Abstract
Objectives
This study aims to define resilience of spousal family caregivers for older adults living with dementia in the Vietnamese context.
Methods
A directed content analysis was conducted on 22 interview transcripts, including nine follow-up interviews, of a sub-sample of 13 spousal caregivers, drawn from a larger study with family caregivers for relatives with dementia in a hospital in Vietnam. The study started with key categories from the theory of the unifying model of resilience in dementia caregiving to guide the analysis process, while new codes and categories were identified during this process.
Findings
The study results show a revision and extension of this model by introducing a revised model with newly developed sub-categories under the five revised key categories of adversity, resilience processes, outcomes, internal resources, and external resources.
Conclusions
The results provide evidence for the development of resilience-based interventions and services for spousal caregivers in their contexts.
Introduction
Dementia poses a global health concern as one of the leading causes of disability and dependency among older adults. Among different types of dementia, Alzheimer’s disease is reported to be the most common form that accounts for 60–70% of dementia cases. Not only dementia affects approximately 50 million people worldwide, with nearly 10 million new cases each year, but also places great stress and burdens on family caregivers (World Health Organization, 2020).
An extensive body of literature has focused on the negative aspects of dementia caregiving, particularly on caregiving burden (Gaugler et al., 2007). Spousal caregivers have been considered a unique vulnerable group to dementia caregiving burden. They tend to disengage from their pre-existing social networks due to increasing caregiving demand for their family member, leaving them with high pressure and particular needs for support (Donnellan et al., 2015). Without adequate social support, spousal dementia caregivers are prone to depression, anxiety, and other mental health problems (Joling et al., 2015). Besides, the greater caregiving burden they perceive, the less marital satisfaction they report (Fitzpatrick & Vacha-Haase, 2010). A long-term caregiver describes her experience caring for her husband with Alzheimer’s disease in her autobiography: “Alzheimer’s captured us both. It destroyed a wonderful mind and our lives together” (Comer, 2015, p. 216).
Dementia caregiving, however, is not associated with negative outcomes solely. Caregiving experiences of spousal caregivers range from very negative to very positive (Shim et al., 2012). Despite facing critical challenges stemming from care provision for a relative with dementia, a proportion of caregivers report their positive outcomes, such as constructive meaning-making, skill acquisition, adaptation, and stable well-being, which are associated with the preservation of at-home care for the person with dementia. Research on positive aspects of dementia caregiving suggest the role of resilience in caregivers’ coping mechanisms (Donnellan et al., 2015; Gaugler et al., 2007; Petriwskyj et al., 2016; Scott, 2013).
In addition, resilience, particularly resilience-building, is found to be the underlying mechanism that supports family caregiver in dementia care (Hanna et al., 2022). Moving away from the traditional caregiving burden view, caregiving resilience and its constant resilience-building process focus on caregiver strength and quality of life through the combination of caregiver external and internal resources (Hanna et al., 2022; Parkinson et al., 2017). In short, understanding caregiver resilience is crucial for dementia caregiving scholars to contribute to more coherent approaches to caregiver support.
Revisiting the concept of resilience
Resilience has been studied in multiple disciplines, such as psychology, psychiatry, and neurology, for decades, yet existing literature reflects very little, or almost no consensus on a universal operational definition of resilience (Aburn et al., 2016; Happer et al., 2017; Herrman et al., 2011; Luthar et al., 2000). Instead, there exist large variations in operationalization and measurement of key constructs of resilience (Happer et al., 2017; Luthar et al., 2000). Fundamentally, resilience refers to human ability to positively adapt to significant adversity (Herrman et al., 2011; Luthar et al., 2000).
Among a variety of approaches to the construct of resilience, the predominant theories view resilience as (i) trait or virtue (Greitens, 2016; Happer et al., 2017; Herrman et al., 2011; Kalisch et al., 2015; Luthar et al., 2000; Zhou et al., 2020); (ii) ability or excellence (Greitens, 2016; Southwick & Charney, 2018); (iii) process (Happer et al., 2017; Herrman et al., 2011; Kalisch et al., 2017; Luthar et al., 2000, 2000; 2000; Zhou et al., 2020); and (iv) outcome (Happer et al., 2017; Kalisch et al., 2015; Zhou et al., 2020). Results from more recent studies deviate away from the dated view of resilience as bouncing back from hardship (Greitens, 2016) and endorse the model of resilience as a dynamic developmental process in which individuals use various resources to cope with, overcome, and grow from adversity (Happer et al., 2017; Luthar et al., 2000; Ungar, 2018; Zhou et al., 2020). In other words, this approach emphasizes the constant change and growth of human beings in challenging situations.
