Analysis of the data indicated that less than 10% of the participants were either uncertain or were likely to hide the diagnosis of dementia of a family member. This result is in line with the ADI global survey of 2019, which reported that about 91% of survey respondents thought a diagnosis of dementia should not be concealed [4]. However, our findings are in contrast to surveys from residents of Kobe, Japan and Shanghai, China that showed half of respondents would feel ashamed of a family member with dementia and would be inclined to hide the diagnosis from others [7, 26]. The small proportion of participants in our study who would be likely to hide a diagnosis of dementia of a family member might be due to the implementation of the Dementia Plan and Action Plan by the Ministry of Health and Welfare in Taiwan [27]. The policy focuses on improving the public awareness of dementia and building a dementia-friendly society that ensures the quality of life among persons with dementia. Despite the low proportion of our participants who reported that they were likely to conceal a family member’s diagnosis of dementia, it is not close enough to the goal of the ADI, which is zero concealment [4].
Nearly one-third of participants in this study (27.7%) were uncertain or agreed that they would choose not to interact with persons with dementia. This result is slightly less than the ADI global survey, which reported about 43% of respondents avoided or shunned persons with dementia [4]. Therefore, although Taiwan is making efforts to promote a dementia-friendly community, the phenomenon of differential treatment or discrimination still exists in the community.
The mean scores for knowledge (15.15) and attitudes (66.65) towards dementia in this study were lower than the mean scores obtained in most previous studies that used the ADKS to measure dementia knowledge [11, 19, 20, 28–30] and ADQ to measure attitudes toward dementia [31–33]. One explanation for the lower scores in this study may be the older age of the respondents, which may make it more likely that these participants have retained negative feelings towards dementia because of the stigma associated with the disease [4]. However, our findings are similar to previous studies, which have shown older adults are more likely to have lower scores for knowledge and a more negative attitude about dementia compared with younger adults [32, 34, 35].
One other explanation for the lower scores for knowledge and attitudes in our study compared with others is that many previous studies included a partial or total sample of health professionals [11, 16, 19, 20, 29, 30]. All participants in our study were from the general population in the community, whose scores for knowledge are more likely to be lower. Compared with health professionals, a lay person, especially one who has never taken care of a person with dementia, has more difficulty empathizing with a person with dementia, or having a “hopefulness” and “person-centeredness” attitude, which is due to a lack of knowledge and skills one would obtain from providing support for a person with dementia [15, 16, 33].
Finally, the lower scores for knowledge and attitude toward dementia might be due to cultural or socioeconomic factors [4, 5, 34]. Wanhua District has a relatively low socioeconomic status compared to other districts in Taipei city.
Our results revealed that participants who had personal experience with dementia had significantly higher scores for knowledge compared with those with no personal experience. Although previous studies have reported that personal experience with dementia was significantly associated with attitudes and behaviors toward dementia [32, 35], this was not supported by our study findings. Our analysis indicated that personal experience with dementia was not significantly associated with higher scores for attitude or unfriendly behavior towards persons with dementia, suggesting that personal experience may not necessarily lead to positive attitudes and behaviors [35]. Our findings are supported by Chang & Hsu (2020), who found that participants with experience of caring for persons with dementia were more likely have the negative attitude towards dementia of feeling ashamed [10]. Another report also indicated that caregivers of persons with dementia often view dementia as a stigma [36]. Therefore, caregiving experience may not provide adequate knowledge about dementia to reduce negative attitudes or unfriendly behaviors, suggesting that other interventions may be needed to reduce the stigma of dementia [4, 35, 36].
Relationship between dementia knowledge, attitude and unfriendly behaviors towards persons with dementia
Our data indicated that higher dementia knowledge and positive attitude were significantly associated with lower levels of unfriendly behaviors towards persons with dementia. Participants with higher scores for knowledge and a more positive attitude about dementia were less likely to want to hide the diagnosis of dementia of a family member from others and were more willing to have social interactions with persons living with dementia. The finding is partially consistent with a recent study, which found that participants with less knowledge of dementia were more likely to feel ashamed of persons with dementia [10]. However, the same study showed no significant relationship between knowledge of dementia and avoidance of persons with dementia. A study by Lim (2020) revealed an insignificant direct effect of dementia knowledge on behavioral intention [14].
