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. 2024 Dec 2;12:715. doi: 10.1186/s40359-024-02231-5

Characteristics of relatives with high expressed emotion and related factors: a study of relatives of people with dementia in China

Yanjie Zhao 1,2, Lirong Lei 3, Shuyan Fang 1, Shengze Zhi 1, DongPo Song 1, Shizheng Gao 1, Yifan Wu 1, Qiqing Zhong 1, Yuan Zhang 1, Haitao Song 1, Jiao Sun 1,✉
PMCID: PMC11613636  PMID: 39623497

Abstract

Background

China has the highest number of people with dementia globally, and the responsibility of caring for people with dementia primarily falls on relatives, who bear heavy caregiving burdens and pressure. Providing care for an individual with dementia is emotionally and physically demanding, particularly due to the frequent manifestation of behavioral and psychological symptoms associated with dementia (BPSD). This underscores the crucial need to comprehend and address caregivers’ emotional expression (EE).

Aim

To explore the characteristics of relatives with high expressed emotion of people with dementia and related factors in mainland China.

Methods

A survey using cross-sectional questionnaires conducted with 165 relatives of individuals with dementia in China.

Results

A significant number of relatives had high EE (n = 61, 39%). The variation in EE, about 37.8%, is explained by seven independent variables. The proportion of psychological distress among relatives in EE variation is 14.5%. (b = 0.387, p < 0.001). Length of care-taking, active coping, and chronic diseases accounted for 6.5% (b = 0.264, p < 0.001), 5.1% (b=-0.239, p = 0.001) and 4.1% (b = 0.211, p = 0.002) of the variance in EE, respectively.

Conclusions

Chinese health care providers can identify high-risk groups for assistance based on the severity of dementia, age, health status and duration of care. Enhancing coping styles and alleviating emotional distress among relatives could be advantageous in decreasing EE.

Clinical evidence

Understanding the risk factors for high EE in different cultures can help guide practice on a global scale to improve the quality of life of people with dementia.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40359-024-02231-5.

Keywords: Expressed emotion, Dementia, Relative, Coping styles, Psychological distress

Introduction

In a global context, China has the largest number of elderly people with dementia [1]; A study in The Lancet Public Health reports a dementia prevalence of approximately 6.0% among people aged 60 and older in China [2], with an estimated 16.99 million current cases of Alzheimer’s and other dementias, a number that continues to rise [3]. Similar to China, dementia is also showing a significant growth trend in other countries. For example, in the United States, cases exceed 5 million and are projected to rise further [4, 5]. In Japan, cases are expected to reach 7 million by 2025 [6, 7]. Similarly, European countries face a growing dementia incidence and rising care burdens due to aging populations [8]. As dementia progresses, approximately 90% of patients will have behavioral and psychological symptoms of dementia (BPSD) [9], which may also be accompanied by cardiovascular disease and other adverse consequences.Further exacerbating the burden of care on families and society [10]. These data suggest that dementia poses similar public health challenges globally and that countries are facing similar pressures for effective responses and intervention strategies.

In China, the growth in the number of people with dementia and the burden of care are mainly influenced by demographics, level of economic development, social support system and distribution of medical resources [1]. In urban areas, the number of people with dementia is growing significantly and the burden of care is heavier due to higher levels of aging and scarce family care resources. In contrast, rural areas, although the traditional extended family structure provides some mutual support, lagging economic development and lack of medical resources limit the quality and efficiency of care [1]. Urban areas with better social welfare and healthcare systems can provide more care support, while the lack of adequate aged care facilities in the Northwest and rural areas leads to a heavier burden on family carers [1]. Differences in economic conditions also lead to differences in care choices and affordability, with developed regions being able to afford more care, while less developed regions lack financial support [1]. Thus, in China, although there are regional differences in the influencing factors affecting the growth in the number of people with dementia and the burden of care, this growth and burden are universal across different regions, creating a heavy financial, emotional and social burden on Chinese families, and seriously affecting the quality of family life and social stability.