In nature, resilience is complex, multidimensional, and dynamic (Southwick & Charney, 2018; Ungar, 2018). Resilience often takes place in the contexts of adversity (Ungar, 2018). In most cases, adversity is the precedence that fosters the process of change and growth (Greitens, 2016; Ungar, 2018). This process consists of a sequence of actions involving experimentation, learning, and practice to develop abilities and skills to adapt to the difficult situations and find meaning in them (Greitens, 2016; Southwick & Charney, 2018; Ungar, 2018). In this process, resilience can be built through reflecting on the hardships, acknowledging positive and particularly negative thoughts and emotions, and accepting what can be changed and what cannot (Greitens, 2016). The process to develop resilience often takes time; yet, the results may be significant in building individual strength (Greitens, 2016).
Resilience is associated with multiple resources, ranging from biological and personal, to socio-environmental domains (Herrman et al., 2011; Petriwskyj et al., 2016; Southwick & Charney, 2018). Biological factors, such as brain structure, neurotransmitter reuptake, and stress-related hormones, that is, cortisol and dehydroepiandrosterone, are found to contribute to resilience in human beings. Personal factors, namely, personality traits (e.g., openness, hardiness, resourcefulness, optimism, and flexibility), mastery, self-efficacy, spirituality, positive self-concept and cognitive appraisal, and active coping, evidently promote resilience. In the socio-environmental domain, social support, particularly from family and peers, is critically correlated with resilience (Hanna et al., 2022; Herrman et al., 2011; Petriwskyj et al., 2016).
Resilience in the context of dementia caregiving
Although research on resilience has potential value at multiple points of human life cycle, most of existing studies on resilience has focused on children, leaving the topic of resilience in adult caregivers for people living with dementia scant (Luthar et al., 2000). Nevertheless, existing studies on resilience of this group highlight the importance of resilience as a protective factor to their health outcomes and well-being as it is negatively related to depression, anxiety, psychoactive drug, and perceived burden, and positively correlated to home-care longevity (Scott, 2013; O’Dwyer et al., 2013; Petriwskyj et al., 2016). In the past few years, the interest in resilience in dementia caregivers has grown, yet related literature has exposed the lack of consistent definition of resilience tailoring to the context of dementia caregiving (Zhou et al., 2020).
Among different definitions, the common themes for resilience of dementia caregiver are peoples’ capacities to navigate adverse situations related to caregiving burden and demanding care trajectory to meet basic needs of the people with dementia and themselves, and to obtain their personal growth (Bekhet & Avery, 2018; Gaugler et al., 2007). In the model of dementia care partners’ resilience, resilience can be viewed as a combination of the four key components, including (i) caregiving related adversity; (ii) internal and external resources available within caregivers’ network; (iii) a process in which caregivers utilize their resources to deal with the adversity; and (iv) outcomes of their actions to overcome the adversity in their caregiving (Zhou et al., 2020).
A variety of interrelated individual and contextual factors have been found to be associated with caregiver resilience (Bekhet & Avery, 2018). Individual factors include traits (e.g., proactive, self-reliant, flexible, and resourceful), faith and values (e.g., love, care, and commitment), behaviors (e.g., acceptance, building skills, moving forward, and letting go), and competence (e.g., self-efficacy, self-esteem, mastery, and practical coping strategies) (O’Dwyer et al., 2017; Petriwskyj et al., 2016; Séoud & Ducharme, 2015; Teahan et al., 2018). Contextual factors, including both social and cultural characteristics, such as social support and sub-culture of caregivers, also shape caregiver resilience (O’Dwyer et al., 2017; Teahan et al., 2018).
