511
Journal of Alzheimer’s Disease 43 (2015) 511–518 DOI 10.3233/JAD-141371 IOS Press
General Public Perceptions and Attitudes toward Alzheimer’s Disease from Five Cities in China Fan Zenga,b,1 , Wan-Ting Xiea,d,1 , Yan-Jiang Wangb , Hong-Bo Luoe , Xiang-Qun Shie , Hai-Qiang Zouf , Yue-Qing Zengg , Ya-Fei Lih , Shao-Rong Zhangc and Yan Liana,∗ a Department of Medicine, Teaching and Science, Daping Hospital, Third Military Medical University, Chongqing,
China b Department of Neurology, Daping Hospital, Third Military Medical University, Chongqing, China c Department of Nursing Education, Daping Hospital, Third Military Medical University, Chongqing, China d 201 Hospital of People’s Liberation Army, Dalian, China e Department of Neurology, The General Hospital of Lanzhou Military Command, Lanzhou, China f Department of Neurology, The General Hospital of Guangzhou Military Command, Guangzhou, China g Institute of Molecular and Clinical Medicine, Kunming Medical University, Kunming, China h Department of Epidemiology, College of Preventive Medicine, Third Military Medical University, Chongqing, China
Accepted 16 June 2014
Abstract. Alzheimer’s disease (AD) is the most common type of dementia affecting the aged population worldwide, yet its social perceptions have been less studied. To investigate the perceptions and attitudes toward AD in the Chinese population, a cross-sectional face-to-face survey of 2,000 randomly selected adults was conducted in five representative cities of China. This survey focused on the fear of AD, and the relationship between this variable and each studied factor was analyzed using univariate analysis and multivariate regression analysis. In general, 76.6% of the total respondents had personal fear of developing AD, and such fear was closely related to the proximity to AD and perceived severity of AD, as well as other factors such as gender and self-perceived health. The results strongly suggested that more attention should be paid to public health education of AD, which can only be achieved with the cooperation of government, media, medical institutions, and the community so as to eliminate people’s confusion about AD, relieve their psychological burden, and optimize their health-seeking behavior. Keywords: Alzheimer’s disease, attitude, China, fear, perception
INTRODUCTION Alzheimer’s disease (AD) is the most common type of dementia that affects the aged population all over the world. In China, the prevalence of dementia, AD, and vascular dementia among people aged 65 years and older was reported to be approximately 5.1%, 3.2%, 1 These
authors contribute equally to this work. to: Yan Lian, Department of Medicine, Teaching and Science, Daping Hospital, Third Military Medical University, Chongqing 400042, China. Tel.: +86 23 68757504/23 68711956; E-mail: [email protected]. ∗ Correspondence
and 1.5%, respectively [1]. The incidence of AD was about 6.3 cases per 1000 person-year [2]. This devastating disease often causes loss of memory, disability of daily living, and finally loss of life. Additionally, it brings a heavy economic and psychological burden to patients’ family as well as society [3]. Although there is no cure or effective prevention strategies for AD at present, early and timely diagnosis and intervention will surely improve the management of patients and delay the progression of AD to some extent. Compared with the intensive studies on pathophysiological and molecular mechanisms of AD, its social
ISSN 1387-2877/15/$27.50 © 2015 – IOS Press and the authors. All rights reserved
512
F. Zeng et al. / Perceptions and Attitudes Toward AD in China
perceptions are less studied. Wrong or negative perceptions and attitudes toward AD are harmful for AD patients and their family and caregivers. The Facing Dementia Survey found that the general public and most caregivers in Europe were acutely aware of the consequences of AD, but not the early-stage symptoms or the benefits from early diagnosis, treatment, and care [4, 5]. This lack of awareness along with the misunderstanding of AD, such as confusion about benign memory complaints in normal aging and AD symptoms, could make the family or caregivers of AD patients less aggressive in health-seeking behavior, thus delaying early intervention [6–8]. Fear of AD is shared by people with different cultures and ethnicities, despite a family history of AD [9–13]. And people with more than one relative suffering from AD often have a higher perceived risk than those with only one, due to their knowledge and belief of the genetic risk factors of AD [14]. For people with concerns about developing AD, such fear may somewhat promote their health-seeking