Relatives play a crucial role in providing home care for people with dementia, leading to a notable burden on family caregivers [11].Caregivers looking after loved ones with dementia at home often depict the experience as a combination of “enduring stress and frustration” [12]. Due to the lasting emotional and physical strain of caregiving for relatives, the stress experienced by caregivers of people with dementia is an underestimated and often overlooked health hazard. The strain experienced can lead to negative consequences for both caregivers and patients, affecting aspects like expressed emotion (EE) [13]. EE encompasses the fundamental elements of emotional responses and attitudes of caregivers towards individuals with dysfunctions or disabilities that they assist. EE represents the quantity of crucial remarks, antagonism, and excessive emotional engagement exhibited by relatives towards a patient [14, 15]. High EE levels may be associated with negative behaviors and decreased functioning in people with dementia [16]. The high levels of EE are associated with verbal abuse, physical abuse, and neglect [13]. In a study in Hong Kong, EE was found to influence the negative effects of BPSD on dementia caregivers [17].

Research on EE in individuals with dementia has been carried out in numerous countries and regions. EE in family caregivers of people with dementia has been associated with caregiver burden, dementia-related symptoms and depressive symptoms in family caregivers [18]. Relatives may repeatedly experience agitation and violence from people with dementia. These behaviors are widely observed in high-EE populations and may further exacerbate these challenges. In some countries, the relative may be labeled as high EE, complicating an otherwise difficult situation. Hence, practitioners must enhance their comprehension of the traits exhibited by high-EE relatives. Studies of the characteristics of relatives with high EE in other cultures have included variables such as sex, educational experience, age, and family income and yielded conflicting results [13]. A study conducted in Scotland revealed that females exhibited more criticism than males [19], In contrast, two additional studies discovered no correlation between the sex of relatives and EE [18, 20]. Wagner et al. (1997) observed no link between the level of EE in relatives and their age or years of education. Similarly, Li and Lewis (2013) found EE was not significantly correlated with the age of the participants; However, they did establish links between emotional expression (EE) and educational attainment as well as household income. These results imply that demographic variables might not significantly influence EE status.Alternatively, culture-related characteristics may play an important role in EE status, however, there are no studies investigating relatives of people with dementia with high emotional expression (EE) in mainland China.

As a result of the severe shortage of nursing home of care 90.86% of people with dementia are cared for at home by relatives in China [21]. In Chinese culture, familial ties are a unique and essential bond between family members. And the relationship between filial piety and kinship is close and profound. Filial piety is a core ethical concept in traditional Chinese culture, which emphasises the obligation of children to respect, obey and support their parents and elders. Consequently, in China, family caregiving is regarded as a cultural tradition, and taking care of elderly relatives is an indispensable responsibility.China is often recognized as a highly collectivist society, where children’s responsibilities towards their parents stand as a vital component of collectivistic societal ethics [22]. However, the Chinese public holds a pessimistic view regarding individuals with dementia, with a majority of relatives feeling embarrassed about their condition [23]. This attitude is linked to ageism and fear of BPSD, which suggests that people with dementia deviate from norms. In ethnic and cultural contexts, stigmatizing attitudes are often associated with little contact experience, male sex and younger age [23]. EE is influenced by the clash of these two family cultures. In addition, relative caregivers are subject to prejudice and discrimination due to their association with people with dementia, that is, courtesy stigma. Due to the influence of social background and traditional culture, courtesy stigma is a serious issue in Asia [24]. Despite the drive of culture, relatives may be unwilling to care for people with dementia, which may lead to different attitudes toward sending elderly people to nursing homes. Therefore, we hypothesized that relatives who are unwilling to care for the elderly and support care in nursing homes would be high EE in China.