Despite what we have known about factors influencing resilience in dementia caregiver, literature exposes multiple knowledge gaps. There has been a lack of consensus definitions and measures of resilience, as well as consistent use of related terms, such as protective and vulnerability factors, for broad application in dementia caregiving studies (Luthar et al., 2000; Zhou et al., 2020). In addition, it remains unclear about the attributes of adversities, processes, and outcomes of caregiver resilience (Zhou et al., 2020). To address these knowledge gaps, scholars promote further studies on resilience attributes and processes, and their influencing factors that are both theoretical-based and empirically driven (Luthar et al., 2000; O’Dwyer et al., 2017; Zhou et al., 2020). Besides, future studies need to be put in a specific context, as caregiver resilience is associated with caregiving context and their relationships with the care recipients (Teahan et al., 2018). Among existing theories about resilience in the context of dementia caregiving, the unifying model of resilience in dementia caregiving (Zhou et al., 2020), based on a scoping review and content analysis, is one of the most comprehensive and up-to-date models in the field. However, it remains unclear how well this model maps on key attributes of resilience of different groups of dementia caregivers (e.g., spousal caregivers versus adult child caregivers) in a specific context, such as in a low- and middle-income country, where dementia cases are expected to spike, and family caregivers confront significant challenges to maintain their caregiving duties.
Research aim and question
Addressing the current knowledge gaps, as well as following the suggestions of scholars, this study aims to define resilience of spousal family caregivers for older adults living with dementia in the specific context of Vietnam. This study is important, given that Vietnam is one of the fastest aging countries in the world (General Statistics Office & United Nations Population Fund, 2016; WHO, 2020), and studies on Vietnamese dementia caregivers, particularly spousal caregivers, have been scarce. Especially, studies on their resilience almost do not exist. Theoretically driven, this study seeks an answer for the following research question:
How well does the unifying model of resilience in dementia caregiving (
Zhou et al., 2020
) describe key attributes of resilience of family caregivers for older adults living with dementia in Vietnam?
Design and method
This study employed a directed content analysis (Bradway et al., 2012; Hsieh & Shannon, 2005) on a sub-data set of 13 spousal caregivers drawn from a constructivist grounded theory study with 20 Vietnamese family caregivers for older adults with dementia in a hospital in Northern Vietnam (Authors, 2020). The original study, approved by the Institutional Review Board (IRB) of the researcher’ affiliated university in the United States and the hospital in Vietnam aimed to inductively explore their psychological adjustment process to their caregiving role. Although resilience was not the concentration of data collection of the original study, it emerged during the analysis process as a prominent category among the group of spousal caregivers, which led to this post-hoc study using directed content analysis. Using the deductive logic, the present study started with key categories and codes from the theory of the unifying model of resilience in dementia caregiving (Zhou et al., 2020) to guide the analysis process, while new codes and categories were identified during this process. This approach is appropriate to validate and extent this model in the context of Vietnam (Bradway et al., 2012; Hsieh & Shannon, 2005).
Data sources
This present study used two data sources. The primary data source was 22 interview transcripts from 22 semi-structured interviews with 13 spousal caregivers for patients clinically diagnosed with dementia. All participants were recruited from a geriatric hospital in Northern Vietnam. They signed the Vietnamese informed consents, and also approved audio recording of all interviews. These 22 interviews consisted of 13 initial interviews and nine follow-up interviews with seven long-term caregivers who agreed to participate in the second and/or third interviews. Interview questions centered around caregivers’ personal experiences and feelings regarding their hands-on caregiving duty for their spouses with dementia. More detailed description of data collection was reported where else (Authors, 2020). The secondary data source included field notes and memos written during and after the data collection. A significant part of the memos highlighted the concept of resilience and its related attributes, such as personal traits and personal growth, among spousal caregivers.
Participant characteristics
Participant characteristics (N = 13).
Note: N: total number; n: specific number in each category; SD: standard deviation.
Data analysis
This study adopted the Directed Approach to Content Analysis (Hsieh & Shannon, 2005). To be more specific, the data analysis process consisted of three steps: (1) Reviewing the theory used to guide the analysis; (2) coding using NVIVO 12; and (3) comparing and contrasting to support or extend the theory. In step 1, the researcher reviewed the comprehensive model of dementia care partners’ resilience (Figure 1, Zhou et al., 2020) to see whether this model would “bias the identification of relevant text” (Hsieh & Shannon, 2005, p. 1282). By comparing the model with the field notes and memos, it showed that this model was relatively consistent with the preliminary findings in the memos. Comprehensive model of dementia care partners’ resilience (Zhou et al., 2020).
