The life of people with dementia who have multiple children in rural China: A phenomenological case study

Introduction

Globally, there are around 50 million people living with dementia (WHO, 2020), the rate of dementia is increasing the most in low and middle-income countries (Wang et al., 2019). Dementia is overwhelming for the person with dementia and for their caregivers in terms of dealing with daily activities and cognitive problems (Zhang et al., 2020). It has the potential to erode cognitive abilities and life skills, which can directly affect both the lives of people with dementia and those who care for them. Studies have shown that caregivers of people with dementia carry a high mental and physical burden and have more thoughts of suicide than the general population (Dawood, 2016; Koyama et al., 2017).

At present in China, the number of people living with dementia has reached 10 million (Jia et al., 2020). This places a heavy economic burden, psychological distress and associated physical impacts on the person themselves as well as their family members and society. However, compared with people with dementia in urban areas, a notably higher prevalence of dementia was found in rural areas (Jia et al., 2014). People with dementia in rural areas of China usually have more difficulty accessing health services (Jia et al., 2020). In addition, most people with dementia in rural areas do not have a pension to cover their living and medical costs and have to depend financially on their adult children for everyday necessities and other expenses (Jiang et al., 2016). This situation challenges the quality of life of people with dementia in rural areas and the quality of care provided to them.

In China, family caregiving accounts for a significant proportion of the care provided to people with dementia (Yu et al., 2016). The care of older people has also been viewed as a family responsibility for thousands of years as part of the traditional culture of Confucius’s xiao (filial piety). However, China is currently undergoing a range of sociocultural and demographic changes that have had a significant influence on the capacity and availability of traditional family-based care services. Dementia care services have been impacted more heavily than care for other conditions due to the fact that dementia care requires more physical and psychological support. Moreover, the situation is worse in rural areas as younger and middle-aged adults from these areas are more likely to move to the cities for employment (Zhang et al., 2019). In addition, the situation regarding dementia care services is rendered more complex by a lack of rules and regulations needed for dementia care at a national level, combined with the currently unsustainable financial position of social security and long-term care services for older people (Yang et al., 2021). Moreover, as state orthodoxy, the value of filial piety has always been encouraged by the authorities as a means of reducing the government burden of care for the older population (Chou, 2011). For example, the law of the Protection of the Rights and Interests of older people has defined children’s obligations to their parents.

Consequently, these factors increase the challenges of traditional family-based care services for older people and their family in rural China. Therefore, it is very important to understand the dynamic change of family-based care beyond the social context in order to embed the concept of family responsibility within dementia care services. Previous studies have looked at the difficulties of family caregiving when there is one adult child supporting parents with dementia (due to the one child policy) (Zhang et al., 2019), but hardly any research has explored caregiving difficulties where there are multiple adult children in rural areas under the current social transitions. This study explored the living conditions and life dilemmas faced by multiple family members looking after one person with dementia in a rural area in Henan, China, to gain understanding of the barriers to quality dementia care in this kind of setting, in order to inform policy makers, healthcare providers and other related stakeholders. This study also serves as a ‘window’ into one family’s circumstance of caring for a person with dementia in rural China.

Results

Three themes were identified: (1) Dementia as a normal ageing process or a bad disease; (2) Commitment to and challenges of family caring and (3) Life in rural areas.

Dementia as a normal ageing process or a bad disease

This theme not only highlights the family members’ lack of dementia knowledge, but also discloses the misunderstandings and social attitudes towards people with dementia and their families. For example, family members in the study did not think dementia was a serious health condition. They thought that Chang did not have to go to the hospital as dementia does not affect eating and drinking:

Memory decline is not important, as long as he can eat and drink (Eldest son, Gang).

Both Chang’s children and his wife think that for someone as old as Chang, health problems were normal and that medical interventions were not worthwhile, which lead them to miss the optimal timing for treatment for Chang:

The children take turns to take care of his father, and he is fine now. No need to go to the hospital. He is so old that nothing is worth doing (Spouse, May).

However, Chang’s second daughter thought that dementia was a punishment from God and often took her father to the local temple to burn incense and pray for him to recover. This is a common practice in rural China. The daughter said that she did not know if visiting the temple was useful, but she would be ashamed if she did nothing:

I don't think my father is sick. So, I often take him to the temple to burn incense. My father is just thinking too much. It’s no use taking him to the hospital (Second daughter, Ying).

In this case, dementia is seen by family members as a normal part of the ageing process, or as something bad and shameful. Therefore, no family members were willing to take Chang to see a doctor. As a result, Chang did not get any formal medical support or treatment, even after he had been formally diagnosed at the hospital.

Another issue, social stigma, appears out of the family members’ narratives. All family members explained that they wanted to protect Chang from the stigmatizing attitudes of villagers, relatives, and friends. All of them tried not to disclose Chang’s diagnosis and tended to describe Chang as having depression rather than dementia, which they felt sounded ‘better’, or less stigmatizing, in rural communities:

The neighbours probably knew [about Chang’s suicide attempt and dementia] because they live so close. But we don't talk to other people, we’re worried that the villagers will laugh at us (Eldest son, Gang).