behaviors, yet it is harmful to their physical and psychological well-being [7]. On the contrary, two studies conducted in the UK and Turkey reported that the local elderly were not fearful of dementia or AD, and this may be caused by their low life expectancy as well as low awareness of AD and its risk factors [15, 16]. The studies mentioned above emphasized the importance of evaluating the concerns about developing AD in different cultures [6, 9, 17]. Since a growing number of older people are affected by AD with the emerging aging crisis in China, it is crucial to know and understand perceptions and attitudes toward AD among the general public in China. It can also help improve the effects of health education. In addition, due to culture differences, the perceptions of AD from Chinese people might be different from those from the western populations. There has been no such kind of study in China so far. Can Chinese people distinguish AD symptoms from benign memory complaints which are related to normal aging? Do they fear developing AD? Do AD patients face discrimination? To address these questions, we conducted the present research to investigate perceptions and attitudes toward AD among the general public in China. MATERIALS AND METHODS
Guangzhou, Lanzhou, Kunming, and Mudanjiang (see Supplementary Fig. 1), to evaluate the perceptions and attitudes of the Chinese population toward AD, from January to December 2013. Stratified sampling was used. The sample size was predetermined as 2,000, and the respondents were divided into three age groups: young (18–34 years old), middle (35–64 years old), and elderly (≥65 years old) as per the protocol of previous western studies [11]. The number of males and females sampled in each age group was determined according to the proportion of age and gender in the whole population of China obtained from the tabulations of the 2010 population census of China. All respondents were randomly selected in public places such as streets and community centers. This study was approved by the Institutional Review Board of Daping Hospital for ethical considerations. Before the beginning of each investigation, the respondents were informed that the survey was about aging so as not to influence their response to openended questions and perceptions about AD. Verbal consents were obtained for all respondents, and the survey was done anonymously in order to protect their privacy. The questionnaire data were input into a computer by a data recording company which was blind to the design and purpose of the study. Instruments The questionnaire was designed based on previous studies [9, 11], translated and adjusted by sociologists and neuropsychiatric experts to make sure that the questionnaire was suitable for the Chinese population. The respondents were asked how much they fear developing AD, and this item was defined as the dependent variable. Meanwhile, they were asked similar questions about how much they fear other seven diseases or health risks, including AIDS, hepatitis B, pulmonary tuberculosis, depression, heart problems, traffic accidents, and cancer. The order of the eight items was randomly arranged for each interview. Each item was rated on a five-point scale ranging from 0 (not at all) to 4 (very much). All answers were recorded as a binary variable (0 = “unfamiliar with the disease”, “not at all” or “not really”; 1 = “a little” or “very much”). The proportions of people who had fear of these diseases and health risks were analyzed. The independent variables were as follows:
Study population The cross-sectional face-to-face interview was performed in five cities of China including Chongqing,
Perceived severity of AD: The respondents were asked to list at least one disease that they believed to be most serious. The answers were recorded as a binary
F. Zeng et al. / Perceptions and Attitudes Toward AD in China
variable according to whether AD was mentioned or not (0 = “AD was among one of the perceived serious diseases”; 1 = “AD was not among one of the perceived serious diseases”). Level of knowledge about AD: Two sets of items, six items in each, were used for evaluating the level of knowledge about AD. The respondents were asked the first set of questions to rate how closely the six signs or symptoms were related to the early stage of AD, among which three were related (for example, “to have trouble in finding the way home”) and the rest were not (for example, “to have a headache”). Each item was rated on a five-point scale ranging from 0 to 4 (not known, completely disagree, disagree, agree, and completely agree). Similarly, the respondents were asked the second set of questions to evaluate