In step 2, the coding process started with the researcher identifying the four key initial categories from the model of Zhou et al. (2020), including (i) caregiving related adversity; (ii) internal (personal traits) and external/environmental resources available within caregivers’ network; (iii) a process in which caregivers utilize their resources to deal with the adversity; and (iv) outcomes of their actions to overcome the adversity in their caregiving and personal growth. These categories helped organize passages from the transcripts into each related category. For passages that did not fall under the four key categories, new codes/categories were assigned to them in an inductive approach. Sub-categories with their definitions were also identified for further analysis. This step helped create a coding trail, which also served as an audit trail of the analytic process to achieve unbiased results (Bradway et al., 2012; Hsieh & Shannon, 2005).
In step 3, the researcher compared and contrast the model of dementia care partners’ resilience (Zhou et al., 2020) with newly identified categories and sub-categories to refine and extend the theory (Hsieh & Shannon, 2005). The discussion section below reflects to what extent the findings of this study refine and extend the pre-existing theory in a specific context of dementia caregivers in Vietnam.
Trustworthiness
In the effort to achieve neutral and unbiased results, the data analysis strictly followed the systematic guideline of directed content analysis methodology with the use of an audit trail and audit process (Bradway et al., 2012; Hsieh & Shannon, 2005). The audit trail and process were implemented through reviewing and examining the definitions of the key concepts in the comprehensive model of dementia care partners’ resilience (Zhou et al., 2020) in step 1, to the establishment of the coding trail for auditing in step 2, and the comparing-contrasting process in step 3.
Findings
Although “resilience” was not the main topic of the original grounded theory study and interview questions were not developed around this exact term, it appeared consistently and densely across participants’ discourses in the interview transcripts. The findings of the present study show a revision and extension of the model of resilience in dementia caregiving (Zhou et al., 2020). Being in line with the model, the primary category “Adversity in the context of dementia caregiving” remained the same, with two sub-categories emerging from the data, including “Contextual adversity” and “Individual adversity.” Another primary category, “Resilience processes,” was expanded with three sub-categories: “Reflecting,” “Practicing problem-solving and meaning-making,” and “Accepting.” “Personal traits” (i.e., fortitude, resourcefulness, and optimism) was revised into a sub-category under a new category “Internal resources,” along with two new sub-categories: “Competences” (self-efficacy and personal mastery) and Core values (family cohesion and compassion). The primary category “Environmental resources” was revised into “External resources” (i.e., social support). Two primary categories, “Outcomes related to the adversity” and “Personal growth” were grouped as sub-categories under the new category “Outcomes.” Figure 2 summarizes the new model based on the findings of the present study. Revised model of Vietnamese spousal caregivers’ resilience in dementia caregiving.
Adversity in the context of dementia caregiving
Contextual adversity
Participants reported a variety of contextual adversities when caring for their spouses with dementia, such as financial burden, intensive workload of daily hands-on care, time constraint, social isolation, decreased physical and psychological health. Most caregivers and their spouses in urban areas had pension, while many caregivers in rural areas, who were farmers, did not have this financial security. They relied on their seasonal farming income and monetary support from their adult children. Even though all people with dementia in this study had the government-issued health insurance that covered from 50% to 100% of the cost of their essential medications, such as Aricept, in the Dementia Program, they still had to pay extra for other types of medications and supplements. This placed a lot of burden on rural caregivers in the long run, as one of them commented
Before, I stayed home to take care of my husband. Recently, we have spent a lot on his medications, but still not enough, so I have to ask my teenager son to watch him when I go out to work part-time to have some extra money for his medication.” (CG01)
In addition, the nature of dementia caregiving was demanding, especially when the person with dementia was at an advance stage of the condition and showed challenging behaviors, such as wandering, biting, and hitting the caregiver, urinating, and having bowel movement in inappropriate places, and even spreading faeces around the house. A female caregiver summarized about her daily life:
A few days ago, I tried to measure his blood pressure, he pushed me down the floor, then slapped me. I was so mad… Not only that, he pees everywhere, in the garden, in the fish pond, at the corners of any room. Anywhere can be his toilet. Such a frustrating and terrifying disease. I have to follow him everywhere to clean up after him... I cannot go anywhere. I am trapped inside the house. I do not have friends anymore. (CG05)
Although all participants have at least two children, they did not receive much help on direct, hands-on care from them, as the children, mostly in the working ages, were occupied with work and other family duties. A female caregiver noted: “I live with my oldest son. He did not help me (with hands-on care for his father). I have my pride, I do not want to ask for his help, unless he offers to help himself.” (CG05).
