“I am not a good enough caregiver,and it is my fault”: The complex self-concept of Vietnamese female caregivers in dementia care

Abstract

In Vietnam, the majority of dementia caregivers are women. They play multiple social roles, confronting role conflicts, and caregiving burdens with insufficient social supports. Dementia caregiving alters their self-concepts, or who and how good they think they are. This secondary analysis study aims to explore self-concepts of Vietnamese female caregivers of people with dementia. In total, data of 21 face-to-face, semi-structured interviews, including six follow-up interviews, conducted with 13 Vietnamese female caregivers of people with dementia, were drawn from a larger study for analysis following the thematic coding procedure. Results showed that the self-concepts of female caregivers in dementia care were complex, contextualized, and manifested in different aspects. First, the guided self and the performed self emerged from the data as the key themes consistently shared by female caregivers. Their guided self was the self that their social norms and cultural traditions told them about who they should be, while their performed self was the self they demonstrated to the outside world. The mismatch between these two types of self (self-discrepancy) caused distress among caregivers. Second, caregivers’ self-concept was the combination of the three key types of the self: the moral self (a filial daughter or a responsible wife); the feminine self (a patient and graceful women); and the worthy self (a devoted and helpful caregiver). Understanding Vietnamese female caregivers’ self-concepts, self-discrepancy, and its impacts on their well-being can be used to inform the development of interventions and social services for this underserved group.

Keywords

vietnamese female caregivers dementia Alzheimer’s disease self-concept identity

Introduction

Dementia, a neurodegenerative terminal disease, is well-known for being one of the most difficult conditions that family caregivers have to cope with (Comer, 2015). Dementia progresses over time, predicting increasing care demands over the course of the disease. Depending on the type and stage of dementia, people with dementia live from three to 12 years after the diagnosis (Kua et al., 2014), and the average post-diagnosis life expectancy is 10 years (Development of a Life Expectancy Calculator for Alzheimer’s & Dementia, 2020). As a consequence, family caregivers often live with caregiving burden for an extended amount of time and struggle to maintain their caregiving role. In Vietnam, caregiving burdens in dementia care, such as financial hardship, time constraints, and reduced physical and mental health, altogether impact caregivers’ well-being and quality of life (Nguyen & Levkoff, 2020; Nguyen et al., 2018; Truong, 2015).

Caregiving burdens disproportionately affect women (Hughes et al., 2013). In a Confucianism-influenced society like Vietnam, caregiving for the older family members is considered women’s primary duty, in addition to other duties, such as raising children and contributing to their household income. Vietnamese female caregivers tend to provide long hours of hands-on care for their relatives with dementia, with at least 20 hours per week, and deal with stress stemming from family and workplace demands. As a result, female caregivers report more intense caregiving burdens, worse health outcome, and lower quality of life than their male counterparts (Truong, 2015). Although a body of literature has examined caregiving burdens and quality of life of Vietnamese female caregivers in dementia care (Nguyen et al., 2013; Nguyen et al., 2018; Truong, 2015), very little is known about how they perceive themselves and how their self-concept impacts their psychological well-being.

How female caregivers perceive themselves is shaped by their sociocultural context. The tradition of Confucianism, collectivist culture, and social norms in a socialist country significantly establishes a high standard for Vietnamese women (Drummond & Rydstrøm, 2004; Schuler et al., 2006). First, the Confucianism tradition sets a well-known “Three Obedience Rule” (Tam Tong) and “Four Virtues” (Tu Duc) for women, along with the values of filial piety and family harmony. “Three Obedience Rule” is a moral code for women, which asks them to be submissive to their father till marriage, to their husbands when married, and to their oldest son when their husbands decease (Schuler et al., 2006). “Four Virtues” refers to a set of four key qualities of Vietnamese women, including hard and good work, beautiful appearance, appropriate and nice speech, and dignified manners (Drummond & Rydstrøm, 2004). Second, the collectivist culture highlights the values of sacrifice and devotion to family among women that implicitly request them to always put their families ahead of them. Third, the socialist regime continues to place high expectations on women through their policies and public discourses. For example, the “Three Criteria Women Campaign,” a popular national campaign run by the Women’s Union, asks women to ‘‘study actively, work creatively, raise children well, and build happy families” (Schuler et al., 2006). Given the unique sociocultural context of Vietnamese female caregivers, it calls for studies on their self-concepts with regard to their culture and social norms.

This research is important for multiple reasons. First, this research focuses on caregiver self-concept, a nascent field in dementia caregiving. Self-concept defines people’s actions. How dementia caregivers perceive themselves potentially affects their own confidence, health outcomes, and well-being (Higgins, 1987; Lynch et al., 2009; Oyserman et al., 2012). Researchers argue that caregivers for relatives with chronic and terminal diseases tend to develop negative sense of self, such as feeling less confident, less capable of quality care provision, and also receiving insufficient social recognition from others (Moore & Gillespie, 2014). Understanding caregivers’ self-concept would yield practical implications for therapies and social services to support dementia caregivers (Lynch et al., 2009; Rogers & Kramer, 1995).

Second, this research particularly focuses on female caregivers and their own sociocultural context in Vietnam. Studies on caregivers’ self-concept need to take into consideration their specific sociocultural context because caregiver role is uniquely defined by caregivers’ culture, including their family’s subculture (Montgomery & Kosloski, 2013). Each ethnicity group establishes its own set of expectations and norms about caregiving and gender roles. Investigating Vietnamese female caregivers’ self-concepts in their context contributes to the knowledge about influences of culture and gender norms on individual sense of self in dementia caregiving.

Background

Self-concept has been discussed in psychology for decades (e.g., Baumeister, 1999; Higgins, 1987; 1989; Lynch et al., 2009; Oyserman et al., 2012; Rogers & Kramer, 1995). In short, self-concept is a complex cognitive structure consisting of “content, attitudes, and evaluative judgments” that a person uses to make sense of the outside world and identify personal goals and worth (Oyserman et al., 2012, pp. 72). Self-concept could be understood as one’s ideas or beliefs about oneself, including his or her personality attributes, such as hardworking and honest, or as a broader concept that may cover identity, and one’s multiple identities make up one’s self-concept (Baumeister, 1999).