whether the listed factors were effective in the prevention of AD, among which three were considered effective (for example, “to read, play chess or mahjong often”) and the rest were not (for example, “to live in a polluted environment”). Two composite scores were created from the two sets of items above respectively (range 0–24), with higher scores indicating higher level of knowledge about AD. The internal consistency were also acceptable, with Cronbach’s ␣ = 0.82 for the former score and Cronbach’s ␣ = 0.70 for the latter. Proximity to AD: The respondents were asked “Do you have any relative, friend or workmate suffering from AD”. If they did, they were further asked whether they have taken care of the patients. The proximity to AD was recorded as a three-point scale (0 = “not know someone with AD”; 1 = “know someone with AD”; 2 = “taken care of someone with AD”). Opinions and beliefs on AD: The respondents were asked if they agree with the following opinions or beliefs: “It is normal to get dementia when you get old”; “There is nothing we can do to prevent Alzheimer’s disease for now”; “We can cure patients of Alzheimer’s disease with existing medication and treatment”; “Nowadays, more and more people are getting senile dementia”; “The patients of Alzheimer’s disease will bring heavy burden to their families”; “Generally, Alzheimer’s disease is an inherited disease”. The answers for each item were recorded as a binary variable (0 = “disagree”; 1 = “agree”). Self-perceived health: The respondents were asked one single item to assess their self-perceived health. The four-point scale was recorded as a binary variable (0=”poor to very poor”; 1 = ” excellent to good”).
513
Source of AD-related information: A single question was asked to see whether people thought they were well informed about the disease: “Do you think you are well informed of AD by the government, media, or medical institutions”. The results were recorded as a binary variable (0 = “not known; disagree”; 1 = “agree”). Social discrimination: The respondents were asked “Do you think there is discrimination against AD patients” to see if social discrimination existed. The results were recorded as a binary variable (0 = “not known; disagree”; 1 = “agree”). Sociodemographic characteristics: The sociodemographic variables includes: age (0 = “18–34 years”; 1 = “35–64 years”; 2 = “above 65 years”), gender (0 = “male”; 1 = “female”), level of education (0=“lower than secondary”; 1 = “secondary or higher”), occupation (0=“blue collar”; 1 = “white collar”), medical worker (0 = “no”; 1 = “yes”), living conditions (0 = “alone”; 1 = “cohabitant with younger relatives”; 2 = “cohabitant with elder relatives”), level of income per consumption unit (0 = “less than − Y 2000/month; 1 = “between − Y 2000 and − Y 5000/month”; 2 = “more than − Y 5000/month”), and medical insurance (0 = “selfpayment”; 1 = “commercial insurance”; 2 = “urban medicare”; 3 = ”rural cooperative medicare”). Statistical analysis Percentages, means, and standard deviations were used to describe binary variables and continuous variables respectively. Chi-square and t-tests were applied for univariate analysis to assess the association between the fear of AD and each independent variable. The significant variables in univariate analysis as well as all sociodemographic variables were included in multivariate regression analysis. The final model was built with stepwise method to further explore which independent variables remained to be associated with the fear of AD. Statistical analysis was performed using PASW 18.0 for windows (SPSS, Inc, Chicago, IL). All of the statistical tests were two-sided, with statistical significance set at 0.05. RESULTS The characteristics of the 2,000 studied Chinese adults are shown in Table 1. Because the structure of sample matched the data of the latest population census of China and was recruited from five different
514
F. Zeng et al. / Perceptions and Attitudes Toward AD in China Table 1 Characteristics of sample (n = 2,000)
Characteristics Age 18–34 years old 35–64 years old ≥65 years old Female Secondary level of education and higher Occupation blue collar white collar Medical staff Income per month − Y 5000 Poor self-perceived health Proximity to AD Known someone with AD Cared for someone with AD Fear of developing AD
Public education of AD and discrimination against AD patients
Observations
Percent
699 1076 225 990 953
35.0% 53.8% 11.2% 49.5% 47.7%
Most respondents (89.6%) thought that they were not well informed of AD from public education by the government, media, or medical institutions. 35.0% believed that there is indeed social discrimination against AD patients.
