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Economic burden and quality of life of patients with dementia in China: a systematic review and meta-analysis

Abstract

Background

China has the largest number of dementia patients worldwide. The prolonged course of dementia has a serious negative impact on the economy and quality of life of patients and their families.

Objective

The purpose of this study was to conduct a systematic review and meta-analysis of the existing literature about economic burden and quality of life of people with dementia in China.

Methods

Six databases were systematically searched for observational studies of the economic burden or quality of life of dementia that were published before June 30, 2024. This review was performed according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines.

Results

A total of 36,411 papers were identified, and 21 studies met the inclusion criteria. The annual economic burden of dementia was 20,893 RMB (3,104 USD). The total costs associated with mild, moderate, and severe dementia were 16,619 RMB (2,469 USD), 22,283 RMB (3,311 USD), and 34,611 RMB (5,143 USD), respectively, indicating that the cost increased significantly with increasing dementia severity. In terms of the quality of life, the combined total score for the Quality of Life-Alzheimer’s Disease scale was 30.11, with lower scores for the Housekeeping, Recreation, and Memory items.

Conclusions

Dementia imposes a significant economic and quality of life burden on Chinese patients. The government should pay more attention to dementia and develop a comprehensive prevention and treatment system to reduce the heavy burden of dementia.

Trial registration

This systematic review has the registration number CRD42022374470 on PROSPERO.

Peer Review reports

Introduction

Dementia is a neurodegenerative disorder characterized by progressive cognitive dysfunction [1] and encompasses various diseases, including Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal lobe dementia, mixed dementia, unspecified dementia, and other dementias. Alzheimer’s disease is the most common type of dementia, accounting for about two-third of all dementia cases [2]. Patients with dementia experience a significant decline in memory, cognition, comprehension, and daily functioning [3], along with psychiatric symptoms and abnormal behavior, which can significantly impair their ability to lead a normal life [4].

As the population ages, the prevalence of dementia among older individuals is increasing, making it one of the most important global public health issues of the twenty-first century [5]. Currently, there are approximately 50 million people with dementia worldwide, and the prevalence of dementia will increase to 152 million by 2050 [6]. China has the highest prevalence of dementia worldwide, with 15.07 million people aged 60 years and older affected by dementia [7, 8]. Studies have shown that the overall disease burden of dementia in China has been increasing since 1990, and the morbidity and mortality rates of dementia will continue to rise in the future [9]. The prolonged course of dementia and the increased risk of comorbidities lead to a significant increase in healthcare costs [10], which place a heavy burden on patients and their families. It is estimated that the global cost of dementia has increased from 604 billion USD in 2010 to 818 billion USD in 2015 [11].

In order to gain a comprehensive understanding of the burden on people with dementia, we describe both economic and quality of life (QoL) aspects. Economic burden can reveal the cost of treatment for people with dementia and understand the financial pressures faced by patients and their families. Analyzing the QoL of patients with dementia can help us to improve the overall QoL of patients by taking targeted measures in the care process, such as providing social activities and cognitive exercises. By identifying dementia groups with high economic burden and low quality of life, it can provide data support for the government to formulate dementia prevention and treatment policies, which can lead to better allocation of resources and improve the equity and efficiency of healthcare services. In the QoL studies of dementia, researchers have used a variety of measurement scales, such as the Alzheimer’s Disease-Related QoL Scale [12] and Dementia Quality of Life Scale [13]. One of the widely used scales is the Quality of Life-Alzheimer’s Disease (QoL-AD) [14], which was developed by Prof. Rebecca G. Logsdon from the University of Washington. Although several studies have evaluated the economic burden and QoL in patients with dementia in China, no systematic review has been conducted on this topic. Therefore, the present study was performed to fill this research gap. We conducted a systematic review and meta-analysis of published literature on the economic burden and QoL (measured using the QoL-AD scale) of patients with dementia in China, and provide evidence for the development of dementia prevention and treatment policies.

Materials and methods

This review and meta-analysis were performed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-analyses statement [15]. Because the analyses included previously published studies, ethical approval and informed consent were not required for this study. This project was registered in the PROSPERO database (CRD42022374470).

