What influences healthcare surrogate decision-making among relatives of Chinese patients with dementia: a qualitative study based on the ODSF theory

What influences healthcare surrogate decision-making among relatives of Chinese patients with dementia: a qualitative study based on the ODSF theory | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article What influences healthcare surrogate decision-making among relatives of Chinese patients with dementia: a qualitative study based on the ODSF theory Xiangge Fan, Ali Peng, Min Qi, Juan Xu, Dong Geng, Congmin Zuo, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5809923/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background Caring for someone with dementia can be a difficult and time-consuming task. Because Chinese Confucianism encourages harmonious family-centered decision-making, family members frequently assume the role of surrogate decision-maker. Mistakes in decision-making can result in not just wasted resources, higher expenses, and ineffective interventions, but also patient suffering and caregiver anxiety if not properly navigated. As a result, this study employed a qualitative research approach to investigate the variables of family members of people with dementia in the process of surrogate decision-making. Methods To gain a comprehensive grasp of the study objectives, this qualitative investigation employed content analysis. Semi-structured interviews were conducted. Inductive content analysis was chosen to collect data for this study, the next step is to organize the qualitative data. This process includes open coding, creating categories and abstraction. Results Following data analysis, three overarching theme were identified. Following data analysis, three themes and 10 sub-themes were ultimately summarized in this study. The key thematic findings are summarized. Conclusion In this study, we explored the factors associated with surrogate decision-making through the perspectives of family members of Chinese patients with dementia. Among them, traditional Chinese kinship served as the primary link between the facilitators of surrogate decision-making. This was because an individual's tastes, values, and goals tended to remain consistent over time, making decisions that depended on familiarity and kinship more reasonable to the surrogate. Further, we should have paid attention to differences in alternative decision-making, where a person's autonomy was preserved into the future even in situations where a person may have been perceived as unable to make the decision at hand. Thus, a basic respect for the individual and humanity would have required us to do more, namely, to pay attention to the impediments in the decision-making process. Alzheimer surrogate qualitative study nursing decision-making INTRODUCTION A variety of cognitive and behavioral symptoms resulting from degenerative disorders of the central nervous system that impair memory, reasoning, behavior, and the capacity to carry out daily tasks are together referred to as dementia [ 1 ]. The three phases of dementia progression—the mild, moderate, and severe stages—are frequently used to characterize its advancement. Patients with dementia frequently have sensory loss as the disease worsens and gradually lose their ability to think clearly, act appropriately, and speak [ 2 ]. These impairments eventually interfere with day-to-day functioning and activities. The number of elderly persons suffering from dementia is rising worldwide. Currently, 50 million individuals suffer from dementia; by 2050, that number is predicted to rise to 152 million [ 3 ]. Chinese dementia sufferers make up over 25% of the global dementia population[ 4 ], which presents a significant challenge to policymakers, medical professionals, and family members [ 5 – 7 ]. Caring for someone with dementia can be a difficult and time-consuming task [ 8 , 9 ]. Due to the complexity of the disease, many people with dementia suffer from a lack of abilities [ 10 ] such as recurrent infections, dysphagia, incontinence and total dependency [ 2 ]. As the disease progresses to stages II and III, the patient's decision-making ability is gradually lost, and other people need to be involved in the decision-making about the dementia patient's treatment and care in order to ensure that the dementia patient's care and treatment can continue [ 8 , 11 ]. These people with advanced dementia are unable to advocate for themselves [ 12 , 13 ], cannot reliably communicate symptoms, and are completely dependent on staff for all their care needs [ 14 ]. Substitute decision-making is a term which has broadly been used to refer to the situation in which one person makes a decision on behalf of another [ 15 ]. Surrogate decision makers are health agents who assist patients in making scientifically informed benefit-maximizing decisions, such as whether to get palliative care or symptomatic treatment. Surrogate decision makers in other countries include relatives such as the patient's spouse, parents, adult children, and siblings, as well as individuals authorized by legislation. Because Chinese Confucianism encourages harmonious family-centered decision-making, family members frequently assume the role of surrogate decision-maker. Many of the caregivers’ beliefs, perceptions, and experiences are difficult to quantify because they are influenced by a varying degree of socio-cultural and traditional values, which may deeply influence the individual’s subjective perception of these values [ 16 ]. Meanwhile, Modern healthcare is undeniably complex, frequently overwhelming patients and loved ones with high stakes and confusing medical decisions. Mistakes in decision-making can result in not just wasted resources, higher expenses, and ineffective interventions, but also patient suffering and caregiver anxiety if not properly navigated [ 17 ]. So, the most popular theoretical framework for decision support is the Ottawa Decisions Support Framework (ODSF) [ 18 ]. One of the significant contributions of ODSF is the identification of decision conflict as a key factor in decision-making, which involves making choices among a series of decision actions [ 19 ]. Currently, it has been utilized to assess and address individuals' decision-making needs, particularly in the context of medical decisions [ 20 ]. It is a practical, evidence-based theory that helps Surrogate decision makers make the optimal choices. Numerous patient decision assistance components have been successfully developed in various domains based on this approach [ 21 ]. As dementia becomes more prevalent, more people will experience this difficulty. There is a paucity of study on the specific experiences of people with dementia who act as surrogate decision-makers. As a result, this study employed a qualitative research approach to investigate the influence of family members of people with dementia based on the ODSF theory in the process of surrogate decision-making. PARTICIPANTS AND METHODS Design and participants The design of the qualitative study was descriptive. The Guidelines for Reporting Qualitative Research were the foundation for the preparation of the current study (COREQ) [22]. To gain a comprehensive grasp of the study objectives, this qualitative investigation employed content analysis. Content analysis has long been used to provide evidence for a phenomenon. Participants were recruited using a purposive sampling method to identify people who could answer relevant questions about agent decision-making with AD. The lead author, then a nursing in hospital, conducted 21 semi-structured interviews with relatives of patients with Alzheimer's dementia (n=21). The participants included the family members (spouses, children, grandchildren, in-laws) of the patient living with AD from a tertiary-A hospital in China. The diagnostic criteria for dementia: (1) meeting the diagnostic criteria for Alzheimer's disease in the 2018 Chinese Guidelines for the Diagnosis and Treatment of Dementia and Cognitive Impairment; (2) CDR scores ranging from 0.5 to 2; (3) cranial MRI suggestive of cerebral cortex and hippocampal atrophy; and (4) cerebrospinal fluid biomarker test results showing a decrease in Aβ1-42 and a significant increase in Tau protein. The inclusion criteria of relatives of patients with AD included: (1) Recent or previous involvement in proxy decision-making; (2) Care hours greater than or equal to 3 days; (3) speak Chinese; and (4) Willingness to participate in this study and sign an informed consent form. Data collection Semi-structured interviews were conducted, in-depth interviews between April 2024 and November 2024. At the beginning of the study, we set up a research group with seven nurses. The seven nurses have been engaged in the nursing of dementia patients for more than ten years and have rich clinical practice ability. We identified a number of interview questions through research group discussions and two pilot interviews. As the research continued to deepen, the interview outline was finally determined. Clinical trial number: not applicable. Every participant gave their informed consent before having their interviews used for study. To ensure that they remained anonymous, each participant was given an identification. During the interviews, participants were asked to describe their experiences of surrogate decision-making for people with dementia. Example questions from the final protocol were: Do you understand surrogate decision-making? What are some of the factors you consider when making decisions for patient agency? What help do you seek or what help do you need when making-decisions by proxy? What is the process like when making surrogate decisions for patients with dementia? How does decision making for people with dementia differ from the decisions you used to make yourself? What is your role in surrogate decision making? Interview guide for participants are described in table 1 below. Before the interview, the interviewer was familiarized with the interview outline process, chose a quiet and comfortable environment during the interview, interacted with the interviewee, encouraged expression, and provided timely feedback and verification. All interviews were audio-recorded by a researcher and recorded at all times to observe changes in patients' speech and expressions. Interviews were conducted in a quiet conference room in the hospital to ensure that participants were not disturbed during the interview. On average, the interviews lasted approximately an hour. Table 1 Interview guide for participants. Interview guide for participants Pre-interview Checks Introducing the researcher, providing a brief overview of the study's objectives, fill out the informed consent form and the demographic information questionnaire. Thank the participant for contributing. Check the voice recording equipment is working. Some background knowledge issues Please tell us how well you know the disease Do you understand the disease dementia? Do you understand some of the patient's previous surrogate decisions? What healthcare decisions have you and your patients ever decided together? For example, treatment and medication decisions? Decisions about admission to the hospital? What is your pattern of getting along with each other How is your relationship? What memories do you have in common? Do you know him well enough? When a patient is faced with some medical decision, who is responsible for making that decision? Opening questions Tell us what you know about agent decision-making What do you consider to be agency decision-making? What do you think the best agent decisions should look like? What do you think good agency decisions need to consider? Tell us about the experience of proxy decision-making I hope you can say what are some of the agent decisions that have impressed you more? Hopefully you can say what happened on the day of the proxy decision? What are some of the challenges involved in proxy decision-making for you? How is it different from your previous decision-making process? What factors influence your decision-making Based on your previous experience, what factors contribute to your agency decisions? What or who has helped you make decisions by proxy? In your experience, what are some of the obstacles or difficulties in the agency decision-making process? What role do other family members play in agency decisions? When making decisions for patient agency, what criteria do you refer to when making decisions? Closing and thanks for participation The interviewer should be patient in explaining any research questions that arose from the participants during the interview. After the interviews were completed, the relevant interview content was organized and participants were invited again to explain some of the more vague or ambiguous elements. Data analysis Inductive content analysis was chosen to collect data for this study, the next step is to organize the qualitative data [23]. This process includes open coding, creating categories and abstraction. The specific steps of the study are as follows. (1) The researcher reads the interview data repeatedly until researcher is very familiar with the overall content of the data. (2) Open coding is carried out, in which the researcher analyzes the data line by line and labels what is meaningful. (3) Categories are created, and similar or related codes are compared and categorized, and