Factors associated with the grief among family caregivers of patients with dementia in China

DOI: https://doi.org/10.21203/rs.3.rs-2099255/v1

Abstract

The current study aimed to investigate the influencing factors of grief in family caregivers of patients with dementia in China. In this cross-sectional study, 202 patients with dementia and their family caregivers were surveyed with demographic questionnaire, Caregiver Burden Inventory, Neuropsychiatric Inventory Questionnaire, and Marwit-Meuser Caregiver Grief Inventory Short Form. Through multivariate linear regression analysis, we identified the influencing factors of grief. Our results showed that the scores of caregiver grief were 59.46(SD=21.10); most family caregivers experienced grief; gender of caregivers, co-residency with the patient, behavioral and psychological symptoms of dementia and caregiver burden were the main factors associated with caregiver grief; and male and female caregivers experienced different types of caregiver burden. Future research will target nursing interventions and community services to reduce the burden and grief of caregivers of patients with dementia.

Introduction

Dementia is one of the most common neurodegenerative diseases, and its impact on family caregivers (FCs) is a growing problem in the world. China is a country with a large population and a large number of patients with dementia (Wang et al., 2019). At present, there are more than 7 million dementia patients in China; this number is estimated to reach 22 million by 2040.

This number is equivalent to the total number of dementia patients in all developed countries; thus, China ranks first in the world (Lane et al., 2018). The symptoms of this common disease include not only progressive memory loss and damage of cognition function but also dysphoria and behavioral symptoms (delusions, hallucinations, or sleep disturbances) (Groen-van et al., 2018). In the course of the disease, most patients have problems dealing with multiple information and become dependent on their FC (Della et al., 2018). Providing care to dementia patients cause physical, emotional and financial stress because it affects FC’ emotions, lifestyle, and financial status. Some studies have focused on psychosocial problems associated with the disease. Grief is an emotional response that is prevalent among FCs (Liew, 2016). According to a number of research works, the onset of FC grief is based on many factors, such as gender, relationship status with the patients, and religiosity (Arruda & Paun, 2017). Several authors indicated that caregiver grief (CG) can be triggered by behavioral and psychological symptoms of dementia (BPSD) (Reuben et al., 2019). Observations also indicated that CG is associated with caregiver burden (Chan et al, 2020).

Simultaneously, the evidence also suggests that the risk factors affecting CG depend on sociodemographic characteristics of FC in developed countries, rather than having to play a significant role in developing countries (Liew et al., 2018), such as China. Developed countries have different societies and cultures. In China, so far, only few authors have studied the dementia CG, and most of them investigated the FC’s feelings and quality of life. Several investigations translated the Marwit Meuser Caregiver Grief Inventory Short Form (MM-CGI-SF) into Cantonese-Chinese, Mandarin-Chinese, and Singapore-Chinese. These languages shared similarities in terms of written characters, but they were different and Chinese Mainland residents might not be able to be understand them. Ye and Gao produced the Chinese version, which suited people in Chinese Mainland. However (Chan et al., 2017), Chinese version of MM-CGI-SF did not report the possible factors associated with CG among FCs. Consequently, considering the theoretical and practical impact of CG on FC, our study was conducted to explore the possible factors related to CG among FCs indicated in the Chinese version of MM-CGI-SF. We wanted to determine the possible factors of CG. By performing measurements in the sample, we determined the correlated variables, such as the caregiver's age, gender, educational level, relationship between FC and patient, employment situation, the number of caregiving hours per day, caregiver burden, and the patients’ BPSD.

We hypothesized that these possible factors would impact CG, but we believed that because of the relevant race, cultural, and socio-economic differences between China and developed countries, the roles of these factors would not be exactly the same.

In this study, the referenced theoretical model is the caregiving grief-stress model developed by Meuser et al (Meuser & Marwit, 2001). Meuser et al. introduced this model in a study of grief responses among 87 spouses and adult-child caregivers of dementia with different progressive dementia types, such as severe, moderate, and mild. Meuser et al (Meuser & Marwit, 2001). divided the model into 3 multiple dimensions: (a) background and context, (b) primary stressors and (c) outcomes associated with loss.

