognitive impairment, therefore, informed consent was obtained from their primary family caregivers or authorized representatives and they were assured of confidentiality. Interviews were conducted in two stages: first, the people with dementia were assessed by health professionals in the outpatient department using the BADL, IADL, and CDR; subsequently, the family caregivers rated the frequency of DBD of their relative with dementia during the previous week and self-reported their own efficacy level in DBD management. Caregivers also completed the CZBI in the outpatient department following the researcher's instructions.

Results

BADL, IADL, and CZBI Scores. The people with dementia had a mean Barthel's Index score of 65.2 [+ or -] 32.1 (range 0-100), and a mean IADL score of 7.6 [+ or -] 6.3 (range 0-24). The majority had a score indicating a moderately severe level of dementia.

Among the caregivers, the mean duration of care provision for their relative with dementia was 3.8 [+ or -] 6.4 years, and the mean hours of care giving per week was 75 [+ or -] 44.5 hours. Caregivers' CZBI mean score was 37.8 [+ or -] 15.4 (range 0-88).

Frequency of Elderly Patients with DBD

The mean score on the DBD scale among elderly patients with dementia was 2.13 [+ or -] 0.53 (range 0-4). The most frequent behavior types were apathy (2.85 [+ or -] 0.94); forgetfulness (2.76 [+ or -] 0.88); restlessness or agitation (2.38 [+ or -] 0.81); incontinence (2.18 [+ or -] 1.26); general aimlessness (2.11 [+ or -] 0.79); lack of cooperation (1.88 [+ or -] 0.89); aggressiveness (1.77[+ or -] 0.67); and inappropriate sexual behavior (1.11 [+ or -] 0.42).

Family Caregivers' Self-efficacy in Managing DBD

The mean score on the DBD self-efficacy scale among caregivers was 1.57 [+ or -] 0.73 (range 0-4). Family caregivers perceived that they had the least self-efficacy in the following type of behaviors: inappropriate sexual behavior (0.23 [+ or -] 0.74); aggressiveness (1.07 [+ or -] 0.84); general aimlessness (1.47 [+ or -] 0.95); lack of cooperation (1.47 [+ or -] 1.38); incontinence (1.71 [+ or -] 1.61); restlessness or agitation (1.88 [+ or -] 1.04); apathy (2.14 [+ or -] 1.21); and forgetfulness (2.21 [+ or -] 0.99).

Predictors of Caregiver Burden

The results of multiple regression analyses showed that the frequency of DBD of people with dementia, being a female caregiver, increased hours of care per week, and being an adult child of the person with dementia as the primary caregiver were significantly positively associated with increased care burden. The level of caregiver self-efficacy in DBD management and the caregiver having a higher level of education were significantly negatively associated with care burden. All the factors combined accounted for 36.1% of the variance (Table 1).

Discussion

Our results in this study showed that the amount of time spent caring for relatives with dementia was higher (around 75 hours per week) compared with findings in previous studies of baby-boomer caregivers of Alzheimer's patients in Western countries (around 18 hours per week; see e.g., Black et al., 2010). The findings may imply that family caregivers, especially females, in Taiwan experience a considerably greater care burden for relatives with dementia than do their Western counterparts. This result was consistent with the results of previous research in which women were reported to have a higher level of care burden (Campbell et al., 2008; Gallicchio et al., 2002) and spend more time giving care (Casado & Sacco, 2012; Hong & Kim, 2008) compared to male caregivers. In Chinese culture, female caregivers often are expected to take on the primary caregiving role at home as their aging relatives become sick, and this may result in distress and burden for the female caregivers (Huang, 2004; Kim, 2001; Ory, Hoffman, Yee, Tennstedt, & Schulz, 1999). Furthermore, we found that the parent-child relationship was one of the contributors to caregiver burden. These results are similar to those of Kim (2001) and Huang (2004), who investigated the caregiving role in the Asian societies of Korea and Taiwan, respectively. In the present study, the primary caregiver having a lower level of education was significantly associated with a higher level of care burden. This finding was similar to those gained in previous studies that a lower level of education was significantly associated with less self-efficacy (Gallagher et al., 2011) and higher care burden (Casado & Sacco, 2012; Hong & Kim, 2008; Huang, Lee, Liao, Wang, & Lai, 2012).