We also explored two potentially linked factors: the coping styles and psychological distress experienced by relatives of individuals with dementia. Attitudes can effectively predict individual behavioral strategies [25]. In our research, EE represents the emotional responses and attitudes of a family caregiver towards the care recipient. Coping styles are viewed as enduring behavioral tactics capable of addressing or enduring external and internal stressors [26]. Coping is a set of responses to stressful events by which an individual can modulate her or his reactions to stressors and attenuate psychological outcomes [27]. Psychological distress is a kind of psychological response that occurs after individuals recognize and evaluate the amount of time that a stimulus has acted on them [28, 29]. Emotional inclination and behavioral intentions in an individual can be accurately predicted by psychological distress [30]. The display of emotions, seeking social support, engaging in distractions, and employing active coping styles are linked to improved psychological and physical results, alongside reduced healthcare usage [31]. Therefore, we suspect that there is a correlation between the EE and coping styles and psychological stress of relatives of people with dementia. Prior research indicated that certain individuals employ active coping styles in dealing with stress, whereas others adopt a passive approach [32]. Relatives who use more coping styles, for example, problem solving, distraction and wishful thinking strategies, have been found to make more positive comments and fewer critical remarks [32]. Caregivers demonstrating ineffective coping styles tend to experience a higher prevalence of anxiety and depression symptoms [32]. Consequently, our hypothesis posits that there is a negative correlation between active coping and EE, whereas passive coping and psychological distress exhibit a positive correlation with EE (Fig. 1).

Fig. 1.

Fig. 1

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Hypothesis model

Previous studies have found that the EE of caregivers of people with dementia is related to problem solving, positive thinking and other strategies [32]. Nevertheless, the connection between adverse coping styles and EE has not been taken into account. Three studies have linked critical comments with distress and stress among relatives of people with dementia [33–35]. Yet, the relationship between EE levels and mental health remains ambiguous. Most studies have been conducted in developed countries and among Caucasian populations [13], and few have been conducted in developing countries or with other ethnic groups. Therefore, this study aims to explore the characteristics of high-EE relatives of people with dementia and related factors in mainland China. Meanwhile, the findings will enrich the existing theories on high EE in cultural and social contexts, especially applied in a collectivist cultural context such as China, and provide effective interventions or policy recommendations to help reduce carers’ stress and improve the quality of care for people with dementia.The study objectives are as follows:

  1. To describe the degree of high EE among relatives of people with dementia in mainland China;

  2. To examine the relationships between reported EE and the characteristics of relatives with people with dementia in mainland China;

  3. To examine the relationships among reported psychological distress, coping styles and EE.

Materials and methods

Design

Data was gathered through a cross-sectional questionnaire survey conducted between March and July 2023, with this study utilizing a significance level of α = 0.05 and a statistical power of 80%.

Sample

Participants with dementia and their relatives were enrolled from the memory clinic situated in Changchun, the capital city of Jilin Province. The memory clinic is the only special memory clinic for dementia in Jilin Province and receives people with dementia from all over the province. The study subjects are diagnosed people with dementia by the criteria of the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorderswho are aged 60 years or older [36]. A primary caregiver is characterized as the individual who offers the majority of unpaid care and perceives themselves in this role and the care recipient as primarily responsible for providing care to the recipient [37]. The primary relative is the person who has kinship with the patient on this basis. The inclusion criteria for relatives included the following: (1) able to understand and communicate in Mandarin; (2) aged 18 or older; and (3) lived at least six months in the same home with the person with dementia and identified as the person most often providing help in times of difficulty. In this study, 20 independent variables are to be introduced into the equation, and according to the requirement of establishing the sample content of the multiple regression equation, the sample content should be at least 5 ~ 10 times [38] the number of independent variables in the equation, so the sample content should be at least 100 ~ 200, and considering the possibility of incomplete or invalid questionnaires, the sample content is enlarged by 10 per cent. Therefore, the final sample size should be 110–220.

Data collection

In the clinic, each qualifying pair was approached by the clinic nurse to inquire if they voluntarily wished to take part in the study, and the questionnaire was issued only after the nurse obtained permission and the members of the dyad signed the informed consent form. Questionnaires were personally issued (by an investigation team composed of six people) to those who met the inclusion criteria. Respondents who consented to take part in the study were ushered into individual rooms where they completed the questionnaire with the assistance of the research team. To safeguard privacy, the participants remained unaware of each other. The anonymous questionnaire data were kept confidential. Researchers clarified the purpose and significance of the study to all participants, and distributed and collected the questionnaires personally.

Survey instruments

Within the study questionnaire, four sections were incorporated, including the Family Attitude Scale (FAS); the Simplified Coping Style Questionnaire (SCSQ); the 12-item General Health Questionnaire (GHQ-12); and a questionnaire on demographic characteristics. The scales have well-established and commonly utilized Chinese versions.