The first components of the model are the background and context of FC, which are defined in the model along with different risk factors, such as culture, relationship with care recipient, and stage of dementia (Meuser & Marwit, 2001). As previous studies suggested, relationship with dementia is related to significant burden (Holley & Mast, 2009). Spouses caregivers’ have the highest total scores of CG and are more likely to report feelings of anxiety and grief. Additionally, there is a positive correlation between culture and CG (Liew, 2016). The moderate and severe stage of dementia is the likely tendency to experience symptoms such as anger, yearning, and guilt than those with mild dementia (Holley & Mast, 2009). The second components are the primary stressors, which are divided into 2 different types of losses: ambiguous loss and role overload. The ambiguous loss is the intermittent and unpredictable nature of loss of FC, especially with progressive deterioration of the disease (Meichsner & Wilz, 2018). This kind of loss is used to describe the loss that FCs may experience (Meichsner et al., 2016)[14]. The second loss is role overload, which includes the loss of engagement in personally fulfilling activities, diminished freedom, loss of work, and social opportunities (Noyes et al., 2010). The third component of the model is the outcome associated with loss. It describes how the different types of losses affect the FC.

In the context of caring, culture, relationship with care recipient, stage of dementia, and other demographic variables. Primary stressors refer to relationship and caregiving losses. Outcome in a caregiving context is the grief experienced by the FC, such as loneliness, hopelessness, and agitation.

However, the theoretical framework of this study is the grief-stress model of caregiving, which is used to explain the grief. It is important to note that our study does not explore the effect of FC coping strategies and does not examine the effects of coping strategies. This study explores only a part of the grief-stress process model, namely, the risk factors associated with grief.

The study aims to do the following: (a) describe the characteristics of dementia patients and caregivers and CG level, (b) determine the relationship between the CG, caregiver burden, and patients’ BPSD and (c) identify the risk factors related to the CG among the characteristics of FCs and patients, caregiver burden, and patients’ BPSD.

Methods

The study used a cross-sectional design. The participants were from a hospital in XX, X that specialized in treating psychiatric diseases such as dementia.

Setting and Participants

Participants were dementia family members who provided main family care services. Participants were recruited from June to October 2020. The inclusion criteria were as follows: (a) FCs took care of patients for more than 6 months, (b) the FC had normal language and hearing function and was able to communicate, (c) FCs voluntarily participated in the study and signed informed consent to cooperate with the researcher. The exclusion criteria were (a) the family caregiver disagreed with the investigation, (b) professional medical staff and caregivers employed by the family, (c) the family caregiver had a mental disorder. The author of this study chose participants by these criteria. The characteristics of all participants are presented in Table 1.

Data Collection

The authors interviewed participants in an independent doctor's office. Before the survey, all participants were informed of the purpose and importance of the study and voluntarily agreed to participate.

Instruments

The study used the following instruments: (a) a demographic characteristics survey for dementia FC and patients, (b) caregiver burden inventory (CBI), (c) Neuropsychiatric Inventory-Questionnaire (NPI-Q) and (d) Marwit Meuser Caregiver Grief Inventory Short Form (MM-CGI-SF).

The demographic variables of the patients and their FCs were age and gender of FC and patients, relationship to patient, FC educational level, caregiving h/day, FC employment situation, and co-residency with patient.

The CBI was developed to assess FC self-perceived burden. It is an instrument composed of 24 items, divided into 5 subscales: time-dependence burden, developmental burden, physical burden, social burden and emotional burden (Novak & Guest, 1989). The scale uses a four-point Likert scale from strongly disagree (0 point) to strongly agree (4 points). The global scores range from 0 to 96. Higher scores indicated a greater level of burden perceived by caregivers. This instrument has been translated and validated for use in a Chinese population, with good internal consistency for each subscale (Chou et al., 2002).

The NPI-Q was developed to measure the caregiver distress in relation to BPSD and severity of BPSD (Cummings et al., 1994). It is a self-administered questionnaire that is based on informant interview. The questionnaire consists of 12 items measuring the severity of BPSD (NPI-S). It uses a 3-item scale ranging from mild (1 point) to severe (3 points). BPSD relates caregiver distress (NPI-D), which uses a 6-item scale ranging from not distressing at all (0 point) to very, severely, or extremely distressing (5 points). The Chinese version of NPI-Q validated by Ma et al. was used in this study and showed adequate reliability and validity (Ma et al., 2010).

