The characteristics of the spouses and PwD
Data saturation was deemed reached at the 19th interview when no new code emerged from data analysis. However, to ensure the thoroughness of data collection, one additional interviews were conducted, but it did not provide any new information or insights and the average length of the interviews was 50 (42–85) minutes. The included spouses ranged in age from 46 to 85, with an average age of 69.1; The duration of care ranged from 1 to 11 years with an average of 3.8 years. All spouses have common chronic diseases such as hypertension and diabetes. Sixteen spouses took sole care of the patients(Tables 2).
Table 2
The characteristics of spouses and people with dementia in this study
Number | Spouse | People with dementia |
| Age (year) | Gender | Occupational | Education | Care alonea | Length of caretaking (year) | Health statusb | Risk factors | Age (year) | Dementia severity |
1 | 72 | F | Accountant | S | No | 11 | poor | Hypertension;Diabetes | 75 | Severe |
2 | 68 | M | Worker | S | No | 4 | good | Smoking;Alcohol༛Hypertension | 66 | Moderate |
3 | 70 | F | Worker | S | No | 5 | good | Social isolation;Depression | 72 | Moderate |
4 | 75 | M | Worker | S | Yes | 6 | poor | Smoking;Physical inactivity༛Social isolation༛Hypertension | 75 | Severe |
5 | 64 | F | Accountant | S | No | 4 | good | Hypertension;Diabetes | 65 | Moderate |
6 | 85 | M | Teacher | C | Yes | 7 | poor | Hearing loss; Hypertension Social isolation;Physical inactivity | 79 | Severe |
7 | 66 | F | Accountant | S | No | 2 | good | Hypertension;Diabetes | 67 | Moderate |
8 | 75 | M | Civil servant | C | No | 2 | poor | Obesity;Smoking༛Alcohol | 72 | Mild |
9 | 53 | F | Teacher | C | No | 1.5 | good | Obesity;Physical inactivity | 55 | Mild |
10 | 46 | F | Individual operator | C | No | 1 | good | Hypertension;Depression | 51 | Moderate |
11 | 67 | F | Clerk | S | No | 3 | good | Hypertension;Physical inactivity | 67 | Moderate |
12 | 58 | M | Individual operator | S | Yes | 1.5 | good | Diabetes;Obesity༛Smoking | 55 | Moderate |
13 | 64 | F | Worker | S | No | 1 | poor | Hypertension;Physical inactivity༛Social isolation | 63 | Moderate |
14 | 73 | F | Worker | S | No | 2 | poor | Hypertension;Depression༛Diabetes༛Obesity | 72 | Severe |
15 | 75 | M | Farmer | E | No | 5 | poor | Smoking;Physical inactivity༛Social isolation | 73 | Severe |
16 | 65 | F | Worker | S | No | 3 | good | Physical inactivity;Depression | 68 | Severe |
17 | 51 | F | Farmer | E | No | 5 | good | Physical inactivity;Hypertension | 51 | Moderate |
18 | 69 | F | Accountant | S | Yes | 3 | poor | Hypertension;Depression | 71 | Moderate |
19 | 78 | F | Farmer | E | No | 6 | poor | Depression;Hearing loss༛ Social isolation;Physical inactivity | 80 | Severe |
20 | 54 | F | Farmer | E | No | 2 | good | Depression;Hypertension | 56 | Severe |
F, female; M, male;E,Elementary school and below ;S,Secondary education level ;C;College graduate or above |
a, Care alone,Spouses report sole caregiver responsibilities |
b, Health status, Subjective assessment based on spouse self-reports |
This paper identified two themes and obtained six sub-themes through thematic analysis. We defined the critical node events as those that prompt the next phase of spouse s' health behavior change. Influenced by factors such as caregiver load, changes in couple relationship, social expectations, culture and values, the spouse's health behavior presents a dynamic process of constant development and change after the partner's diagnosis of dementia. The influence of the disease on the health behavior of spouses showing two directions of positive change and negative change in the life course of coping with the challenges of dementia together(Figure 2).
1 Priming-leaping-coping: Becoming a "smart" caregiver
The positive development of healthy behaviours is a process in which the spouse continually adjusts to life with the PwD, in which context the respondent makes an effort to re-establish balance and continue to participate in life.