Chang’s children who took part in the study all said that their own children had reached marrying age and they were worried that disclosing their father’s diagnosis would affect their children’s marriage prospects:

None of us tell others about my dad’s real illness. In rural areas, most people worry that dementia is inherited. We don't mention that my dad attempted suicide, we all say nothing. We are very worried that it will affect the marriage of future generations (Second daughter, Ying).

Family members have perceived stigmatization of Chang’s dementia. In this rural setting, where people think dementia is a ‘bad disease’ that can be inherited by the next generation, the level of stigma is considerably worse.

Commitment to and challenges of family caring

This theme reflects the meaning of caregiving for multiple family members when caring for a person with dementia. It also illustrates the challenges and difficulties that were faced by the family members in a specific rural setting. When it came to taking care of their father, Chang’s children had different opinions and feelings of responsibility. His daughters thought that providing care was Chang’s sons’ responsibility, and the two brothers relied on the other to deal with the situation. Thus, no children were willing to take more responsibility to provide the best care for their father, which lead to their father missing the optimal treatment time:

There are no big disagreements, but there are often small disagreements. Brothers and sisters blame each other if someone didn't take care of my dad well or did something wrong. For example, if it’s my brother’s turn to take care of my father. and my brother was busy and didn't have time, he wouldn't do it. My parents would not say anything about it (not being looked after) (Second daughter, Ying).

In China, looking after older parents is a legal obligation for all children. Meanwhile, in Chinese traditional culture, it also falls to the sons to take care of their parents, especially in rural areas where this belief is still popular. As a result, in families with multiple children, more controversies exist over who should shoulder more caregiving responsibility for their older parents. This disagreement between many children is more likely to result in nobody willing to take more responsibility and affects the quality of care for people with dementia.

All family members disapproved of hiring a formal caregiver or sending Chang to a nursing home. They said that in rural areas, few people would hire formal caregivers, and only older people who had no children would go to live in a nursing home. They are worried that the villagers would gossip about them if they employed private careers or placed their parents in a care institution:

Rural families rarely employ nannies to take care of older people. My parents also won't agree with it. It’s the children’s responsibility to take care of my father (Second daughter, Ying).

In China, government policy dictates that only older people who are without children would be sent to government-sponsored public nursing homes. Influenced by this, some people think it is an indecent thing to send their parents to nurse him care. In addition, the traditional Chinese concept of filial piety particularly stresses the responsibility of sons in taking care of their aged parents. Therefore, the family members would feel shame if they sent Chang to a nursing home even though they have difficulties in providing care for Chang.

Life in rural areas

This theme reflects the living conditions of people with dementia and their family members in a rural setting – what the barriers are to providing good quality care to their loved one with dementia. Chang’s children could not provide much everyday help and psychological comfort for him because the children were busy feeding their own family. In the rural areas of China, the household income of most residents is reliant on the small amount of land that they own. Apart from fieldwork, they are also likely to take temporary jobs in cities to earn extra money:

I do garbage collection work. I am very busy with my work and have no holidays. My wife is busy doing housework and farm work. So, we visit my parents occasionally (Eldest son, Gang).

Two of the children in this study have become grandparents; they are busy taking care of their grandchildren as it is an expectation of the traditional culture, so they have even less time to take care of their parents. It is like Chang’s wife, May said:

The children are all married, and my eldest son is almost 60. The eldest daughter is already a grandmother. They all have their own family to take care of, and they have to take care of their grandchildren. We understand that they don’t have time to take care of us (Spouse, May).

The couple’s monthly income is not enough for their living expenses. If Chang goes to the hospital, the medical costs will have to be paid for by his five children. The children who participated in the study said that they did not have enough money to pay for further hospital treatment for their father and that taking their father to the hospital was a drain on what little money they had.

My financial situation is not good and I cannot afford to take my dad to the hospital by myself (Eldest son, Gang).

The economic pressures on rural residents are more likely to be greater than on urban residents as they have no stable monthly income. Most of the households’ income came from seasonal farming and temporary jobs. In many rural areas, parents also have a responsibility to build a house for their sons when they get married. It is also a tradition in China that the parents have a responsibility to pay for their son’s marriage. Therefore, many people in rural areas have to work hard every day to earn enough to meet the costs of these various expenditures. As a consequence, there is significant financial burden because of the costs associated with providing food for both older parents and younger children.

All family members in the study had health problems except for the granddaughter. The health problems of Chang and his wife’s children made it difficult for them to take care of their parents:

I can eat and move, but I am slightly hard of hearing (Spouse).