Self-concept is manifested in different ways (Sabat & Harré, 1992; Sabat, 2002; Sabat & Collins, 1999). First, self-concept could be expressed through personal identity to indicate one’s perspectives (Sabat & Collins, 1999). Second, self-concept, referring to one’s “mental and physical attributes and related beliefs,” could be expressed through what a person is proud of, such as his or her pride in being independent (Sabat & Collins, 1999, pp. 16–17). Third, self-concept, as public personae, could be assessed by one’s presentation to the social world, such as a devoted spouse (Sabat & Collins, 1999).

In addition to different manifestations of self-concept, scholars have introduced multiple types or facets of self-concept, including (i) the actual self, (ii) the ideal self, and (iii) the ought self (Higgins, 1987, 1989; Lynch et al., 2009; Rogers & Kramer, 1995). The actual self refers to one’s representation of the attributes that that person or his/her significant ones believe that he/she actually has. The ideal self refers to one’s representation of the attributes that that person or someone else expects that he/she to ideally have. The ought self alludes one’s representation of the attributes that that person or someone else believes that he/she should or ought to have corresponding his/her roles, responsibilities, and duties (Higgins, 1987; Lynch et al., 2009; Rogers & Kramer, 1995).

Other types of self-concept have been identified. Close to the concept of the actual self, the concept of the performed self was introduced by Goffman decades ago. According to Goffman (1956), each individual wears different “masks” to perform accordingly to his/her social roles and contexts. The performance of the selected selves is intended to help a person to fit in his/her social situations and benefit others involved (Goffman, 2006). In addition, the spiritual self and the social self have been identified in the literature. The spiritual self focuses on moral and conscience aspects of a person, while the social self refers to that person’s worthiness judged by the society that he/she lives in (Higgins, 1987).

It is commonly accepted that people have different views of themselves, and the actual self and the ideal self often coexist within a person. The self-discrepancy theory (Higgins, 1987) emphasizes that there is often a gap between these two selves, referred to as self-conflict or self-inconsistency in the literature (Lynch et al., 2009). The larger the gap between people’s perceived actual self and ideal self, the more negative emotions (e.g., disappointment, dissatisfaction, and sadness) and the lower self-esteem they report (Higgins, 1987). As a consequence, self-discrepancy is negatively associated with people’s well-being (Lynch et al., 2009).

Although a large body of research has examined changes in the sense of self, such as the loss of self, of patients with chronic diseases (e.g., Charmaz, 1983, 1997), and people living with dementia (Caddell & Clare, 2010; Norberg, 2019; Walters et al., 2010), not much has been done with family caregivers of people living with dementia, particularly female caregivers in their own sociocultural context. Given that caregiving burdens alter the self of family caregivers and potentially affect their well-being, the need for studies on this topic becomes more pressing.

Research aims

The present study addresses the current knowledge gaps of how female caregivers perceive themselves, and how their self-concepts impact their psychological well-being, while considering the influence of the socialist- and Confucianism-oriented context in Vietnam. This study aims to

explore multifaceted self-concepts of Vietnamese female caregivers in dementia care;

investigate whether there exist self-discrepancies among multifaceted self-concepts and their influences on well-being of these female caregivers.

Method

Study design

The present study adopted the approach of post hoc or secondary analysis of qualitative data (Heaton, 2008), drawn from a larger study on primary family caregivers for people living with dementia conducted in a geriatric hospital in Vietnam. The larger study, named VCG17, originally aimed to investigate the psychological adjustment process of Vietnamese family caregivers in dementia care. The VCG17 study applied grounded theory method (Charmaz, 1997, 2014) on the dataset of 30 interviews, including 10 follow-up interviews, collected from 20 Vietnamese caregivers (seven male and 13 female participants). The key results of the VCG17 study were an emerging psychological adjustment process of caregivers of people living with dementia, consisting of four stages: (1) experience of illness and caregiving; (2) acknowledgment of caregiving demands, challenges, resources, and the self in caregiving; (3) experiment with caregiving tasks focused and self-perception–focused strategies; and (4) acceptance of the illness, caregiving situation, and role (Nguyen & Levkoff, 2020). During the data analysis of the VCG17 study, self-concept of caregivers emerged as a critical theme. The results also showed unique patterns of self-concept of female caregivers differently from male caregivers, leading to the study presented in this article, the VCG17-F study with its focus on self-concept of female caregivers.

The present VCG17-F study adopted supplementary analysis (Heaton, 2008) to conduct a more in-depth analysis of the emergent aspect of self-concept of the subsample of female caregivers that was partially addressed in the VCG17 study. For this aim, the data source of the VCG17-F study was limited to 21 interviews, including eight follow-up interviews, with 13 Vietnamese female family caregivers. Figure 1 summarizes the study flowchart.

Figure 1.

Study flowchart.

Ethical considerations

The VCG17 study protocol was granted the ethical approval by the Institutional Review Board of the university with which the researcher was affiliated and the permission to recruit participants and collect data by the Director Board of the hospital. The study protocol emphasized the procedures of elder abuse reporting and caregiver referring for those in need of health care and social services. These procedures were in line with Vietnam’s Law on the Elderly (valid since 2009). All participants signed an informed consent at the beginning of their first interviews. For each complete interview, a participant received a US$15 incentive. Only the researcher could access the data, including audio recordings and transcripts, stored in a password-protected computer.

Participants

Recruitment

Participants in the VCG17 study were recruited using purposive sampling (Guest et al., 2006). With the support of doctors and nurses, recruitment flyers were distributed to registered primary family caregivers of people clinically diagnosed with and receiving treatment for dementia at the hospital at the time of the study. Caregivers interested in participating in the study provided the researcher their phone numbers through the doctor of their relative with dementia. The researcher contacted them to explain the research aims and protocol and emphasized their rights to participate and withdraw from the study as they wish.