Data sources and search strategy

Two authors (BKX and HQL) conducted a comprehensive literature search using three English databases (Web of Science, PubMed, and Cochrane library) and three Chinese databases (China National Knowledge Infrastructure, Wanfang, and Weipu). Detailed descriptions of the six databases are provided in Supplementary Table 1. Articles published from database creation to June 30, 2024 were included. The following search terms were used: (dementia OR Alzheimer’s disease) AND (cost OR economic burden OR economic impact OR health expenditures), (dementia OR Alzheimer’s disease) AND (quality of life OR life quality OR QoL). The search strategy is shown in Supplementary Table 2.

Inclusion and exclusion criteria

Economic burden is associated with the severity of dementia and may vary considerably depending on the patient's cognitive functioning and ability to perform activities of daily living. Analyses based on the severity of dementia help us to understand more accurately the economic burden of patients with different levels of dementia, and also make the findings more realistic and instructive. We used the economic burden of patients with dementia of varying severity as an outcome indicator for the economic burden literature. In the QoL study, we used QoL-AD scale scores as an outcome indicator. The QoL-AD covers the items of physical health, energy, mood, living situation, memory, family, marriage, friends, chores, fun, money, self, and life as a whole. Each item is rated on 4-point Likert scales (total score: 13–52), with higher scores indicating a better QoL.

Studies were included if they fulfilled the following criteria: (1) observational studies; (2) reporting economic burden according to dementia severity; (3) QoL assessed using the self-administered QoL-AD scale; (4) results were expressed as means and standard deviations (SDs) or standard errors (SEs); (5) inclusion of Chinese population; and (6) publication in English or Chinese.

The following exclusion criteria were used: (1) reviews, conference abstracts, protocols, letters, expert opinions, and consensus statements; (2) economic burden outcomes not reported according to dementia severity; (3) QoL-AD scale was not self-administered; (4) means and SDs or SEs of economic burden or QoL were not recorded; (5) In the case of multiple publications of the same study, only the one with the most complete information was retained; (6) lack of Chinese population in the study; and (7) published in a language other than English and Chinese.

Study selection

The articles retrieved were systematically and sequentially screened according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses statement. All references were classified and screened using Endnote 20 software. First, duplicate articles were excluded using the Endnote 20 software. Second, two authors (BKX and HQL) screened the retrieved articles and excluded irrelevant results based on a review of the titles and abstracts. Finally, two authors (BKX and HQL) further screened the full-text versions of the articles to identify studies that fulfilled the eligibility criteria. Both authors independently reviewed the included articles. Any disagreements were resolved through discussion with the third author (RJ).

Data extraction and quality assessment

Two authors (BKX and HQL) extracted and cross-checked the data independently. Disagreements were resolved by discussion or consultation with the third author (RJ). We extracted the following information from the included studies: study authors, publication year, investigation year, region, study design, sample size, mean age, sex ratio, disease duration, and primary outcomes (economic burden and quality of life). This information was entered into the Excel 2019 software.

The two authors (BKX and HQL) independently assessed the methodological quality of the included studies. Cross-sectional studies were evaluated using the criteria recommended by the Agency for Healthcare Research and Quality (AHRQ) [16]. These criteria include 11 items that are answered with “Yes,” “No,” or “Unclear.” Except for one item, an answer of “Yes” on the remaining items is scored one point, whereas an answer of “No” or “Unclear” is assigned a score of zero. Article quality was rated as low (0–3), moderate (4–7), or high (8–11). Case–control studies were evaluated using the Newcastle–Ottawa scale (NOS), which evaluates studies based on study population selection, comparability between groups, and exposure dimensions [17]. Scores range from 0 (lowest degree) to 9 (highest degree), with scores of 7–9, 5–6, and 0–4 indicating high, moderate, and low quality of studies, respectively.

Statistical analyses

The meta-analysis was conducted using the metan package of STATA 14 software. Means and SDs of economic burden were extracted as effect indicators, and the results were reported as 2022 Renminbi (RMB) based on the Chinese consumer price index and exchange rate (exchange rate: 1 USD = 6.73 RMB; National Bureau of Statistics of China, 2022) [18]. The economic burden was categorized as “mild” “moderate” “severe” and “all levels”. This meta-analysis presents the converted data. To analyze the QoL, the means and SDs of the scores of the 13 items and the total score of the QoL-AD were extracted as effect indicators. The I2 test was used to evaluate the heterogeneity between studies [19]. I2 < 50% indicated no statistical heterogeneity among studies and a fixed-effects model was used, whereas I2 ≥ 50% indicated significant statistical heterogeneity among studies and a random-effects model was used. Sensitivity analyses were performed to explore the possible sources of heterogeneity and their impact on the results. Publication bias was quantified using Egger’s test [20]. P values < 0.05 were considered statistically significant. The main results were presented in tables or figures.