themes and sub-themes are gradually formed. (4) Themes, sub-themes, and codes are defined and some representative examples are extracted from the data. extract some representative examples. Meanwhile, the researcher does not wait for all the data to be collected before analyzing the data, but rather, the data analysis is done in parallel with the collection of the data [24]. The researcher is not prohibited from using deductive logic to formulate a preliminary or embryonic theory from the limited data and use it to guide the subsequent data collection, even though the information is not yet complete [25]. The embryonic idea is put to the test by the evidence that is later collected. Once a theory is formulated, the researcher may identify the features that need to be included to support it. Consequently, the subsequent data collection was intentionally designed to capture the missing information. The idea was subsequently expanded in accordance with the facts that followed, if it is confirmed. If the information acquired later contradicts the previously presented prototype hypothesis, the theory is revised. When there is disagreement with the previously provided prototype theory, the theory is updated and utilized to guide subsequent data collecting [26]. This technique is repeated until theory saturation is reached. Theory saturation means that the theory's dimensions have been exhausted and no additional dimensions can be discovered [27]. Rigor or techniques to enhance trustworthiness In order to ensure the credibility, reliability and rigor of the study [28]. To guarantee sample richness and variety, this study first implemented the maximum differentiation principle in sampling. The researchers possessed a multifaceted understanding of the phenomena because, as clinical frontline caregivers, they had regular interactions and observations with dementia patients and their families over an extended period of time. Third, two researchers meticulously transcribed the interview transcripts, and a third researcher double-checked and authenticated the work. Fourth, in order to determine whether information existed that the researcher alone could not have known, impartial peers who were not involved in the study examined or debated the technique, conclusions, and research design. Fifth, in order to limit the impact of our own thinking, study questions and probes were planned to be as neutral and open-ended as possible in order to prevent "leading the witness" with our point of view [29]. Ethics approval and consent to participate Before the interview, participants were informed of our study purpose, voluntary participation, and confidentiality. Participants were given adequate explanations about the research goal, interview techniques, information confidentiality, and the right to take part or withdraw from the study at the start of each interview. Following from the above that, the participants completed an informed consent form based on the Helsinki Convention. Furthermore, the researcher told the participants that all interview information would be kept confidential and that audio and text files would be preserved on an encrypted document. The interview transcripts were prepared in an anonymized manner. This study was approved by the Bioethics Review Committee, Tangdu Hospital Fourth Military Medical University, (approval number K202405–22). Participant characteristics In the end, thirteen family members finished the interviews. The interviews with each participant lasted anything from forty to ninety minutes. The average age of the dementia patients was 65. Of those afflicted with dementia, 46% were women and 54% were males. Only one of the thirteen dementia patients was unmarried. The average age of the caretakers was 52 years old. Men made up 54% of the caretakers, while women made up 46%. In addition, the several basic demographic traits of dementia patients and their family is provided (Table 2). To protect patients' privacy, the interviews were coded as NO.1 ~ NO.13 . RESULTS Participants’characteristics We interviewed with 13 Chinese relatives who varied in their age, gender, and level of education in relation to the patient, as well as their perceptions about surrogate decision-making. 38 percent of these were male relatives, while 62 percent were female relations. Eight people, or 62% of the total, had been providing care for more than or equivalent to a year. The 13 relatives are described in detail in table 2. Following data analysis, three themes and 10 sub-themes were ultimately summarized in this study. The key thematic findings are summarized (Table 3). Theme: “Decision-making needs” This category includes the sub-categories of Reducing the burden of care, economic needs Reduce negative emotions, More resources and Desire for respect. The invisible bond of affection that connects patients to their families leads to a sense of responsibility and mission among the families. Indeed, the love and expectation of the relatives for the patient as a result of their kinship is one of the important factors in the decision-making of family agency. Reducing the burden of care Patients in the later stages of dementia require family members to take turns to care for them, and the burden of care is heavy. As a result, much of the proxy decision-making process is often carried out under heavy stress. Some relatives report that they are unable to make rational decisions in hectic modern lives. “I have to feed my patient every day, help her go to the bathroom, take her out to exercise, and it feels like there's no free time in my life. So basically making decisions can be rushed because I don't have time to think too much.” NO.6. economic needs Dementia patients take a long time to be treated, and the cost of medical treatment and care places a burden on family finances. As a result, treatment for dementia patients is reduced or even neglected in time of financial hardship. “Dementia diseases take so long to treat that we can't afford the high cost of medicine.” NO.2. Reduce negative emotions In the initial stages of developing dementia, family members are usually told about the incurable nature of the dementia disease. As a result they can have their judgement clouded by this negativity during the treatment process, as well as having a negative impact on their decision-making. “I would read a lot of messages from the internet about the incurability of this disease. These negative messages signaled that whatever decision I made would do nothing for my wife's disease” NO.3. More resources Due to the incurable nature and slow progression of dementia, it requires a patient to be in the midst of such a chronic disease for a long period of time. However, during the interviews, many patients and their families were not aware of some of the specialized knowledge related to the disease, so that they could not make accurate decisions. In order to make better proxy decisions, families say they actively seek out healthcare facilities. However, large hospitals in China currently limit the number of days of hospitalization, and elderly care facilities are scarce and do not provide adequate care. Limited resources are often an issue that families have to consider when making decisions. “Large hospitals don't let us stay in the hospital for long periods of time, and patients need a lot of rehab equipment to support their rehabilitation exercises.” NO.10. “I didn't know if I should continue to go to treatment or if I should give up, I had no idea about the disease or what the future should hold for the patient.” NO.6. Desire for respect In the traditional cultural concepts of Chinese society, men often represent the decision-making power in the family. There are even some relatives who, despite being involved in the patient's care and decision-making, are often ignored for advice because their gender is female. A family member indicated that he or she had been caring for the patient for a long time, but his or her suggestions were not taken into account in the proxy decision-making process. “As a woman, I felt like some of the advice I was giving would not be taken seriously at all, even though I was caring for patients for a long time.” NO.4. Theme: “Decision support” According to relatives, caring for someone with dementia is a comprehensive and complex process, and surrounding support is crucial. Subcategories of this category include: The Responsibility of Kinship, Healthcare worker support, and Social concern about the disease. The Responsibility of Kinship In most cases, family members are involved in the proxy decision-making process in China, with one of the family representatives making the final decision. The love, participation, understanding and support of the family members will make the proxy decision-making process warmer. At the same time, the decision maker's feelings and responsibilities towards the person with dementia are stronger. Meanwhile, in traditional filial piety, carers believe that as relatives of the patient, they have responsibility to care for the patient. They believe that this sense of responsibility makes them feel fulfilled. At the same time, this sense of responsibility helps to develop values that promote positive decision-making. “I'm the oldest child in the family, and I'm the one who takes care of my mom and dad at home, so I'm the one who makes the final decisions in our house, but I usually listen to the rest of the family as well.” NO.2. “He is my father and I have a great responsibility to take care of him. If I don't take care of him, who else is going to take care of him? We're family, and I take care of him like he took care of me when I was a kid, and that's a wonderful feeling.” NO.12. Healthcare worker support In hospitals, families are often at a loss in caring for their patients, and healthcare workers have specialised medical knowledge that is a major consideration in their decision-making process. Families of dementia’s patients say that the support of healthcare workers is very important to them. There are even some family members who follow the doctor's advice completely. “I'm not very educated, I don't know a lot of things, basically whatever the doctor says, and usually if we're at home we don't take anything else. It's only when we're in the hospital that we feel we have something to fall back on, because the doctors are more professional than us and put us more at ease.” NO.1. Social concern about the disease In China, the state has a medical chronic disease subsidy policy for dementia patients, which can reduce the financial pressure on families to a certain extent. Families indicate that they also receive some support on social media and public platforms. There are a lot of advices on the treatment of dementia patients and related knowledge about the disease on social media, which to a certain extent facilitate better decision-making by family members. “People with dementia get some help in the community, such as some brochures, specialized dementia counseling, etc.” NO.6. Theme: “Decision results” After the decision is made, even though the outcome of the decision may not be the best decision for the family, they have made a tremendous effort and looked at a range of outcomes to find the most appropriate decision. There are three main themes in this section, Positive expectations, Conflict of views and nostalgia. Positive expectations Some family members said that while they provide positive emotions to the patient, the patient feels hopeful about the treatment. Therefore, they will accept all medical decisions that are beneficial to the patient and filled with hope for the future. “Although this disease is very difficult to cure, I feel that I just have to maintain my mother's current status so that her dementia does not progress. Then when there really comes a day when new drugs for dementia are researched and my mother can enjoy this level of medical treatment, then my mother's dementia will be cured.” NO.7. Conflict of views Family ties are an inevitable topic for the Chinese. Many family members who make decisions that they think is the best decision to inflict on the patient. However, the other carers do not agree with the final decision and thus there is a lot of disagreement. Some relatives argue that proxy decision-making should be centred on treating the illness. Other relatives believe that it is most important for the patients themselves to keep their dignity and meaning, rather than doing meaningless treatments. “There are two schools of thought in our family, one is that we should actively seek treatment and the other is that we should take them home if they can't be cured anyway” NO.4. nostalgia The Chinese have a tendency to return to their roots, so many people with dementia prefer to live at home rather than in a hospital. This makes many relatives hesitant to make decisions, as they are not sure whether better treatment can be provided at home. “My husband prefers to take care of himself at home because it feels more comfortable. But when something unusual happens, we struggle to decide what to do. Like last time when he kept vomiting after taking his medication—if we were at the hospital, the doctors could advise us, but now we’re just trying to figure things out on our own at home.” NO.6. Table 2 Sociodemographic characteristics of participants. Participant characteristics relatives of patients