Participant characteristics

The sample in this VCG17-F study included 13 female family caregivers (aged 44–71 years) who provided primary, hands-on care for people (aged 59–84 years) clinically diagnosed with and receiving outpatient treatment for Alzheimer’s Disease in the Dementia Program at the hospital (Table 1). This government-funded program covers from a half to the whole medical cost for patients with health insurance. The sample of female caregivers was predominantly spouses (eight spouses, four daughters, and a daughter-in-law), with mixed education (six with a college degree and seven with lower educational background), and retired (nine retired and four were still working). Most of them lived with or nearby the people with dementia and spent approximately 7.2 hours providing direct care every day.

Table 1.

Participant characteristics (N = 13).

ID	Age, years	Education (highest degree/diploma)	Job	Marital status	Relationship with the patient (patient’s age)	No. people in household	Area (urban/rural)	Live with patient	No. average hours of caregiving/day	No. interview(s)
F1	56	Primary school	Farmer	Married	Spouse (59)	3	R	Y	6	2
F2	53	Secondary school	Retired	Married	Daughter (74)	6	R	Nearby	8	1
F3	71	High school	Retired	Married	Spouse (73)	6	U	Y	8	3
F4	64	Secondary school	Farmer	Married	Spouse (72)	2	R	Y	8	1
F5	60	College	Retired	Married	Spouse (62)	2	R	Y	8	1
F6	54	Secondary school	Housemaid	Separated	Daughter (80)	6	R	Y	8	1
F7	44	College	Officer	Married	Daughter (70)	8	U	Y	4.5	2
F8	56	Associate degree	Retired	Married	Spouse (60)	2	U	Y	8	1
F9	68	College	Retired	Married	Spouse (76)	2	U	Y	8	2
F10	68	Secondary school	Retired	Married	Spouse (70)	5	R	Y	8	3
F11	70	High school	Retired	Married	Spouse (78)	3	U	Y	8	2
F12	51	College	Retired	Married	Daughter (84)	4	U	Nearby	3	1
F13	59	College	Retired	Widowed	Daughter in law (78)	3	U	Y	8	1

Notes: ID: identification number; U: urban; R: rural; Y: yes; No.: number of.

Procedure

Data source

The data source of the present VCG17-F study consisted of two types of data: 21 interview transcripts of 13 female caregivers and memos, particularly those related to self-concept/the self of caregivers written during data collection and analysis in the larger VCG17 study. As the VCG17 study adopted the grounded theory method, over 7 months, data collection and preliminary data analysis were conducted iteratively. Participants, particularly long-term caregivers with rich stories of their life transitions and caregiving experiences, were invited to schedule follow-up interviews. In the subsample of female caregivers, six of them agreed to be interviewed one or two more times. All semi-structured, face-to-face interviews were conducted in Vietnamese at participant’s home or the hospital, depending on their preferences. A typical interview lasted for an hour. All interviews were audio recorded, transcribed verbatim, and audited to ensure that all the identification information was removed from the transcripts. The demographic characteristics of the participants were recorded separately in Excel for the purpose of data analysis only.

As the VCG17 study focused on the psychological adjustment process of family caregivers in dementia care, the original interview guide was designed toward this topic with mostly open-ended questions. The use of predominantly open-ended questions helped participants to open up about their diverse experiences, perceptions, and emotions stemming from daily caregiving for people living with dementia. Because of the open nature and flexible structure of the interviews, various topics and rich information were derived, which were not considered or predicted before the interviews. A body of the memos written during the ongoing data collection captured how participants perceived themselves, as well as their language to describe their self-concept. In follow-up interviews, interview questions were probed to further explore and clarify participants’ thoughts, including thoughts about their self-concept, and emotions.

Data analysis

Both interview transcripts of female caregivers and selected memos were used for data analysis. Transcripts were coded following an inductive thematic analysis procedure (Braun & Clarke, 2006), using the qualitative data analysis software MaxQDA12. This approach is appropriate for the present study because its data-driven nature allows the themes to be intrinsically derived and linked to the data instead of fitting them into a preexisting conceptual framework or researcher’s preconceptions (Braun & Clarke, 2006). Following the instruction for thematic analysis, the researcher revisited the audio records and transcripts multiple times and wrote the preliminary analytic memos before the coding process. The coding process consisted of (1) generating initial codes; (2) searching for themes; (3) reviewing themes; and (4) defining and naming themes (Braun & Clarke, 2006). In addition to transcript coding, memos related to caregivers’ self-concepts were sorted and used to guide theme reviewing and defining (Table 2). The comparing and composing the coding results with memos also helped refine the themes of different types of self-concepts which were derived from the data.

Table 2.

Examples of the analytic procedure.

Data segments from transcripts	Thematic coding procedure Braun and Clarke (2006)
Data segments from transcripts	(1) Generating initial codes	(2) Searching for themes	(3) Reviewing themes (using excerpts from memos of the author)	(4) Defining and naming themes
I was a role model for being a great wife and a mother, but now I turn into this.	Ideal image of the self. Change in self-concept.	Ideal self. Self-discrepancy	There is often a mismatch between what caregivers expected to show and what they could actually demonstrate.	Guided self Self-discrepancy
It is the matter of doing your filial duty to your parents. It is about our morality. It is not a business that you can quit when you are tired of it.	Filial piety	Moral self	Family-oriented values (filial piety) and gender-based roles built by family and society establish caregivers’ standards of morality and their images of the moral self.	Moral self.
My husband is too sick, so I try to work even harder. I could not visit my own parents when they were sick. My siblings complained that I did not care about our parents, I just cared about my husband…	Multiple roles. Role conflict	All-in-one women	Most participants played multiple roles and took care of different people in the extended family at the same time. They were expected to do well in all roles. Gender-based stereotypes were commonly shared among participants: “Because I am a women/wife/daughter/mother/grandmother.” [It seems common in the Vietnamese culture. Because you are a woman, do you have to take care of everyone else in the family?].	Feminine self
When we participate in the clan’s meetings, people still listen to him because he is a man. But I always stay behind him and back him up. I think he is not at the right mind to make decision anymore, so I need to be there for him. But I have to be cautious, otherwise he will say: “You are just a woman.”	Acting “womanly”	Womanly self (being patient, graceful, and gentle)	Most female caregivers try to watch their speech and save the face of the people living with dementia, especially when the people with dementia were their father or husband. This is consistent with their regular acts before the diagnosis of dementia. They were taught from the young age of how to act womanly [I am in a much younger generation compared to them, but I was taught the same way not only at home but also at school.].	Feminine self.
It is just my personality. I honestly do not want to bother my children. I try as much as I can (to take care of the husband). I am the person who does not want to bother anyone or become a burden to anyone.	Independence oriented	Independent and autonomous	Most participants, particularly older ones, emphasized the value of independence and autonomy. These values seem very important to them as they associated them with their pride and worth.	Worthy self