The MM-CGI-SF was developed to assess the grief of FC when caring for patients with dementia (Marwit & Meuser, 2005). The scale consists of 18 items and 3 domains that measure the likelihood of occurrence of personal sacrifice burden, heartfelt sadness and longing, worry, and feeling of isolation. The short form scale uses a 5-point Likert-type scale and has global scores ranging from 18 to 90, thereby indicating a greater level of grief that the caregivers perceived. The instrument has been translated into Chinese (Gao et al., 2009) and validated for use in the family caregivers of people with dementia (Li et al., 2021), with good psychometric performance.

Data Analysis

The SPSS 25.0 statistical software was used to analyze the data. The demographic characteristics and study variables were described by descriptive statistics. The analysis of variance and independent samples t-test and non-parametric test were used to probe the CG differences in subgroups of caregivers’ and patients’ characteristics. The bivariate correlation analyses were used to examine the relationship between CG and BPSD and caregiver burden. The zero-order correlations were run with the MM-CGI-SF and the subscales of the CBI, which included time dependence, developmental, physical, social, and emotional burdens. To examine the relationship between CG and the caregiver burden and its subscales, these correlations were also run with the male and female FCs in these two different groups separately examined. The associated factors of CG were identified by multivariate linear regression analysis. The significant factors in the monofactor analysis were analyzed using the multiple linear regression model, and the CG was taken as the dependent variable. Significant demographic characteristics, caregiver burden, and BPSD were the independent variables for analysis. P < 0.05 indicates statistical significance, and all tests were two tailed.

Ethical Considerations

The study ethics committee of XX Hospital of X X X where the study was carried out and the ethics Committee of XX University of X X X approved this research, protocol no. Req-2019-0521. The participants were informed of the research objectives and voluntarily signed the informed consent form of the study.

Results

Demographics

Of the 210 potential participants who contacted, 8 FC refused to participate due to insufficient time. A total of 202 FCs completed all questionnaires and were included in the analysis. As shown in Table 1, the patients’ mean age was 78.8 years old (SD 9.53); the FCs consisted mostly of females (57.9%), 55.0% of which were unemployed, with a mean age of 59.9 years old (SD 13.22) and with college or above education (35.6%). The majority of FCs were spouse of patients (51.0%). The majority of FCs spend 13h or more per day (55.9%) providing care for the patients. The majority of FC live with patients (51.0%).

Table1 - The characteristics of all participants(n=202).

Characteristic

FC*

Patients

CG‡ Mean(SD)

t/F

P-value

n(%) or M(SD)

n(%) or M(SD)

Age(years)

59.9 years

(13.22)

78.8 years (9.53)

 

 

 

Age Range

32-88

54-98

 

 

 

<50years

48(23.8)

 

59.33

(22.57)

-0.048§

0.962

≥50years

154(76.2)

 

59.50

(20.70)

 

 

Gender

 

 

 

-2.882§/

0.469§

0.004/0.640

Female

117(57.9)

107(53.0)

63.04

(20.37)

 

 

Male

85(42.1)

95(47.0)

54.53

(21.21)

 

 

Relationship to patient

 

 

 

2.734§

0.007

Spouse

103(51.0)

 

55.54

(20.13)

 

 

Child

99(49.0)

 

63.54

(21.41)

 

 

Educational level

 

 

 

3.910||/

1.067||

0.022/0.346

Primary school or below

62(30.7)

118(58.4)

65.56

(20.84)

 

 

Junior high school to Senior high school

68(33.7)

49(24.3)

56.68

(18.09)

 

 

College or above

72(35.6)

35(17.3)

56.83

(23.05)

 

 

Caregiving h/day

 

 

 

3.310||

0.026

<4h

42(20.8)

 

57.81

(23.75)

 

 

4h~

27(13.4)

 

63.59

(20.08)

 

 

8h~

20(9.9)

 

48.85

(16.45)

 

 

≥16h

113(55.9)

 

60.96

(20.63)

 

 

Employed

 

 

 

0.261§

0.794

Yes

91(45.0)