Results

Search results

The database search retrieved 36,411 records. After eliminating duplicate reports, 31,666 articles were screened for inclusion. Following title and abstract review, the full-text of 2,195 articles were assessed for eligibility, and 2,174 were excluded due to not meeting eligibility criteria for inclusion (Fig. 1). Finally, 21 studies were included, including 8 related to the economic burden [21,22,23,24,25,26,27,28] and 13 related to the QoL of patients with dementia [29,30,31,32,33,34,35,36,37,38,39,40,41].

Fig. 1
figure 1

Preferred Reporting Items for Systematic Reviews and Meta-analyses flowchart of study selection

Quality assessment

Table 1 shows the quality assessment of 21 articles using the quality assessment tool. Among the economic burden studies, eight were cross-sectional, and their quality was evaluated using the AHRQ evaluation criteria. Of these, 1 study included data from 81 study centers and had a high quality, whereas the remaining 7 studies had a moderate quality. Among the QoL studies, 11 were cross-sectional, which were evaluated using the AHRQ evaluation criteria, whereas two were case–control studies, which were evaluated using the NOS. Three of the 13 QoL studies had a high quality, whereas 10 had a moderate quality. On average, the included studies had a moderate quality. The specific scores for each literature are shown in Supplementary Table 3 and Supplementary Table 4.

Table 1 Quality assessment of the included studies

Economic burden of dementia

Study characteristics

All eight economic burden studies included in this review had a cross-sectional study design. The characteristics of the included studies and the raw data for each cost category are shown in Table 2. A total of 3,884 patients with dementia were included in the eight studies, and the studies assessed dementia severity according to the Clinical Dementia Rating scale or Mini-Mental State Examination. The study sites were mainly located in Shanghai, Taiyuan, Guangzhou, and Taiwan, whereas one study [26] was conducted in 30 provincial, municipal, and autonomous regions in mainland China. By analyzing the cost categories of each study, we found that significant attention was paid to direct medical costs, direct non-medical costs, and indirect costs, while intangible costs were often neglected. Furthermore, there was variation in the definitions of various costs. This implies that there are differences in the results across studies, which may negatively affect the accuracy of the meta-analysis.

Table 2 Characteristics of the included economic burden studies

Meta-analysis of economic burden studies

The included studies classified dementia as mild, moderate, and severe. The costs were reported for all levels of dementia severity. The costs for each study are shown in Table 3.

Table 3 Costs associated with the level of dementia severity (RMB)

The results of the meta-analysis for each level of economic burden are shown in Supplementary Fig. 1. The mean economic burdens for the mild, moderate, and severe categories of dementia severity were 16,619 RMB (2,469 USD), 22,283 RMB (3,311 USD), and 34,611 RMB (5,143 USD) per patient per year, respectively. These results show that the total costs increase significantly with the dementia severity. For all levels of dementia severity, Yan et al. [26] reported the highest average cost of 140,722 RMB and Liu et al. [22] reported the lowest average cost of 18,931 RMB. Overall, the average cost for all levels of dementia severity in the meta-analysis was 20,893 RMB (3,104 USD) per patient per year (Fig. 2).

Fig. 2
figure 2

Meta-analysis of the economic burden of patients with all levels of dementia severity

QoL of dementia patients

Study characteristics

A total of 13 QoL studies were included in this review, of which eleven were cross-sectional studies and two were case–control studies. The characteristics of the included studies are summarized in Table 4. The 13 studies included 1,759 patients with dementia and were conducted in Beijing (n = 2), Shanghai (n = 1), Taiyuan (n = 2), Shanxi (n = 1), Zhejiang (n = 2), Hong Kong (n = 1), Wuhan (n = 1), Taiwan (n = 1), Jilin (n = 1), and Shandong (n = 1). The mean age of the included dementia patients ranged from 67–82 years and the majority had Alzheimer's disease.

