Subjective burden was measured and analyzed using the Caregiver Burden Inventory and the Neuropsychiatric Inventory-Questionnaire. Multivariate regression models were used to analyze factors associated with each type of subjective burden. Conclusion: The high level of objective burden and subjective burden identified in this study suggests.
The five dimensions of subjective burden identified in Western countries may differ in other cultural groups or in countries with underdeveloped dementia services. Confirmation of these dimensions of subjective burden by undertaking factor analysis when using the same instrument in different cultural groups is strongly recommended in the literature (Gregorich, 2006; Meredith & Teresi, 2006). The purpose of this study is to explore the types of subjective burden and the factors associated with these burdens in a country without formal caregiver support using a sample of subjects in a province in China as a case study.
The specific objectives under the aim of the study are: 1) exploring the types of subjective burden; The NPI-Q was developed to measure BPSD severity and caregiver distress related to BPSD, a type of subjective burden by definition (Cummings, 1997; Kaufer et al., 1998). Bivariate analysis was applied to identify variables associated with each type of subjective burden using the Mann-Whitney U test.
Multivariate regression models were further used to identify the net effect of factors associated with each dimension of subjective burden as measured by the CBI.
Results
The majority of participants (77%) lived in the same household as care recipients, and over half (54%) had chronic illnesses themselves. Details of the socio-demographic information of the 152 caregivers and care recipients are shown in Table 1. Caregivers who were female, unemployed, married, or living in the same household as care recipients reported a significantly higher physical burden than their counterparts. who were male, employed, not spouse or not living with care recipients.
The overall model with physical strain as the dependent variable was statistically significant and explained 33% of the variance in physical strain (Table 5). Three factors, including caregiver employment status, duration of dementia, and severity of BPSD in caregivers, were found to be significantly associated with physical strain. Relatives who lived with the care recipients suffered a higher emotional burden than those who did not live with their care recipients (Table 4).
Multiple regression analysis revealed three significant factors explaining 25% of the total variance in emotional burden (Table 5). Time dependency burden asks about the “burden due to constraints on the caregiver's time” (Novak & Guest, 1989). These five factors included caregiver gender, caregiver-reported use of social support, caregiver age, duration of dementia, and severity of BPSD, which together explained 34% of the total variance in temporal dependency burden.
Developmental burden investigates "caregivers' feelings of being 'out of time' in their development relative to their peers" (Novak & Guest, 1989). Caregivers who were unemployed and living with care recipients reported greater developmental burden compared to those who were employed and not living with care recipients in the same household. The multiple regression model using developmental burden as the dependent variable was statistically significant and three factors were identified related to this burden, explaining 21% of the variance in.
Caregivers who lived with care recipients in the same household had a higher social burden than those who did not live with a demented person (Table 4). The full model using social strain as the dependent variable was statistically significant and explained 11% of the variance in social strain (Table 5). In this sample, three variables, including age of the caregiver, cohabitation with caregivers, and financial burden related to dementia, were found to be associated with social burden.
Discussion
This study supports previous studies reporting BPSD as a significant factor contributing to caregiver burden, as evidenced by the significant association between severity of BPSD and five of the six dimensions of subjective burden, namely physical, emotional, time dependence, and developmental burdens , as well as the caregiver's distress (Brodaty & Donkin, 2009; Huang, Lee, Liao, Wang, & Lai, 2012; Shaji et al., 2009). A body of evidence shows that BPSD can be managed through effective caregiver interventions delivered by the multidisciplinary team (Brodaty & Donkin, 2009; Johnson et al., 2013). In this study, the number of hours devoted to caregiving contributed the most to development burden, contradicting findings from developed countries that objective burden was less important in predicting subjective burden (Brouwer et al., 2004; Montoro-Rodriguez & Gallagher-Thompson, 2009 ).
Due to Chinese cultural norms, caregivers had more tolerance for subjective burden and sought social support in a crisis (Chan, 2010). In this study, physical assistance such as increasing helpers in the family or providing direct physical resources by hiring paid caregivers outside the family showed no impact on the participants' subjective burden. The study produced different findings from previous studies in developed countries (Alzheimer's Disease International, 2009; Conde-Sala, Garre-Olmo, Turro-Garriga, Vilalta-Franch, & Lopez-Pousa, 2010; Kim et al., 2012; Xiao et al. al., 2014).
This may be due to the widespread shared caregiving among family members in China (Xiao et al., 2014). A similar structure of subjective burden as measured by the CBI was found in the participants of this study. This result mirrored the increased physical burden found in other similar studies (Wang et al., 2013; Xiao et al., 2014).
These two items were correlated with social and time dependence burdens, respectively, from previous studies (Chou et al., 2002; Novak & Guest, 1989). The most striking finding from the analysis in this study was that all items under “social burdens” were about family issues. A possible explanation may be that the family was the main source for caregivers to seek support due to the undeveloped formal social support in dementia care and the compromises made with other family members to maintain this source of support ( Shaji et al., 2003 ; Wang et al. al., 2013).
Future studies need to improve the models to better explain the changes in each type of subjective burden. This study reveals the comprehensive structure of caregiver burden and advances knowledge about the associated factors that contribute to the different types of caregiver burden in countries without formal dementia support, such as China. The high level of objective and subjective burdens identified in this study suggests that it is imperative to establish government-funded formal caregiver support given the rapid growth of people with dementia and the decrease in the number of available family caregivers in China.
In addition, caregiver support services and interventions designed to alleviate caregiver burdens should target or be based on research evidence that describes the types of burden and the factors associated with each type of burden. Further studies, especially longitudinal studies, are needed to identify further factors contributing to caregiver burden in China, which will also provide important evidence for the development of dementia care services in other countries with similar cultural and social contexts . A systematic review of the association between the behavioral and psychological symptoms of dementia and caregiving burden.
Predictors of subjective and objective care burden in older female caregivers of adults with intellectual disabilities. Differential burden characteristics between spouses and adult-child caregivers of patients with Alzheimer's disease: An exploratory comparative design. Assessing the impact of neuropsychiatric symptoms in Alzheimer's disease: the Neuropsychiatric Inventory Caregiver Distress Scale.
People's Republic of China on the Protection of the Rights and Interests of the Elderly (in Chinese). Caregiver burden Objective burden Subjective burden Financial burden Hours/week of caregiving Caregiver problems in relation to BPSD Time dependency burden Developmental burden Social burden Emotional burden Physical burden Employment Duration of dementia NPI-S.
