Factors associated with caregiving status and caregiver burden for patients with Alzheimer's disease in China


 Background

The prevalence of Alzheimer's disease (AD) is rapidly in China, which puts a great deal of pressure on the patient’s family and society. The way of patient care deserves social attention. This study focused on the caregiving status and the relationship between caregivers’ burden and patient factors based on the Chinese pension system.
Methods

 This is a large-scale, multicenter cross-sectional study aimed to investigate the two types of caregiving (family care and nursing care), and the caregiver burden of patients with AD. A total of 1675 patients with a definite diagnosis of probable AD from 30 provincial, municipal, and autonomous regions of mainland China were enrolled from August 2019 to December 2019. Caregivers of AD patients completed the questionnaire under the guidance of trained investigators. The characteristics of patients and caregivers were summarized by descriptive statistics.
Results

Among the 1675 AD patients, 1522 (90.87%) patients adopted family care. There was a significant correlation between the housing condition, annual income, self-care ability, and the choice of caregiving (P < 0.05). According to the caregiver burden inventory score, 28.90% of the caregivers had a low burden, 57.01% had a medium burden and 14.09% had a heavy burden, concerning the patient's age, caring style, self-care ability, etc. The burden of the caregivers in the nursing facilities is relatively high than that of family care (P < 0.05).
Conclusion

Family care is the main way of care for AD patients in China. Caregiving status is affected by living place, patient income and severity of the disease. The burden of family caregivers of AD is generally high, especially patients with disabilities.

After the questionnaire was designed, the diagnostic doctors were given a comprehensive training about lling in the questionnaire. Caregivers of the patients completed the questionnaire under the guidance of doctors.

Measures and data collection
We designed a comprehensive questionnaire, which includes essential information, regional distribution, demographic characteristics, household income, diagnostic and treatment history, care situation, and burden of participants. The caregiving status of the patients was divided into two categories, including family care and nursing care. Family care was de ned as situations in which family members, including spouses, children, grandchildren, and other relatives, take care of AD patients with or without the help of a nurse. Nursing care indicates that the patients are taken care of by nurses in nursing facilities. Similarly, self-care ability was divided into two classes: basic self-care and partially or wholly dependent. The type of caregiving was assessed by caregivers based on whether the patients could take care of themselves in their daily lives.
The caregiver burden inventory (CBI) (Chinese version) was used to describe the multidimensional burden of the caregivers and to distinguish related factors of different burden dimensions [10]. The scale was translated into Chinese by Yue et al and passed the reliability and validity test. The inventory consists of 24 questions that refer to ve dimensions: time-dependence burden (questions 1-5), developmental burden (questions 6-10), physical burden (questions 11- 14), social burden (questions 15-18), and emotional burden (questions [19][20][21][22][23][24]. Each item was graded on a 4-point Likert scale according to the degree of each situation. A high score represented a high burden and the total score is 96. After calculating the total score and each dimensional score, we divided the caregivers into three categories according to the burden score. The point range from 0-32 was considered as a low burden, from 33-64 as a medium burden, and from 65-96 as a high burden.
A total of 1694 people participated in the survey. After eliminating the erroneous and invalid questionnaires, 1675 valid questionnaires were left, resulting in an effectiveness of 98.88%.

Statistical analyses
We used descriptive statistics to represent patient and caregiver characteristics, gender, age, housing condition, level of education, and annual income. Quantitative variables were described as the mean ± standard deviation. For the analysis of different types of caregivers and caregiver burden, we used an independent-samples t-test and one-way ANOVA to compare the characteristics of patients and caregivers. The same tests were used to nd factors of caregiver burden level related to different patient characteristics. We considered other factors (P 0.2) in the logistic regression analysis with 95% con dence intervals (CI) to determine the possible in uence of other factors in the choice of caregiving of AD patients. All data analyses were performed using SPSS 26.0 (SPSS Inc., Chicago, IL, USA). Differences were considered statistically signi cant when the P-value was less than 0.05.

Patient Characteristics
The patients characteristics are presented in Table 1. This study included 1675 AD patients from 30 provincial, municipal, and autonomous regions of mainland China, including 650 (38.81%) men and 1025 (61.19%) women. Most of the patients were above 60 years of age with features of AD. The participation of patients in urban areas was higher than that in rural areas (79.76% vs. 20.24%). The geographical distribution of the patients is shown in   Table 2). We found no statistically signi cant difference between family care and nursing care based on the gender or education level of patients. Living in a nursing facility is common among patients who are above 80 years (P = 0.003) and who are living in urban areas (P 0.001). Concerning economic status, the choice of patient care is related to the annual income of the patient (P 0.001). A greater proportion of patients living in nursing homes belong to a higher income group; however, no signi cant difference was found between annual household income groups (P = 0.122). According to self-care ability and CBI score, patients who are less capable of taking care of themselves and who impose a large burden to family caregivers choose nursing facilities (P = 0.001).   (Table 4). According to the results of the correlation analysis, the self-care ability of patients reduced the burden of caregivers. All aspects of caregiver burden signi cantly increased when patients were not able to take care of themselves (P 0.001). Caregiving status was also associated with burden grade. Caregivers at nursing facilities had a higher total burden of care compared to the caregivers at home (P 0.001). In the ve burden aspects mentioned above, there was no difference between family care and nursing care on the emotional side of caregivers (P = 0.510). In addition, in other aspects such as time-dependence, development limitation, health, and social contact, families bear a higher burden when the patients are sent to a nursing home than those who got care at home. The burden of caregivers was affected by both the self-care ability and caregiving status of the patients at the same time. To exclude confounding factors, we used strati ed correlation analysis to determine the impact of self-care ability and caregiving status on the burden of caregivers (Table 5). There was no signi cant caregiver burden, either family care or nursing facility (P = 0.520), if the patients could take care of themselves. However, if the patients were unable to care for themselves, the overall burden was higher for partially or wholly dependent AD patients (P = 0.015), and the differences mainly manifested in the burden of time-dependence (P = 0.002) and the health of caregivers (P = 0.008). 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 lial piety. In traditional Chinese culture, when parents fall ill, children should care for their parents; those who do not may face various social di culties 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. 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 costof-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 nancial, 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 in uence 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 ow 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][24][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 signi cant 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.