Characteristics of the Participants. Five caregivers participated in the Group 1 focus group which centred on “association between air pollution and dementia”, and six professionals participated in the Group 2 focus group on “preventive measures against dementia and air pollution”. The characteristics of the participants are presented in Table 1.
Table 1
Characteristics of the Participants (N = 11)
Group | Respondent | Sex | Age Range | Education Level |
1 | 1 | Female | 61–70 | Senior high school |
1 | 2 | Male | 25–30 | College |
1 | 3 | Female | 31–40 | College |
1 | 4 | Female | 51–60 | Senior high school |
1 | 5 | Male | 41–50 | Senior high school |
2 | 6 | Male | 25–30 | Master of public health |
2 | 7 | Male | 31–40 | Master of clinic medicine |
2 | 8 | Male | 41–50 | College |
2 | 9 | Male | 41–50 | Doctor |
2 | 10 | Female | 41–50 | Master of public health |
2 | 11 | Male | 31–40 | Master of clinic medicine |
Four themes were identified from the analysis: (1) dementia diagnosis, interventions and stigma in China; (2) linking air pollution and dementia; (3) reducing dementia risk; (4) preventive measures against air pollution. Although the research aim was to evaluate the perceptions of the association of air pollution with dementia and perceptions of preventive measures of air pollution and dementia, participants discussed the topic of dementia diagnosis, intervention, and stigma in China before we were able to discuss the topics in the guide, each theme is described in the following sections.
Theme 1: Dementia diagnosis, Interventions and Stigma
Participants in each group underlined the need to talk about dementia diagnosis status in China based on their experiences and observation. For example, the participants thought the dementia diagnosis rate is very low in China: ‘I know several older people who have symptoms of dementia, but they did not have a diagnosis by the doctor’ (Group 1, Female, 61–70 years). A neurologist responded that “the rate of dementia diagnosis in China is about 20%, most people with dementia were not diagnosed”. (Group 2, Male, 41–50 years) Dementia that was not diagnosed will not be well treated and timely interventions to support them may not be introduced. For instance, “we provide health management services to patients with dementia diagnosis in the community to improve their health quality, but people who are not diagnosed were not able to have these services” (Group 2, Female, 31–40 years).
Early diagnosis helps to prevent and control dementia and delay its progress. Low rate of dementia diagnosis in China is likely due to two reasons. Firstly, stigma of dementia: ‘in traditional Chinese culture, people who were diagnosed with dementia were considered to be mentally ill, and their family member feel shame’ (Group 1, Female, 61–70 years). Secondly, people lack knowledge on dementia diagnosis, treatment, and prevention: ‘on one hand, most people thought dementia is not inevitable or it is a normal phenomenal with age increase; on the other hand, there is no treatment for dementia; furthermore, there are not enough professionals engaged in dementia's prevention and control in China’. (Group 2, Female, 41–50 years)
Theme 2: Linking air pollution and dementia
Sub-theme: Views on association between air pollution and dementia. Most participants thought that air pollution was associated with dementia. However, the perceptions varied between caregiving participants, regardless of their age, gender, and educational level. One participant was unsure about the association between air pollution and dementia, due to lacking related knowledge or experiences: “I am not sure whether this is associated with dementia, from my understanding, air pollution may cause respiratory disease but not dementia” (Group 1, Female, 51–60 years). Participants with different educational level appear to have different views on the association between air pollution and dementia: “The risk of dementia is increasing with age increased, also it is associated with genetic and some unhealthy lifestyle, including obesity, smoking; it could be consequent of other diseases, like stroke, Parkinson and deaf. Therefore, air pollution may associate with dementia.” (Group 1, Female 31–40 years).
Sub-theme: Knowledge on association between air pollution and dementia. Most caregivers or family member of dementia lack knowledge on association between air pollution and dementia, some of them perceive the association between air pollution and dementia based on their clinic health education: ‘I did not realize that air pollution is associated with dementia until my doctor told me that air pollution may increase the risk of stroke, which is associated with dementia’ (Group 1, Female 61–70 years). While some perceive this association based on their own direct experience of observing that people who have dementia live near a busy highway or main road (which is proxy of air pollution), or whose working environment suffers from air pollution: ‘I know an elder with dementia who lives very close to main road, but she may be 90 years old’ (Group 1, Male, 25–30 years). Health professionals have more knowledge on association between air pollution and dementia, some of them have a more complex conception of the causes of dementia and the interrelationship of lifestyle and environmental factors based on their experiential, academic or professional knowledge: ‘Many factors contribute to dementia, and the relationship between these factors are complex, in clinical practice, stroke is one of the main etiologies of dementia, while previous study has suggested stroke is associated with air pollution’ (Group 2, Male, 25–30 years). An environmental scientist reported that “in fact, smoking is common type of air pollution, which is a risk factor for dementia” (Group 2, Male, 41–50 years). Despite of this, all participants thought that air pollution is not cause, or not the main and direct cause of dementia, “I think air pollution may have impact on dementia risk, but its’ impaction may be indirectly” (Group 1, Male, 41–50 years).