Table 4 Characteristics of the included QoL studies

Meta-analysis of QoL studies

Table 5 shows the results of the meta-analysis of the 13 studies that reported the QoL-AD scores of dementia patients, such as the pooled mean and 95% CI. The mean scores of the ability to do chores around the house, ability to do things for fun, and memory items were 1.94, 1.68, and 1.70, respectively, while the scores of the other entries were above 2.00. Among all entries, the family entry had the highest score of 2.68. Forest plots for the meta-analysis of each item are presented in Supplementary Fig. 2. The result of the meta-analysis of the total QoL-AD score was 30.11, with a 95% CI of 27.71–32.51 (Fig. 3).

Table 5 Results of the meta-analysis for the QoL-AD items
Fig. 3
figure 3

Meta-analysis of the QoL-AD scale total scores

To analyze the differences in the QoL between patients with dementia and the general population, we combined the QoL-AD scores of the control group from two case–control studies [31, 36] and compared them with the results of the meta-analysis of patients with dementia. The result of the QoL-AD score comparison is shown in Fig. 4. This figure demonstrates that dementia patients had lower QoL-AD scores than the healthy population for all items, especially the ability to do chores around the house, ability to do things for fun, and memory. In addition, the difference between dementia patients and the healthy population was relatively small for the item scores of family, living situation, and life as a whole.

Fig. 4
figure 4

Comparison of QoL-AD scores between dementia patients and the healthy population

Publication bias and sensitivity analysis

For the studies on economic burden, the Egger’s test showed publication bias for the category of “all levels” of dementia severity (p < 0.05, Fig. 5), but no significant publication bias for the mild, moderate, or severe categories (Supplementary Fig. 3). The results of the sensitivity analysis showed that Wang et al. [23] had a larger effect on the results of meta-analysis for the category of “all levels” of dementia severity (Fig. 5), while the results of the meta-analysis for mild, moderate, and severe categories were more stable (Supplementary Fig. 1). After excluding the study of Wang et al., the meta-analysis results for the category of “all levels” of dementia severity was 30,678 RMB (4,558 USD) (Fig. 6).

Fig. 5
figure 5

Publication bias assessment (A) and sensitivity analysis (B) of the economic burden for all levels of dementia severity

Fig. 6
figure 6

Meta-analysis of studies on the economic burden for all levels of dementia severity, after excluding the Wang et al. study

For the studies on the QoL of patients with dementia, the Egger’s test showed no publication bias in the QoL-AD total score (p > 0.05, Fig. 7); the publication bias for each item of the QoL-AD is presented in Supplementary Fig. 5. The results of the sensitivity analysis demonstrated no significant changes in the combined QoL-AD total score after excluding individual studies (Fig. 7). Sensitivity analyses for each item are presented in Supplementary Fig. 6, which showed that most results were stable.

Fig. 7
figure 7

Publication bias assessment (A) and sensitivity analysis (B) for the total score of the QoL-AD scale

Discussion

Dementia is an age-related chronic neurodegenerative disease that is a leading cause of death in older adults worldwide and a significant public health and social challenge [42]. Several studies have evaluated the economic burden and QoL of dementia patients in China, but no systematic review has summarized these studies. Therefore, this review aimed to systematically analyze the existing studies on the economic burden and QoL of patients with dementia in China and to explore the burden of dementia on patients, their families, and the society.