1307 693 281
65.3% 34.7% 14.1%
Personal fear of developing AD and other diseases
890 856 254 1333
44.5% 42.8% 12.7% 66.7%
456 218 1531
22.8% 10.9% 76.6%
cities, the sample of this investigation is considered to be representative of the national Chinese population. The level of knowledge about AD The composite scores of knowledge were 14.76 ± 3.36 on the AD-related symptoms and 14.37 ± 2.99 on the prevention of AD. The lack of knowledge mainly focused on two specific items. That is, only 25.9% and 19.4% of the respondents were correct about the relationship between air pollution, introvert personality, and AD. However, as shown in Table 2, there was no difference in two composite scores between people who have or do not have personal fear of developing AD. Beliefs and opinions about AD In this study, 77.4% of the respondents agreed that AD patients would bring heavy burden to their families. And to our surprise, 64.2% of the respondents responded correctly to the statement that AD is not usually an inherited disease, which is much higher than the proportion reported in a previous study [9]. Although the knowledge of AD was considered not low according to the scores mentioned above, there are still 38.1% of the respondents who thought it is normal to get AD during aging. Moreover, only 38.1% and 50.1% of the respondents were right about the fact that we cannot cure or prevent AD using existing strategies, respectively. And 41.2% of the respondents were not aware of the increasing number of AD patients.
According to the answers to the open-end question, “cancer/tumor” was mostly cited (by 67.8% of the respondents) while only 206 respondents (10.6%) cited AD during the interview. There were a total of 1,531 (76.6%) respondents who had personal fear of developing AD, and 427 (21.4%) respondents reported to be not concerned at all. Although this proportion is much higher than that in previous studies [9, 11], AD was reported to cause more fear than depression and hepatitis B. As shown in Fig. 1, cancer, traffic accidents, and heart problems are the three issues people fear most.
The relationship of independent variables and the fear of AD Firstly, the relationship of each independent variables and the fear of AD (the dependent variable) was analyzed by Chi-square test and t-test (Table 2). The results suggested that the fear of developing AD was associated with gender, medical insurance, self-perceived health, proximity to AD, perceived severity of AD, and people’s opinion about “More and more people are getting senile dementia”. Then these associated independent variables and all sociodemographic variables were entered into multivariate regression analysis (Table 3). The results demonstrated that the fear of developing AD was associated with gender (female, OR = 1.421; 95% CI = 1.146–1.762; p < 0.01), poor self-perceived health (OR = 2.046; 95% CI = 1.645–2.545; P < 0.01), perceived severity of AD (OR = 5.937; 95% CI = 3.191–11.045; p < 0.01), and the proximity to AD (OR = 1.237; 95% CI=1.045–1.464; p < 0.05). Such fear was more frequently shared by people who agreed that “More and more people are getting senile dementia” (OR = 1.435; 95% CI = 1.157–1.780; p < 0.01). The association between the fear of developing AD and medical insurance did not retain in this model.
