Discussion
Our study has shown that 60.6% of healthy participants have a moderate-high stigma against AD. However, stigma levels were higher in women, singles, and healthcare workers.
Older people with cognitive impairment encounter stigmatization in many cultures. Stigmatization causes a delay of 1.5-1.8 years in the diagnosis of cognitive impairment (11). It has been reported that older people are stigmatized due to their age, and additional cognitive impairment increases the risk of stigma three times (12). Cognitive, behavioral, and psychiatric disorders associated with dementia cause some issues such as denial, embarrassment, and irritability associated with AD in both patients, caregivers, and healthy individuals in the community. In Western societies, dementia is seen as a loss of youth, functionality, and independence. This, in turn, is associated with reduced tolerance and increased risk of stigma for dementia patients (13). In Eastern countries such as Japan, China, and India, dementia is perceived not as a disease but as a part of aging. Therefore, in these countries, unlike in Western societies, the fear of having AD and the frequency of stigma associated with it are less common (14-16). While some African-Americans see dementia as the inevitable consequence of aging, others define it as a form of mental illness because of their spiritual and religious beliefs. Therefore, these populations experience less stigma, caregiver burden, and caring problems against AD(17,18). In Arabic countries, because of prohibitions on disclosing personal and family issues to foreigners, Alzheimer’s patients’ access to hospitals has decreased and resulted in criticism and ridicule (19). On the other hand, solid religious beliefs increase compassion and the willingness to help patients with Alzheimer’s disease and reduce the aggression towards patients (13). In a study conducted with a population of AD and caregivers, approximately two-thirds of the participants stated that they were not understood by others and were exposed to negative associations in society (20). In our study, the perceived stigma against AD was high in more than half of the healthy Turkish participants. While this rate is similar to some studies reported in Western societies, it is higher than the stigma in Eastern cultures. This difference may be due to the cultural factors and demographic characteristics of the participants.
Some factors affect people’s perception of stigma, such as gender, age, education level, cultural beliefs, knowledge about Alzheimer’s disease, or being an AD caregiver. The most important factor associated with the perceived stigma against AD is gender (21). In a study from Australia, stigmatization against AD was found to be higher in men. However, in elderly societies with a higher male population and gender discrimination, women have three times more risk (22,23). In our study, the stigmatization against AD was found to be higher in women than in men. This result was thought to be related to the fact that women are more interested in the care of AD patients in our country, and therefore women are more exposed to the behavioral effects of the disease.
Studies have shown that the perception of stigma in young people is higher than in the elderly (22,24). Different from previous studies, although most of our participants were young, age did not have any effect on stigmatization in our study.
The socioeconomic factors and education level affect stigmatization (25). In highly educated and developed countries, cognitive impairments are known as an unavoidable part of normal aging. This increases fear and anxiety in individuals, feelings of hopelessness, and stigmatization (26). In the less developed countries, people accept patients with AD more easily and stigmatize them less (25). In some studies, it has been shown that education level does not affect stigma (21,27). Similarly, no relationship was found between marital status and stigmatization (28). In our study, the stigma level was not affected by the education level and the occupation. However, in contrast to the literature, it was observed that single participants got higher scores in the ”Fear of loss of family support ” and ”Emotional impact” dimensions. The high stigmatization in these dimensions is thought to be due to people not having any idea about their future partners and their behavior.
Although the vast majority of the participants (94.3%) included in our study have knowledge about AD, they had a high stigma against the disease. This result is different from other studies reporting the relationship between having less knowledge about the disease and a high risk of stigma. People who have more information about AD have less stigma (29). In a study conducted in 155 countries with more than 70.000 participants, it was found that two-thirds of the participants accepted AD as a part of the aging process, not as a neurodegenerative disease. This indicates the lack of knowledge about AD that may result in stigma (31).
There was no difference in stigma between those who had a family member with dementia and those who did not. (21,24,31). Only about one-fifth of our participants had a family history of AD, which was not associated with stigma level, consistent with previous studies.
It has been demonstrated that approximately 62% of healthcare workers know dementia as a part of normal aging in a large study. (32). Education of healthcare professionals about AD and increasing their awareness about the disease is necessary for early diagnosis of AD and developing effective strategies to manage the disease. Thus, national dementia outcomes could be improved (33). A few studies have shown that the perception of stigma against AD is high among healthcare professionals (10,32). Our study also revealed a high stigma against AD in most healthcare workers.
Our study is the first investigating the perceived stigma prevalence against AD in the healthy Turkish population to the best of our knowledge. However, the study has some limitations. Participants are generally young people, so stigmatization in older individuals is not clear. Besides, since AD caregivers were not included in this study, the stigmatization of them couldn’t be evaluated.