Introduction
Dementia has increasingly become a universal public health issue (1). In China, the incidence rate of dementia in elderly people from 60 to 69 years is 2.9%, while it is 31.9% for those above 90 years (2). With the aging of China’s population, the number of elderly patients with dementia has risen (3). According to the latest statistics, in 2019, over 15.33 million Chinese people were suffering from dementia and the number is expected to be 45.33 million in 2050 (4). Dementia is a chronic and progressive illness characterized by severe impairment and high dependencies (5, 6). Patients with moderate-to-severe degrees of dementia also need full-time care; caregivers’ duty mainly includes daily tasks, meeting emotional needs, and paying bills. Therefore, caregivers are expected to take more responsibilities as the condition of patients with dementia deteriorates.
Home care is essential in China and around the world since people with dementia and Alzheimer’s disease are on the rise. Especially, in China, Filial piety (or Xiao) in Confucianism values is the core of Chinese traditional culture and an important part of family ethics, and it mandates adults to respect and take care of their parents (7). Traditionally, only childless or poor elderly people enter public care, and Chinese elder individuals also feel ostracized and prejudiced against entering nursing homes (8). The influence of the filial piety notion forces the relatives of the elderly to be more willing to care for the elderly at home, and 80% of patients with dementia are therefore watched over at home with family caregivers as primary caregivers (5).
However, studies have demonstrated that dementia exerts a heavy burden on the family. Providing care for patients with dementia can be a daunting task for family caregivers and also an uncomfortable experience, involving physical, mental, financial, and social aspects (9, 10). Caring for a person with dementia presents challenges that are different from other caregiving situations, mainly because the family can feel bereft since patients are unable to communicate effectively, express love, or even forget everything, which can add to their internal pain and induce mental burnout (11). In addition, the level of depression and mental health issues among family caregivers was significantly higher than among other caregivers for chronic diseases according to the findings of recent studies (12, 13). Given the high prevalence of dementia and the considerable effect of care burden on caregivers’ health, it is necessary to better understand the influencing factors of caregivers’ burden.
Unfortunately, although a growing number of studies have concentrated on the family care burden for dementia in China, some factors remain controversial. For example, Wang et al. (14) concluded that increasing helpers would not reduce the caregiving burden, but Bai (15) came to the opposite conclusion; He et al. (16) believed that financial burden was the most important factor affecting the caregiver, while Huang et al. (17) believed that the number of nocturnal awakenings had the greatest impact. Moreover, a systematic review (18) of the care burden of patients with dementia in Turkey identified that older age patients increased caregiver burden; nevertheless, some studies in China were contradictory. Therefore, our research aims to systematically identify factors and the existing problems and to help the healthcare system to lay down intervention schemes based on our review; the review will also provide evidence for the development of dementia care services in other countries, especially those similar to China in culture and social landscape.
Discussion
This review identified and consolidated many different variables that affect the burden on Chinese caregivers for patients with dementia, and it is possible to achieve some general conclusions from the results. Among the factors, the severity of dementia, poor self-care ability, neuropsychiatric symptoms, economic stress, care time, number of helpers, poor health status, and poor psychological status could be found in many studies.
For patient factors, the severity of dementia, poor self-care ability, and neuropsychiatric symptoms were the most burdensome to caregivers, which were consistent with the previous research (9, 18, 40). As the severity of dementia increases, the need and difficulty in taking care of patients also increase. Patients with severe dementia presented poor self-care ability and mobility; thus, family members need more time and energy for intensive care (14, 15, 24, 26, 30, 34, 36). Chinese healthcare providers have implemented the continuum of care for dementia to raise awareness, risk assessment and screening, and early diagnosis of dementia; however, low diagnosis rates and delays in seeking care for patients with dementia remain a significant concern (3, 33, 41). Thus, more efforts are needed to enhance the early detection of the disease.