In the interview with the granddaughter, she reported that her aunties (Chang’s second and youngest daughters) had also appeared to have experienced memory loss in recent years, but neither the family nor themselves had been too concerned with the situation:

My two aunts [the second and youngest daughters] began to have memory decline in recent years. They both thought it was a normal symptom of ageing and did not go to the hospital (Granddaughter, Lily).

Following the trend of emigration, there are hardly any young people who are willing to stay in rural areas. In the study, except for Chang’s granddaughter, the other four are already ageing, they have different health problems, but they have to look after Chang, who has more severe health problems.

Discussion

In China, many people who present with early symptoms of dementia are either diagnosed with other syndromes or in some cases, the symptoms are considered as a part of the ‘normal’ ageing process due to the underdeveloped medical provisions and low awareness of dementia in rural areas (Cahill et al., 2015). As a result, people with dementia are neglected, and their families think there is no need for treatment. Furthermore, there is a common misconception in rural China that dementia is a ‘bad disease’, and that dementia can even be passed on to the next generations. Stigmatizing attitudes could be a major hindrance to get help for people with dementia (Cheng et al., 2011). This makes people living in rural areas reluctant to disclose a diagnosis of dementia and become unwilling to treat it. In the study, Chang’s family members tried to conceal his diagnosis to others for fear of discrimination from the villagers. As a consequence, family members are unwilling to take their loved ones who show symptoms of dementia to see a doctor. In the study, low dementia awareness and social stigma have not only made the people with dementia lose optimal treatment opportunities, but also became barriers to good quality care. Research evidence suggests that early diagnosis and interventions are significant for the person with dementia, their family and society (Rasmussen & Langerman, 2019). This suggests that increasing national dementia awareness and understanding amongst the lay population, especially to increase rural residents’ accessibility and capability to healthcare, are very important issues to be addressed.

In addition, ‘the more sons, the more blessings’ and ‘raise children for one’s old age’ have long been imbedded in Chinese traditional culture. In rural China, older people usually live with their sons, and sons are usually their primary caregivers. If a couple has one son, his parents will live with him. However, when a couple has more than one son, who takes parental care responsibility becomes ambiguous amongst the children. This phenomenon is also presented in this study; the daughters thought that looking after their parents was the two sons’ responsibility. The two sons passed the buck to each other to take responsibility for their dad, which led to Chang not only missing the optimal treatment time but also lacking good quality care from the family. This reflected the defaults in the current healthcare system in China, as healthcare costs are not covered by healthcare insurance. This raises an important issue for central government and the need to address the care of older people living with dementia in rural communities.

Furthermore, it is a tradition that older people take turns living in each son’s home and are looked after by their sons for some time, this is called ‘lun fan’, in the Chinese rural dialect. As the idea of equality between men and women spread, older people also began to ‘lun fan’ in their daughters’ homes. A previous study indicates that ‘lun fan’ has been seen as harmful to older people’s physical and mental health (Richmond et al., 2018), especially people with dementia, because of the frequent change in living and social environments. For people with dementia, unfamiliar living environments can increase the risk of falling and accidents, and unfamiliar social environments can increase the risk of loneliness, confusion and depression (Xidous et al., 2020). The study reveals how traditional family-based care no longer serves the care needs of older people, especially for rural residents who live with dementia.

In this study, the couple’s adult children are ageing and they, too, have various kinds of health problems, which makes it more difficult for them to take care of their older parents. However, with the traditional norm in rural areas, formal caregiving is commonly rejected, and few older people live in nursing homes. Generally, only older people who have no children will move into care homes. If the children of older people hire formal caregivers or if older people with multiple children live in nursing homes, these children will be said to be ‘unfilial’ by villagers, which is a serious matter in the countryside. Therefore, while the government have addressed the healthcare challenges of older people without children (Feng et al., 2020), there is also a need to consider the needs of older people who have no pension but have multiple children in rural areas. Apart from this, in rural China, most rural older people do not have pensions, and the government allowance does not support their daily life and medical expenses. This situation forces older people who have lost the ability to earn an income to depend financially on their adult children. In this study, all participants were under great financial pressures. This suggests that there is a need to reconsider the current healthcare insurance system and how it can be developed to meet the needs of rural dwelling older people who live without pensions.

Conclusions

With the development of China’s economy and the change of rural family lifestyles, traditional home-based care provision in rural areas of China is no longer suitable for people with dementia and their families, even though the person might have multiple children. In the study, family members face numerous difficulties caring for a loved one with dementia, in which lack of knowledge, healthcare cost, multiple family responsibilities, social stigma and related personal issues are the barriers to providing quality care for the person with dementia. The study suggests that more suitable care provisions for people living with dementia in these settings should be further explored. It also suggests that future research focuses on how to increase knowledge, understanding and awareness of dementia in rural communities to improve care and to challenge discriminatory attitudes towards dementia rooted in the unique culture of Chinese rural areas. Finally, the study recommends that urgent consideration is given to better take care of and support people with dementia who do not have pensions in rural China and to improve their quality of life.