We found that the economic burden values with mild, moderate, and severe dementia were 16,619 RMB (2,469 USD), 22,283 RMB (3,311 USD), and 34,611 RMB (5,143 USD) per patient per year, respectively. These findings suggest a positive correlation between the level of dementia severity and the economic burden, with greater dementia severity being associated with a higher cost. These results are generally consistent with those of previous studies [43,44,45]. In addition, the annual cost for dementia was 20,893 RMB (3,104 USD). However, the sensitivity analysis showed poor stability of these results, mainly due to the influence of Wang et al. This may be because Wang et al. was given a larger weight in the meta-analysis and there were significant differences between Wang et al. and other studies. Therefore, Wang et al. had an impact on the stability of the meta-analysis results. After excluding this study, the annual cost of dementia was adjusted to 30,678 RMB (4,558 USD) and the results were stabilized. According to data published by the National Bureau of Statistics of China, the national disposable income per capita was 36,883 RMB in 2022 and the health expenditure per capita was 5439.97 RMB in 2021 [18]. Compared to the annual cost of dementia derived from this study (30,678 RMB), the total cost accounted for the per capita disposable income was 83.18%, which was almost sixfold higher than the per capita health expenditure, indicating a high annual cost of dementia. In addition, we derived costs for dementia patients is lower than in other studies. For example, a survey of caregivers of 330 people with dementia in Chile showed an average cost of 17,559 USD per patient per year [46]. In another study of global costs for people with dementia, the cost per person with dementia in 2019 was 23,796 USD [47]. This may be due to differences in countries' level of economic development, measurement methods, etc., and we should be cautious about extrapolating our results to all people with dementia.

Another finding of this meta-analysis is that there were large differences in expenditures between the eight studies of economic burden. A possible reason for this is that the inflation rate and differences in economic development between the study regions were not taken into account. Although we used the consumer price index and exchange rate to convert the economic burden to comparable values for 2022, there were significant differences among studies. One study conducted a nationwide survey with a large sample size to analyze the economic burden of dementia at a large scale [26]. However, other studies with a small sample size focused on the cost of dementia in only a single region. Moreover, the level of economic development varies among regions in China, which may have led to variations in the results of the included studies. Per capita income is generally lower in less economically developed regions, such as Jiangxi, where the per capita disposable income of its residents was 32,419 RMB in 2022, according to the Jiangxi Statistical Yearbook 2023 [48]. In contrast, according to the Shanghai Statistical Yearbook 2023, the per capita disposable income in Shanghai was 79,610 RMB in 2022 [49], about 2.5 times that of Jiangxi. And Shanghai has high-quality medical resources, including high-level hospitals and professional medical staff, so the economic burden of its dementia patients is significantly higher than that of Jiangxi. Another possible reason for this is that the types of dementia included and the perspectives on economic burden differed across studies. Regarding the dementia type, four studies only investigated patients with Alzheimer’s disease, while the other studies investigated multiple dementia types. The economic burden of dementia can be studied from different perspectives, such as patient perspective, health care provider perspective, and societal perspective. The different research perspectives will result in different cost components. Most studies investigated the direct medical costs, direct non-medical costs, and indirect costs, but the specific items included in the above three costs may be different in each study. In addition, only a single study evaluated the intangible costs. Therefore, the classification and content of dementia costs needs to be standardized across studies to allow comparison between them [50, 51]. Future studies should include diverse dementia types and include patients from multiple regions of China.

The QoL-AD is a commonly used scale to assess the QoL in patients with dementia and has been applied in many countries, such as the United States, the United Kingdom, Japan, and China. This scale has a good reliability and validity [52,53,54]. A total of 13 QoL studies were included in this study. Among the QoL-AD items, family had the highest score of 2.68, while the ability to do chores around the house, ability to do things for fun, and memory had scores of 1.94, 1.68, and 1.70, respectively, which were lower than those of other items. This indicates that dementia patients have poor behavior and memory. Meanwhile, further sensitivity analysis showed that our results were stable. Compared to the healthy population, patients with dementia had lower scores on all 13 items of the QoL-AD scale. The differences between the scores of the healthy population and dementia patients were particularly significant in the somatic behavior and cognitive dimensions: the ability to do chores around the house, ability to do things for fun, and memory. In addition, physical health, self, friends, and money scores were also lower in patients with dementia than in healthy population. It is possible that the progressive decline in cognition, personality changes, and mental abnormalities in patients with dementia lead to a reduction in their ability to work, learn, and live independently. These findings support the results of previous studies, which showed that the QoL of patients with dementia is significantly decreased [55]. With disease progression, the QoL of dementia patients gradually deteriorates, leading to a loss of ability to live independently. Therefore, the daily life of dementia patients requires dedicated care. A slight negligence in this process may result in adverse events, such as falling, getting lost, or unintentionally hurting others. However, the intensive caregiving tasks and the low cooperation of the patient make it difficult provide care. This leads to a continuous increase in mental stress and depression of the caregiver, which has a negative impact on their physical and mental health. It also impacts the patient and affects their QoL.