Family attitude scale

The Chinese iteration of the FAS translated by Yu et al. [39]. It was utilized to evaluate caregivers’ degree of EE towards patients. The participants completed the FAS using a 4-point (1–4) Likert scale with the levels “never”, “occasionally”, “sometimes” and “everyday”. The score ranges from 0 to 120 points, with elevated scores reflecting increased levels of expressed emotion (EE) and heightened criticism and hostility towards the patient. A score equal to or exceeding 60 is classified as high EE. This scale comprises three dimensions: hostility (7 items), criticism (14 items), and relational distance (9 items). In this study, Cronbach’s α was 0.935 for the scale and, 0.88, 0.874 and 0.817 for the criticism, hostility and relational distance dimensions, respectively, with good reliability.

Simplified coping style questionnaire

The assessment of coping styles was conducted utilizing the SCSQ, a scale created and assembled by Xie [40] to align with the traits of the Chinese demographic. It has 20 items encompassing two dimensions. The initial section comprises items 1–12, embodying characteristics of active coping. The subsequent section encompasses items 13–20, exemplifying traits of passive coping. For example, the item “find several different ways to solve the problem” is considered active coping, while the item “smoking, drinking, taking drugs and eating to relieve the worry” is considered passive coping. These items used a 4-point Likert scale, ranging from 0 (Never) to 3 (Very frequently). Active coping and passive coping are categorized based on the subsequent formula:

graphic file with name M1.gif

(Xn: individual scores; Inline graphic sample mean; SD: sample standard deviation)

“Z>0” suggests that the respondent has higher active or passive coping in the stress state. The scale has good reliability and validity. In this study, Cronbach’s α was 0.681 for the scale, 0.663 for the active coping dimension, and 0.774 for the passive coping dimension.

12-item general health questionnaire

The GHQ-12 is a commonly utilized instrument in occupational health research, proven to be a reliable gauge of non-psychotic conditions and adaptive patterns linked to distress [41]. This is the most globally utilized questionnaire for detecting psychological distress, comprising 12 questions, each offering four response choices: “never,” “rarely,” “sometimes,” and “often,“, using the 0-0-1-1 scoring method [42]. That is, responses of “never” and “rarely” receive 0 points, whereas responses of “sometimes” and “often” receive 1 point. Higher scores signify increased psychological distress and poorer mental health. Those with a total score ≥ 4 are at high risk of psychological distress, meaning that they have certain psychological problems and are prone to psychological diseases [41]. This scale has been validated and implemented across various disciplines in China, demonstrating strong sensitivity and specificity. In this study, the scale demonstrated a Cronbach’s α coefficient of 0.882.

Demographic characteristics questionnaire

Demographic characteristics, including the characteristics of the patient with dementia and their relatives, were recorded (Appendix A). We provided several options for each question so that the respondents could choose their own answers. “Dementia severity” and “self-care abilities” were determined by a professional geriatrician.

Ethical considerations

The research adhered to the Declaration of Helsinki principles. All participants consented to engage in the survey voluntarily, following the principle of autonomous participation, and the study received approval from the Jilin University Research Ethics Review Board (2022110305).The survey did not disclose any personal information.

Data analysis

Statistical analyses were performed using the Statistical Package for the Social Sciences, version 23. Descriptive statistics, encompassing percentages, medians, and quartiles, were utilized to portray the general characteristics of the sample and their levels of EE, coping styles, and psychological distress. Divide the participants into two groups based on the FAS score: respondents with scores ranging from 60 to 120 were classified as “high EE”, and the other respondents (range 0–59) were classified as “low EE”. The comparison of demographic data from two groups utilized a chi-square test. Using logistic regression analysis to discern the independent relationships between demographic factors and EE (two groups). Spearman correlation analysis was utilized to explore the relationship between continuous variables. Factors influencing EE are explored through stepwise multiple regression analysis.