with dementia NO. age gender Work Marital status Duration of illness（month） Gender Age education Employment status Duration of care（month） Relation to patients 1 73 F Housewife Married 14 M 37 Associate Degree builder 3 Son 2 71 F Housewife Married 26 F 50 Junior secondary peasants 1 Son 3 62 M Worker Married 1 F 62 Senior Secondary Worker 24 Wife 4 77 M Retired Married 2 F 50 Bachelor statisticians 2 Daughter 5 25 M Retired Single 16 F 50 Senior Secondary freelancers 24 motherhood 6 62 M Unemployed Married 34 F 63 Junior secondary builder 24 Wife 7 85 M Retired Married 18 F 46 Bachelor company executives 16 Daughter 8 74 F Retired Married 36 F 48 Postgraduate Doctor 36 Son 9 60 F Worker Married 2 M 60 Junior Secondary unemployed 2 Husband 10 63 F Housewife Married 39 M 63 Senior Secondary freelance 36 Husband 11 60 F Housewife Married 2 M 60 Primary unemployed 30 Husband 12 66 M Retired Married 10 F 40 Bachelor Nursing 90 Daughter 13 60 M Unemployed Married 58 M 47 Bachelor Doctor 43 Daughter Table 3 Theme Theme Sub-theme Decision-making needs Reducing the burden of care economic needs Reduce negative emotions more resources Desire for respect Decision support The Responsibility of Kinship Healthcare worker support Social concern about the disease Decision results Positive expectations Divergence of care nostalgia DISCUSSION This study, which was the first to use the Ottawa Decisions Support Framework to examine characteristics related to family members of individuals with dementia making decisions by proxy, found three themes: (1) Decision-making needs (2) Decision support (3) Decision results. In a different cultural background, there are a distinctive perspective in surrogate decision-making in China. Many studies have reported on the various burdens of caring for people with dementia and the associated negative emotions [30], which is consistent with our study. Research has indicated that individuals with dementia commonly experience significant functional impairment and disability, leading to a reduced quality of life. Consequently, many require assistance with daily activities (ADLs) such as eating, bathing, and mobility. As a result, the caregiving process for these individuals becomes arduous and emotionally burdensome, often generating negative emotions [31]. Since 2009, the Chinese government has been implementing a health insurance policy, which provides for the reimbursement of 60-80% of inpatient expenses [32]. Nonetheless, the provision of long-term care for these patients can span several decades, imposing a substantial financial burden on families. Despite an increasing body of evidence, governmental and policy-level engagement remains limited [33]. Unfortunately, the selection of dementia diagnosis, care, and treatment services constitutes a primary aspect of medical proxy decision-making, which necessitates a certain level of knowledge and capability [34]. However, research has indicated that family members who are responsible for the care of patients in hospitals are typically individuals who have been unemployed for extended periods and possess limited educational backgrounds [35]. Their ability to retrieve relevant information about dementia is relatively weak, and their knowledge of the condition is insufficient. These factors significantly influence the judgment involved in making proxy decisions. Consequently, grounded in this perspective, numerous women perceive their role in the decision-making process as being undervalued, necessitating greater assistance and support compared to their male counterparts [36]. Our research predominantly uncovers a familial bond between Chinese family members acting as proxies and patients with dementia. In China, the concept of "family" is deeply rooted in cultural values, fostering an exceptionally strong connection among its members [37]. Thus, decision-makers are inclined to exert their utmost efforts in caring for their family members. Due to the familial bonds, proxy decision-makers possess a deeper understanding of the patient compared to healthcare professionals. Consequently, most decisions are tailored according to the patient's needs and previous habits, which aligns with findings from other studies [38]. Furthermore, we have observed that in Chinese culture, the family is regarded as a cohesive unit, and decision-making often involves the collective rather than the sole discretion of an individual. This holistic view of family serves as a bridge fostering mutual cooperation and understanding. Conversely, some patients with delegated decision-making responsibilities tend to seek support from healthcare professionals, while individuals with higher educational attainment are more inclined towards collaborative decision-making processes. These findings are corroborated by other studies [39, 40]. In addition to the support from families and healthcare professionals, society also provides assistance through policy and legislation, healthcare systems, and social services [41]. Regular assessments and guidance on cognitive functions for patients with dementia are conducted through nursing homes and integrated medical care facilities, which, where feasible, also implement screening, referral, and intervention services for the elderly's cognitive functions based on local conditions [42]. In summary, caring for an individual with dementia is a comprehensive and intricate process that necessitates essential surrounding support. Over the past 4000 years, China has been profoundly influenced by Confucianism, where filial piety and familial relationships are of paramount importance. Filial piety emphasizes that the younger generation has a responsibility to do everything possible to prolong the lives of their elders in order to maintain family integrity [43]. Consequently, while dementia remains incurable, the majority of participants expressed a willingness to embrace novel pharmacological treatments and engage proactively in therapeutic interventions. This sentiment resonates with China's unique cultural values. Furthermore, should they perceive that medical professionals, caregivers, or other staff are not delivering optimal care for individuals with dementia, they often advocate on behalf of these patients [39]. In summary, distinct from other studies [44], the relationship of familial bonds in China serves as a foundation for promoting all positive behaviors and outcomes [45]. Certainly, due to the complexity of diseases and the inconsistencies in individual perspectives and beliefs, the emphasis placed during the decision-making process varies, leading to differing outcomes. Certain family members assert their autonomy in decision-making, eschewing external guidance and counsel from other relatives. Nonetheless, upon the promulgation of the ultimate verdict, these decisions frequently encounter scrutiny and challenge from the broader familial network. Furthermore, a subset of relatives contend that the individual bearing the mantle of final proxy decision bears the onus for the ensuing trajectory of the patient's health condition. Should the patient's malady stagnate or deteriorate, the proxy decision-maker is subject to reproach by the collective kinship. Consequently, those primarily entrusted with the proxy decision-making role are often besieged by divergent caregiving philosophies among relatives or the weight of familial expectations, engendering discord in the decision-making process. The future development of dementia disease cannot be predicted due to the limitations of human knowledge and medical conditions. So the future impact of some of the decisions made now is also difficult to evaluate. It is certain that traditional Chinese values remain constant, with many surrogate decision-makers favoring the transport of patients to their homes for treatment. They perceive the family home as a place of ultimate belonging. This aligns with the concepts of filial piety and familial relationships discussed in our research. CONCLUSION In this study, we explored the factors associated with surrogate decision-making through the perspectives of family members of Chinese patients with dementia. Among them, traditional Chinese kinship served as the primary link between the facilitators of surrogate decision-making. This was because an individual's tastes, values, and goals tended to remain consistent over time, making decisions that depended on familiarity and kinship more reasonable to the surrogate. Further, we should have paid attention to differences in alternative decision-making, where a person's autonomy was preserved into the future even in situations where a person may have been perceived as unable to make the decision at hand. Thus, a basic respect for the individual and humanity would have required us to do more, namely, to pay attention to the impediments in the decision-making process. Some of the stresses and challenges mentioned in our study, as well as the influence of cultural factors, clearly influenced the surrogate's decision-making at all times, and how to go about choosing a maximally beneficial decision under the influence of these factors was even related to the personal characteristics of the decision-maker as well. In conclusion, future research should focus on the factors that impeded surrogate decision-making in individual families and on understanding the process motivations for participation in decision-making within families. Abbreviations ODSF Ottawa Decisions Support Framework Declarations Ethics approval and consent to participate This study was approved by the Bioethics Review Committee, Tangdu Hospital Fourth Military Medical University, (approval number K202405–22). All participants provided informed consent before the commencement of data collection. Consent for publication All participants provided informed consent for the anonymous publication of their submitted data in an academic research paper. Availability of data and materials According to the guidelines of our ethical approval, we are not disclosing data in order to safeguard the privacy of research participants since it could include information that could identify them. The datasets generated and/or analysed during the current study are not publicly available due [REASON WHY DATA ARE NOT PUBLIC] but are available from the corresponding author on reasonable request. Competing interests The authors hereby affirm that there are no conflicts of interest to declare. FUNDING This study was supported by the Nursing New Technology and New Business and the Neurology Department-Level Topics at the Second Affiliated Hospital of the Air Force Medical University (Re: 2021LCYJ040). Authors’ contributions Contributions from AP and XF included interview guidelines and helped design the research. Qualitative interviews were used by MQ and XF to gather information. The data was coded and provided to the codebook by XF In addition to writing the primary manuscript text and preparing all the figures, XF and MQ. conducted a theme analysis. The text was reviewed and significantly changed by all authors. ACKNOWLEDGEMENT The authors express their gratitude to everyone who took part in the interviews for voluntarily lending their time and expertise. Authors' information 1. Xi’an International University, Xi'an, China 2. Department of Neurology, Tangdu Hospital Fourth Military Medical University, Xi'an, China 3. 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Lethin C, Renom-Guiteras A, Zwakhalen S, Soto-Martin M, Saks K, Zabalegui A, Challis DJ, Nilsson C, Karlsson S: Psychological well-being over time among informal caregivers caring for persons with dementia living at home. Aging & mental health 2017, 21(11):1138-1146. Liu Z, Sun W, Chen H, Zhuang J, Wu B, Xu H, Li P, Chen X, Li J, Yin Y: Caregiver burden and its associated factors among family caregivers of persons with dementia in Shanghai, China: a cross-sectional study. BMJ open 2022, 12(5):e057817. Cheng ST: Dementia Caregiver Burden: a Research Update and Critical Analysis. Current psychiatry reports 2017, 19(9):64. Reckrey JM, Watman D, Perez S, Franzosa E, Ornstein KA, Tsui E: Paid Caregiving in Dementia Care Over Time: Paid Caregiver, Family Caregiver, and Geriatrician Perspectives. The Gerontologist 2024, 64(7). Xu EL, Watman D, Franzosa E, Perez S, Reckrey JM: Home Care Workers Providing Person-Centered Care to People With Dementia. Journal of applied gerontology : the official journal of the Southern Gerontological Society 2024, 43(11):1684-1693. Hynes C, Hodges VJ, Wyld L, Mitchell C: Cancer treatment decisions for people living with dementia: Experiences of family carers, a qualitative interview study. Health expectations : an international journal of public participation in health care and health policy 2022, 25(3):1131-1139. Sinclair C, Gersbach K, Hogan M, Blake M, Bucks R, Auret K, Clayton J, Stewart C, Field S, Radoslovich H et al : "A Real Bucket of Worms": Views of People Living with Dementia and Family Members on Supported Decision-Making. Journal of bioethical inquiry 2019, 16(4):587-608. Bogaerts JMK, Warmerdam LA, Achterberg WP, Gussekloo J, Poortvliet RKE: Proxy Decision-Making for Clinical Research in Nursing Home Residents with Dementia: A Qualitative Analysis. Journal of the American Medical Directors Association 2023, 24(4):541-547.e542. Geddis-Regan A, Errington L, Abley C, Wassall R, Exley C, Thomson R: Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions. Health