The present study found a significant association between dementia knowledge and attitudes towards dementia. Our result is in line with a previous study that also showed professional staff with poor dementia knowledge tended not to use a person-centered care approach [11, 16], suggesting a negative attitude about dementia. However, an online and paper survey in the UK, found that having had contact with persons with dementia was associated with a positive attitude about dementia and the level of dementia knowledge was not significant [38]. However, one study indicated knowledge about dementia was not positively correlated with attitudes. When a sample of citizens of Cambodia, the Philippines, and Fiji were surveyed, attitudes towards persons with dementia were positive despite low levels of dementia knowledge, and predictors of positive attitudes were country specific [37]. Therefore, knowledge and attitude might be independent domains in certain social and cultural environments [10].
Mediating effect of attitudes towards dementia
To our knowledge, the present study is the first to demonstrate attitudes towards dementia as a significant mediator in the relationship between dementia knowledge and unfriendly behaviors towards persons with dementia in Taiwan. The effect of dementia knowledge on unfriendly behaviors was partially mediated by attitudes towards dementia. Our findings suggest that individuals with higher scores for dementia knowledge are more likely to show better behaviors towards persons with dementia through positive attitude about dementia.
Our results are consistent with a recent study in South Korea, which showed that dementia knowledge reduced a negative behavioral intention through a positive cognitive attitude [14]. However, dementia knowledge was also shown to increase the negative behavioral intention through a negative affection and behavioral attitude towards dementia after controlling the variables in some studies [10, 14, 35]. This indicates that an intervention that simply provides knowledge about dementia will not necessarily be beneficial for reducing unfriendly behaviors, and there may even be a negative relationship between awareness and unfriendliness. Therefore, interventions that increase contact with persons with dementia to allow them to be viewed with a positive, hopeful attitude could encourage a willingness to interact, thus increasing person-centeredness, which could help develop dementia friendly behaviors.
Therefore, interventions should not only be focused on disease-related knowledge but also on assisting in understanding how to interact with persons with dementia. Understanding can help to resolve fear and provide experiences of successfully coexisting with persons with dementia through various virtual simulation methods or with actual in-person contact [31, 40], which can help improve positive attitudes and increase the willingness to interact with persons with dementia. In addition, providing adequate post-diagnosis support and friendly service can help reduce the desire to conceal a family member’s diagnosis of dementia.
Limitations and future research
First, the present study was a cross-sectional survey design, which prevents determining the causal relationship between dementia knowledge and unfriendly behaviors towards persons with dementia. Second, the study participants were collected from the Wanhua District through convenience sampling and thus the findings may not be generalizable to other regions of Taiwan. Third, the ADKS was used to assess dementia knowledge of the participants. Dementia is a general term used to describe a number of symptoms affecting the brain. Alzheimer’s disease is a common type of dementia but not the only one. Other types of dementia include vascular dementia, dementia with Lewy bodies, frontotemporal dementia. The ADKS was developed to assess the knowledge of Alzheimer’s disease and thus may not reflect the real level of dementia knowledge of the respondents in this study. In addition, although the ADQ is a validated instrument, it may not be suitable for assessing attitudes of the population in Taiwan towards dementia. A localized assessment tool is needed in future studies to measure the attitudes towards dementia of Taiwanese people, who have cultural differences from other Asian countries. Fourth, our findings are limited by the quantitative nature of the study in assessing the participants’ attitudes and unfriendly behaviors towards persons with dementia. A qualitative study should be conducted in the future to explore perceptions, attitudes and unfriendly behaviors towards persons with dementia, which would strengthen the findings of this study. Finally, the results obtained need to be interpreted with caution due to the small sample size. Thus, future studies with a larger sample size are warranted to support these findings.