AD is a progressive neurodegenerative disorder, which causes the cognitive decline of memory, judgment, orientation, and reasoning abilities [11]. Behavioral and psychological symptoms gradually occur in AD patients, resulting in disability [12] and most patients require complete care in the middle and later stages of the disease. According to previous studies, either from the perspective of public health or disease care, family care has certain advantages compared to nursing facilities [13]. Nevertheless, in the current situation, family care has undoubtedly brought a huge burden to caregivers.
Our results suggest that family care is the most common choice for families of AD patients in China. The majority of patients and their families are not willing to choose nursing homes. Although many nursing facilities have been set up, the nursing facilities have a low acceptance rate among families with older patients (Table 6). Aside from the patient's health condition, other problems can include an insufficient number of nursing homes, inadequate facilities and care, high cost, and so on. Many people view that nursing homes cannot provide individual care to patients. It is noteworthy that some family caregivers mention that the patients who earlier chose to live in a nursing home, for various reasons, often decide to leave the nursing home and choose family care. This shows that the construction of China's nursing homes and the corresponding support system is still not perfect. In addition to the above factors, the reasons for this phenomenon include Chinese traditional cultural heritage. Chinese people attach great importance to filial piety. In traditional Chinese culture, when parents fall ill, children should care for their parents; those who do not may face various social difficulties both at home and in the community. Some older adults who enter a nursing home are also seen as being abandoned by their children and incentivized them to choose family care rather than to live in nursing homes.
Table 6
Reasons for patients not choosing to live in nursing facilities.
| Item | N | % |
| λ Subjective factors | | |
| Disagreement of the patient's family members. | 614 | 36.7 |
| Disagreement of the patient him/herself. | 558 | 33.3 |
| λ Objective factors | | |
| No local nursing facilities. | 108 | 6.4 |
| Too long of the queuing time. | 137 | 8.2 |
| Insufficient service level of nursing facilities. | 578 | 34.5 |
| Too much expense of the nursing facilities. | 584 | 34.9 |
| Unable to move in due to physical condition (illness, disability, etc.). | 199 | 11.9 |
| λ Once lived, and the patient/family felt not suitable to live in the nursing facility. | 74 | 4.4 |
AD patients often need long-term care as many patients cannot take care of themselves in the later stage of the disease. Therefore, caregivers have to bear a great burden. On the economic front, AD also brings a huge burden to both the patients’ families and society [14]. According to International multilateral cost-of-illness (COI) studies, the socioeconomic cost of AD includes direct medical, direct non-medical and indirect costs [15]. A study in 2015 showed that the annual cost of an AD patient in the US was $19,144.36 [16]. The burden of AD on families is not just financial, but also affects other aspects of life that cannot be neglected. For example, the symptoms of dementia often cause physical, emotional, and mental stress [17]. Many studies have explored the influence factors of caregiver burden, indicating that the burden on caregivers is higher in families with lower income and disease severity [18, 19]. At the same time, the burden of patients increases with time [20]. After taking care of patients, the health of caregivers can be affected, increasing anxiety and depression, and decreasing satisfaction with life [21]. Most families experience mental tension due to this disease and create a negative flow of energy between caregivers and patients [22]. However, there are few large-scale studies on caregiver burden of Chinese AD patients, and most studies have focused on patients receiving family care [23–25]. Hence, there is a lack of research on the impact of care style on family care burden.
According to this study, the self-care ability and care status of AD patients has a significant impact on the burden of caregivers. The families who choose a nursing home for their elderly who lost self-care abilities suffered a higher burden in general. The reasons for this phenomenon, however, are diverse and caregivers are often more concerned about whether the nursing facilities are careful with older patients. Underdeveloped social nursing facilities in China also bring many concerns to caregivers of AD patients, the care of who is different from ordinary older adults. Questions therefore remain as to how patients can receive personalized care, if they fall sick again because of improper care and if they feel lonely or sad. On the other hand, the improper pension security system also results in a higher cost of living in a nursing home for the patients’ families. Other aspects also affect these results and most families willing to send their elderly to nursing homes have a higher awareness of diseases and try their best to treat and change the patient's condition. Comparatively, some families care less about the symptoms of patients and spend less time and energy on the treatment and care of patients [26], which gives them a lower burden.
Currently, China’s social welfare and pension security system can partly satisfy social needs, but it still needs to improve in some aspects. There is still a lack of nursing assistance and policy help for patients with AD [27]. For patients with AD, there are restricted alternatives and only a few ensured ways to live their lives when considering economic limitations. According to a study in 2015, most patients have two children or more (80.56%), while 19.44% of participants have only one child or no child [16]. The one-child situation is going to be more distinct in the coming decades as families with one child may face serious problems in caring for AD patients. Therefore, the social support system needs to be corrected and long-term strategies and effective measures should be made and implemented by the government.
Our study has some limitations that should be noted. First, the sample size of this work is small and did not fully represent the AD patient population in China. Second, the questionnaire used here was only available to patients who were diagnosed as probable AD dementia and most of them need an electronic platform to complete the questionnaire. Therefore, the study mainly included patients from urban and suburban areas, leading to a demographic bias. Therefore, the results obtained may not represent all AD patients in China. Third, the severity of AD could not be quantified with our study design and functional health outcomes could not be measured. We did not focus much on the economic burden and mental stress of the patients’ family, which further affects the analysis and conclusions. All these problems warrant further investigation in a larger and more widespread patient cohort. Although the investigation described in this work is imperfect, we can gain a basic understanding of the caregiving status and burden on Chinese families of AD patients.