Reflexivity

The researcher, who conducted data collection and analysis in the VCG17 study and secondary analysis in the VCG17-F study, was born and raised in Vietnam, and later received her doctoral training in social work in the United States (US). During her upbringing in Vietnam, she was taught about the socially accepted values and standards of a Vietnamese woman, such as the Four Virtues and self-sacrifice for family and others. Her higher education and life experiences in the US helped her approach these values and standards from different angles, such as the feminist view. She reflected her analysis from both emic view (as a Vietnamese woman who shared the same culture with studied participants) and etic view (as a Western trained scholar) in her reflective memos and revisited them during the data analysis and synthesis process. For example, the researcher reflected on the expectation of “acting womanly” shared by multiple participants when talking to and taking care of their relatives. The researcher acknowledged that she was taught to behave in the same way in her family and at school. This acknowledgment reminded her not to overlook the influence of the cultural context in her analysis, especially when she was familiar with it (Table 2). In other words, this helped her raise awareness of her own assumptions about the study results and avoid cultural bias toward participants’ experiences and discourses.

Findings

The results of the study show that the self-concepts of Vietnamese female caregivers in the context of dementia care are complex and contextualized. Participants showed multiple senses of self when they undertook the role of primary caregivers for people living with dementia. Figure 2 illustrates the matrix of the self-concepts of Vietnamese female caregivers from different aspects. From aspect 1 (axis 1/the horizontal axis), self-concepts of these female caregivers were the outcome of the interactions and transactions between the guided self and the performed self. From aspect 2 (axis 2/the vertical axis), their self-concept was the combination of three key types of the self: (1) the moral self, (2) the feminine self, and (3) the worthy self. All aspects of the moral self, feminine self, and worthy self were displayed in the guided self and expected to be transferred to the performed self. Each caregiver tried to perform the self they expected (being moral, feminine, and worthy), evaluated, and judged their performance on a scale running from dissatisfaction (e.g., being irresponsible, incompetent, and unhelpful) to satisfaction with the standards they set for themselves (e.g., being responsible, competent, and helpful).

Figure 2.

Matrix of the self-concept of Vietnamese female caregivers.

Aspect 1: The “guided self” versus the “performed self”

In the first aspect, Vietnamese female caregivers showed two types of senses of self: the guided self and the performed self. The guided self was the outcome of an internal process in which each caregiver assessed her grounded cultural values, family ethos, and social norms in her community to build a set of the desirable self (the moral, feminine, and worthy selves) she would like to pursue and become. The guided self directed caregivers’ beliefs and behaviors to fit the standards of what they deemed to be a good female caregiver, such as a moral, feminine, and worthy caregiver for their relative with dementia. On the other hand, the performed self referred to the figures they showed the outside world about, for example, how moral, feminine, and worthy they were or they perceived others to view them. The performed self was the outcome of the interaction between caregiver’s belief in her desirable self (the guided self), her actual abilities, and other external factors in her environment, such as her social supports and healthcare service provision for her relative with dementia.

The guided self reflected the belief of who a participant thought she should have been, such as a devoted spousal caregiver to her husband with dementia, while the performed self reflected how successful she felt she was in demonstrating these attributes to the world. A gap was noticed between the guided self and the performed self (self-discrepancy), although the extent of this gap was different across the sample of caregivers. For some, the gap was seen as narrow:

I am proud of, confident, and happy with my caregiving because my husband is getting better. People in my village praise me: “You are so busy, and your husband is so sick, but you never complain. You never say anything bad about him behind his back.” (F1)

People agree that I am competent and resourceful, because I take such a good care of my husband. Everyone who knew me said that, even the doctors at the hospital. They told me that despite his dementia, I still could take a good care of him for the past 10 years to keep him in a good condition, that means I am a very good caregiver. (F5)

In other cases, the observed gap between the guided self and the performed self was wider, leading to not only negative emotions, but also low self-efficacy in caregivers: “I am not confident (about caregiving) at all. Confident about what? I am too tired, I do not even know if there is anything for me to be confident about.” (F13). Another caregiver shared similar feelings:

It is not easy to take care of three older people in the family. My father and father-in-law both have Alzheimer’s Disease, and my grandmother has another chronic condition. Every week, my husband drives me to each of their houses to visit and check on them. He just drives, I take care of everything else. I try my best to take the best care of all of them and hope that there will be no complaints from other family members, but it is really not easy. My husband and I text each other about everything very often. Just a few days ago, I was busy with an event at work, and I did not check my phone to reply back to him within a few hours. Then he texted me: “It seems like you want to have fun now and forget about other things.” I have been silent since then. I have been through a lot in life. I do not want to explain for myself anymore. If it was like before, even if I was not wrong, I always apologized to people. Now I am really tired. People are so used to having me satisfied whatever they want. They take it for granted. (F7)

While the guided self did not seem to change much, the performed self tended to change over time. As a result, the gap in the self-discrepancy might become even wider, leading to more distress for caregivers. A spousal caregiver reflected upon the changes in her sense of self over her lifetime:

When I was younger, whenever people talked about me, they said they never saw any woman who could take such a good care of her family like me. My husband’s coworkers said I was such a devoted wife, because I took care of everything, making good amount of money, buying our houses, guiding my sons’ studying and careers, and still being caring and endearing to my husband and sons. But since my husband started showing dementia symptoms about 10 years ago, things have changed. Now my neighbors said that I have had bad attitude to my husband, because I raised my voice to him sometimes when he accidentally had bowel movement and did not let me clean and bathe him. I told myself not to care about what they said, but still… [coughing and crying]. I was resentful when people talked behind my back like that. I do not want to become that kind of nasty women, but I cannot explain myself to them. I am so mad sometimes. I cry and even scream and curse. I was a role model for being a great wife and a mother, but now I turn into this. (F5)

The guided self and performed self were subjective, and they might or might not reflect exactly how other people thought about and evaluated the caregivers. For example, some caregivers blamed themselves for “not doing enough” or “not doing well enough” or “not being patient and gentle enough” to the people living with dementia, although their families praised them for their time and efforts with the people with dementia. In this case, there was a discrepancy between the performed self version perceived by caregivers and the version perceived by their families. The perceived mismatch between different versions of the performed self, as well as between the guided self (the person the caregiver expected to become) and the performed self (the person the caregiver believed they showed to other people) often caused distress among female caregivers. The spousal caregiver (F5) mentioned above revealed negative emotions, such as being resentful and mad, regarding how she failed to be “a devoted woman” and eventually became “a nasty woman” after caring for her husband with advanced dementia for more than 10 years.

Aspect 2: The moral, feminine, and worthy selves

The moral self

All female caregivers participating in this study associated their role of primary caregivers with their moral standard, which reflected their cultural values rooted in the Confucianism traditions. The moral self of female caregivers in this study was projected as a filial daughter/daughter-in-law or a responsible, grateful wife, which was developed based on the core values of filial piety for children and affection and gratitude for spouses in the Vietnamese society. This moral self guided them to take on and maintain the role of a primary caregiver despite the hardship of long-term caregiving.

A filial daughter/daughter-in-law

Adult child caregivers in this study highly emphasized the traditional value of “filial piety” (đạo hiếu). Confucianism’s concept of filial piety shapes the values of love, compassion, and sacrifice between children and parents (Braun et al., 1996). As daughters in the family, participants of the study were educated from a young age about their “responsibility/obligation” (trách nhiệm/nghĩa vụ) for respecting and taking care of their parents, particularly when they became older and sick. To these female caregivers, taking care of their parents with dementia was the way to “pay back” for the love and sacrifices they received from their parents when they were younger. A daughter-caregiver commented on the meaning of caregiving to her:

It (caregiving) is really meaningful to me. I remember what my father had done for me. What I have done for him now is nothing compared to that. It is the love between father and his children… My father had taken care of me and my siblings from the tiniest things since we were small… Even when I was pregnant and gave birth, my father still took care of me. That is why I think if my father did not mind that he was a man and still took care of me at those times, why cannot I take care of him? (F7).

Another participant, also taking care of her mother-in-law with advanced dementia to fulfill the moral standard of a filial daughter-in-law, found it challenging to maintain the performance of a daughter-in-law caregiver. She described her caregiving as “tiring” and “desperate,” yet she could not quit: “It is the matter of doing your filial duty to your parents. It is about our morality. It is not a business that you can quit when you are tired of it.” (F13). This caregiver and others associated filial piety with “conscience” (lương tâm), “morality” (đạo đức), and “role modeling” (làm gương) for other people in the family, despite their exhaustion. All these values contributed to develop her self-concept as a caregiver:

I told all my sisters-in-law that they could not do anything if I did not take care of their mother. I am just a daughter-in-law. I take care of my mother-in-law because of my morality, my heart, not because of what people may say about me. This is the first reason. The second reason, I want to be a role model for my children. I hope they look at me and learn by their hearts of how to take care of their parents, parents-in-law, and spouses in the future. (F13)

A responsible and grateful wife

Profoundly rooted in the Vietnamese traditional culture, all the spousal caregivers in the study rationalized their caregiving role using the key values of “affection/love and gratitude” (tình nghĩa). “Tình nghĩa,” a combination of two different words, “tình” (affection/love) and “nghĩa” (gratitude), was considered the two moral pillars upholding marriage in Vietnamese families. “Tình” (affection/love) referred to the mutual love and affection developed between husband and wife. This word reflected the emotional aspect of a marital relationship. “Nghĩa” (gratitude), on the other hand, reflected the conscience aspect, or the gratitude, of a man/woman to his/her spouse for being devoted to their marriage and family. “Nghĩa” (gratitude) also conveyed the meaning of “paying it back” for the love and support a person received from his/her partner. A participant shared:

I think it (caregiving) is all about love and gratitude. Since we started living together, he has been so good to me… He devoted his life to me, our children, and grandchildren. I think no one wants to have this disease (Alzheimer’s Disease), and no one can ever predict it. It is just a bad luck. So I have to take care of him… I must treat him well to have my mind in peace. I cannot quit (caregiving). (F11)

While affection and gratitude were considered the two moral foundations upholding Vietnamese families, gratitude was considered more important than affection in marriage. Vietnamese people believed that along the long ride of a marriage, romantic chemistry between husband and wife would be faded eventually, but gratitude helped stick the family together. Agreed upon this belief, all spousal caregivers in the study shared that gratitude, rather than affection, was the fundamental value motivating them to endure the hardship of their caregiving duty. Caregivers taking care of their spouses at the advanced stage of dementia had to deal with the frustration of not only caregiving demands but also their relationship changes. Many of them were struggling with their spouses’ cognitive impairment, irritating behaviors, and dependence in activities of daily living (ADLs). Participants gradually lost the sense of intimacy with their spouses affected by dementia. Only gratitude kept them going with their caregiving duty, as a participant noted: “(I keep taking care of him) only because of gratitude, I have no intimate feelings for him anymore” (F3). To these spousal caregivers, gratitude was considered an attribute to their morality.

The feminine self

As Vietnamese women, participants in this study consistently developed their feminine sense of self. This feminine self-concept was also applied in their caregiving.