 

59.89

(21.43)

 

 

No

111(55.0)

 

59.11

(20.91)

 

 

Co-residency with the patient

 

 

 

-2.456§

0.015

Yes

103(51.0)

 

62.99

(20.49)

 

 

No

99(49.0)

 

55.79

(21.20)

 

 

*FC=family caregiver; SD=Standard deviation; CG=caregiver grief; §t-test analysis; ||variance analysis

Deviations for each of the measures for sample are shown as the mean scores and standard

As shown in Table 2, the mean CG score was 59.46 (SD 21.10), and its average score rate was 66.1%. The mean personal sacrifice burden subscale score was 19.62 (SD 8.08), and its average score rate was 65.4%. The mean heartfelt sadness and longing subscale score was 20.40 (SD 7.31), and its average score rate was 68.0%. The mean worry and felt isolation subscale score was 19.44 (SD 7.09), and its average score rate was 64.8%. 

For male FCs, the mean CG score was 54.53 (SD 21.21), the mean personal sacrifice burden subscale score was 17.88 (SD 8.06), the mean heartfelt sadness and longing subscale score was 19.00 (SD 7.73), the mean worry and feeling of isolation subscale score was 17.65 (SD 6.90), and the caregiver burden score was 45.33 (SD 16.20). For female FCs, the mean CG score was 63.04 (SD 20.37), the mean personal sacrifice burden subscale score was 20.89 (SD 7.90), the mean heartfelt sadness and longing subscale score was 21.41 (SD 6.85), the mean worry and feeling of isolation subscale score was 20.74 (SD 6.96), and the caregiver burden score was 46.40 (SD 16.76). Comparing the CG between male and female FCs, the total and subscale scores of female FCs were higher than those of male FCs.

Table 2 - Descriptive Statistics for Key Study Variables : Mean (Standard Deviation). 

Variables

Full sample

(n=202)

Male FC

(n=85) or Male patient (n=95)

Female FC

(n=117) or Female patient (n=107)

CG* Total Score

59.46(21.10)

54.53(21.21)§

63.04(20.37)§

CG Subscale

 

 

 

Personal Sacrifice Burden

19.62(8.08)

17.88(8.06)§

20.89(7.90)§

Heartfelt Sadness and Longing

20.40(7.31)

19.00(7.73)§

21.41(6.85)§

Worry and Felt Isolation

19.44(7.09)

17.65(6.90)§

20.74(6.96)§

Caregiver Burden

45.95(16.50)

45.33(16.20)§

46.40(16.76)§

BPSD

12.63     (7.16)

13.14 (6.85)||

12.18 (7.42)||

*CG=caregiver grief; BPSD=behavioral and psychological symptoms of dementia; FC=family caregiver; §family caregiver; ||patient     

Relationship between CG and Characteristics of Caring

It was predicted that age and gender of FCs and patients, relationship to patient, FC educational level, caregiving h/day, FC employment situation, and co-residency with patient would be significantly related to the severity of CG experienced. The hypothesis was tested by monofactor analysis, as shown in Table 1. The results indicated that gender of FCs (t=-2.882, P=0.004), relationship to patient(t=2.734, P=0.007), FC educational level (F=3.910, P=0.022), caregiving h/day (F=3.310, P=0.026), and co-residency with patient (t=-2.456, P=0.015) were strongly and significantly related to CG scores (MM-CGI-SF). As shown in Table 3, the multiple aspects of caregiver burden and BPSD are correlated with three aspects of CG, suggesting that caregiver burden and BPSD are  significant correlates of CG. 

Table 3 - Correlation analysis of CG, caregiver burden and BPSD(n=202). 