Theme 3: Reducing dementia risk
Although there is no known cure for dementia, most participants believed that dementia is preventable, or at least the onset of dementia could be delayed through appropriate interventions. The participants perceived these preventive measures for dementia should be similar to other chronic disease: ‘Like other preventive measures of non-infectious chronic diseases, dementia prevention measures can also be divided into three levels’ (Group 2, Male, 25–30 years). Firstly, etiology prevention, which refers to reducing exposure to risk factors from genetic, environment and lifestyle. The majority of caregivers and family members of patient with dementia know little about etiology preventive measures of dementia: “I only know dementia came about with age increase” (Group 1, Female, 51–60 years), however, most health professionals reported that lifestyle factors can be modified to reduce the risk of dementia: ‘Based on the current knowledge, some lifestyle may contribute to dementia, such as keep exercise, healthy body mass index, quit smoking, etc.’ (Group 2, Male, 25–30 years). Most health professionals believed that some traditional Chinese cultural practices could reduce the risk of dementia, including majiang, Tai-chi, chess: ‘I know many older people who are not dementia but their exposure to many risk factors, including smoke, diabetes and hearing loss, I found they play majing or chess every day, so I think these activities may be preventive against dementia.’ (Group 2, Female, 31–40 years). Most participants also felt that living with younger people could reduce dementia risk: “keeping young physique and mind, including take exercise, living with young, more communicate with the young could be preventive against dementia” (Group 2, Female, 31–40 years).
Most participants knew that early detection of dementia is helpful in preventing the progress of dementia: ‘we did memory test for people who are older than 65 years every year for screening dementia or cognitive impairment, so people who at early stage of dementia or cognitive impairment could be intervened to delay the progress’ (Group 2, Male, 41–50 years). However, health professional perceived many people who screened to have dementia symptoms were not further diagnosed, which deprived them of access to health management: “we managed people who have been cognitive impairment or dementia to slow down their disease progression, but these people need further tests to determine their condition before regular management was provided” (Group 2, Male 31–40). Caregivers felt there are more and more dementia who are looking after by health professionals: ‘Ten years ago, family members take care of the patient with dementia at home, but more and more patients with dementia are send to dementia care center’ (Group 1, Female, 51–60 years).
In clinical practice, health professionals prescribe health education for the patients with dementia other than medicine, however health education is not seen as specific to dementia: ‘Currently, there is no prevention and treatment guidelines for dementia, 2020 report of the lancet commission has pointed that there are 11 specific potentially modifiable risk factors for dementia, included those in early life (education), midlife (hypertension, obesity, bearing loss, Traumatic brain injuries), and later life (smoking, depression, physical inactivity, social isolation, diabetes and air pollution). However, in clinical practice, the health education prescription does not incorporate for all these risk factors, as we do not have powerful evidence, and the deep-seated causes of many risk factors may be the fundamental problems of society, which we cannot solve them’ (Group 2, Male, 31–40 years).
Theme 4: Preventive measures against air pollution
All participants felt that air quality is associated with the health status of human beings. Some of participants reported that unhealthy socio-economic development contributed to air pollution at community, city or national levels: ‘industrialization has led to rapid economic development, but some factories produce a lot of air pollutants’ (Group 2, Male, 25–30 years). Thus, to reduce against air pollution, factories that produced air pollutants should be restricted in government level: “factories that produce air pollution should be restricted regardless of their contribution to economic development” (Group 2, Male, 41–50 years). Participants pointed out that some small companies or private companies need to further strengthen supervision especially in the coastal areas of the country including Guangdong: “it has reported that there were some small companies in Dongguan (the city near Guangzhou) emitted air pollutants at night illegally” (Group 2, Male, 41–50 years).
The second preventive measure against air pollution is to reduce car exhaust and domestic exhaust emissions. Most participants agreed that car emissions are associated with air pollution in most cities of China, although there are strict emission requirements for automobile exhaust: “There are about 3 million cars in Guangzhou, which are one of the main air pollution sources. Additionally, in some rural area, coal is still used for heating and burning, which also is one of the main air pollution sources” (Group 2, Male, 41–50 years). Thus, to reduce car and domestic exhaust emissions that that could prevent against air pollution, measures including using more public transport, bicycle, and walk instead of private cars, and using gas for heating and burning.
The third preventive measure against air pollution mentioned by participants was to develop new energy that produces less air pollutants: “more and more new energies are replacing traditional energy to reduce air pollution, such as solar, photovoltaic, and wind energy et al” (Group 2, Male, 41–50 years). Fourthly, increasing the self-purification capacity of the environment was also seen as an important way to prevent air pollution: “increasing vegetation cover, planting more tresses are help to prevent air pollution” (Group 2, Male, 41–50 years). Additionally, participants reported that to strengthen awareness of environmental protection, the government should develop more polices and advocate low-carbon travel and encourage the development of new low-polluting energy sources. Finally, a key point made in the focus groups was to strengthen global cooperation to jointly control air pollution as one participant said, ‘All life on earth is a community of destiny, and we only have one earth, thus to prevent against air pollution, global cooperation is very important’ (Male, 25–30 years).