An all-in-one woman

Dementia caregiving is a demanding job, particularly for participants who were long-term caregivers of a person living with dementia. They revealed that they often had to play different roles to meet the needs of people with dementia. A spousal caregiver labeled herself as “a doctor, a wife, and a housemaid” for her husband with late dementia. She described her busy daily routine of providing medical care for her husband, vigilantly watching him, frequently cleaning after his “toilet accidents” around the house, and “sweet-talking” to him while helping him with his ADLs. In other words, results from this study show that the caregiver role was roles-nested-in-role to all participants.

Along with the role of a primary caregiver for the relative with dementia, female caregivers in this study undertook other roles in their families, such as wife, daughter, daughter-in-law, mother, and sister. Outside the family, many participants also performed the role of state employee, community volunteer, and so on. Each social role participants undertook was associated with specific expectations, such as a good, filial daughter, or a devoted wife and mother. Managing multiple social roles at the same time and trying to meet the social expectations associated with each role tended to lead to role conflicts, burdens, and sometimes burnouts among female caregivers:

My husband is too sick, so I try to work even harder. I could not visit my own parents when they were sick. My siblings complained that I did not care about our parents, I just cared about my husband. Having a sick husband is tough and there are so many things for me to take care of. While I can take care of him, I do not have time for my own parents… Of course, I am tired, very tired. I do not want to get up sometimes. (F1)

I have another house in another town. There was a storm and the house was damaged, so I have to go there to fix it. I want to take care of my mother-in-law too, but I cannot hire any maid at this time. I asked my sisters-in-law, but they refused to help me. So I have to go back and forth. It is tiring. It is exhausting. (F13)

Despite the intense role conflicts and demands, female caregivers in this study tried to fulfill the role expectations to the greatest extent, as they associated their role fulfillment with who they were. For example, a 44-year-old female participant was working full time as a public sector officer, running her private clinic after work, and taking care of both her father and father-in-law with Alzheimer’s disease, and a grandmother with other chronic diseases, besides her roles as a wife and a mother. She took care of her father at home and commuted to different provinces to check on her father-in-law and grandmother every week. She confronted not only intensive workload and tight schedule with 4–5 h of sleep every day but also critical role demands and conflicts in order to “avoid any complaint” from other relatives. The conflict came from not only playing multiple roles at the same times, including the roles-nested-in-role of a primary caregiver, but also the expectation of doing the best at every role. This caregiver, as others in the study, reported health deterioration associated with stress after undertaking the caregiver role:

I have to plan when to visit my father, father-in-law, and grandmother, depending on my work schedules. I also have to prepare about how to talk to each of them, because they have different conditions. In addition to my job, I have to learn how to adapt my care plans for all three people. If I do not take care of myself, I am afraid I will get Alzheimer’s Disease like them someday. I am also afraid of receiving phone calls from other relatives about them when something happens. That would be very tiring. Besides, I participate in a lot of social organizations and still run my clinic at home. Sometimes, I want to stop, but I cannot. Patients call me, they need me, I just cannot say no to them. In the past three to four months, I have had no dinner at home. Even when I could, my dinner would be around 1 or 2 am. I often go to bed very late, and get up around 5 am. My sleeping has been seriously affected for a long time. There are too many things to take care of. (F7)

A patient, graceful, and gentle woman

The results revealed the guided self of participants in this study as not only an “all-in-one” woman but also as a womanly woman, which means being patient, graceful, and gentle, when providing care to their relatives with dementia. In the patriarchal society of Vietnam, participants learned to maintain their gender-based manners even in dementia caregiving. They acknowledged the severity of their relatives’ cognitive decline but played the supporting role for those male relatives in the situations that required decision-making. A spousal caregiver commented:

When we participate in the clan’s meetings, people still listen to him, because he is a man. But I always stay behind him and back him up. I think he is not at the right mind to make decision anymore, so I need to be there for him. But I have to be cautious, otherwise he will say: “You are just a woman.” (F9)

The adjectives “patient,” “graceful,” and “gentle” were common themes that directly emerged from participants’ discourses when they discussed their own expectations of their caregiving activities. Most of the participants shared that they wished they had been more patient, more graceful, and gentle to the people living with dementia. These adjectives fit the typical gender stereotypes rooted in the Confucianism tradition of how women should act in general. A spousal caregiver shared:

F4: I have flaws, of course I have. My flaw (in caregiving) is that I am not good enough.

Researcher (RS): What do you mean by “not good enough”?

F4: My flaw is not good enough and not perfect.

RS: What do you mean by “being perfect”?

F4 (shy smile): Just like, for example, “Do not do anything that makes him yell at me.” If he yells at me, that means I have flaws.

RS: So you think when he yells at you, it is your fault?

F4: Yes.

RS: Why do you think that?

F4: I could not be graceful and gentle enough to him.

RS: So you think ‘being not graceful and gently enough’ is your fault?

F4: Yes, I do. It is my fault.

These stereotypes shaped the guided self of participants in the study and how they evaluated themselves as a woman and a female caregiver. Some caregivers revealed their beliefs that they were not “good enough” caregivers because they were not “patient enough” and “gentle enough” to the people living with dementia, regardless of how much effort they devoted to their caregiving. When caregivers perceived that they did not perform their caregiving role with the desired characteristics and qualities, such as being patient, gentle, and graceful, they tended to devaluate themselves and experienced negative emotions, such as being upset and disappointed.