expectations : an international journal of public participation in health care and health policy 2021, 24(1):19-32. Légaré F, O'Connor AM, Graham ID, Wells GA, Tremblay S: Impact of the Ottawa Decision Support Framework on the agreement and the difference between patients' and physicians' decisional conflict. Medical decision making : an international journal of the Society for Medical Decision Making 2006, 26(4):373-390. Hoefel L, O'Connor AM, Lewis KB, Boland L, Sikora L, Hu J, Stacey D: 20th Anniversary Update of the Ottawa Decision Support Framework Part 1: A Systematic Review of the Decisional Needs of People Making Health or Social Decisions. Medical decision making : an international journal of the Society for Medical Decision Making 2020, 40(5):555-581. Légaré F, O'Connor AC, Graham I, Saucier D, Côté L, Cauchon M, Paré L: Supporting patients facing difficult health care decisions: use of the Ottawa Decision Support Framework. Canadian family physician Medecin de famille canadien 2006, 52(4):476-477. O'Connor AM, Tugwell P, Wells GA, Elmslie T, Jolly E, Hollingworth G, McPherson R, Bunn H, Graham I, Drake E: A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Patient education and counseling 1998, 33(3):267-279. Tong A, Sainsbury P, Craig J: Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International journal for quality in health care : journal of the International Society for Quality in Health Care 2007, 19(6):349-357. Lindgren BM, Lundman B, Graneheim UH: Abstraction and interpretation during the qualitative content analysis process. International journal of nursing studies 2020, 108:103632. Tong A, Flemming K, McInnes E, Oliver S, Craig J: Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC medical research methodology 2012, 12:181. Cypress BS: Rigor or Reliability and Validity in Qualitative Research: Perspectives, Strategies, Reconceptualization, and Recommendations. Dimensions of critical care nursing : DCCN 2017, 36(4):253-263. Neubauer BE, Witkop CT, Varpio L: How phenomenology can help us learn from the experiences of others. Perspectives on medical education 2019, 8(2):90-97. Elo S, Kyngäs H: The qualitative content analysis process. Journal of advanced nursing 2008, 62(1):107-115. Johnson JL, Adkins D, Chauvin S: A Review of the Quality Indicators of Rigor in Qualitative Research. American journal of pharmaceutical education 2020, 84(1):7120. Peddle M: Maintaining reflexivity in qualitative nursing research. Nursing open 2022, 9(6):2908-2914. Stall NM, Kim SJ, Hardacre KA, Shah PS, Straus SE, Bronskill SE, Lix LM, Bell CM, Rochon PA: Association of Informal Caregiver Distress with Health Outcomes of Community-Dwelling Dementia Care Recipients: A Systematic Review. Journal of the American Geriatrics Society 2019, 67(3):609-617. Reuben DB, Romero T, Evertson LC, Jennings LA: Overwhelmed: a Dementia Caregiver Vital Sign. Journal of general internal medicine 2022, 37(10):2469-2474. Li M, Cecconi B, Gosseries O, Cheng L, Yan Y, Chen Y, Li Y, Laureys S, Di H: Exploring end-of-life decision-making in China for disorders of consciousness. Annals of medicine 2024, 56(1):2423794. Shirozhan S, Arsalani N, Seyed Bagher Maddah S, Mohammadi-Shahboulaghi F: Barriers and facilitators of rehabilitation nursing care for patients with disability in the rehabilitation hospital: A qualitative study. Frontiers in public health 2022, 10:931287. Lord K, Livingston G, Cooper C: A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia. International psychogeriatrics 2015, 27(8):1301-1312. Bouranis N, Gelmon S, Lindauer A: Ability and Willingness to Participate in Dementia Clinical Research: A Qualitative Study. The patient 2023, 16(3):277-285. Mitchell V: Ethical practice in dementia care. Nursing older people 2019, 31(2):40-47. Lyu Y, Xu Q, Liu J: Exploring the medical decision-making patterns and influencing factors among the general Chinese public: a binary logistic regression analysis. BMC public health 2024, 24(1):887. Fetherstonhaugh D, McAuliffe L, Bauer M, Shanley C: Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide? Journal of medical ethics 2017, 43(1):35-40. Fetherstonhaugh D, McAuliffe L, Shanley C, Bauer M, Beattie E: "Did I make the right decision?": The difficult and unpredictable journey of being a surrogate decision maker for a person living with dementia. Dementia (London, England) 2019, 18(5):1601-1614. Zarei S, Lakhanpal G, Sadavoy J: Tele-Mindfulness for Dementia's Family Caregivers: A Randomized Trial with a Usual Care Control Group. Current Alzheimer research 2022, 19(5):364-372. Sommerlad A, Kivimäki M, Larson EB, Röhr S, Shirai K, Singh-Manoux A, Livingston G: Social participation and risk of developing dementia. Nature aging 2023, 3(5):532-545. Zhou Y, Li Y, Zhu X, Ma L: Medical and Old-age Care Integration Model and Implementation of the Integrated Care of Older People (ICOPE) in China: Opportunities and Challenges. The journal of nutrition, health & aging 2021, 25(6):720-723. Li LB: Clinical review: Ethics and end-of-life care for critically ill patients in China. Critical care (London, England) 2013, 17(6):244. Backhaus R, Hoek LJM, de Vries E, van Haastregt JCM, Hamers JPH, Verbeek H: Interventions to foster family inclusion in nursing homes for people with dementia: a systematic review. BMC geriatrics 2020, 20(1):434. Petriwskyj A, Gibson A, Parker D, Banks S, Andrews S, Robinson A: A qualitative metasynthesis: family involvement in decision making for people with dementia in residential aged care. International journal of evidence-based healthcare 2014, 12(2):87-104. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5809923","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":402690159,"identity":"83084606-2671-4d21-8fb2-a02141922c2f","order_by":0,"name":"Xiangge Fan","email":"","orcid":"","institution":"Xi’an International University","correspondingAuthor":false,"prefix":"","firstName":"Xiangge","middleName":"","lastName":"Fan","suffix":""},{"id":402690160,"identity":"52a4c591-bcee-400d-a595-11c533f9d9b4","order_by":1,"name":"Ali Peng","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAwUlEQVRIiWNgGAWjYBACxobDBw4kVNTYsbE3EKmFufFY4oEHZ44l8/McIFILe/MZ44MP25gZZ85IIFILb9sBgwMJZ9iYDW4+3niDocYmmqAWyZ4DCUC/yPAZ3E4rtmA4lpbbQEiL4YwDByC23M4xkwAGBmEt9vcfNhxIBPplw80zRGoBKmIAa5k5g4doLccYgA4DBTLQLwnE+IWx4fznjz/AUXl4440PNTaEtSADA4kEUpRDtJCqYxSMglEwCkYGAAAoKEsbmteOhwAAAABJRU5ErkJggg==","orcid":"","institution":"Tangdu Hospital Fourth Military Medical University","correspondingAuthor":true,"prefix":"","firstName":"Ali","middleName":"","lastName":"Peng","suffix":""},{"id":402690162,"identity":"4501f8a4-0091-4653-bb48-3ffbb7fcedaa","order_by":2,"name":"Min Qi","email":"","orcid":"","institution":"Tangdu Hospital Fourth Military Medical University","correspondingAuthor":false,"prefix":"","firstName":"Min","middleName":"","lastName":"Qi","suffix":""},{"id":402690165,"identity":"ffe2761f-d1af-4086-b48c-c869d62e98a3","order_by":3,"name":"Juan Xu","email":"","orcid":"","institution":"Xi’an International University","correspondingAuthor":false,"prefix":"","firstName":"Juan","middleName":"","lastName":"Xu","suffix":""},{"id":402690166,"identity":"4f765c66-33bb-44cf-a4e7-58e33f5acde2","order_by":4,"name":"Dong Geng","email":"","orcid":"","institution":"Tangdu Hospital Fourth Military Medical University","correspondingAuthor":false,"prefix":"","firstName":"Dong","middleName":"","lastName":"Geng","suffix":""},{"id":402690167,"identity":"2d2d9aec-2050-4bdc-a842-f7392c320011","order_by":5,"name":"Congmin Zuo","email":"","orcid":"","institution":"Tangdu Hospital Fourth Military Medical University","correspondingAuthor":false,"prefix":"","firstName":"Congmin","middleName":"","lastName":"Zuo","suffix":""},{"id":402690168,"identity":"eea4449d-6621-486e-aff9-d6f752e4801a","order_by":6,"name":"Lijun Qian","email":"","orcid":"","institution":"Anhui University of Chinese Medicine","correspondingAuthor":false,"prefix":"","firstName":"Lijun","middleName":"","lastName":"Qian","suffix":""}],"badges":[],"createdAt":"2025-01-11 14:23:15","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-5809923/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5809923/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":85052314,"identity":"be1d2bd8-9e1b-41be-86c3-32fedc06e124","added_by":"auto","created_at":"2025-06-20 11:53:51","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":816414,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5809923/v1/b509312e-3216-4474-8b1f-4b2e6b387f3d.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"What influences healthcare surrogate decision-making among relatives of Chinese patients with dementia: a qualitative study based on the ODSF theory","fulltext":[{"header":"INTRODUCTION","content":"\u003cp\u003eA variety of cognitive and behavioral symptoms resulting from degenerative disorders of the central nervous system that impair memory, reasoning, behavior, and the capacity to carry out daily tasks are together referred to as dementia [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. The three phases of dementia progression\u0026mdash;the mild, moderate, and severe stages\u0026mdash;are frequently used to characterize its advancement. Patients with dementia frequently have sensory loss as the disease worsens and gradually lose their ability to think clearly, act appropriately, and speak [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. These impairments eventually interfere with day-to-day functioning and activities. The number of elderly persons suffering from dementia is rising worldwide. Currently, 50\u0026nbsp;million individuals suffer from dementia; by 2050, that number is predicted to rise to 152\u0026nbsp;million [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Chinese dementia sufferers make up over 25% of the global dementia population[\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e], which presents a significant challenge to policymakers, medical professionals, and family members [\u003cspan additionalcitationids=\"CR6\" citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eCaring for someone with dementia can be a difficult and time-consuming task [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Due to the complexity of the disease, many people with dementia suffer from a lack of abilities [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e] such as recurrent infections, dysphagia, incontinence and total dependency [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. As the disease progresses to stages II and III, the patient's decision-making ability is gradually lost, and other people need to be involved in the decision-making about the dementia patient's treatment and care in order to ensure that the dementia patient's care and treatment can continue [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. These people with advanced dementia are unable to advocate for themselves [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e], cannot reliably communicate symptoms, and are completely dependent on staff for all their care needs [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. Substitute decision-making is a term which has broadly been used to refer to the situation in which one person makes a decision on behalf of another [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. Surrogate decision makers are health agents who assist patients in making scientifically informed benefit-maximizing decisions, such as whether to get palliative care or symptomatic treatment. Surrogate decision makers in other countries include relatives such as the patient's spouse, parents, adult children, and siblings, as well as individuals authorized by legislation.\u003c/p\u003e \u003cp\u003eBecause Chinese Confucianism encourages harmonious family-centered decision-making, family members frequently assume the role of surrogate decision-maker. Many of the caregivers\u0026rsquo; beliefs, perceptions, and experiences are difficult to quantify because they are influenced by a varying degree of socio-cultural and traditional values, which may deeply influence the individual\u0026rsquo;s subjective perception of these values [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. Meanwhile, Modern healthcare is undeniably complex, frequently overwhelming patients and loved ones with high stakes and confusing medical decisions. Mistakes in decision-making can result in not just wasted resources, higher expenses, and ineffective interventions, but also patient suffering and caregiver anxiety if not properly navigated [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. So, the most popular theoretical framework for decision support is the Ottawa Decisions Support Framework (ODSF) [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. One of the significant contributions of ODSF is the identification of decision conflict as a key factor in decision-making, which involves making choices among a series of decision actions [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. Currently, it has been utilized to assess and address individuals' decision-making needs, particularly in the context of medical decisions [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. It is a practical, evidence-based theory that helps Surrogate decision makers make the optimal choices. Numerous patient decision assistance components have been successfully developed in various domains based on this approach [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAs dementia becomes more prevalent, more people will experience this difficulty. There is a paucity of study on the specific experiences of people with dementia who act as surrogate decision-makers. As a result, this study employed a qualitative research approach to investigate the influence of family members of people with dementia based on the ODSF theory in the process of surrogate decision-making.