Furthermore, we also found that there was a strong positive correlation between neuropsychiatric symptoms of patients with dementia and caregivers’ burden (14, 22, 25, 30, 32, 33), especially when patients had symptoms such as agitation, irritability, abnormal motor behavior, depression, and hallucinations (25, 42). These symptoms would not only hinder the treatment and increase the difficulty of care (30, 33) but also make caregivers feel helpless and sad and even contribute to anxiety and depression when they faced unfamiliar family members (11, 32). In a comparison between Australia and China, Xiao et al. (5) concluded that the prevalence of behavioral and psychological symptoms of dementia (BPSD) among Chinese patients is higher than the 61–88% prevalence in Australia, which may be attributed to underdeveloped geriatric care facilities and lack of behavioral management and services for dementia, and Wang et al. (14) also showed the same result. Strong establishment and improvement of caregiver rehabilitation programs and dementia behavior management services will be needed in the future to reduce neuropsychiatric symptoms of dementia (14, 30, 33).
It is noteworthy that the time spent providing care was considered an important factor of caregiver burden, as this was not strongly emphasized in the previous systematic reviews (18, 40). Wang et al. (14) study showed that Chinese caregivers spent an average of 127.6 h per week on care, which is significantly more intensive than the 27.1 h per caregiver per week reported in developed countries (12). This can be explained by the fact that cultural awareness of caregiving obligations may augment the time burden felt by caregivers (26). Caregivers are influenced by filial piety and view taking care of family members as their responsibility. Moreover, they believe that it is unacceptable to share family affairs with outsiders, and the fear of discrimination, if others know about it, may prevent them from actively seeking others’ help (14, 27, 35, 39). However, several studies have consistently stated that if other helpers were available, the burden on family caregivers would be significantly reduced (15, 28, 31, 33, 35, 43). Therefore, in the future, we should draw on the successful experiences of other countries to establish community-based day-care centers, short-term care facilities, and respite service measures such as providing in-home care to reduce direct caregiver time (30, 31, 35). In addition, the number of nocturnal awakenings also indirectly increases the caregiver’s care time and prevents caregivers from meeting their sleep needs (17, 37).
The result of this review was consistent with Adana et al. (18) and Chiao et al. (40), indicating that female caregivers had a higher care burden (14, 22, 37). A previous study demonstrated that female caregivers performed caregiving tasks 2.5 times more than male caregivers (44), which may be in line with the traditional Chinese saying of men rules outside and women rules inside (nan zhu wai and nu zhu nei). Women always play the role of primary caregivers for all the family members with multiple household tasks (18, 22, 37). Moreover, female caregivers pay more attention to the quality of care and the relationship with patients, devote more energy and time, and tend to experience intense guilt and stress (45), resulting in both physiological and psychological burdens. However, a systematic review (46) emphasized that male caregivers experienced a higher care burden because of a lack of social readiness as they faced role changes. Men are also likely to become primary caregivers in the future (47), but less is known about the condition and needs of male caregivers (48). We, therefore, need more research to be conducted in the future to explore how male caregivers cope with their caregiver role.
Some studies identified that caregivers with poor health and financial issue are more stressed. When caregivers suffer from diseases, they usually cannot take care of themselves through tedious care. Coupled with lasting mental stress, caregivers are under great pressure, which will formulate a vicious circle and aggravate their illness (15, 30, 31, 33, 39). The median monthly direct medical cost of caregiver expenditures reported in He’s study was 600 RMB and 78.4% of caregivers felt financial stress (16), and one study has stated that patients with severe dementia spent nearly two times as much on annual expenses as those patients with mild dementia (10). Thus, more severe dementia indicates a more severe financial burden for caregivers. To ease the financial burden of caregivers, Sweden and the United States have offered caregiving as a formal profession and paid for full-time caregivers, and Canada, Sweden, and the United Kingdom have offered tax benefits for caregivers, while China does not have care subsidies directly for family caregivers (49, 50). Furthermore, dementia drug costs have been integrated into health insurance in China, but some problems such as few illness types and little money for reimbursement still exist, and families still have to bear most of the medical bills (16, 32, 37).