Results

Respondent characteristics and EE

Within the hospital, patients and relatives who met the criteria were surveyed. 165 questionnaires were distributed, of which 156 completed in full were recognized as valid. Consequently, the effective response rate stood at 94.5%, with 9 responses considered incomplete or ineligible. The detailed attributes of patients and relatives can be found in Appendix A. Two-fifths of the relatives fared poorly in terms of EE (n = 61, 39.1%). More than half of the relatives presented high EE in terms of distancing (n = 88, 56.4%), and one-third of the relatives reported higher levels of EE in terms of hostility (n = 51, 32.7%) and criticism (n = 48, 30.8%) (Table 1).

Table 1.

EE among relatives in Mainland China (n = 156)

Low-EE Group High-EE Group
EE n (%) n (%) Median Range (q1, q3)
Criticism 108 (69.2) 48 (30.8) 1.64 1.64, 2.00
Hostility 105 (67.3) 51 (32.7) 1.71 1.43, 2.07
Distancing 68 (43.6) 88 (56.4) 2.00 1.56, 2.56
Overall EE 95 (60.9) 61 (39.1) 53.00 44.00, 64.75
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q1, 25% percentile; q3, 75% percentile

The results of logistic regression analyses showed that relatives with more than two years of nursing experience had a higher risk of EE compared to relatives with less than two years of nursing experience, who were odds 2.41 times higher to have a high EE (OR = 2.41, 95% CI = 1.14–5.08, p = 0.021). In addition, relatives who considered sending the patient to a nursing home were odds 2.81 times higher to develop high EE (OR = 2.81, 95% CI = 1.03–7.61, p = 0.043) than those who did not consider sending the patient to a nursing home (see Table 2). These results suggest that both length of care and attitudes towards nursing home care significantly influence relatives’ levels of EE.

Table 2.

Logistic regression model of relatives’ EE (high versus low)

Predictor OR(95% CI) p value
Length of caretaking 2.41 (1.14–5.08) 0.021
Idea of nursing homes 2.81 (1.03–7.61) 0.043
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OR, odds ratios; potential factors included patients’ sex, age, state of illness and self-care ability and relatives’ sex, age, relationship with the patient, work situation, place of residence, economic pressures, educational level, health condition and willingness to provide care

Relatives’ coping styles and psychological distress

For each item related to coping styles, scores of 3 and above indicated frequent responses of active or passive coping, and a score of 2 points or lower indicates little to no use of active or passive coping. Nearly all relatives (n = 151, 96.8%) reported that passive coping styles were rarely used. In addition, most relatives (n = 105, 67.3%) reported that their coping style was not positive enough. More than half of the relatives had higher levels of psychological distress (n = 90, 57.7%) (Table 3).

Table 3.

Coping styles and psychological distress among relatives in Mainland China (n = 156)

Low Group High Group
n (%) n (%) Median Range (q1,q3)
Active coping 105 (67.3) 51 (32.7) 21.00 17.00, 25.00
Passive coping 151 (96.8) 5 (3.2) 9.00 6.00, 11.00
Psychological distress 66 (42.3) 90 (57.7) 4.00 2.00, 7.75
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q1, 25% percentile; q3, 75% percentile

Correlations among reported coping styles, psychological distress and EE

When dealing with EE-related issues, a positive correlation is evident in passive coping (r = 0.286, p < 0.001), as well as a positive correlation between psychological distress and EE (r = 0.393, p < 0.001). It is worth mentioning that active coping demonstrates a negative correlation with EE (r=-0.250, p = 0.002) (Table 4).

Table 4.

Spearman Correlation Results for the overall score of both factors and EE

EE
Factor/subscale n r p
Coping styles
Active coping 156 -0.250 0.002
Passive coping 156 0.286 < 0.001
Psychological distress 156 0.393 < 0.001
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Predictors of EE

The stepwise multiple regression indicated that a model comprising seven of the independent variables explained approximately 37.8% of the variance in EE. The contribution of each predictor to EE is shown in Table 5.

Table 5.