\u003c/p\u003e"},{"header":"PARTICIPANTS AND METHODS","content":"\u003cp\u003e\u003cstrong\u003eDesign and participants\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe design of the qualitative study was descriptive. The Guidelines for Reporting Qualitative Research were the foundation for the preparation of the current study (COREQ) [22]. To gain a comprehensive grasp of the study objectives, this qualitative investigation employed content analysis. Content analysis has long been used to provide evidence for a phenomenon.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eParticipants were recruited using a purposive sampling method to identify people who could answer relevant questions about agent decision-making with AD. The lead author, then a nursing in hospital, conducted 21 semi-structured interviews with relatives of patients with Alzheimer\u0026apos;s dementia (n=21). The participants included the family members (spouses, children, grandchildren, in-laws) of the patient living with AD from a tertiary-A hospital in China. The diagnostic criteria for dementia: (1) meeting the diagnostic criteria for Alzheimer\u0026apos;s disease in the 2018 Chinese Guidelines for the Diagnosis and Treatment of Dementia and Cognitive Impairment; (2) CDR scores ranging from 0.5 to 2; (3) cranial MRI suggestive of cerebral cortex and hippocampal atrophy; and (4) cerebrospinal fluid biomarker test results showing a decrease in A\u0026beta;1-42 and a significant increase in Tau protein. The inclusion criteria of relatives of patients with AD included: (1) Recent or previous involvement in proxy decision-making; (2) Care hours greater than or equal to 3 days; (3) speak Chinese; and (4) Willingness to participate in this study and sign an informed consent form.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData collection\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSemi-structured interviews were conducted, in-depth interviews between April 2024 and November 2024. At the beginning of the study, we set up a research group with seven nurses. The seven nurses have been engaged in the nursing of dementia patients for more than ten years and have rich clinical practice ability. We identified a number of interview questions through research group discussions and two pilot interviews. As the research continued to deepen, the interview outline was finally determined. Clinical trial number: not applicable.\u003c/p\u003e\n\u003cp\u003eEvery participant gave their informed consent before having their interviews used for study. To ensure that they remained anonymous, each participant was given an identification. During the interviews, participants were asked to describe their experiences of surrogate decision-making for people with dementia. Example questions from the final protocol were: Do you understand surrogate decision-making? What are some of the factors you consider when making decisions for patient agency? What help do you seek or what help do you need when making-decisions by proxy? What is the process like when making surrogate decisions for patients with dementia? How does decision making for people with dementia differ from the decisions you used to make yourself? What is your role in surrogate decision making? Interview guide for participants are described in table 1 below.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eBefore the interview, the interviewer was familiarized with the interview outline process, chose a quiet and comfortable environment during the interview, interacted with the interviewee, encouraged expression, and provided timely feedback and verification. All interviews were audio-recorded by a researcher and recorded at all times to observe changes in patients\u0026apos; speech and expressions. Interviews were conducted in a quiet conference room in the hospital to ensure that participants were not disturbed during the interview. On average, the interviews lasted approximately an hour.\u003c/p\u003e\n\u003cp\u003eTable 1 Interview guide for participants.\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\" style=\"width: 100%;\"\u003eInterview guide for participants\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003ePre-interview Checks\u003cbr\u003e\u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 76.1302%;\"\u003e\n \u003col\u003e\n \u003cli\u003eIntroducing the researcher, providing a brief overview of the study\u0026apos;s objectives, fill out the informed consent form and the demographic information questionnaire.\u003c/li\u003e\n \u003cli\u003eThank the participant for contributing.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eCheck the voice recording equipment is working.\u003c/li\u003e\n \u003c/ol\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003eSome background knowledge issues\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003ePlease tell us how well you know the disease\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eDo you understand the disease dementia?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eDo you understand some of the patient\u0026apos;s previous surrogate decisions?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eWhat healthcare decisions have you and your patients ever decided together? For example, treatment and medication decisions? Decisions about admission to the hospital?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eWhat is your pattern of getting along with each other How is your relationship?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eWhat memories do you have in common? Do you know him well enough?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eWhen a patient is faced with some medical decision, who is responsible for making that decision?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003eOpening questions\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003eTell us what you know about agent decision-making\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eWhat do you consider to be agency decision-making?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eWhat do you think the best agent decisions should look like?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eWhat do you think good agency decisions need to consider?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003eTell us about the experience of proxy decision-making\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eI hope you can say what are some of the agent decisions that have impressed you more?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eHopefully you can say what happened on the day of the proxy decision?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eWhat are some of the challenges involved in proxy decision-making for you?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eHow is it different from your previous decision-making process?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003eWhat factors influence your decision-making\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eBased on your previous experience, what factors contribute to your agency decisions?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eWhat or who has helped you make decisions by proxy?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eIn your experience, what are some of the obstacles or difficulties in the agency decision-making process?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eWhat role do other family members play in agency decisions?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 32.3689%;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 43.7613%;\"\u003eWhen making decisions for patient agency, what criteria do you refer to when making decisions?\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 23.8698%;\"\u003eClosing and thanks for participation\u003cbr\u003e\u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 76.1302%;\"\u003eThe interviewer should be patient in explaining any research questions that arose from the participants during the interview. After the interviews were completed, the relevant interview content was organized and participants were invited again to explain some of the more vague or ambiguous elements.\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eData analysis\u003c/p\u003e\n\u003cp\u003eInductive content analysis was chosen to collect data for this study, the next step is to organize the qualitative data [23]. This process includes open coding, creating categories and abstraction. The specific steps of the study are as follows. (1) The researcher reads the interview data repeatedly until researcher is very familiar with the overall content of the data. (2) Open coding is carried out, in which the researcher analyzes the data line by line and labels what is meaningful. (3) Categories are created, and similar or related codes are compared and categorized, and themes and sub-themes are gradually formed. (4) Themes, sub-themes, and codes are defined and some representative examples are extracted from the data. extract some representative examples.\u003c/p\u003e\n\u003cp\u003eMeanwhile, the researcher does not wait for all the data to be collected before analyzing the data, but rather, the data analysis is done in parallel with the collection of the data [24]. The researcher is not prohibited from using deductive logic to formulate a preliminary or embryonic theory from the limited data and use it to guide the subsequent data collection, even though the information is not yet complete [25]. The embryonic idea is put to the test by the evidence that is later collected. Once a theory is formulated, the researcher may identify the features that need to be included to support it. Consequently, the subsequent data collection was intentionally designed to capture the missing information. The idea was subsequently expanded in accordance with the facts that followed, if it is confirmed. If the information acquired later contradicts the previously presented prototype hypothesis, the theory is revised. When there is disagreement with the previously provided prototype theory, the theory is updated and utilized to guide subsequent data collecting [26]. This technique is repeated until theory saturation is reached. Theory saturation means that the theory\u0026apos;s dimensions have been exhausted and no additional dimensions can be discovered [27].\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eRigor or techniques to enhance trustworthiness \u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn order to ensure the credibility, reliability and rigor of the study [28]. To guarantee sample richness and variety, this study first implemented the maximum differentiation principle in sampling. The researchers possessed a multifaceted understanding of the phenomena because, as clinical frontline caregivers, they had regular interactions and observations with dementia patients and their families over an extended period of time. Third, two researchers meticulously transcribed the interview transcripts, and a third researcher double-checked and authenticated the work. Fourth, in order to determine whether information existed that the researcher alone could not have known, impartial peers who were not involved in the study examined or debated the technique, conclusions, and research design. Fifth, in order to limit the impact of our own thinking, study questions and probes were planned to be as neutral and open-ended as possible in order to prevent \u0026quot;leading the witness\u0026quot; with our point of view [29].\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBefore the interview, participants were informed of our study purpose, voluntary participation, and confidentiality. Participants were given adequate explanations about the research goal, interview techniques, information confidentiality, and the right to take part or withdraw from the study at the start of each interview. Following from the above that, the participants completed an informed consent form based on the Helsinki Convention. Furthermore, the researcher told the participants that all interview information would be kept confidential and that audio and text files would be preserved on an encrypted document. The interview transcripts were prepared in an anonymized manner. This study was approved by the Bioethics Review Committee, Tangdu Hospital Fourth Military Medical University, (approval number K202405\u0026ndash;22).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eParticipant characteristics\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn the end, thirteen family members finished the interviews. The interviews with each participant lasted anything from forty to ninety minutes. The average age of the dementia patients was 65. Of those afflicted with dementia, 46% were women and 54% were males. Only one of the thirteen dementia patients was unmarried. The average age of the caretakers was 52 years old. Men made up 54% of the caretakers, while women made up 46%. In addition, the several basic demographic traits of dementia patients and their family is provided (Table 2). To protect patients\u0026apos; privacy, the interviews were coded as\u0026nbsp;\u003cem\u003eNO.1\u003c/em\u003e~\u003cem\u003e\u0026nbsp;NO.13\u003c/em\u003e.