F. Zeng et al. / Perceptions and Attitudes Toward AD in China
515
Table 2 Univariate analysis of the relationship between each independent variables and the fear of AD Independent variables Age 18–34 years old 35–64 years old ≥65 years old Gender Male Female Level of education Lower than secondary Secondary and higher Occupation blue collar white collar Medical staff Yes No Living conditions Alone Live with children Live with the elder Income per month − Y 5000 Medical insurance self pay commercial insurance urban medical insurance rural cooperative medical insurance Self-perceived health Good Poor Proximity to AD Not known someone with AD Known someone with AD Cared for someone with AD Composite scores on AD-related symptomsa Composite scores on preventionsa Perceived severity of AD Serious Not serious It is normal to get dementia when you get old Agree Disagree We cannot prevent Alzheimer’s disease now Agree Disagree We can cure patients of Alzheimer’s disease now Agree Disagree More and more people are getting Alzheimer’s disease Agree Disagree The patients of Alzheimer’s disease will bring heavy burden to their families Agree Disagree
Percent of people who have fear of AD
χ2 value/ t value
p value
73.7% 78.5% 76.6%
5.606
0.061
73.0% 80.2%
14.565
Journal of Alzheimer’s Disease 43 (2015) 511–518 DOI 10.3233/JAD-141371 IOS Press
General Public Perceptions and Attitudes toward Alzheimer’s Disease from Five Cities in China Fan Zenga,b,1 , Wan-Ting Xiea,d,1 , Yan-Jiang Wangb , Hong-Bo Luoe , Xiang-Qun Shie , Hai-Qiang Zouf , Yue-Qing Zengg , Ya-Fei Lih , Shao-Rong Zhangc and Yan Liana,∗ a Department of Medicine, Teaching and Science, Daping Hospital, Third Military Medical University, Chongqing,
China b Department of Neurology, Daping Hospital, Third Military Medical University, Chongqing, China c Department of Nursing Education, Daping Hospital, Third Military Medical University, Chongqing, China d 201 Hospital of People’s Liberation Army, Dalian, China e Department of Neurology, The General Hospital of Lanzhou Military Command, Lanzhou, China f Department of Neurology, The General Hospital of Guangzhou Military Command, Guangzhou, China g Institute of Molecular and Clinical Medicine, Kunming Medical University, Kunming, China h Department of Epidemiology, College of Preventive Medicine, Third Military Medical University, Chongqing, China
Accepted 16 June 2014
Abstract. Alzheimer’s disease (AD) is the most common type of dementia affecting the aged population worldwide, yet its social perceptions have been less studied. To investigate the perceptions and attitudes toward AD in the Chinese population, a cross-sectional face-to-face survey of 2,000 randomly selected adults was conducted in five representative cities of China. This survey focused on the fear of AD, and the relationship between this variable and each studied factor was analyzed using univariate analysis and multivariate regression analysis. In general, 76.6% of the total respondents had personal fear of developing AD, and such fear was closely related to the proximity to AD and perceived severity of AD, as well as other factors such as gender and self-perceived health. The results strongly suggested that more attention should be paid to public health education of AD, which can only be achieved with the cooperation of government, media, medical institutions, and the community so as to eliminate people’s confusion about AD, relieve their psychological burden, and optimize their health-seeking behavior. Keywords: Alzheimer’s disease, attitude, China, fear, perception
INTRODUCTION Alzheimer’s disease (AD) is the most common type of dementia that affects the aged population all over the world. In China, the prevalence of dementia, AD, and vascular dementia among people aged 65 years and older was reported to be approximately 5.1%, 3.2%, 1 These
authors contribute equally to this work. to: Yan Lian, Department of Medicine, Teaching and Science, Daping Hospital, Third Military Medical University, Chongqing 400042, China. Tel.: +86 23 68757504/23 68711956; E-mail: [email protected]. ∗ Correspondence
and 1.5%, respectively [1]. The incidence of AD was about 6.3 cases per 1000 person-year [2]. This devastating disease often causes loss of memory, disability of daily living, and finally loss of life. Additionally, it brings a heavy economic and psychological burden to patients’ family as well as society [3]. Although there is no cure or effective prevention strategies for AD at present, early and timely diagnosis and intervention will surely improve the management of patients and delay the progression of AD to some extent. Compared with the intensive studies on pathophysiological and molecular mechanisms of AD, its social
ISSN 1387-2877/15/$27.50 © 2015 – IOS Press and the authors. All rights reserved
512
F. Zeng et al. / Perceptions and Attitudes Toward AD in China