Some participants in urban areas were able to hire a housemaid, who was untrained and had no knowledge of dementia from rural areas, to help mostly with house chores and sometimes with caregiving activities if required. The hiring process, however, was a hassle for those caregivers because not many housemaids were willing to work for a family with a member with dementia due to the demanding nature of the job. Even when a housemaid accepted the job, they often stayed for a few months up to a year before quitting for personal reasons, leaving the caregiver with their relative with dementia alone for months before they could find someone else. It remained problematic in the Vietnamese context, where professional caregivers almost did not exist.
Individual adversity
In addition to contextual adversities of dementia caregiving, caregivers reported various individual adversities, including their lack of knowledge of dementia and caregiving tailored for the condition, their own physical and mental health problems. Most caregivers commented that they thought their spouses were just “confused” as a sign of normal aging. Even after learning about the diagnosis of dementia, particularly Alzheimer’s disease, from the health professionals, they still did not understand much about the disease, leaving them self-wondering and worrying about their caregiving plan:
I do not know how to take care of him, just try to take care of his meals and talk to him. Sometimes I am very disappointed because I do not know what else I can do for him. (CG12).
Besides, the critical conditions of the care recipients required their caregivers to put extra effort in hands-on caregiving, reducing, or even cutting out time for part-time work/farming, self-care, and socialization, which eventually affected their physical and mental health. Most caregivers were older adults themselves and had different physical conditions concerning them, such as high blood pressure and joint pain. Intensive caregiving workload tended to worsen their conditions and affected their health outcomes: I have asthenia and neurasthenia. The doctor told me it is expected because of my caregiving duty. I have to take a lot of medications. Maybe that is why I have constipation. I already have hemorrhoids. My intestine has some problems. And then problems with my livers and kidneys… (CG05)
Not only physical conditions, but also psychological stress and distress became individual adversities to caregivers. Particularly, caregivers’ psychological difficulty was associated with their acknowledgment of changes in their family member and their lives:
I am worried and shocked. He used to be a very clean, neat, caring, and gentle man. But now… I used to be very happy. He had taken care of me. Now I serve him and felt exhausted when he does not cooperate with me. Before, we went out together for social gatherings. Now, I either go out alone or turn down the invitations to stay home with him. (CG14)
It was a shock to my family and my relationship. We were happy. We used to go out together to gather with our friends, then suddenly she got this disease. I was lost. And sad. (CG18)
Feeling shocked, sad, exhausted, annoyed, repressed, suppressed, miserable, hopeless, and depressed appeared in discourses of most caregivers, particularly long-term caregivers. Desperately worrying about an uncertain future for their family member (e.g., who would care for the people with dementia if they—the caregivers pass away) placed more psychological burden on caregivers. They also acknowledged these emotions as psychological challenges they needed to overcome:
Sometimes I scream and cry out loud to vent it out. I feel so repressed. I do not mind taking care of him, even the dirty works. But he does not cooperate with me, go against me, be mad at me, scold and hit me. Many times, I feel so depressed and my head is like to be exploded, and I just want to die. (CG05)
Resilience processes
The findings show that caregivers went through resilience processes in response to their contextual and individual adversities. Resilience processes were constant learning processes of caregivers’ reflecting, practicing problem-solving and meaning-making, and accepting.