1.1 Priming: Start taking care of one’s own health
Spouses shared the process by which they first learned about dementia and realized that their spouse had dementia. First, the spouse passively takes on the role of carer due to the triggering effect of the illness. Often, the factor that forces the spouse to realize the severity of the problem is a life event or a mental behavioural abnormality in the PwD.
"One day, he drove our grandson to school, forgetting about us and going home on his own, I realized that something seemed to be wrong with him." (Spouse 01)
"She started to talk about one thing over and over again, and then in a couple of days she'll bring it up again. " (Spouse 06)
The power of authority plays a notable role in the subconscious mind of the spouse, and the respondent values and trusts the advice provided by health care professionals.
"She forgets things so badly that after washing her face in the morning, she just stands there and doesn’t know what to do. The doctor said that it was Alzheimer's disease." (Spouse 02)
After the discovery of an incurable and serious health problem in their partner, spouses begin to confront dementia and become highly concerned about their own health.
"The doctor said the disease had to do with everything, and I thought I'd get checked out as well because I had a bad memory when I was young." (Spouse 10)
One spouse described the importance of understanding dementia, realizing that the disease is going to be a part of one’s life and that learning about dementia at an early stage can help one prepare for life in the long term.
"I think you have to understand the disease first. It's not just the one who got sick. I'm the primary caregiver... I'm going to be ready for my future; this disease is not like other diseases, and once you accept it, you can move on, that's what I've summed up. If you try to fight it, you will always be in chaos. " (Spouse 09)
Accordingly, spouses make decisions to ensure their own health. "In order to take care of him or her, I have to take care of my health". Spouses are aware of and accept their role as caregivers as well as the facts that their loved ones' nursing needs will increase as the disease continue to progress and that they will face greater challenges. Consideration of the needs of others is often also a motivation for spouses to stay healthy, since they view themselves as having important family responsibilities and fear that these caring tasks will burden their children or others or that they will become a burden to others if they get sick. Therefore, these factors represent a serious warning for spouses in poor health. It is necessary to adjust their physical and mental state as soon as possible to control the development of their own diseases. Regular medical check-ups and healthy lifestyles are the main health behaviours that can promote spouses to detect and reduce the risks they face. Traditional Chinese health culture is very popular among middle-aged and older spouses, and such health care technologies and methods are easy to master and closely related to life.
"I have hypertension and diabetes, and now I have to take care of him, so I have to be even more careful of my health; I'm afraid that I won't be able to take care of him in the future if I get sick." (Spouse 13)
"I often watch that health programme on TV, especially for this disease, expert guidance on diet, yin and yang reconciliation, foot soaking every night, massage points, how to eat in winter to replenish qi and blood ..." (Spouse 05)
1.2 Leaping: Sensitive disease risk perception and control
Spouses experience a progressive deterioration of their partners. PwD's gradual loss of independence and the development of abnormal psycho-behavioural symptoms caused spouses to fear and worry about their future,whether they would get same disease. Identifying and effectively managing the risk of dementia is a crucial step for the spouse’s ability to overcome the impact of dementia. The spouse begins to reflect on and trace the existence of conditions and poor health behaviours that are associated with the risk of developing the disease.
"I'm worried that I will get dementia too, I will not be able to take care of myself, and no one look after him." (Spouse 19)
"Before she got sick, our family ate more salt and meat, I don't pay attention to, I always think that now that our living conditions are better, I can eat whatever I want..." (Spouse 02)
"I think it has a lot to do with personality; he is introverted, and no socializing." (Spouse 16)
At this point, the emergence of active health information-seeking behaviours becomes an important indicator. After taking stock of their own known causes and risks, spouses begin to actively seek support by acquiring external information in an attempt to develop a more comprehensive picture of their experiences to prevent the onset and progression of disease.
"We have a patient group with doctors, I always ask questions, and we share knowledge about dementia. I learn a lot." (Spouse 03)
After becoming spouses of PwD, respondents’ focus shifted towards dementia prevention, diagnosis, and care, authority-seeking, and examining the risks of the disease that they themselves faced. Decision-making based on health information sources influences the trajectory of health behaviours and health outcomes of spouses, and respondents subconsciously and gradually systematize their health behaviours into daily habits.