perceptions are less studied. Wrong or negative perceptions and attitudes toward AD are harmful for AD patients and their family and caregivers. The Facing Dementia Survey found that the general public and most caregivers in Europe were acutely aware of the consequences of AD, but not the early-stage symptoms or the benefits from early diagnosis, treatment, and care [4, 5]. This lack of awareness along with the misunderstanding of AD, such as confusion about benign memory complaints in normal aging and AD symptoms, could make the family or caregivers of AD patients less aggressive in health-seeking behavior, thus delaying early intervention [6–8]. Fear of AD is shared by people with different cultures and ethnicities, despite a family history of AD [9–13]. And people with more than one relative suffering from AD often have a higher perceived risk than those with only one, due to their knowledge and belief of the genetic risk factors of AD [14]. For people with concerns about developing AD, such fear may somewhat promote their health-seeking behaviors, yet it is harmful to their physical and psychological well-being [7]. On the contrary, two studies conducted in the UK and Turkey reported that the local elderly were not fearful of dementia or AD, and this may be caused by their low life expectancy as well as low awareness of AD and its risk factors [15, 16]. The studies mentioned above emphasized the importance of evaluating the concerns about developing AD in different cultures [6, 9, 17]. Since a growing number of older people are affected by AD with the emerging aging crisis in China, it is crucial to know and understand perceptions and attitudes toward AD among the general public in China. It can also help improve the effects of health education. In addition, due to culture differences, the perceptions of AD from Chinese people might be different from those from the western populations. There has been no such kind of study in China so far. Can Chinese people distinguish AD symptoms from benign memory complaints which are related to normal aging? Do they fear developing AD? Do AD patients face discrimination? To address these questions, we conducted the present research to investigate perceptions and attitudes toward AD among the general public in China. MATERIALS AND METHODS
Guangzhou, Lanzhou, Kunming, and Mudanjiang (see Supplementary Fig. 1), to evaluate the perceptions and attitudes of the Chinese population toward AD, from January to December 2013. Stratified sampling was used. The sample size was predetermined as 2,000, and the respondents were divided into three age groups: young (18–34 years old), middle (35–64 years old), and elderly (≥65 years old) as per the protocol of previous western studies [11]. The number of males and females sampled in each age group was determined according to the proportion of age and gender in the whole population of China obtained from the tabulations of the 2010 population census of China. All respondents were randomly selected in public places such as streets and community centers. This study was approved by the Institutional Review Board of Daping Hospital for ethical considerations. Before the beginning of each investigation, the respondents were informed that the survey was about aging so as not to influence their response to openended questions and perceptions about AD. Verbal consents were obtained for all respondents, and the survey was done anonymously in order to protect their privacy. The questionnaire data were input into a computer by a data recording company which was blind to the design and purpose of the study. Instruments The questionnaire was designed based on previous studies [9, 11], translated and adjusted by sociologists and neuropsychiatric experts to make sure that the questionnaire was suitable for the Chinese population. The respondents were asked how much they fear developing AD, and this item was defined as the dependent variable. Meanwhile, they were asked similar questions about how much they fear other seven diseases or health risks, including AIDS, hepatitis B, pulmonary tuberculosis, depression, heart problems, traffic accidents, and cancer. The order of the eight items was randomly arranged for each interview. Each item was rated on a five-point scale ranging from 0 (not at all) to 4 (very much). All answers were recorded as a binary variable (0 = “unfamiliar with the disease”, “not at all” or “not really”; 1 = “a little” or “very much”). The proportions of people who had fear of these diseases and health risks were analyzed. The independent variables were as follows:
Study population The cross-sectional face-to-face interview was performed in five cities of China including Chongqing,
Perceived severity of AD: The respondents were asked to list at least one disease that they believed to be most serious. The answers were recorded as a binary
F. Zeng et al. / Perceptions and Attitudes Toward AD in China