Variables

1

2

3

4

5

6

7

8

9

10

11

1.CG

-

0.948

0.926

0.940

0.410

0.256

0.239*

0.329

0.146*

0.324

0.334

2.Personal Sacrifice Burden

 

-

0.807

0.850

0.429

0.245

0.243

0.374

0.152*

0.345

0.352

3.Heartfelt Sadness and Longing

 

 

-

0.805

0.350

0.222*

0.222*

0.279

0.156*

0.228*

0.265

4.Worry and Felt Isolation

 

 

 

-

0.370

0.253

0.206*

0.265

0.101

0.335

0.318

5.Caregiver burden

 

 

 

 

-

0.635

0.579

0.551

0.596

0.724

0.412

6.Physical Burden

 

 

 

 

 

-

0.370

0.171*

0.154*

0.268

0.280

7.Emotional Burden

 

 

 

 

 

 

-

0.135

0.020

0.314

0.204*

8.Time dependence Burden

 

 

 

 

 

 

 

-

0.250

0.283

0.257

9.Developmental Burden

 

 

 

 

 

 

 

 

-

0.317

0.236*

10.Social Burden

 

 

 

 

 

 

 

 

 

-

0.299

*P<0.05, P<0.001; CG=caregiver grief; §BPSD=behavioral and psychological symptoms of dementia

Factors between CG and Caregiver Burden Scale in the linear Regression Analysis

As shown in Table 4, as to CG scores of male FC, significant differences in the physical burden(β=0.404,P<0.001), emotional burden(β=0.336,P=0.001), and time dependence burden(β=0.212,P=0.023). Moreover, for CG scores of female FC, significant differences in the time dependence burden(β=0.321,P=0.001) and social burden(β=0.352,P<0.001).

Table 4 - Factors between CG and Caregiver burden Scale in the linear Regression Analysis. 

CBIsubscalesa

Male FC† (n=85)

Female FC(n=117)

B

SE

β

t

P-value

B

SE

β

t

P-value

Physical Burden

1.589

0.391

0.404

4.063

<0.001

0.068

0.346

0.018

0.197

0.844

Emotional Burden

1.235

0.369

0.336

3.349

0.001

0.006

0.426

0.001

0.015

0.988

Time dependence Burden

1.143

0.494

0.212

2.316

0.023

1.422

0.406

0.321

3.500

0.001

Developmental

Burden

-0.378

0.387

-0.093

-0.976

0.332

-0.439

0.306

-0.129

-1.436

0.154

Social Burden

-0.654

0.411

-0.160

-1.591

0.116

1.179

0.317

0.352

3.718

<0.001

male adjusted R2=0.343; female adjusted R2=0.239; *CBI=Caregiver Burden Inventory; FC=family caregiver

Factors related to CG

As shown in Table 1, there were significant relationships between the CG and caregiver characteristics including gender of FCs , relationship to patient, FC educational level, caregiving h/day and co-residency with patient as evidenced by monofactor analysis. Regression models indicated that the gender of caregivers(β=0.158,P=0.010), co-residency with the patient(β=0.126,P=0.044), caregiver burden (β=0.314,P<0.001), and BPSD (β=0.179,P=0.009)were significantly related to the CG, as evidenced by the multivariate analysis (Table 5). 

Table 5 - Factors related to CG (MM-CGI-SF) in the multivariate analysis (n=202). 

Variables

B

SE

β

t

P-value

Gender

 

 

 

 

 

Male*

 

 

 

 

 

Female

6.750

2.602

0.158

2.594

0.010

Relationship to patient

 

 

 

 

 

Child*

 

 

 

 

 

Spouse

-4.545

2.741

-0.108

-1.658

0.099

FC educational level

 

 

 

 

 

College or above*

 

 

 

 

 

Junior high school to Senior high school

-1.772

3.116

-0.040

-0.569

0.570

Primary school or below

4.586

3.274

0.101

1.401

0.163

Caregiving h/day

 

 

 

 

 

≤4h*

 

 

 

 

 

5h-8h

7.017

4.447

0.113

1.578

0.116

9h-12h

-6.279

4.904

-0.089

-1.280

0.202

≥13h

6.215

3.378

0.147

1.840

0.067

Co-residency with the patient

 

 

 

 

 

No*

 

 

 

 

 

Yes

5.303

2.613

0.126

2.029

0.044

Caregiver burden

0.402

0.086

0.314

4.654

<0.001

BPSD

0.528

0.199

0.179

2.655

0.009

adjusted R2=0.285; *Reference group; BPSD=behavioral and psychological symptoms of dementia

Discussion

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.