Models of EE – stepwise multiple regression

Nonstandardized coefficients Standardized coefficients
b SE b t p value R2 Adjusted R2
Model 1
 GHQ-12 1.71 0.328 0.387 5.216 < 0.001 0.15 0.145
Model 2
 GHQ-12 1.726 0.315 0.391 5.478 < 0.001 0.22 0.21
 Length of caretaking 9.176 2.479 0.264 3.702 < 0.001
Model 3
 GHQ-12 1.572 0.308 0.356 5.103 < 0.001 2.275 0.261
 Length of caretaking 8.683 2.401 0.25 3.616 < 0.001
 Active coping -0.626 0.183 -0.239 -3.412 0.001
Model 4
 GHQ-12 1.613 0.3 0.365 5.379 < 0.001 0.32 0.302
 Length of caretaking 8.787 2.335 0.253 3.763 < 0.001
 Active coping -0.572 0.179 -0.218 -3.195 0.002
 Chronic diseases 7.473 2.388 0.211 3.13 0.002
Model 5
 GHQ-12 1.424 0.297 0.323 4.794 < 0.001 0.363 0.341
 Length of caretaking 8.085 2.278 0.233 3.549 0.001
 Active coping -0.543 0.174 -0.207 -3.116 0.002
 Chronic diseases 8.143 2.328 0.23 3.498 0.001
 Idea of nursing homes 9.81 3.081 0.214 3.184 0.002
Model 6
 GHQ-12 1.332 0.294 0.302 4.53 < 0.001 0.389 0.365
 Length of caretaking 7.276 2.26 0.21 3.22 0.002
 Active coping -0.521 0.171 -0.199 -3.043 0.003
 Chronic diseases 6.843 2.343 0.193 2.92 0.004
 Idea of nursing homes 10.677 3.045 0.233 3.506 0.001
 Relationship with the patient -4.924 1.933 -0.171 -2.547 0.012
Model 7
 GHQ-12 1.226 0.295 0.278 4.149 < 0.001 0.406 0.378
 Length of caretaking 6.717 2.252 0.194 2.983 0.003
 Active coping -0.556 0.17 -0.212 -3.268 0.001
 Chronic diseases 6.078 2.348 0.172 2.589 0.011
 Idea of nursing homes 10.82 3.013 0.236 3.591 < 0.001
 Relationship with the patient -4.872 1.913 -0.169 -2.547 0.012
 Passive coping 0.556 0.27 0.135 2.06 0.041
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Discussion

This study identifies general demographic factors and other factors related to high EE of relatives of patients with dementia in mainland China and thus provides a basis for understanding the factors related to EE in various cultures.Although this study found a significant correlation between thoughts of sending patients to nursing homes and higher levels of EE, we were unable to determine the causal direction of this relationship due to the cross-sectional design of this study. This implies that the idea of preferring to send a patient to a nursing home may be both a risk factor for high EE levels and a response to a higher burden of care. Therefore, future longitudinal studies could be conducted that would help to further clarify the causal direction of this correlation and better understand the role of cultural factors in EE. Furthermore, we discovered that coping styles and psychological distress had a certain impact on the EE of relatives.

The present study found that 39% of relatives of people with dementia exhibited high emotional expression (EE), a proportion that is within the range of previous studies (17–44%), suggesting that emotional stress is generally high among caregivers in the home environment of people with dementia [13, 41, 43]. This is consistent with the findings of Van et al. [44] and previous studies in Taiwan and Hong Kong [17, 18]. The high prevalence of EE may reflect the influence of factors such as the demographic characteristics of the study, region, and cultural background. For example, in East Asia, especially China, filial culture and collectivist concepts enhance the demands of caregiving responsibilities on relatives, resulting in higher emotional stress among caregivers when faced with long-term care. These relatives, despite harboring values rooted in filial piety, inevitably display negative emotions and impatience [17, 18]. Although high EE exists in both China and the West, however, there are significant differences between Eastern and Western cultures in their manifestations of and responses to EE. Compared to East Asian cultures, Western cultures emphasize more on personal emotional burden management and the function of family support networks. Studies have shown that family caregiving stress is relatively low in Western countries due to the universal acceptance of formal care institutions and well-established social support systems, which make families more inclined to rely on external resources, such as nursing homes and telemedicine, to alleviate the stress of daily caregiving [45, 46]. This is unlike in East Asian countries, such as China, where families view caregiving as part of their moral responsibility, and sending patients to nursing homes is often seen as a choice that runs counter to traditional family values, thus exacerbating the psychological burden on relatives and tensions with patients [47–49].

