Prior to the present study, Liew et al. (Liew, 2016) found that the CG is present in Asia, as measured by MM-CGI. As in Liew et al. (Liew et al., 2018), the results obtained in the current study showed that culture influences the expression of CG, and the difference can be attributed to the difference of racism and culture (Liew, 2016). Culture is an important factor in shaping a person’s perceptions of family and society responsibilities, and thus, it also influences the FC’s perception of CG. Abir (Bekhet & Avery, 2018) suggested that FCs’ experience many different kinds of risk factors, such as feelings of difficulty and being challenged, frustration, negative feelings (mainly anger and grief), and lack of social support. As a consequence, CG is widely associated with dementia (Passoni et al., 2015). In China, most FCs provide support to patients at home, but the one-child policy (e.g., four grandparents, two parents, and one child family structure) has multiplied the caregiving burden (Liu et al., 2017). Moreover, compared with other countries in the world, China adheres to individualist values. Chinese traditional culture endorses core values of collectivism and the Confucianism filial piety value, which means the family members have to take care of their relatives. In fact, caring for ill and aging relatives is a social obligation of family members by law (Novak & Guest, 1989). Long-term care can have a negative impact on FCs’ mental and physical health, as well as family income, examples of which are caregiver burden, CG, and loss of freedom (Ford et al., 2013). Considering the current results, the influence of culture on CG is worth further exploring in the future.
The present study assessed the agents that might influence CG in China. We evaluated many variables, such as FC’s and patients’ age, gender, employment situation, and the number of caregiving h/day, relationship to patient, educational level and co-residency with the patient. The study found that female caregivers experienced more severe grief compared to male caregivers, possibly because women are more emotionally delicate and have less psychological resilience and stress tolerance, leading to greater vulnerability to emotions and circumstances. As stated in the research study by delfino et al, female caregivers are more likely to experience psychological disorders than males, particularly exhibiting higher levels of depression and anxiety (Delfino et al., 2018). In addition, we found that caregivers who lived with the patients were more likely to grieve. This may be because they have a closer relationship with the patient and often witness the progress and deterioration of the patient's disease, so they are more likely to experience helplessness and loneliness, and have higher levels of grief (Viñas-Diez et al., 2017). Meanwhile, taking care of patients occupies their basic life and affects their physical and mental health. It leaves them in a constant state of fatigue and without time for social activities, which prevents them from meeting their emotional needs and generates pessimism and negative emotions. In summary, healthcare professionals should focus on the psycho-emotional reactions of such caregivers, and guide them to face positively by strengthening communication with them and providing them with psychological support in time.
Our study’s finding, however, did no show a significant impact of all the risk factors, which was supported by other investigations (Warchol-Biedermann et al., 2014). According to these results, we cannot directly assume that these risk factors do not influence CG at all, but we may suppose that the sample size of our study is too small. Future studies need to have a bigger sample size than ours. Another possible explanation for this finding is that most of FCs lack knowledge about dementia, which affects their expression of sadness. Some investigations reported that the diagnosis and management of dementia in China is still in the exploratory stage, and Chinese citizens have limited knowledge of dementia related factors, which is particularly important for caregivers of dementia patients (Jia et al., 2020; Zheng et al., 2020). Most FCs do not understand what dementia is and do not know how to care for dementia patients. Therefore, China should provide FCs with knowledge and skills to care for and cope with mental and behavioral problems of dementia patients, thereby increasing their utilization of external resources and improving their positive thinking, which can help FCs to control their destiny, as indicated by Abir et al (Bekhet & Avery, 2018). Moreover, the face-to-face structured interviews may also increase interview bias, as some FC may be too shy to express their emotions, thereby influencing the results (Wang et al., 2014).
As shown in previous studies, CG was not necessarily triggered by the added strain, and CG might be caused by greater impairment in the patients, which is related to special changes in the patients’ BPSD. It is possible that changes in the patients’ BPSD may indicate that FCs have to give up some aspects of their lives to care for relatives. According to a qualitative study carried out by Patricia et al., disenfranchised grief and ambiguous loss were the two important elements of CG (Shuter et al., 2014). When the FC and patients no longer communicate in the way they did, or when the FC no longer feels the patients’ supports, the ambiguous loss occurs, e.g., loss of companionship, loss of hope for improvement, and relationship dynamic change (Noyes et al., 2010). FCs gradually lose the essence of their loved ones because of the degenerative nature of the disease, which was confirmed in our study. Moreover, this explanation is supported by Warchol-Biedermann (Shuter et al., 2014) who found that FCs realize that the disease develops over time with no hope of improvement, and the condition was only getting worse; such realization might affect CG.
The findings of this study showed the significant influences of burden in CG. The heavier the burden on FC, the stronger the feeling of CG is. These results were also in line with those of Thyrian (Thyrian et al., 2015), who found that the patients with psychiatric and behavioral problems might increase the burden on the caregiver, and the CG scores increase rapidly. FCs have to play an important role in their family after their relatives, such as parents and spouses, are diagnosed with dementia (Wang et al., 2014). They have to give up their professional career and freedom, because they have to spend a lot of time taking care of patients. Possibly, different local economic levels may account for the results, because this study is conducted in China. China is a developing country with relatively few medical resources compared with developed countries. This explanation was supported by the similar findings of Hu (Hu et al., 2016). Therefore, lack of social support can hinder positive care outcomes, thereby suggesting the need for social support for FCs.
The findings of the study further showed that male and female FC experience CG differently depending on the type of caregiver burden. According to the result, male CG seems to did show significant influence of physical, emotional and time dependence burdens. Caregiver burden perhaps is related to the patients’ BPSD and the caregivers’ psychology (Feast et al., 2017). Moreover, male FC seems to show significant influence on emotional burden, for instance burden and depression. These burdens may be caused by lack of social support and lack of positive outlook. Abir (Bekhet & Avery, 2018) suggested that social support and psychological education program can have a positive impact on the health and resilience of male FCs and family unit. Moreover, support groups can help male FCs develop friendships and relationships with other FC, thereby helping them exchange positive experiences with each other. Additionally, female FCs’ CG had significant differences in caregiving loss, in the aspects of time dependence burden, social burden. Female FCs who are unemployed live with patients in the same household and carry a great financial burden; they suffer significantly higher time dependence burden compared with an average wife (Wang et al., 2014). Furthermore, this result was supported by Burcu (Akpınar et al., 2011); most of the ancient female FCs are eager to be free to spend time on interesting activities in their later years, because they have already experienced carrying the responsibility of caring for their children when they were young. Women may feel that their role as caregivers should be over when their children grow up, because they may experience a greater burden and mental imbalance when they find themselves inadvertently serving as caregivers for dementia patients. Another explanation is that female FCs feel ‘‘out of sync’’ with their friends’ expectations and opportunities.
Limitations
There are several limitations in this study. First, the convenience sampling and cross-sectional design made it difficult to identify causality. Therefore, longitudinal and qualitative studies are needed to explore the associated factors. Second, more variables should be added in the future, such as monthly family income, duration of caregiving (years), healthy status of caregivers, and so on. Future research should use a larger sample size to clarify the difference between the profile of the caregiver and the levels of grief. Third, this study used samples from a certain province in China, which might not reflect the situation of FCs in other countries in the world. Thus, a large-scale multi-site study is needed. It is of great significance to explore the influence of CG on family management of dementia in China. Results provide a scientific basis for the establishment of family management strategy system of dementia.