"Last time at the community activity focusing on dementia, we received a brochure; we now walk every day to ensure that we get some exercise, meat and vegetables. I sometimes take her to her sister's home. I take my blood pressure medication regularly; so does she." (Spouse 04)
"I quit smoking... I'm drinking less alcohol." (Spouse 06)
The support of the external environment provides a strong foundation. When respondents had access to a supportive network that recognized their contributions, internalized a sense of control over their role, and maintained satisfying relationship dynamics with family or friends, they were more likely to have a positive sense of experience. The resulting role engagement increases the spouse's self-actualization and enhances their confidence in coping with daily problems.
Family cohesion is also largely responsible for providing respite for spouses. Traditional Chinese collectivist culture has established strong family-social networks of support, offering spouses their own time as well as clear, agreed-upon and complementary roles and responsibilities; in addition, all family members jointly manage family affairs.
"There are a lot of people in our family who are well connected, my nephew accompanies him to his training ... without me having to worry about it." (Spouse 19)
"I can talk to my friends; it's a lot easier, and my sister helps me look after him. I can go out and have dinner with friends, have my own time." (Spouse 05)
The optimization of the quality of medical services and the introduction of social welfare policies both slowed down the deterioration of the patient's condition and, more importantly, "relieved" the spouse.
"Now, there is this cognitive training; she is a little better, and I can also be a lot easier when she does training, I can do something on my own ... the medicine this year is also included in the health insurance, which saves a lot of money." (Spouse 02)
1.3 Coping: Adapting to a new normal and developing healthy behaviour patterns
Spouses identified their greatest motivation for healthy living as the perceived benefits of such behaviour. With a growing reserve of knowledge about the risks of the disease and constant self-adjustment, the spouse gradually adapts to view caring for the patient and caring for oneself as the new normal and thus becomes able to maintain positive health behaviours, thereby entering a stable and continuous state in which they can build a new, positive life for themselves.
The experience of caring is a learning process based on observation and repeated "trial and error". It is an experience of growth and caring that makes them a stronger, more resilient person. Understanding the illness and considering what went wrong can help a spouse identify the positive aspects of the relationship. "Being able to joke and laugh together makes caring meaningful". Due to the loss of supportive relationships, spouses also learn to be independent and take on greater responsibility for caregiving.
"I like to reminisce with him about the past, which he remembers so well, or talk about when our kids were little; that's when he was emotionally stable, and both of us were happy.(laugh)" (Spouse 01)
"I'm so good now that I can take him to the doctor independently, and I know all the effects of his medicine." (Spouse 14)
After gradually adapting to their new life, the spouse begins to leave the house, return to society and actively integrate into society. A new model of reciprocity with PwD emerges. While caring for PwD, spouses perceive that this process also offers multiple benefits for themselves. This virtuous circle makes their lifestyle develop in a healthier direction.
"I now insist on going to the community centre and taking him most of the time, chatting to neighbours". (Spouse 05)
"Since she has been ill, our family has eaten healthily; we used to know about this, we just couldn't change it, but now that she is ill, we changed." (Spouse 12)
"He exercises, so do I, all synchronized, better together." (Spouse 10)
In the process of constantly adjusting to a new lifestyle, spouses find a balance between caring for their loved ones and taking care of themselves, and they exhibit a significant increase in self-awareness. Seeking the positive meaning of life and care in the process of socializing helps the spouse mitigate the corresponding pressure, improve their sense of self-identity significantly, and experience a sense of belonging in the family and social life. In addition, the patient's dependence on the spouse empowers the spouse. The respondents believe that their role is very valuable, which increases their self-worth.
"I am so satisfied now; I am a better person and more complet, which helps me keep balance. I began to think about my own feelings, I have to be healthy. I got through it." (Spouse 03)
2 Struggling-trudging-silence: The process by which the self is "swallowed"
The spouses described the emergence of their own bad health behaviours and the obstruction of their health behaviours as the process of failing to struggle with the caregiver load, a serious imbalance between self-concern and patient care, a life in which the PwD takes complete priority, the abandonment of their own health, and the process of becoming an "invisible" caregiver.
2.1 Struggling: Denial and contempt
Some spouses have insufficient cognitive reserves, stereotype dementia, believe that dementia is not preventable and unrelated to daily health behaviours, or have an incomplete understanding of risk factors.