variable according to whether AD was mentioned or not (0 = “AD was among one of the perceived serious diseases”; 1 = “AD was not among one of the perceived serious diseases”). Level of knowledge about AD: Two sets of items, six items in each, were used for evaluating the level of knowledge about AD. The respondents were asked the first set of questions to rate how closely the six signs or symptoms were related to the early stage of AD, among which three were related (for example, “to have trouble in finding the way home”) and the rest were not (for example, “to have a headache”). Each item was rated on a five-point scale ranging from 0 to 4 (not known, completely disagree, disagree, agree, and completely agree). Similarly, the respondents were asked the second set of questions to evaluate whether the listed factors were effective in the prevention of AD, among which three were considered effective (for example, “to read, play chess or mahjong often”) and the rest were not (for example, “to live in a polluted environment”). Two composite scores were created from the two sets of items above respectively (range 0–24), with higher scores indicating higher level of knowledge about AD. The internal consistency were also acceptable, with Cronbach’s ␣ = 0.82 for the former score and Cronbach’s ␣ = 0.70 for the latter. Proximity to AD: The respondents were asked “Do you have any relative, friend or workmate suffering from AD”. If they did, they were further asked whether they have taken care of the patients. The proximity to AD was recorded as a three-point scale (0 = “not know someone with AD”; 1 = “know someone with AD”; 2 = “taken care of someone with AD”). Opinions and beliefs on AD: The respondents were asked if they agree with the following opinions or beliefs: “It is normal to get dementia when you get old”; “There is nothing we can do to prevent Alzheimer’s disease for now”; “We can cure patients of Alzheimer’s disease with existing medication and treatment”; “Nowadays, more and more people are getting senile dementia”; “The patients of Alzheimer’s disease will bring heavy burden to their families”; “Generally, Alzheimer’s disease is an inherited disease”. The answers for each item were recorded as a binary variable (0 = “disagree”; 1 = “agree”). Self-perceived health: The respondents were asked one single item to assess their self-perceived health. The four-point scale was recorded as a binary variable (0=”poor to very poor”; 1 = ” excellent to good”).
513
Source of AD-related information: A single question was asked to see whether people thought they were well informed about the disease: “Do you think you are well informed of AD by the government, media, or medical institutions”. The results were recorded as a binary variable (0 = “not known; disagree”; 1 = “agree”). Social discrimination: The respondents were asked “Do you think there is discrimination against AD patients” to see if social discrimination existed. The results were recorded as a binary variable (0 = “not known; disagree”; 1 = “agree”). Sociodemographic characteristics: The sociodemographic variables includes: age (0 = “18–34 years”; 1 = “35–64 years”; 2 = “above 65 years”), gender (0 = “male”; 1 = “female”), level of education (0=“lower than secondary”; 1 = “secondary or higher”), occupation (0=“blue collar”; 1 = “white collar”), medical worker (0 = “no”; 1 = “yes”), living conditions (0 = “alone”; 1 = “cohabitant with younger relatives”; 2 = “cohabitant with elder relatives”), level of income per consumption unit (0 = “less than − Y 2000/month; 1 = “between − Y 2000 and − Y 5000/month”; 2 = “more than − Y 5000/month”), and medical insurance (0 = “selfpayment”; 1 = “commercial insurance”; 2 = “urban medicare”; 3 = ”rural cooperative medicare”). Statistical analysis Percentages, means, and standard deviations were used to describe binary variables and continuous variables respectively. Chi-square and t-tests were applied for univariate analysis to assess the association between the fear of AD and each independent variable. The significant variables in univariate analysis as well as all sociodemographic variables were included in multivariate regression analysis. The final model was built with stepwise method to further explore which independent variables remained to be associated with the fear of AD. Statistical analysis was performed using PASW 18.0 for windows (SPSS, Inc, Chicago, IL). All of the statistical tests were two-sided, with statistical significance set at 0.05. RESULTS The characteristics of the 2,000 studied Chinese adults are shown in Table 1. Because the structure of sample matched the data of the latest population census of China and was recruited from five different
514
F. Zeng et al. / Perceptions and Attitudes Toward AD in China Table 1 Characteristics of sample (n = 2,000)
Characteristics Age 18–34 years old 35–64 years old ≥65 years old Female Secondary level of education and higher Occupation blue collar white collar Medical staff Income per month − Y 5000 Poor self-perceived health Proximity to AD Known someone with AD Cared for someone with AD Fear of developing AD
Public education of AD and discrimination against AD patients
Observations
Percent
699 1076 225 990 953
35.0% 53.8% 11.2% 49.5% 47.7%
Most respondents (89.6%) thought that they were not well informed of AD from public education by the government, media, or medical institutions. 35.0% believed that there is indeed social discrimination against AD patients.