Reflecting
To cope with and overcome adversity in the context of dementia caregiving, caregivers reflected upon their situations, negative thoughts and emotions, and actions as a first step of adaptation. They clearly acknowledged their concerns, worries, and sadness. Reflecting helped caregivers become conscious of and connect with their destructing thoughts and emotions, and foster their thought processes to replace them with more constructive ones:
If I keep tormenting myself with my worries and stress about him, I may be sick like him, for real. There is no benefit for being too sad, so I told myself I should change the way I think. (CG12)
I do not get down by caregiving. Being down or not depends on the caregiver, not the patient. The patient does not know what to do anymore, so it is all about how the caregiver plans and acts. (CG04)
Practicing: Problem-solving and meaning-making
After reflecting upon their thoughts, emotions, and actions, caregivers focused on solving problems related to the adversity in the caregiving context. They learned different caregiving strategies from health professionals, books, health magazines, television programs, and the Internet, then tried them with their spouses, such as how to talk to the persons with dementia in short sentences and what brain exercises they could use. They also came up with different ideas based on their own caregiving experiences to better care for their family members:
I try to keep her active by taking her to the market or community meetings with me, so she does not stay home all day. When I go to the market, I take a longer route, so we can exercise. At home, I take care of my garden to keep myself active, healthy, and cheerful. (CG03)
When he became violent, I told him gently: “There are only two of us living together. If you keep yelling at me and hitting me, I will leave here. No one will cook and take care of you.” Then he calmed down and be gentle again. (CG11)
To some caregivers in rural areas with financial difficulty, they dealt with the problem by making craft products at home for extra money, or working part-time a few hours per day when their spouses rested in their locked houses. Caregivers also tried to find time in their busy schedule for self-care as a way to preserve their health outcome. Their self-care varied from taking supplements, playing chess on the computer, having a half-hour coffee break to sending a relative to care for their relative while taking a three-day vacation. Besides, hiring a housemaid or planning on hiring a housemaid or searching for a nursing home was considered to deal with the increasing caregiving burden. Although nursing home was not common across Vietnam, particularly in rural areas, most caregivers of spouses with advance dementia were open-minded to learn more about this option.
To cope with destructive thoughts and emotions, caregivers practiced meaning-making for their spouses’ illness and their own adversities. Searching for meaning of ongoing adversities was considered an effective coping method to caregivers’ internal crises related to caregiving. Caregivers practiced meaning-making over times based on their living experiences and religious and spiritual beliefs. Meaning-making helped caregivers come closer to accepting their challenging situations:
Even though he has this disease, he still lives until now, I think it is already a fortune and I am happy just for this. We are much luckier than many other people. (CG12)
I used to wonder why a perfectly good man like him becomes this, why some cruel people still live happily. I believe in Buddha’s teachings, such as karma (the law of cause and effect). Like the monks teach me, we are living the consequences of our actions from many past lives. Then I accept his illness and try to do good deeds for good karma. (CG14)
Accepting
Learning to accept their family members’ disease, changes in their lives, the present hardship of caregiving, and the uncertain future were big part of caregivers’ resilience processes. Rational thinking and spiritual beliefs, such as Buddhism’s law of cause and effect, crucially aided their journey to acceptance. Not only caregivers tried to come to term with their presence, but they also became more flexible in their actions and planning:
Learning from Buddha’s teachings, I think I owe him. He had taken care of me, now it is my turn to pay him back. I made up my mind: If I am paying him back, I should pay it back gratefully and peacefully. That thinking relieves me. (CG14)
We are old so we have to accept illnesses. I made peace with her illness. I just try to take good care of my health to better care for her. Better care for her is better for me and my health too. Good health is not something we can buy. I adapt my caregiving strategies to her condition. I do what I can within my capacity. (CG19)
Internal resources
Personal traits: Fortitude, resourcefulness, and optimism
When caregivers were asked about what made them resilient to endure the hardship related to caregiving, most of them pointed out fortitude as one of the primary traits of a resilient caregiver. They consistently emphasized that caring for their spouses was their job; hence, they always tried their hardest and did their best. A male caregiver commented: “You need fortitude to care for people like her (living with dementia). Sometimes I feel like the hardship is beyond my limit, but my fortitude helps me overcome it” (CG18). As most of them experienced the vivid Vietnam War, or the post effects of the Vietnam War, such as poverty, hunger, and loss of their loved ones at very young ages, they made a connection between their past experiences and their present fortitude, as one caregiver commented “I already went through the toughest adversities in my early life, now I can face any sufferings as if they are just part of life. Nothing special about them” (CG12).