The worthy self

An independent and autonomous caregiver

Although participants were from different socioeconomic backgrounds and caregiving situations, they all shared the key values of independence and autonomy. Family caregivers highlighted independence and autonomy as the key attributes of a primary caregiver. They, therefore, preferred to undertake caregiving duties as much as they were “able to” or “still capable of” (carrying out caregiving duties). Asking for help was perceived as “bothering others,” “being dependent,” and “becoming a burden.” A spousal caregiver commented:

It is just my personality. I honestly do not want to bother my children. I try as much as I can (to take care of the husband). I am the person who does not want to bother anyone or become a burden to anyone. (F3)

Going in hand in hand with the key values of independence and autonomy, female caregivers in the study practice self-reliance and self-discipline to refrain from seeking help from others, particularly from other male family members. Most of them took their practice seriously despite the hardships they experienced in their personal lives. A daughter-caregiver shared about her practice of self-reliance and self-discipline after dealing with her own divorce and depression:

After the treatment (of depression), I trained myself because I could not lean on anyone. My children were too young, my parents needed me as I was the oldest daughter in the family. I could not keep asking my brothers-in-law for help. (F7)

To many participants, being a primary caregiver implied both a privilege (or pride) and a challenge. Undertaking the role of a primary caregiver represented their values in the family as a worthy and helpful member. This was particularly important to older spousal caregivers. The majority of spousal caregivers were retired and lived on their limited retirement pensions. Many of them relied on their children’s financial support to cover the medical treatment for their loved ones. As they could no longer contribute to the household income, spending time taking care of the people living with dementia was considered a method of contribution to the whole family. As a result, these caregivers delayed their help-seeking behaviors as long as possible. Instead, they preferred to “keep trying” to maintain all caregiving duties by themselves to prove their capacity and values.

A devoted and helpful caregiver

In addition to the upholding of independence and autonomy, participants shared their values of devotion to their loved ones and self-sacrifice in caregiving. As a result, many participants shared the belief that they were the best fit for the caregiving role, and caring for and serving others were their mission in life. To these caregivers, caregiving also defined who they were. A daughter-caregiver noted:

Whatever I can help, I will help. I do not give a second thought about it… I never think that people owe me anything if I help them. I just think it (caregiving) is my responsibility rooted in my conscience. Whatever I can do, I will try my best. After those events (taking care of relatives in the hospital), I felt unwell. I met with doctors for their advices, then I took care of myself. I did not bother anyone else. I am not the type of person who likes to complain, even when I feel like I am about to collapse. One time, I felt like I was about to pass out, but I did not say anything because my ill relatives needed me. I knew they would have been scared if I left them, so I did not want to show anything. (F6)

By viewing caregiving for others in family as a mission of a woman, participants in the study associated the attributes of devotion and helpfulness with their worthiness, dignity, and capability. By committing to caregiving for the relatives with dementia, caregivers found their values and validation in their families and communities. When they could still take all the caregiving burdens on their own, they developed a stronger sense and belief in their worthiness. For those who eventually needed help from other family members and hired a housemaid, they had to alter their sense of worthiness, or in other words, lowered their standard of “a worthy self.”

Discussion

This study contributes to the knowledge of self-concept of female caregivers for people living with dementia in the context of a developing, Confucianism- and socialist-oriented country. Results show multiple types of self-concepts in different aspects emerged from the data. In the first aspect, self-concepts of female caregivers were the outcome of the interactions between the guided self and the performed self. The guided self was the self that caregivers’ social norms and cultural traditions told them about who they should be, while their performed self was the self they demonstrated to the outside world. The mismatch between these two types of self (self-discrepancy) caused distress among caregivers. In the second aspect, caregivers’ self-concept was the combination of the three key types of the self: the moral self (a filial daughter or a responsible wife); the feminine self (a patient and graceful women); and the worthy self (a devoted and helpful caregiver).

It was noted in the literature that dementia caregiving experiences tend to alter the sense of self of family caregivers, especially for female caregivers (Tuomola et al., 2016). Changes in caregivers’ self-concept unfold over time, along with the progress of their relatives’ behavioral and psychological symptoms of dementia (Montgomery & Kosloski, 2013). Dementia caregiving, particularly in cases of late dementia, creates a new role for the person in charge, which is the role of a (primary) caregiver. Undertaking the new role of a dedicated primary caregiver adds a new role for the individual and also alters others, such as the roles of a wife, a mother, and an employee. This alters the caregiver’s identities and eventually her sense of self (Baumeister, 1999; Sabat & Harré, 1992; Sabat 2002; Sabat & Collins 1999; Oyserman et al. 2012).

A larger body of the literature discusses the loss of self among people living with chronical and terminal diseases (Aneshensel et al., 1995; Butcher et al., 2001; Comer, 2015; Gillies, 2012; Hooley & Hoffman, 1999; Silverberg, 2006). The existing studies approach these losses in the light of the relationship between caregivers and patients and often associate these losses with the loss of intimate exchange when caregivers experience intensive caregiving burdens for a long time (Aminzadeh et al., 2007; Betts Adams et al., 2008). By focusing on the self-concepts of female caregivers, the study results contribute to an important yet understudied area, considering that dementia caregiving often impacts the self-concept of female caregivers more significantly than their counterparts (Tuomola et al., 2016).

One of the key results of this study is the introduction of two concepts, the guided self and the performed self. The interaction between these two selves make up the dynamic of the sense of self among female caregivers. Although Goffman (1956) does not explicitly label and differentiate the guided self from the performed self, the study results map on Goffman’s arguments of the complex process in which each individual transforms her beliefs of her “self” (as labeled as the guided self in this study) into her actions (the performed self), as well as how this process shapes her personality, social interactions with others, and social structures around her (Goffman 2006, p. 156). In the same line with Goffman (2006, p. 10), caregivers’ performance of their different selves was for the benefit of other people, such as their relatives with dementia and other family members.

The theme of the guided self reported in this study is consistent with the concepts of the ideal self and the ought self, and the theme of the performed self is in line with the concept of the actual self in the literature (Higgins, 1987; Lynch et al., 2009; Rogers & Kramer, 1995). The guided self reflects both personal expectations (the ideal self) and moral sense of duty (the ought self) that female caregivers expressed through their caregiving duty. On the other hand, the performed self is close to the concept of the actual self as both concepts refer to the representation of a set of attributes that a female caregiver and her significant ones (e.g., her family and friends) believed that she actually had, such as being gentle and helpful to the person living with dementia. In addition, the performed self in this study highlights caregivers’ performance of a set of attributes they expected to show others and their own evaluation and judgments of their performance. Their evaluation and judgment often center around the criteria of whether they did well enough to be a devoted and womanly caregiver to their husband or parent with dementia and whether others would have the same conclusion.