Also, some studies have reported that caregivers were significantly more vulnerable to suffering from anxiety and depression (15, 24, 29, 37, 51, 52). The psychological burden has become the most important aspect (29, 52), and this may be related to the fact that the caregiver’s life is mainly focused on caring for the patient and has no time for personal life, employment, and social life (37), which creates a strong role conflict. In addition, the high cost of treatment, the patient’s BPSD symptoms, and the poor health status of caregivers can have a negative impact on the caregiver’s psychology (15, 29, 37). Meanwhile, lasting negative emotions increased the risk of patient abuse among family caregivers (53). Consequently, caregivers need psychological support to help them develop reasonable emotional expressions, enhance their ability to seek help and solve problems, and prevent and reduce the occurrence of psychological problems.
The effect of age on the burden remains controversial. Two studies (30, 37) revealed that caregivers perceived the heaviest burden when patients were less than 70 years of age. Younger patients commonly undertake many family responsibilities and higher expectations, so the absence of patients’ roles could cause higher dissatisfaction; meanwhile, diagnosed patients usually felt embarrassed so they are likely to hide their illness and delay therapy. However, Adana et al. (18) and Thyrian et al. (54) found contradictory results and suggested that disease and advanced age resulted in this finding. The age of the caregiver also influences the care burden. One study (17) demonstrated that older caregivers have greater physiological and psychological burdens, while other studies (14, 18, 25, 36, 46) hold the opposite view. Future large-scale and high-quality longitudinal studies should be undertaken to authenticate the age factor.
Low education level (35, 38) and poor disease awareness (28, 35) were associated with a higher caregiving burden. Caregivers with low education levels are less knowledgeable about dementia disease and are prone to mood swings when faced with disease-related events such as the prognosis of recovery and deterioration of the disease, resulting in a heavier psychological burden (35, 38). Compared to 40% of dementia caregivers in the United States who have a college degree or higher (12), caregivers in China have a relatively low level of education (55). Furthermore, 49.0% of Chinese caregivers had disease awareness significantly lower than the overall level of 56.5%, and only 35.7% of patients had disease awareness (56). Therefore, caregivers need the training to enhance their knowledge on disease and caregiving skills. It is noticeable that there are only 6.25% of the 752 Chinese dementia caregivers had received caregiving training according to a questionnaire result (57).
The current review shows that social support is a protective factor that can lessen the caregiving burden (14, 23, 27). Social support is a buffer to regulate life events and psychological stress (58), which is beneficial to physical and mental health. When receiving more supportive services from family, friends, occupation, and community, caregivers can markedly reduce their burden (23, 27, 58). Long-term care insurance policy has been implemented in 15 pilot cities in China since 2016, and one study found that patients covered by long-term care insurance were only required to pay 10% of the cost for the services they received (59), which significantly reduces the financial burden on families. However, many patients with dementia were not covered. The policy was still not powerful enough to meet the need of the patient family (60). In some developed countries, daily care has been jointly undertaken by the home and community. However, the community does not work well due to the sociocultural background in China, the lack of professional dementia care services, and insurance support (26). Thus, a hospital–community–family-integrated social support model can be established to assist caregivers in all aspects (61).
We critically analyze the caregiver burden of home-based families in the Chinese cultural context and identify some problems, highlighting the way to future construction. In addition, our review can also bring inspiration to some developing countries to help alleviate their caregiver burden. There are also several limitations to this study. First, the included articles are cross-sectional studies with poor causation. Second, the study used different scales to measure the caregiving burden, which may differ in the interpretation of the results, and finally, although we included two studies from Hong Kong and Taiwan, we did not conduct a detailed analysis because their policies and circumstances are different from those of the mainland.
In summary, family caregivers of patients with dementia generally have burdens, and 32 factors were identified that were associated with caregiver burden. Among them, the severity of disease, poor self-care ability, neuropsychiatric symptoms, care time, poor health status, economic stress, poor psychological status, and social support were considered as main factors, but there was no conclusion on age. By identifying these factors, hospitals, decision-makers, and communities can carry out special projects for these populations, to provide appropriate assistance, or design corresponding intervention measures to reduce the caregiver burden and improve the quality of care for patients with dementia.