In addition, for relatives in this study, caring for the patient for more than two years and the tendency to send the patient to a nursing home had a significant effect on EE. The subjects of this study were mainly adult only children living in urban areas who had fewer resources for home care and did not employ caregivers, and long-term care usually leads to an accumulation of emotional stress and thus more negative emotions [22, 49]. In contrast, in Western countries, where perceptions of care and support systems are more developed, long-term caregivers typically have easier access to social support and formal care services, and this difference in social context means that institutionalizing patients is not perceived as a negative behavior, and therefore has a less negative impact on EE [50–53]. In conclusion, the role of cultural context in influencing EE cannot be ignored, but the stigma of dementia and social prejudice may be common factors affecting relatives’ EE in both China and Western countries. Future studies should explore EE in different cultural and regional contexts in greater depth and develop adaptive intervention strategies to help dementia caregivers in all regions better cope with emotional challenges and reduce psychological stress.

The EE of relatives is associated with two distinct coping styles: active and passive. One studies have shown that coping styles are an important factor that influences relatives’ attitudes with regard to making more positive comments and fewer critical remarks [54]. Comparable patterns of EE and coping styles were identified among the relatives of psychiatric patients, with critical remarks from relatives showing a significant association with avoidant coping styles [55, 56]. There is a need for health care providers to provide positive coping styles and social support for relatives to reduce EE [57].

The present study showed a significant association between psychological distress and relatives’ EE. Many studies have also shown that relatives with high EE often suffer greater psychological distress. That is, high EE may lead to psychological distress, while psychological distress may also exacerbate the manifestation of EE. This bidirectional relationship suggests a complex interaction between EE and mental health, and also suggests that complex psychological and social mechanisms may exist between psychological distress and EE. These mechanisms include factors such as stress reactions, emotional exhaustion, cognitive biases, and lack of social support. Relatives with high EE typically experience higher levels of stress, which may stem from burdensome, intimacy, and emotional reactions to the patient [58]. Ongoing stress may lead to mental health problems in relatives, such as anxiety and depression. Stress perceptions can affect an individual’s ability to regulate their emotions, causing them to become more sensitive and negative in response to the patient’s behaviour [59]. Prolonged high EE can lead to emotional exhaustion, i.e. a depletion of emotional resources and a decrease in emotional regulation. This exhaustion may lead relatives to display more negative emotions and less supportive behaviours during caregiving [60]. Emotional exhaustion interacts with psychological distress to further exacerbate the manifestation of high EE.At the same time, relatives with high EE may experience cognitive biases, such as over-interpretation or negative appraisal of the patient’s behaviours, which not only affects their emotional state, but may also lead to more emotional conflicts and negative interactions [61]. In addition, the lack of effective social support increases psychological distress and makes relatives feel isolated in the face of caregiving challenges [62]. Taken together, future research should adopt a longitudinal study design to clarify how these mechanisms interact over time, tracking changes in carers’ EE over the course of long-term care and their impact on psychological well-being. By monitoring dynamic changes over time, a better understanding can be gained of how EE changes over time and which interventions may be most effective in reducing EE and improving mental health.

The stepwise multiple regression indicated that psychological distress was identified as a major factor. The results highlight the need to reduce the psychological distress of relatives to help them relieve their high EE. Length of caretaking was the second most important factor influencing EE, followed by chronic diseases of the patient with dementia. A longer period of care implies a longer duration of illness of the patient, a heavier burden on caregivers, and higher EE, consistent with previous studies [17]. Providing adequate social support may be an effective way to address this problem, particularly providing caregivers with opportunities for intermittent rest [13]. It is not surprising that people who take on the burden of self-care, the burden of caring for people with dementia, and the psychological burden of the illness of dementia experience chronic diseases. In addition, China’s national conditions demand that the relatives of people with dementia take care of them, coupled with the common situation of people with dementia receiving care at home will continue for a long time [63]. The heavy burden of care can easily lead to high EE in relatives and even to the abuse and illegal restriction of people with dementia [17, 64]. Such families may be the future focus of health care in mainland China.