\u003c/p\u003e"},{"header":"RESULTS","content":"\u003cp\u003e\u003cstrong\u003eParticipants\u0026rsquo;characteristics\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe interviewed with 13 Chinese relatives who varied in their age, gender, and level of education in relation to the patient, as well as their perceptions about surrogate decision-making. 38 percent of these were male relatives, while 62 percent were female relations. Eight people, or 62% of the total, had been providing care for more than or equivalent to a year. The 13 relatives are described in detail in table 2. Following data analysis, three themes and 10 sub-themes were ultimately summarized in this study. The key thematic findings are summarized (Table 3).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme: \u0026ldquo;Decision-making needs\u0026rdquo;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis category includes the sub-categories of Reducing the burden of care, economic needs Reduce negative emotions, More resources and Desire for respect. The invisible bond of affection that connects patients to their families leads to a sense of responsibility and mission among the families. Indeed, the love and expectation of the relatives for the patient as a result of their kinship is one of the important factors in the decision-making of family agency.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eReducing the burden of care\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003ePatients in the later stages of dementia require family members to take turns to care for them, and the burden of care is heavy. As a result, much of the proxy decision-making process is often carried out under heavy stress. Some relatives report that they are unable to make rational decisions in hectic modern lives.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I have to feed my patient every day, help her go to the bathroom, take her out to exercise, and it feels like there\u0026apos;s no free time in my life. So basically making decisions can be rushed because I don\u0026apos;t have time to think too much.\u0026rdquo; NO.6.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eeconomic needs\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDementia patients take a long time to be treated, and the cost of medical treatment and care places a burden on family finances. As a result, treatment for dementia patients is reduced or even neglected in time of financial hardship.\u003c/p\u003e\n\u003cp\u003e\u0026ldquo;Dementia diseases take so long to treat that we can\u0026apos;t afford the high cost of medicine.\u0026rdquo; \u003cem\u003eNO.2.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eReduce negative emotions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn the initial stages of developing dementia, family members are usually told about the incurable nature of the dementia disease. As a result they can have their judgement clouded by this negativity during the treatment process, as well as having a negative impact on their decision-making.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I would read a lot of messages from the internet about the incurability of this disease. These negative messages signaled that whatever decision I made would do nothing for my wife\u0026apos;s disease\u0026rdquo; NO.3.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMore resources\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDue to the incurable nature and slow progression of dementia, it requires a patient to be in the midst of such a chronic disease for a long period of time. However, during the interviews, many patients and their families were not aware of some of the specialized knowledge related to the disease, so that they could not make accurate decisions. In order to make better proxy decisions, families say they actively seek out healthcare facilities. However, large hospitals in China currently limit the number of days of hospitalization, and elderly care facilities are scarce and do not provide adequate care. Limited resources are often an issue that families have to consider when making decisions.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Large hospitals don\u0026apos;t let us stay in the hospital for long periods of time, and patients need a lot of rehab equipment to support their rehabilitation exercises.\u0026rdquo; NO.10.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I didn\u0026apos;t know if I should continue to go to treatment or if I should give up, I had no idea about the disease or what the future should hold for the patient.\u0026rdquo; NO.6.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDesire for respect\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn the traditional cultural concepts of Chinese society, men often represent the decision-making power in the family. There are even some relatives who, despite being involved in the patient\u0026apos;s care and decision-making, are often ignored for advice because their gender is female. A family member indicated that he or she had been caring for the patient for a long time, but his or her suggestions were not taken into account in the proxy decision-making process.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;As a woman, I felt like some of the advice I was giving would not be taken seriously at all, even though I was caring for patients for a long time.\u0026rdquo; NO.4.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme: \u0026ldquo;Decision support\u0026rdquo;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAccording to relatives, caring for someone with dementia is a comprehensive and complex process, and surrounding support is crucial. Subcategories of this category include: The Responsibility of Kinship, Healthcare worker support, and Social concern about the disease.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThe Responsibility of Kinship\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn most cases, family members are involved in the proxy decision-making process in China, with one of the family representatives making the final decision. The love, participation, understanding and support of the family members will make the proxy decision-making process warmer. At the same time, the decision maker\u0026apos;s feelings and responsibilities towards the person with dementia are stronger. Meanwhile, in traditional filial piety, carers believe that as relatives of the patient, they have responsibility to care for the patient. They believe that this sense of responsibility makes them feel fulfilled. At the same time, this sense of responsibility helps to develop values that promote positive decision-making.\u003c/p\u003e\n\u003cp\u003e\u0026ldquo;I\u0026apos;m the oldest child in the family, and I\u0026apos;m the one who takes care of my mom and dad at home, so I\u0026apos;m the one who makes the final decisions in our house, but I usually listen to the rest of the family as well.\u0026rdquo;\u003cem\u003e\u0026nbsp;NO.2.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;He is my father and I have a great responsibility to take care of him. If I don\u0026apos;t take care of him, who else is going to take care of him? We\u0026apos;re family, and I take care of him like he took care of me when I was a kid, and that\u0026apos;s a wonderful feeling.\u0026rdquo; NO.12.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eHealthcare worker support\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn hospitals, families are often at a loss in caring for their patients, and healthcare workers have specialised medical knowledge that is a major consideration in their decision-making process. Families of dementia\u0026rsquo;s patients say that the support of healthcare workers is very important to them. There are even some family members who follow the doctor\u0026apos;s advice completely.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I\u0026apos;m not very educated, I don\u0026apos;t know a lot of things, basically whatever the doctor says, and usually if we\u0026apos;re at home we don\u0026apos;t take anything else. It\u0026apos;s only when we\u0026apos;re in the hospital that we feel we have something to fall back on, because the doctors are more professional than us and put us more at ease.\u0026rdquo; NO.1.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSocial concern about the disease\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn China, the state has a medical chronic disease subsidy policy for dementia patients, which can reduce the financial pressure on families to a certain extent. Families indicate that they also receive some support on social media and public platforms. There are a lot of advices on the treatment of dementia patients and related knowledge about the disease on social media, which to a certain extent facilitate better decision-making by family members.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;People with dementia get some help in the community, such as some brochures, specialized dementia counseling, etc.\u0026rdquo; NO.6.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTheme: \u0026ldquo;Decision results\u0026rdquo;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAfter the decision is made, even though the outcome of the decision may not be the best decision for the family, they have made a tremendous effort and looked at a range of outcomes to find the most appropriate decision. There are three main themes in this section, Positive expectations, Conflict of views and nostalgia.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ePositive expectations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSome family members said that while they provide positive emotions to the patient, the patient feels hopeful about the treatment. Therefore, they will accept all medical decisions that are beneficial to the patient and filled with hope for the future.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Although this disease is very difficult to cure, I feel that I just have to maintain my mother\u0026apos;s current status so that her dementia does not progress. Then when there really comes a day when new drugs for dementia are researched and my mother can enjoy this level of medical treatment, then my mother\u0026apos;s dementia will be cured.\u0026rdquo; NO.7.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict of views\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFamily ties are an inevitable topic for the Chinese. Many family members who make decisions that they think is the best decision to inflict on the patient. However, the other carers do not agree with the final decision and thus there is a lot of disagreement. Some relatives argue that proxy decision-making should be centred on treating the illness. Other relatives believe that it is most important for the patients themselves to keep their dignity and meaning, rather than doing meaningless treatments.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;There are two schools of thought in our family, one is that we should actively seek treatment and the other is that we should take them home if they can\u0026apos;t be cured anyway\u0026rdquo; NO.4.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003enostalgia\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe Chinese have a tendency to return to their roots, so many people with dementia prefer to live at home rather than in a hospital. This makes many relatives hesitant to make decisions, as they are not sure whether better treatment can be provided at home.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;My husband prefers to take care of himself at home because it feels more comfortable. But when something unusual happens, we struggle to decide what to do. Like last time when he kept vomiting after taking his medication\u0026mdash;if we were at the hospital, the doctors could advise us, but now we\u0026rsquo;re just trying to figure things out on our own at home.\u0026rdquo; NO.6.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eTable 2 Sociodemographic characteristics of participants.\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"707\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd colspan=\"5\"\u003eParticipant characteristics\u003cbr\u003e\u003c/td\u003e\n \u003ctd colspan=\"6\"\u003erelatives of patients with dementia\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003eNO.