With the continuously increasing population age, the Health China Action (2019–2030) includes “a decrease in the incidence of disability among people aged 65–74, and a decrease in the growth rate of dementia in old age among people aged 65 and above” as an outcome indicator in the health promotion action for older adult [56]. In 2020, the National Health Commission issued the Work Plan for Exploring Specialized Services for Dementia Prevention and Treatment to instruct regions to provide comprehensive prevention and treatment of dementia and reduce the burden of dementia on families and the society [57]. The China has entered an aging society, and it is estimated that more older people will develop dementia in the future and would require elderly care. Families of people with dementia face the dual pressures of high disease costs and heavy caregiving burdens. In particular, the parents of the first one-child generation have entered the middle and old age. This generation have to devote their time and energy to work and their children’s education. As a result, they have little time left to take care of their parents. If their parents suffer from dementia, these individuals face enormous pressure in their lives. The causes and mechanisms of dementia are still unclear, and there is no effective treatment. Therefore, advocacy and education should be strengthened to raise public awareness of dementia, so that early symptoms of dementia can be recognized and interventions can be administered in a timely manner. At the same time, the government should play its role in improving the pension insurance and long-term care insurance schemes for older persons, and establish a multi-level pension service system to reduce the burden of dementia on the patients and their families.

This review provides an up-to-date overview of the available data on the economic burden and QoL of dementia patients in China, revealing the enormous burden of dementia. These findings will draw the attention of the society to people with dementia and provide evidence for policy makers to understand the heavy economic burden and poor QoL of dementia patients, which will enable them to allocate the health resources appropriately.

However, our review had some limitations. First, the number of included studies was small. Many studies were excluded due to a lack of relevant information. And most of the included studies, especially the QoL study, have small sample sizes. In the future, there is a need to conduct a large sample survey on QoL in dementia patients and try to explore the differences in QoL of patients between urban and rural areas, and between economically developed and underdeveloped areas. Second, the differences in outcomes reported by the economic burden studies may be due to variations in the measurement methods and instruments used. In the future, the development of uniform cost-monitoring items and calculation methods should be explored so that the results of the studies are more comparable with each other. Third, most studies included in this review recruited patients from hospital outpatient clinics, so our results may not be fully representative of the dementia population. Future studies need to be conducted to ensure that the samples cover patients with dementia from different geographical areas, ages, genders, and social backgrounds to improve the representativeness of the findings. In addition, as existing studies have analyzed from one side, either economic burden or QoL, it is not possible to link and compare economic burden with QoL as they are not from the same sample. Further empirical studies are needed to explore the connection between QoL and economic burden in people with dementia.

Conclusion

The results of this review confirm that dementia imposes a significant economic burden on Chinese patients and their families. And the quality of life of dementia patients is poor, especially in terms of behavior and cognition. In the context of the increasing population age, the government should develop a comprehensive prevention and treatment system so that patients can receive effective treatment and care, thus reducing the heavy burden of dementia. In addition, the physical and mental health of caregivers needs to be evaluated and effective psychological interventions are required to alleviate caregiver stress.

Availability of data and materials

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

Abbreviations

AHRQ:

Agency for Healthcare Research and Quality

NOS:

Newcastle-Ottawa scale

QoL:

Quality of life

QoL-AD:

Quality of Life-Alzheimer’s Disease

RMB:

Renminbi

SDs:

Standard deviations

SEs:

Standard errors

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Funding

This study was supported by Chinese Medicine Education Association (Project number: 2023WSJSPGZXKT-04).

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HH and RJ contributed to the study topic and design and were responsible for reviewing and revising the manuscript. BKX and HQL performed the database search, literature screening, information extraction, and quality evaluation. BKX and RJ were involved in the analysis and interpretation of the data. BKX was a major contributor in writing the manuscript. All authors have read and approved the final manuscript.

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Additional file 1: Supplementary material Economic burden and quality of life of patients with dementia in China: a systematic review and meta-analysis.

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Xing, B., Li, H., Hua, H. et al. Economic burden and quality of life of patients with dementia in China: a systematic review and meta-analysis. BMC Geriatr 24, 789 (2024). https://doi.org/10.1186/s12877-024-05359-6

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