Notably, the study results highlight the potential gap between the guided self and the performed self perceived by female caregivers. The self-discrepancy theory (Higgins, 1987) supports this result by discussing the inconsistency and conflict between the ideal self and the actual self. Studies with female caregivers who shared Confucianism values in other contexts also point out the incongruence between how they expected to show and how they actually performed their caregiving role for people living with dementia (Liew et al., 2010; Tuomola et al., 2016). When they believed that they did not do enough or did not do well enough, their self-concept, particularly of their own personalities and worth, was discredited. This self-concept disruption appears associated with self-destructive feelings and low self-esteem among female caregivers and altogether affects their health-related well-being and quality of life (Higgins, 1987; Liew et al., 2010; Lynch et al., 2009; Schuler et al., 2006; Tuomola et al., 2016). Furthermore, when caregivers made extra efforts to excel at multiple gender roles, such as daughter, mother, and wife, and refrain from seeking help, they reported exhaustion and a negative impact on their physical and mental health. These issues are needed to be considered in the implications for female caregivers.

In another aspect, the study results present the moral self, the feminine self, and the worthy self as three key themes emerged from the data. The concept of the moral self is consistent with the spiritual self, and the concept of the worthy self is in line with the social self to some extent (Higgins, 1987). The existing literature strongly supports the cultural roots of these self-concepts of Vietnamese female caregivers. To adult caregivers, taking care of their parents with dementia was the way to “pay back” for the love and sacrifices they received from their parents when they were younger. This practice was referred to the reciprocal “parent–child contract” (Braun et al., 1996). These beliefs were rooted in their Confucianism-based traditions of filial piety, familism, and selfless actions, which encouraged women to put others in their family first (Miyawaki, 2015). Studies on Vietnamese immigrants in the United States and Singaporeans in Singapore, who were under the influence of Confucianism, also find that female caregivers took on the role of a primary caregiver for their relatives with dementia to fulfill their responsibility and obligation in an implicit morality-based contract between the spouses or a child and her parent (Braun et al., 1996; Tuomola et al., 2016). Caregiving gave these women an opportunity to improve their own senses of usefulness and competence (Liew et al., 2010) and experience positive aspect of caregiving in their well-being (Quinn et al., 2019). The concept of the feminine self, a culturally reflected theme in the Vietnamese context, does not appear to be widely addressed in the general literature of dementia caregiving.

The present study has its own limitations. First, this was a secondary analysis study, and the data were collected primarily for the topic of the psychological adjustment process of Vietnamese female caregivers. Although self-concept of female caregivers emerged as an important theme in the primary VCG17 study, the researcher did not have a chance to collect further data on the topic of self-concept. Second, the data analysis was conducted on a small sample size of 13 female caregivers recruited from the leading geriatric hospital in the most crowded metropolitan area of Vietnam, which limits the generalizability of the study results. Third, while the validity checks of language translation and analysis were conducted by two Vietnamese American scholars in the primary VCG17 study, this procedure was not applied in the present VCG17-F study. The positionality of the researcher might impact result synthesis, and result interpretation should be taken with precautions. Despite these limitations, the present study has its own contributions to the literature on family caregivers in dementia care.

Conclusion and implications

Vietnamese female caregivers responsible for dementia care for their relatives face multiple tangible and psychological challenges on their daily basis. However, very little is known about their experiences and psychological processes, particularly their self-concepts as primary caregivers. This study contributes to fill in the knowledge gap of female dementia caregivers in the unique context of modern Vietnam and calls for further studies on their psychological attributes and culturally competence approach to this specific group.

In addition, the results of the present study, particularly of self-discrepancy and its impacts on well-being of female caregivers, call for the development of interventions and social services targeting Vietnamese female caregivers. Psychotherapy and family therapy have been suggested to address the negative effects of self-discrepancy among caregivers (Lynch et al., 2009). Psychotherapy could be helpful for female caregivers to reflect upon their self-concepts and learn to reconstruct them in more realistic and constructive ways. Helping professionals could also guide caregivers to explore the nature of their personal relationships and interpersonal environment that shape their self-concepts in psychotherapy and family therapy. The development and implementation of these therapies would provide important sources of professional support for female caregivers, given the fact that social services for family caregivers of people living with dementia barely exist in Vietnam (Nguyen & Levkoff, 2020). In addition, the study results advocate for the changes in social discourses, particularly in the mass media and social policy, on social roles and expectations established for women. Instead of repetitively placing unrealistic and gender-bias standards on women, it is critical to raise public awareness of human endurance and the importance of social support and help-seeking for not only female caregivers but Vietnamese women in general.

Footnotes

Acknowledgements

I thank the anonymous reviewers for their helpful comments and suggestions during the peer-review process and Dr Sara J. English (Winthrop University) for her feedback on the last manuscript.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was partially supported by a SPARC Graduate Research Grant from the Office of the Vice President for Research at the University of South Carolina.

Ethical Approval

The research was granted the ethnical approval Pro00066663 by the Institutional Review Board (IRB) of the University of South Carolina. The Director Board of the National Geriatric Hospital (Hanoi, Vietnam) also approved the study protocol in Vietnamese.

ORCID iD

Trang T Nguyen

Trang Nguyen, PhD, MSW, is currently a postdoctoral fellow at the Center for Studies of Displaced Populations, Department of Global Community Health and Behavioral Sciences, Tulane University School of Public Health and Tropical Medicine, and a social work faculty at the University of Social Sciences and Humanities, Vietnam National University, Hanoi. She completed her doctoral training in social work at the University of South Carolina. She earned her bachelor’s and master’s degrees in social work at Vietnam National University. Her research interests include mental health problems, such as depression and dementia, as well as resilience and coping among older adults and their family caregivers. She is also interested in culturally competent, community-based, and art-based interventions for these groups. She has worked on several research projects on mental health problems and sociopsychological treatments for adults with mental disorders in Vietnam, as well as situations of and interventions for dementia family caregivers in Vietnam and the United States.

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