"You live a regular life and have a healthy routine; eating and sleeping well is definitely good for your health, but it's a bit doubtful that you can prevent dementia. I'm a bit sceptical; the disease is very complex(shake head)." (Spouse 01)
However, in regard to their perceptions of the relationship between poor health behaviours in life and dementia, spouses once again agree that lifestyle can have some influence on the development of the disease. However, most spouses still have an incomplete understanding of risk factors, leading them to believe that it is sufficient for them to maintain good habits in one aspect of their lives while neglecting other health behaviours.
"I think exercise is the most important thing to keep healthy. ...... I've never really noticed that. I eat more meat and less vegetables." (Spouse 02)
Healthy check-ups can also have a "qualifying effect", leading to the belief that as long as the result is good, spouses have less need to focus on prevention and health behaviours.
"We have yearly medical check-ups and there's nothing wrong with me except that my blood pressure and blood sugar are a bit high, as they are at this age. I don't think I can get it for sure." (Spouse 06)
2.2 Trudging: Self-efficacy is reduced
As the PwD's illness worsens, spouses struggle with the pain of living in imbalance. When the caregiver load exceeds the psychological threshold of the spouse and a sense of caregiver captivity or even role overload emerges, the trajectory of the spouse's health behaviours shifts in a drastically negative direction. Interviewees found it difficult to derive meaning from the roles they were beginning to play, and negative messages from various sources constantly impacted their lives, leaving them with no time for their own health.
"I'm like a wind-up machine; his situation is getting more and more serious. I really can't control it; you can't look at him like a prisoner, but I'm going to become a prisoner." (Spouse 19)
More seriously, the value of self-sacrifice promoted by traditional Chinese culture taught the respondents to "keep going". Spouses experienced the conflict associated with the choice between meeting social expectations and improving their health. It is as if they were constantly wading through the "mud" of caregiving, and in addition to being a caregiver, they were also parents. To avoid burdening their offspring, spouses chose to perform all this work on their own.
"There's no way I'm leaving him behind; what would people think of our family? It's not fair to the kids and him, so you just have to accept it, really." (Spouse 05)
Almost all interviewees mentioned "loneliness", which was in part the result of their inability to communicate with PwD; on the other hand, various factors, such as the spouse's age, poor health, the belief of many people that dementia care is stigmatized, the fear of not being understood, and the spouse's stigma, led to a narrowing of their social circle.
"I used to love having my friends over. I haven't done that since he was sick. He's unstable." (Spouse 03).
Simultaneously, the intensification of family conflicts dealt a serious external blow to spouses. Interviewees complained that the progressive aggravation of dementia led to decreasing positive feedback between spouses: "I miss the old him". A good couple relationship is a key factor in ensuring quality of life and preventing negative outcomes. Couples were saddened by the loss of intimacy and cohesion, feeling that in some sense, the relationship was no longer equal and that the carer-patient status took over their lives.
"It's been almost 50 years, two people who have come through whatever stumbles we've had and are now defeated by this disease; the relationship is gone, and I'm definitely a bit depressed.( bang on the desk)" (Spouse 04)
"It's only with the closest people that he has a temper; he's always polite to others, when I tell people about that terrible state he's in at home, they don't believe, no one believes me, that's the hardest part of it. (sigh)" (Spouse 01)
In addition, the intensification of conflicts within the extended family, the unclear division of labour among family members, and mutual blame exacerbate the psychological pressure on spouses, and negative emotions affect the couple’s life, reduce their quality of life, impede health behaviours, and increase the risk of disease.
"You can't catch the pattern of good days and bad day. His relatives would say I didn't take good care of him(cry)." (Spouse 07)
2.3 Silence: Defeat in the face of struggle
After continually failing in the struggle to maintain balance, the spouse gradually becomes demoralized. Experience a kind of sadness that is associated with foresight after struggling and trudging but nevertheless falling short of the expected values, ultimately leading the spouse to choose to give up and adopt a lifestyle that entirely prioritizes the PwD. The spouse invests considerable effort in this task, sacrificing work and social activities to ensure that he or she plays an active role in the relationship, but this situation lacks reciprocity and mutual support in both directions; thus, the giving role gradually loses momentum. The stress of living as a caregiver erodes the spouse's sense of a predictable and controllable future.
"I had to think about everything; I had never done these things before, and I felt like my brain was stuck, so I just gave up and resigned." (Spouse 17)