1307 693 281
65.3% 34.7% 14.1%
Personal fear of developing AD and other diseases
890 856 254 1333
44.5% 42.8% 12.7% 66.7%
456 218 1531
22.8% 10.9% 76.6%
cities, the sample of this investigation is considered to be representative of the national Chinese population. The level of knowledge about AD The composite scores of knowledge were 14.76 ± 3.36 on the AD-related symptoms and 14.37 ± 2.99 on the prevention of AD. The lack of knowledge mainly focused on two specific items. That is, only 25.9% and 19.4% of the respondents were correct about the relationship between air pollution, introvert personality, and AD. However, as shown in Table 2, there was no difference in two composite scores between people who have or do not have personal fear of developing AD. Beliefs and opinions about AD In this study, 77.4% of the respondents agreed that AD patients would bring heavy burden to their families. And to our surprise, 64.2% of the respondents responded correctly to the statement that AD is not usually an inherited disease, which is much higher than the proportion reported in a previous study [9]. Although the knowledge of AD was considered not low according to the scores mentioned above, there are still 38.1% of the respondents who thought it is normal to get AD during aging. Moreover, only 38.1% and 50.1% of the respondents were right about the fact that we cannot cure or prevent AD using existing strategies, respectively. And 41.2% of the respondents were not aware of the increasing number of AD patients.
According to the answers to the open-end question, “cancer/tumor” was mostly cited (by 67.8% of the respondents) while only 206 respondents (10.6%) cited AD during the interview. There were a total of 1,531 (76.6%) respondents who had personal fear of developing AD, and 427 (21.4%) respondents reported to be not concerned at all. Although this proportion is much higher than that in previous studies [9, 11], AD was reported to cause more fear than depression and hepatitis B. As shown in Fig. 1, cancer, traffic accidents, and heart problems are the three issues people fear most.
The relationship of independent variables and the fear of AD Firstly, the relationship of each independent variables and the fear of AD (the dependent variable) was analyzed by Chi-square test and t-test (Table 2). The results suggested that the fear of developing AD was associated with gender, medical insurance, self-perceived health, proximity to AD, perceived severity of AD, and people’s opinion about “More and more people are getting senile dementia”. Then these associated independent variables and all sociodemographic variables were entered into multivariate regression analysis (Table 3). The results demonstrated that the fear of developing AD was associated with gender (female, OR = 1.421; 95% CI = 1.146–1.762; p < 0.01), poor self-perceived health (OR = 2.046; 95% CI = 1.645–2.545; P < 0.01), perceived severity of AD (OR = 5.937; 95% CI = 3.191–11.045; p < 0.01), and the proximity to AD (OR = 1.237; 95% CI=1.045–1.464; p < 0.05). Such fear was more frequently shared by people who agreed that “More and more people are getting senile dementia” (OR = 1.435; 95% CI = 1.157–1.780; p < 0.01). The association between the fear of developing AD and medical insurance did not retain in this model.
F. Zeng et al. / Perceptions and Attitudes Toward AD in China
515
Table 2 Univariate analysis of the relationship between each independent variables and the fear of AD Independent variables Age 18–34 years old 35–64 years old ≥65 years old Gender Male Female Level of education Lower than secondary Secondary and higher Occupation blue collar white collar Medical staff Yes No Living conditions Alone Live with children Live with the elder Income per month − Y 5000 Medical insurance self pay commercial insurance urban medical insurance rural cooperative medical insurance Self-perceived health Good Poor Proximity to AD Not known someone with AD Known someone with AD Cared for someone with AD Composite scores on AD-related symptomsa Composite scores on preventionsa Perceived severity of AD Serious Not serious It is normal to get dementia when you get old Agree Disagree We cannot prevent Alzheimer’s disease now Agree Disagree We can cure patients of Alzheimer’s disease now Agree Disagree More and more people are getting Alzheimer’s disease Agree Disagree The patients of Alzheimer’s disease will bring heavy burden to their families Agree Disagree
Percent of people who have fear of AD
χ2 value/ t value
p value
73.7% 78.5% 76.6%
5.606
0.061
73.0% 80.2%
14.565