\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eage\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003egender\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eWork\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarital status\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eDuration of illness（month）\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eGender\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eAge\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eeducation\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eEmployment status\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eDuration of care（month）\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eRelation to patients\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e1\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e73\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eHousewife\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarried\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e14\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eM\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e37\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eAssociate Degree\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003ebuilder\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e3\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eSon\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e2\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e71\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eHousewife\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarried\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e26\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e50\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eJunior secondary\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003epeasants\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e1\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eSon\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e3\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e62\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eM\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eWorker\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarried\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e1\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e62\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eSenior Secondary\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eWorker\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e24\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eWife\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e4\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e77\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eM\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eRetired\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarried\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e2\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e50\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eBachelor\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003estatisticians\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e2\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eDaughter\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e5\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e25\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eM\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eRetired\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eSingle\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e16\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e50\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eSenior Secondary\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003efreelancers\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e24\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003emotherhood\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e6\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e62\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eM\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eUnemployed\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarried\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e34\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e63\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eJunior secondary\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003ebuilder\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e24\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eWife\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e7\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e85\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eM\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eRetired\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarried\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e18\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e46\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eBachelor\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003ecompany executives\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e16\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eDaughter\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e8\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e74\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eRetired\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarried\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e36\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e48\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003ePostgraduate\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eDoctor\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e36\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eSon\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e9\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e60\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eWorker\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarried\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e2\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eM\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e60\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eJunior Secondary\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eunemployed\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e2\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eHusband\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e10\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e63\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eHousewife\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarried\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e39\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eM\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e63\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eSenior Secondary\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003efreelance\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e36\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eHusband\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e11\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e60\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eHousewife\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarried\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e2\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eM\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e60\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003ePrimary\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eunemployed\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e30\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eHusband\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e12\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e66\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eM\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eRetired\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarried\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e10\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eF\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e40\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eBachelor\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eNursing\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e90\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eDaughter\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e13\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e60\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eM\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eUnemployed\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eMarried\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e58\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eM\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e47\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eBachelor\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eDoctor\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e43\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003eDaughter\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eTable 3 Theme\u003c/p\u003e\n\u003cdiv align=\"center\"\u003e\n \u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"100%\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 42px;\"\u003eTheme\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003eSub-theme\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 42px;\"\u003eDecision-making needs\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003eReducing the burden of care\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 42px;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003eeconomic needs\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 42px;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003eReduce negative emotions\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 42px;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003emore resources\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 42px;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003eDesire for respect\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 42px;\"\u003eDecision support\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003eThe Responsibility of Kinship\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 42px;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003eHealthcare worker support\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 42px;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003eSocial concern about the disease\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 42px;\"\u003eDecision results\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003ePositive expectations\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 42px;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003eDivergence of care\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 42px;\"\u003e\u0026nbsp;\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003enostalgia\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n\u003c/div\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eThis study, which was the first to use the Ottawa Decisions Support Framework to examine characteristics related to family members of individuals with dementia making decisions by proxy, found three themes: (1) Decision-making needs (2) Decision support (3) Decision results.\u003c/p\u003e\n\u003cp\u003eIn a different cultural background, there are a distinctive perspective in surrogate decision-making in China. Many studies have reported on the various burdens of caring for people with dementia and the associated negative emotions [30], which is consistent with our study.\u0026nbsp;Research has indicated that individuals with dementia commonly experience significant functional impairment and disability, leading to a reduced quality of life. Consequently, many require assistance with daily activities (ADLs) such as eating, bathing, and mobility. As a result, the caregiving process for these individuals becomes arduous and emotionally burdensome, often generating negative emotions\u0026nbsp;[31]. Since 2009, the Chinese government has been implementing a health insurance policy, which provides for the reimbursement of 60-80% of inpatient expenses\u0026nbsp;[32]. Nonetheless, the provision of long-term care for these patients can span several decades, imposing a substantial financial burden on families. Despite an increasing body of evidence, governmental and policy-level engagement remains limited\u0026nbsp;[33].\u0026nbsp;Unfortunately, the selection of dementia diagnosis, care, and treatment services constitutes a primary aspect of medical proxy decision-making, which necessitates a certain level of knowledge and capability\u0026nbsp;[34]. However, research has indicated that family members who are responsible for the care of patients in hospitals are typically individuals who have been unemployed for extended periods and possess limited educational backgrounds [35]. Their ability to retrieve relevant information about dementia is relatively weak, and their knowledge of the condition is insufficient. These factors significantly influence the judgment involved in making proxy decisions.\u0026nbsp;Consequently, grounded in this perspective, numerous women perceive their role in the decision-making process as being undervalued, necessitating greater assistance and support compared to their male counterparts\u0026nbsp;[36].\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOur research predominantly uncovers a familial bond between Chinese family members acting as proxies and patients with dementia. In China, the concept of \u0026quot;family\u0026quot; is deeply rooted in cultural values, fostering an exceptionally strong connection among its members [37].