In addition to fortitude, resourcefulness was endorsed among caregivers as an important attribute to their caregiving resilience. Resourcefulness was showed in caregivers’ daily lives, as well as in their caregiving:
I have taken a really good care of my husband. People praise my resourcefulness and activeness. I take care of everything, from my husband, my children, including their education and careers, my work, to our investment and housing. I bought each of my son a house. My children told me that I am too fast, I should slow down. (CG05)
Optimism was also the trait that all caregivers emphasized when discussing their adjustment to the dementia caregiving role. While many caregivers endured multiple hardships in their lives, they decided to focus on their advantages and strengths, such as having healthy and relatively successful children and having pension. Being optimistic was seen a solution to reduce their distress in caregiving:
The more optimistic I am, the lessen the burden I face… I try to make peace with difficulty in my life by being optimistic. Being pessimistic does not help. If I cannot escape the storm, why don’t I make the storm my friend, my source of joy? (smile) (CG04)
Competences: Self-efficacy and personal mastery
Self-efficacy refers to caregivers’ confidence in their abilities to take good care of their relative with dementia. Most caregivers in the study explicitly stated their confidence in their caregiving, for example,
I take care of her myself and learn from my experiences. I have my confidence and hope. (CG18)
I am confident in taking care of my family, my wife and my children. I have trust in my caregiving. (CG03)
Their confidence in caregiving came from their personal mastery. Caregivers, all reflected on their long learning process in dementia caregiving from multiple channels, such as from doctors and nurses in the Dementia Program, health magazines, and conferences on dementia in the area. They emphasized that only hands-on practice could help them become confident and competent in caregiving for their family members. As one said,
No one tells me about how to take care of her, even in her daily activities like eating and bathing. I have tried different ways and learned from them to find out what have worked best for her. (CG18)
Core values: Family cohesion and compassion
Family cohesion and compassion were found important factors in spousal caregivers’ resilience. They perceived their caregiving as their responsibility and obligation as a loyal spouse and a worthy family member. This perception crucially motivated caregivers to endure the hardship of dementia caregiving:
I just think that I have the ability to take care of him despite his condition. He takes care of me, and I take care of him. It is called responsibility. Not a big deal. (CG12)
I never think caregiving is a burden. It is just a responsibility. If you think it is a burden, it will wear you out, just think it is your responsibility. (CG04)
Compassion and empathy towards their spouses particularly reinforced caregivers’ will and resilience in caregiving. They eventually became their inner strengths to cope with caregiving challenges, as one said,
To live is to be compassionate. Without compassion, I cannot overcome the hardship of caregiving, because it is tremendously hard to care for someone with dementia. Without compassion, I may become someone I heard about, locking his wife in a room and bathing her by spraying water on her. Husband and wife relationship needs to be based on compassion. (CG18)
External resources: Social support
Caregivers consistently highlighted the importance of social support in forming and developing their inner strengths to cope with caregiving burden. There were two sources of social support detected from caregivers’ discourses, including formal support from doctors and nurses in the Dementia Program, and informal support from their relatives and friends. They all shared their satisfactions with the attitude and support of the health professionals. Not only the doctors were “nice, enthusiastic, and informative,” but they were also willing to give caregivers their cell-phone number for further questions, even after the working hours, which give caregivers considerable emotional support.
In addition to formal support from health professionals, informal support from children, other relatives, and friends were important to maintain caregivers’ resilience. All caregivers had adult children who were busy with their own jobs and family duties. Instead of helping with hands-on care for the person with dementia, their children supported them financially and emotionally. Although caregivers did not mind taking the difficult job of a primary caregiver, they could accept and endure it mostly because of the acknowledgment for what they have done and the support, especially emotional support from their families.
My source of strength is my children. They care about me and know that I am tired of caring for their father. They know. They often hold my hands, ask about me, and encourage me. I feel much better, like a stress relief. (CG14)
Outcomes: Personal growths in mindset and skills and problem-related outcomes
Resilience had positive impact on both caregivers’ personal growth and problem-related outcomes. Caregivers’ personal growth refers to their growth in mindset and multiple skills including specific hands-on caregiving and general problem-solving skills. Their mindset growth was manifested at their more open-minded and self-compassionate perspective of their primary caregiver role, self-care, as well as more flexible with their caregiving plans, such as finding a nursing home in the future. With a growth mindset, caregivers adapted better to their situations.