Conclusions

This study revealed that most of the FCs experienced grief. The MM-CGI total and subscale scores of China were higher than those in Singapore. Gender of FC, co-residency with the patient, caregiver burden and BPSD were significantly related to the CG, as evidenced by the multivariate analysis. In addition, CG scores of male FCs were significantly different in terms of physical, emotional, and time dependence burdens. CG scores of female FCs were significantly different in terms of the time dependence and social burdens. Further study, especially a longitudinal study, is needed to determine the possible factors that cause CG in China; this will also provide important evidence for the development of dementia care service in other countries with similar cultural and social backgrounds.

Declarations

Acknowledgments

The researchers would like to thank all participants in this study.

Authors contributions

All authors conceptualized and designed the study. SQ secured the grant to conduct the study. WJ, LY and XY   organized data collection. WJ, SQ and CY contributed to the analysis and writing of the manuscript. WJ,LY and SQ wrote the manuscript and all authors read and approved the manuscript.

Data availability statement 

The raw data supporting the conclusions of  this article will be made available by the authors, without undue reservation.

Funding

This study was supported by the Provincial Medical and Health Science and Technology Plan Project in 2019(2019KY112).The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Availability of data and materials

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Competing interests 

The authors declare that there is no confict of interest concerning the present study among the authors themselves or with other people or organizations.

Ethics approval and consent to participate

The study was performed in accordance with the Declaration of Helsinki and approved by the ethics committee of the Zhejiang Chinese Medical University.All the participants provided informed consent.The researcher introduced herself to the participants and explained the study objectives, obtained written consent from them, and assured them of the confidentiality of data.

Consent for publication

Not applicable.