\u0026nbsp;Thus, decision-makers are inclined to exert their utmost efforts in caring for their family members. Due to the familial bonds, proxy decision-makers possess a deeper understanding of the patient compared to healthcare professionals. Consequently, most decisions are tailored according to the patient\u0026apos;s needs and previous habits, which aligns with findings from other studies\u0026nbsp;[38].\u0026nbsp;Furthermore, we have observed that in Chinese culture, the family is regarded as a cohesive unit, and decision-making often involves the collective rather than the sole discretion of an individual. This holistic view of family serves as a bridge fostering mutual cooperation and understanding. Conversely, some patients with delegated decision-making responsibilities tend to seek support from healthcare professionals, while individuals with higher educational attainment are more inclined towards collaborative decision-making processes. These findings are corroborated by other studies\u0026nbsp;[39, 40]. In addition to the support from families and healthcare professionals, society also provides assistance through policy and legislation, healthcare systems, and social services\u0026nbsp;[41].\u0026nbsp;Regular assessments and guidance on cognitive functions for patients with dementia are conducted through nursing homes and integrated medical care facilities, which, where feasible, also implement screening, referral, and intervention services for the elderly\u0026apos;s cognitive functions based on local conditions\u0026nbsp;[42]. In summary, caring for an individual with dementia is a comprehensive and intricate process that necessitates essential surrounding support.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOver the past 4000 years, China has been profoundly influenced by Confucianism, where filial piety and familial relationships are of paramount importance. Filial piety emphasizes that the younger generation has a responsibility to do everything possible to prolong the lives of their elders in order to maintain family integrity [43]. Consequently, while dementia remains incurable, the majority of participants expressed a willingness to embrace novel pharmacological treatments and engage proactively in therapeutic interventions. This sentiment resonates with China\u0026apos;s unique cultural values. Furthermore, should they perceive that medical professionals, caregivers, or other staff are not delivering optimal care for individuals with dementia, they often advocate on behalf of these patients [39]. In summary, distinct from other studies [44], the relationship of familial bonds in China serves as a foundation for promoting all positive behaviors and outcomes [45]. Certainly, due to the complexity of diseases and the inconsistencies in individual perspectives and beliefs, the emphasis placed during the decision-making process varies, leading to differing outcomes. Certain family members assert their autonomy in decision-making, eschewing external guidance and counsel from other relatives. Nonetheless, upon the promulgation of the ultimate verdict, these decisions frequently encounter scrutiny and challenge from the broader familial network. Furthermore, a subset of relatives contend that the individual bearing the mantle of final proxy decision bears the onus for the ensuing trajectory of the patient\u0026apos;s health condition. Should the patient\u0026apos;s malady stagnate or deteriorate, the proxy decision-maker is subject to reproach by the collective kinship. Consequently, those primarily entrusted with the proxy decision-making role are often besieged by divergent caregiving philosophies among relatives or the weight of familial expectations, engendering discord in the decision-making process. The future development of dementia disease cannot be predicted due to the limitations of human knowledge and medical conditions. So the future impact of some of the decisions made now is also difficult to evaluate. It is certain that traditional Chinese values remain constant, with many surrogate decision-makers favoring the transport of patients to their homes for treatment. They perceive the family home as a place of ultimate belonging. This aligns with the concepts of filial piety and familial relationships discussed in our research.\u003c/p\u003e"},{"header":"CONCLUSION","content":"\u003cp\u003eIn this study, we explored the factors associated with surrogate decision-making through the perspectives of family members of Chinese patients with dementia. Among them, traditional Chinese kinship served as the primary link between the facilitators of surrogate decision-making. This was because an individual\u0026apos;s tastes, values, and goals tended to remain consistent over time, making decisions that depended on familiarity and kinship more reasonable to the surrogate. Further, we should have paid attention to differences in alternative decision-making, where a person\u0026apos;s autonomy was preserved into the future even in situations where a person may have been perceived as unable to make the decision at hand. Thus, a basic respect for the individual and humanity would have required us to do more, namely, to pay attention to the impediments in the decision-making process. Some of the stresses and challenges mentioned in our study, as well as the influence of cultural factors, clearly influenced the surrogate\u0026apos;s decision-making at all times, and how to go about choosing a maximally beneficial decision under the influence of these factors was even related to the personal characteristics of the decision-maker as well. In conclusion, future research should focus on the factors that impeded surrogate decision-making in individual families and on understanding the process motivations for participation in decision-making within families.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eODSF \u0026nbsp; \u0026nbsp; \u0026nbsp;Ottawa Decisions Support Framework\u0026nbsp;\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was approved by the Bioethics Review Committee, Tangdu Hospital Fourth Military Medical University, (approval number K202405\u0026ndash;22). All participants provided informed consent before the commencement of data collection.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll participants provided informed consent for the anonymous publication of their submitted data in an academic research paper.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAccording to the guidelines of our ethical approval, we are not disclosing data in order to safeguard the privacy of research participants since it could include information that could identify them. The datasets generated and/or analysed during the current study are not publicly available due [REASON WHY DATA ARE NOT PUBLIC] but are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors hereby affirm that there are no conflicts of interest to declare.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFUNDING\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was supported by the Nursing New Technology and New Business and the Neurology Department-Level Topics at the Second Affiliated Hospital of the Air Force Medical University (Re: 2021LCYJ040).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eContributions from AP and XF included interview guidelines and helped design the research. Qualitative interviews were used by MQ and XF to gather information. The data was coded and provided to the codebook by XF In addition to writing the primary manuscript text and preparing all the figures, XF and MQ. conducted a theme analysis. The text was reviewed and significantly changed by all authors.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eACKNOWLEDGEMENT\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors express their gratitude to everyone who took part in the interviews for voluntarily lending their time and expertise.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; information \u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e1. Xi\u0026rsquo;an International University, Xi\u0026apos;an, China\u003c/p\u003e\n\u003cp\u003e2. Department of Neurology, Tangdu Hospital Fourth Military Medical University, Xi\u0026apos;an, China\u003c/p\u003e\n\u003cp\u003e3. Anhui University of Chinese Medicine, Hefei, China\u003c/p\u003e\n\u003cp\u003eFirst author: Xiangge Fan \u0026nbsp; \u0026nbsp; \u0026nbsp;Email: [email protected] \u0026nbsp; ORCID: 0000-0002-5187-9129\u003c/p\u003e\n\u003cp\u003eCorrespondence to: Ali Peng \u0026nbsp; \u0026nbsp;Email: [email protected]\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eWilkins JM: Narrative Interest Standard: A Novel Approach to Surrogate Decision-Making for People With Dementia. \u003cem\u003eThe Gerontologist \u003c/em\u003e2018, 58(6):1016-1020.\u003c/li\u003e\n\u003cli\u003eConvey H, Holt J, Summers B: Proxy decision making and dementia: Using Construal Level Theory to analyse the thoughts of decision makers. \u003cem\u003eJournal of advanced nursing \u003c/em\u003e2018, 74(7):1712-1722.\u003c/li\u003e\n\u003cli\u003eBergman H, Borson S, Jessen F, Krolak-Salmon P, Pirani A, Rasmussen J, Rodrigo J, Taddeo D: Dementia and comorbidities in primary care: a scoping 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Medical and Old-age Care Integration Model and Implementation of the Integrated Care of Older People (ICOPE) in China: Opportunities and Challenges. \u003cem\u003eThe journal of nutrition, health \u0026amp; aging \u003c/em\u003e2021, 25(6):720-723.\u003c/li\u003e\n\u003cli\u003eLi LB: Clinical review: Ethics and end-of-life care for critically ill patients in China. \u003cem\u003eCritical care (London, England) \u003c/em\u003e2013, 17(6):244.\u003c/li\u003e\n\u003cli\u003eBackhaus R, Hoek LJM, de Vries E, van Haastregt JCM, Hamers JPH, Verbeek H: Interventions to foster family inclusion in nursing homes for people with dementia: a systematic review. \u003cem\u003eBMC geriatrics \u003c/em\u003e2020, 20(1):434.\u003c/li\u003e\n\u003cli\u003ePetriwskyj A, Gibson A, Parker D, Banks S, Andrews S, Robinson A: A qualitative metasynthesis: family involvement in decision making for people with dementia in residential aged care. \u003cem\u003eInternational journal of evidence-based healthcare \u003c/em\u003e2014, 12(2):87-104.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Alzheimer, surrogate, qualitative study, nursing, decision-making","lastPublishedDoi":"10.21203/rs.3.rs-5809923/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5809923/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCaring for someone with dementia can be a difficult and time-consuming task. Because Chinese Confucianism encourages harmonious family-centered decision-making, family members frequently assume the role of surrogate decision-maker. Mistakes in decision-making can result in not just wasted resources, higher expenses, and ineffective interventions, but also patient suffering and caregiver anxiety if not properly navigated. As a result, this study employed a qualitative research approach to investigate the variables of family members of people with dementia in the process of surrogate decision-making.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eTo gain a comprehensive grasp of the study objectives, this qualitative investigation employed content analysis. Semi-structured interviews were conducted. Inductive content analysis was chosen to collect data for this study, the next step is to organize the qualitative data. This process includes open coding, creating categories and abstraction.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFollowing data analysis, three overarching theme were identified. Following data analysis, three themes and 10 sub-themes were ultimately summarized in this study. The key thematic findings are summarized.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn this study, we explored the factors associated with surrogate decision-making through the perspectives of family members of Chinese patients with dementia. Among them, traditional Chinese kinship served as the primary link between the facilitators of surrogate decision-making. This was because an individual's tastes, values, and goals tended to remain consistent over time, making decisions that depended on familiarity and kinship more reasonable to the surrogate. Further, we should have paid attention to differences in alternative decision-making, where a person's autonomy was preserved into the future even in situations where a person may have been perceived as unable to make the decision at hand. Thus, a basic respect for the individual and humanity would have required us to do more, namely, to pay attention to the impediments in the decision-making process.\u003c/p\u003e","manuscriptTitle":"What influences healthcare surrogate decision-making among relatives of Chinese patients with dementia: a qualitative study based on the ODSF theory","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-01-17 15:35:14","doi":"10.21203/rs.3.rs-5809923/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"616743e3-1cbe-42ab-8eab-1ef7468bb5e2","owner":[],"postedDate":"January 17th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-06-20T11:53:42+00:00","versionOfRecord":[],"versionCreatedAt":"2025-01-17 15:35:14","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-5809923","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5809923","identity":"rs-5809923","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}