This study has several limitations. Primarily, this study was conducted in a hospital in Changchun, Jilin Province, China, using convenience sampling, which introduces geographical limitations that may reduce the generalizability of the findings. Secondly, this study only focused on the EE total score situation and the influencing factors of the total score, and did not focus and pay attention to the influencing factors of the three features of EE expression (such as Criticism, Hostility, and Distancing), which may be different and deserve to be further explored in future studies.The recruited relatives did not explicitly define the length of care, which may affect the validity of the sample. Furthermore, this study utilizes a cross-sectional design and therefore cannot establish causal relationships between EE and variables, but only reveals their correlations. In the future, we will conduct a longitudinal study to further explore the dynamics of the variables over time and their causal mechanisms.

The practical applicability of the research results

  1. Informing policy makers: This study found that family caregivers in China face a high burden of emotional expression (EE) when caring for people with dementia, which may provide a reference for policy makers to reduce the stress of caregivers through policies such as social support, psychological counseling, and financial subsidies, as well as to promote the development of community and dementia care nursing services.

  2. Improving clinical practice: The results of this study suggest that high EE is associated with negative mental health status and negative coping strategies. Healthcare professionals can provide cognitive behavioral therapy (CBT) and emotion regulation training to help dementia caregivers better manage negative emotions.

  3. Public awareness and education: The findings highlight the role of culture and social expectations in EE, which can be used to design public education programs to increase understanding and support for people with dementia and their caregivers and to reduce social prejudice and stigma. These programs may include media campaigns, community talks, and public health education.

  4. Guiding the development of intervention strategies for carers: The different characteristics of psychological distress and coping styles identified in this study can be used to design mental health programs for emotional regulation and positive coping for relatives with high EE, which can help reduce the psychological burden on caregivers.

Conclusion

The high burden on caregivers of people with dementia is a global problem, especially in China, which has a large population of people with dementia. In China, home care is the main mode of care for people with dementia, primarily by relatives. The heavy burden of care and the development of BPSD make family patients vulnerable to deterioration. The associated physical restraint, criticism, and abuse of patients with dementia have many negative consequences. Based on the results of our study, a significant number of relatives demonstrated a high level of EE. Health care providers can identify high-risk groups for assistance based on the severity of dementia, age, health status and duration of care. At the same time, it is necessary for relatives to master positive coping styles and reduce their psychological distress levels to improve patient behavior and psychological outcomes of relatives. Future studies can further explore the influencing factors of EE and the relationships between factors to provide better strategies for solving this problem.

Electronic supplementary material

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Abbreviations

BPSD

Behavioral and psychological symptoms of dementia

EE

Emotional expression

DSM-V

Diagnostic and Statistical Manual of Mental Disorders, fifth edition

FAS

Family Attitude Scale

SCSQ

Simplified Coping Style Questionnaire

GHQ-12

12-item General Health Questionnaire

Author contributions

Yj Zhao, Df M, Sy F and J S contributed to the conception and design of this study. Sz Z, DP S, Jjn S and Sz G performed the statistical analysis. Yj Z, Df M, Sy F drafted the manuscript. Yf W, Qq Z, Y Z and Ht S critically reviewed the manuscript and supervised the entire study process. All authors reviewed the final draft and were willing to take responsibility for all aspects of the work.

Funding Statement

Key Laboratory of Geriatric Long-term Care (Naval Medical University), Ministry of Education (Grant. Number: LNYBPY-2023-20) and Graduate Innovation Fund of Jilin University (grant 2023CX130).

Data availability

The corresponding author will provide any information about the data presented in the article when requested.

Declarations

Ethics approval and consent to participate

All participants signed an informed consent form prior to the start of the study. An introductory statement about the purpose of the study, the number of questions and the time needed to complete the survey was provided. They were informed that they could voluntarily withdraw from the study at any time without any negative consequences. The study was based on the principles of the Declaration of Helsinki and was approved by the Research Ethics Review Board of Jilin University (2022110305).

Consent for publication

Not applicable.

Human ethics and consent to participate

Not applicable.

Competing interests

The authors declare no competing interests.

Footnotes

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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