References

  1. Wang H, Xie H, Qu Q, Chen W, Sun Y, Zhang N, Liu Y, Li T, Chan KY, Gauthier S, Yu X. & Global Dementia Prevention Program (GloDePP). (2019). The continuum of care for dementia: needs, resources and practice in China. J Glob Health, 9(2):020321. 10.7189/jogh.09.020321 PMID: 31893030.
  2. Lane CA, Hardy J, Schott JM. (2018). Alzheimer's disease. Eur J Neurol, 25(1):59–70. 10.1111/ene.13439 PMID: 28872215.
  3. Groen-van de Ven L, Smits C, Span M, Jukema J, Coppoolse K, de Lange J, Eefsting J, Vernooij-Dassen M. The challenges of shared decision making in dementia care networks. Int Psychogeriatr. 2018;30(6):843–57. 10.1017/S1041610216001381 PMID: 27609338.
  4. Della Sala S, Kozlova I, Stamate A, Parra MA. (2018). A transcultural cognitive marker of Alzheimer's Disease. Int J Geriatr Psychiatry, 33(6):849–856. 10.1002/gps.4610. PMID: 27805729.
  5. Liew TM. (2016). Applicability of the pre-death grief concept to dementia family caregivers in Asia. Int J Geriatr Psychiatry, 31(7):749–754. 10.1002/gps.4387 PMID: 26555857.
  6. Arruda EH, Paun O. Dementia Caregiver Grief and Bereavement: An Integrative Review. West J Nurs Re. 2017;39(6):825–51. 10.1177/0193945916658881 PMID: 27411975.
  7. Reuben DB, Tan ZS, Romero T, Wenger NS, Keeler E, Jennings LA. (2019) Patient and Caregiver Benefit From a Comprehensive Dementia Care Program: 1-Year Results From the UCLA Alzheimer's and Dementia Care Program. J Am Geriatr Soc, 67(11):2267–2273. 10.1111/jgs.16085 PMID: 31355423.
  8. Chan I, Yap P, Wee SL, Liew TM. (2020). The three dimensions of caregiver grief in dementia caregiving: Validity and utility of the subscales of the Marwit-Meuser Caregiver Grief Inventory. Int J Geriatr Psychiatry, 35(2):213–222. 10.1002/gps.5238 PMID: 31736107.
  9. Liew TM, Yap P, Luo N, Hia SB, Koh GC, Tai BC. (2018). Detecting pre-death grief in family caregivers of persons with dementia: measurement equivalence of the Mandarin-Chinese version of Marwit-Meuser caregiver grief inventory. BMC Geriatr, 18(1):114. 10.1186/s12877-018-0804-5 PMID: 29751741.
  10. Chan WCH, Wong B, Kwok T, Ho F. (2017). Assessing Grief of Family Caregivers of People with Dementia: Validation of the Chinese Version of the Marwit-Meuser Caregiver Grief Inventory. Health Soc Work, 42(3):151–158. 10.1093/hsw/hlx022 PMID: 28575234.
  11. Meuser TM, Marwit SJ. (2001). A comprehensive, stage-sensitive model of grief in dementia caregiving. Gerontologist, 41(5):658–670. 10.1093/geront/41.5.658 PMID: 11574711.
  12. Holley CK, Mast BT. (2009). The impact of anticipatory grief on caregiver burden in dementia caregivers. Gerontologist, 49(3):388–396. 10.1093/geront/gnp061 PMID: 19386826.
  13. Meichsner F, Wilz G. Dementia caregivers' coping with pre-death grief: effects of a CBT-based intervention. Aging Ment Health. 2018;22(2):218–25. 10.1080/13607863.2016.1247428 PMID: 27792398.
  14. Meichsner F, Schinköthe D, Wilz G. Managing Loss and Change: Grief Interventions for Dementia Caregivers in a CBT-Based Trial. Am J Alzheimers Dis Other Demen. 2016;31(3):231–40. 10.1177/1533317515602085 PMID: 26311735.
  15. Noyes BB, Hill RD, Hicken BL, Luptak M, Rupper R, Dailey NK, Bair BD. The role of grief in dementia caregiving. Am J Alzheimers Dis Other Demen. 2010;25(1):9–17. 10.1177/1533317509333902 PMID: 19386994.
  16. Novak M, Guest C. (1989). Application of a multidimensional caregiver burden inventory. Gerontologist, 29(6):798–803. 10.1093/geront/29.6.798 PMID: 2516000.
  17. Chou KR, Jiann-Chyun L, Chu H. (2002). The reliability and validity of the Chinese version of the caregiver burden inventory. Nurs Res, 51(5):324–331. 10.1097/00006199-200209000-00009 PMID: 12352781.
  18. Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. (1994). The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology, 44(12):2308–2314. 10.1212/wnl.44.12.2308 PMID: 7991117.
  19. Ma WX, Wang HL, Jeffrey L.Cumming S., & Yu X. (2010). Reliability and validity of Chinese version or Neuropsychiatric Inventory-Ouestionnaire in patients with Alzheimer’s disease. Chinese Mental Health Journal, 2010,24(5):338–342,361. DOI:10.3969/j.issn.1000-6729.2010.05.006.
  20. Marwit SJ, Meuser TM. Development of a short form inventory to assess grief in caregivers of dementia patients. Death Stud. 2005;29(3):191–205. 10.1080/07481180590916335 PMID: 15816111.