Before, I followed him everywhere to clean after him because he peed everywhere in the house. I was exhausted and so stressed. Now, I let him do him. I will clean the house later. I eventually let go of my impulse to follow him 24 hours and clean up everything after him. After years, I finally decided to let him stay home with the maid for an hour to go out for a hair appointment. I feel relieved. I had not worn dresses for years, only sleeping wears, because I had to stay home with him all the time. Now I take out my dresses and dress up again to the hospital, the bank, and my friends’ homes. I feel good. I also want to talk about dementia caregiving on a Tivi show to help others understand our experiences. (CG05)
With a growth mindset and more skills to adapt to their caregiving demand while having more time for self-care, most caregivers reported better physical and mental health outcomes. Feeling “more active physically” and “relieved, relaxed, and much lighter mentally” were common statements among caregivers. When caregivers were in good physical and mental conditions, they coped with the person with dementia’s problems, such as their temper tantrums, and their own problems, such as schedule conflicts, in more strategic and flexible manner leading to better outcomes.
Discussion
This study addresses the knowledge gap in Vietnamese spousal caregivers’ resilience in dementia care. Applying Directed Content Analysis (Hsieh & Shannon, 2005), the results reflect a revision and extension (Figure 2) of the model of resilience in dementia caregiving (Figure 1, Zhou et al., 2020). A finding that is consistent with the literature is the crucial role of adversity in defining resilience (Ungar, 2018). Resilience cannot be measured without adversity (Kalisch et al., 2017). In the results of this study, adversity is expanded into contextual adversity and individual adversity, as they influenced the resilience process differently. The sociocultural context of caregiving and caregivers’ psychological dimensions were found to influence family caregivers’ experience of adversity (Teahan et al., 2018).
In line with previous studies, the results emphasize a key attribute of resilience that resilience is a process (Happer et al., 2017; Ungar, 2018; Zhou et al., 2020). The study results also expand this finding by conceptualizing resilience process as a constant learning process, consisting of reflecting, practicing problem-solving and meaning-making, and accepting. This finding is one of the most important contributions of the present study to the literature on caregiving resilience, which lack a specific conceptualization of a resilience process.
Only a very few existing studies (Greitens, 2016; Ungar, 2018) point out experimentation and learning as one of the key principles of a resilience process.
Results of the present study emphasize personal growth as an important outcome of the resilience process. Personal growth has been consistently reported as psychological gains in resilience literature of people living with traumas (Feldman & Kravetz, 2015) and dementia caregivers (Bekhet & Avery, 2018; Gaugler et al., 2007). In line with existing studies (Fernández-Calvo et al., 2016; Southwick & Charney, 2018), caregivers’ personal growth were shown in their growth mindset and newly learned competence.
Similar to the existing literature, this study’s results highlight the association of external and internal resources with caregivers’ resilience. External resources referring to social support are widely reported as a factors associated with caregivers’ resilience (Dias et al., 2015; Donnellan et al., 2015; Hanna et al., 2022; O’Dwyer et al., 2017; Teahan et al., 2018). Internal resources covering a range of individual factors, such as traits, competences, and core values are also a highlight of this study. Core value of compassion and traits reported in this study, including fortitude, resourcefulness, and optimism, were consistent with previous studies on dementia caregivers (Bekhet & Avery, 2018; O’Dwyer et al., 2017; Petriwskyj et al., 2016; Séoud & Ducharme, 2015; Teahan et al., 2018). In addition, caregivers’ competence, such as self-efficacy and personal mastery developed from past experiences, are found to be connected with their resilience in this study, as well as in previous ones (Gaugler et al., 2007; Joling et al., 2017; O’Dwyer et al., 2017; Teahan et al., 2018). In short, although this study has its limitations, such as a small sample size of Vietnamese spousal caregivers, interviewing questions not primarily designed for the topic of resilience, and the analysis and audit process conducted by one researcher only, it has its contribution to the literature.
Conclusion and implications
This study not only examines a novel model in the specific sociocultural context of Vietnamese spousal caregivers for people with dementia, but also expands the model to better understand caregiving resilience of a unique group. In other words, this study is both theoretical-based and empirically driven. As this study specifically focuses on the Vietnamese context, its findings may be transferable to dementia caregivers with similar sociocultural backgrounds, such as caregivers in other low- and middle-income countries. Besides, this study findings are relevant to larger international contexts, as the study expanded the general model of resilience in dementia caregiving (Zhou et al., 2020), which has a wide application across geographical areas and populations. The study results call for further studies with different groups of dementia caregivers, such as adult child caregivers and hired caregivers, as well as provide evidence for the development of resilience-based interventions and services for spousal caregivers in their contexts.
Footnotes
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, VNU University of Social Sciences and Humanities, Hanoi.