The frequency of DBD in the people with dementia was significantly influenced by the factors related to caregiver burden, and this finding was consistent with those of previous researchers (Baumgarten et al., 1990; Danhauer et al., 2004; Huang et al., 2012). In examining the relationship between the caregiver's level of self-efficacy in managing individual types of DBD and caregiver's burden, we found that family caregivers had the lowest levels of self-efficacy in relation to managing the inappropriate sexual behaviors of their relatives with dementia. This finding is consistent with those obtained in previous studies of caregivers in relation to their burden in caring for people with dementia (Harris & Wier, 1998; Huang et al., 2009; Schindel, 2011). Further, the level of self-efficacy in regard to dealing with aggressive behaviors was negatively associated with caregiver burden and this is similar to findings in Western studies that family caregivers who had lower levels of self-efficacy in regard to managing aggressive behaviors perceived higher levels of care burden (Huang, Shyu, Chen, Chen, & Lin, 2003; Rabinowitz, Mausbach, & Gallagher-Thompson, 2009). Huang et al., also reported that dealing with the aggressive behavior of people with dementia at home was extremely difficult for family caregivers and required a lot of help from health care professionals.

Limitations

There are several limitations in this study that need to be taken into consideration. Due to the purposive nature of the sampling in the outpatient department of a hospital in Eastern Taiwan, the generalizability of the findings is limited. Most of the instruments were self-reported by the family caregivers, so may be subject to potential bias. A larger sample size in different settings and the examination of further factors in the relationship of caregiver self-efficacy and care burden is needed.

Conclusion

In order to alleviate family caregivers' burden, health care professionals need to enhance family caregivers' self-efficacy in regard to managing people with DBD. It is important for nursing administrators and educators to develop suitable educational programs for family caregivers related to dementia care and the management of behavioral problems, according to the level of education and the needs of the family caregiver. Furthermore, a family-centered, integrated care model with long-term care resources should be provided for family caregivers to assist with caring for their relatives with dementia in the community.

http://dx.doi.org/10.2224/sbp.2013.41.9.1487

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SHU-LIN UEI

Kaohsiung Medical University and Mennonite Christian Hospital, Taiwan, ROC

HUEI-Chuan Sung

Tzu Chi College of Technology

MEI-SANG YANG

Kaohsiung Medical University

Shu-Lin Uei, College of Nursing, Kaohsiung Medical University, and Department of Nursing, Mennonite Christian Hospital, Taiwan, ROC; Huei-Chuan Sung, Department of Nursing, Tzu Chi College of Technology; and Mei-Sang Yang, College of Nursing, Kaohsiung Medical University.

Correspondence concerning this article should be addressed to: Mei-Sang Yang, Kaohsiung Medical University, 100 Shih-Chuan 1st Road, Kaohsiung 80708, Taiwan, ROC. Email: msyang@kmu.edu.tw
Table 1. Multiple Regression Analysis Predicting Family Caregivers'
CZBI Scores

Variables                                               B        p

People with dementia (n = 162)
  BADL                                                 .106   .345
  IADL                                                 .462   .302
  CDR                                                 1.261   .102
  DBD score                                            .604   .000 ***
Family caregivers (n = 162)
  Gender (female)                                     5.306   .015 *
  Age                                                  .103   .216
  Education level ([less than or equal to] 9 years)    .221   .007 **
  Hours of care per week                               .058   .005 **
  Relationship to the person with dementia (child)    3.387   .024 *
DBD self-efficacy score
  Aimlessness                                         -.184   .015 *
  Aggressiveness                                      -.356   .005 **
  Forgetfulness                                        .691   .153
  Lack of cooperation                                 -.166   .023 *
  Restlessness                                        -.035   .972
  Incontinence                                        -.056   .064
  Apathy                                              1.458   .924
  Inappropriate sexual behavior                       -.256   .008 **

[R.sup.2] = 39.4%, Adjusted [R.sup.2] = 36.1%

Note. * p < .05, ** p < .01, *** p < .001.
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Author:Uei, Shu-Lin; Sung, Huei-Chuan; Yang, Mei-Sang
Publication:Social Behavior and Personality: An International Journal
Article Type:Report
Geographic Code:9TAIW
Date:Oct 1, 2013
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