  21. Gao YL, Ye YP, Chen PY. Translation and Revision of the Marwit-Meuser Caregiver Grief Inventory Short Form. Chin J Gerontol. 2009;29(10):1300–1. 10.3969/j.issn.1005-9202.2009.10.053.
  22. Li J, Li Y, Li P. Perceived Grief Among Caregivers of Patients With Dementia in China. Clin Nurs Res. 2021;30(1):70–81. 10.1177/1054773819839265 PMID: 30939924.
  23. Liew TM, Yeap BI, Koh GC, Gandhi M, Tan KS, Luo N, Yap P. (2018). Detecting Predeath Grief in Family Caregivers of Persons With Dementia: Validity and Utility of the Marwit-Meuser Caregiver Grief Inventory in a Multiethnic Asian Population. Gerontologist, 58(2):e150-e159. 10.1093/geront/gnx097 PMID: 28633382.
  24. Bekhet AK, Avery JS. (2018). Resilience from the Perspectives of Caregivers of Persons with Dementia. Arch Psychiatr Nurs, 32(1):19–23. 10.1016/j.apnu.2017.09.008 PMID: 29413066.
  25. Passoni S, Toraldo A, Villa B, Bottini G. Prolonged grief in caregivers of community-dwelling dementia patients. Am J Alzheimers Dis Other Demen. 2015;30(2):192–200. 10.1177/1533317514542643 PMID: 25013118.
  26. Liu S, Li C, Shi Z, Wang X, Zhou Y, Liu S, Liu J, Yu T, Ji Y. (2017). Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer's disease caregivers in China. J Clin Nurs, 26(9–10):1291–1300. 10.1111/jocn.13601 PMID: 27681477.
  27. Ford JL, Linde BD, Gigliotti C, Kim KY. Grief experiences of 3 caregiving wives of veterans with dementia. Am J Hosp Palliat Care. 2013;30(2):137–45. 10.1177/1049909112446847 PMID: 22611236.
  28. Delfino LL, Komatsu RS, Komatsu C, Neri AL, Cachioni M. (2018). Path analysis of caregiver characteristics and neuropsychiatric symptoms in Alzheimer's disease patients. Geriatr Gerontol Int, 18(8):1177–1182. 10.1111/ggi.13437 PMID: 29785782.
  29. Viñas-Diez V, Turró-Garriga O, Portellano-Ortiz C, Gascón-Bayarri J, Reñé-Ramírez R, Garre-Olmo J, Conde-Sala JL. (2017). Kinship and cohabitation in relation to caregiver burden in the context of Alzheimer's disease: a 24-month longitudinal study. Int J Geriatr Psychiatry, 32(12):e72-e82. 10.1002/gps.4656 PMID: 28111798.
  30. Warchol-Biedermann K, Mojs E, Gregersen R, Maibom K, Millán-Calenti JC, Maseda A. (2014). What causes grief in dementia caregivers? Arch Gerontol Geriatr, 59(2):462–467. 10.1016/j.archger.2014.05.013 PMID: 25042576.
  31. Jia L, Quan M, Fu Y, Zhao T, Li Y, Wei C, Tang Y, Qin Q, Wang F, Qiao Y, Shi S, Wang YJ, Du Y, Zhang J, Zhang J, Luo B, Qu Q, Zhou C, Gauthier S, Jia J. & Group for the Project of Dementia Situation in China. (2020). Dementia in China: epidemiology, clinical management, and research advances. Lancet Neurol, 19(1):81–92. 10.1016/S1474-4422(19)30290-X PMID: 31494009.
  32. Zheng YB, Shi L, Gong YM, Wang XX, Lu QD, Que JY, Khan MZ, Bao YP, Lu L. (2020). Public awareness and knowledge of factors associated with dementia in China. BMC Public Health, 20(1):1567. 10.1186/s12889-020-09665-7 PMID: 33069235.
  33. Wang J, Xiao LD, He GP, De Bellis A. (2014). Family caregiver challenges in dementia care in a country with undeveloped dementia services. J Adv Nurs, 70(6):1369–1380. 10.1111/jan.12299 PMID: 24192338.
  34. Shuter P, Beattie E, Edwards H. An Exploratory Study of Grief and Health-Related Quality of Life for Caregivers of People With Dementia. Am J Alzheimers Dis Other Demen. 2014;29(4):379–85. 10.1177/1533317513517034 PMID: 24381138.
  35. Thyrian JR, Eichler T, Hertel J, Wucherer D, Dreier A, Michalowsky B, Killimann I, Teipel S, Hoffmann W. (2015). Burden of Behavioral and Psychiatric Symptoms in People Screened Positive for Dementia in Primary Care: Results of the DelpHi-Study. J Alzheimers Dis, 46(2):451–459. 10.3233/JAD-143114 PMID: 25765916.
  36. Hu X, Dolansky MA, Hu X, Zhang F, Qu M. (2016). Factors associated with the caregiver burden among family caregivers of patients with heart failure in southwest China. Nurs Health Sci, 18(1):105–112. 10.1111/nhs.12253 PMID: 26799626.
  37. Feast A, Orrell M, Russell I, Charlesworth G, Moniz-Cook E. (2017). The contribution of caregiver psychosocial factors to distress associated with behavioural and psychological symptoms in dementia. Int J Geriatr Psychiatry, 32(1):76–85. 10.1002/gps.4447 PMID: 26891463.
  38. Akpınar B, Küçükgüçlü O, Yener G(2011). Effects of gender on burden among caregivers of Alzheimer's patients. J Nurs Scholarsh, 43(3):248–254. 10.1111/j.1547-5069.2011.01402.x PMID: 21884370.