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Public Stigma Associated with Dementia in a Chinese‐American Immigrant Population

2013; Wiley; Volume: 61; Issue: 10 Linguagem: Inglês

10.1111/jgs.12472

1532-5415

Benjamin K.P. Woo, Jamie O.P. Chung,

Dementia and Cognitive Impairment Research

To the Editor: Dementia is devastating, incurable, and highly prevalent in older adults. Stigma has been suggested to be one of the major barriers for people with dementia to receive prompt and effective care. Stigma related to dementia often deters older adults from finding out whether they may have cognitive impairment, and there is considerable evidence suggesting that stigma can be associated with inequitable mental health treatment.1, 2 Although stigma is a universal phenomenon, Asian Americans may be particularly vulnerable to the disgrace of chronic and severe mental illness.1-6 The size of the U.S. Asian-American population is rapidly increasing. Research from Asia has demonstrated that open discussion about dementia resulted in less stigma surrounding this illness,5 but Chinese-American immigrants may not seek help for their cognitive impairments out of fear of "losing face."4 Furthermore, this ethnic minority group may not be knowledgeable about this disease, resulting in further shame regarding dementia.7 A recent survey reported that older Chinese-American immigrants are less accurate than younger immigrants at identifying causes of dementia.8 Another study revealed that, although Chinese-American immigrants have misconceptions regarding dementia, their lack of knowledge does not reflect a lack of desire to become further educated about this illness.9 Despite misconceptions being prevalent in this community, no study has examined the views of the Chinese-American lay public about attitudes toward dementia. Therefore, a survey was conducted with Chinese-American immigrants to assess their attitudes toward dementia. A self-administered 15-item questionnaire (Table 1) in Chinese about attitudes toward dementia was constructed. First, items were selected from previous studies2, 3, 5 on attitudes toward dementia and other mental illnesses in the Chinese population. Then, mental health specialists fluent in Chinese reviewed the list for wording and coverage of different topics regarding shame about dementia. Each item used a true–false format. Information was collected on demographic characteristics. Inclusion criteria were literacy in Chinese and ability to complete a survey questionnaire and aged 18 and older. Descriptive statistics were used to explore the Chinese-American general public's views and perceptions regarding dementia. Eighty-nine Chinese-American immigrants were included. Participants were recruited and asked to fill out the questionnaire before an aging seminar conducted in Chinese. Fifty-six (62.9%) were female, 37 (41.6%) were high school graduates, 29 (32.6%) were aged 65 and older, 47 (52.8%) had been in the United States 20 years or longer, and 16 (18.0%) had a family history of dementia. Table 1 summarizes the survey results. The present study is the first study to explore attitudes toward dementia of Chinese-American immigrants. According to the survey, poor attitudes toward dementia were widespread in the Chinese-American general public, especially on the following items: It is difficult to communicate with people with dementia (85.4%); most employers will fire a 65-year-old employee with dementia (76.4%); individuals with dementia would not understand other people's concern or worry (68.5%); individuals with dementia are impulsive and unpredictable (62.9%). These attitudes prevent the Chinese-American general public from encouraging older adults to seek early treatment and hinder public acceptance of individuals with dementia. Discrimination and shame can have a devastating effect on Chinese-Americans with dementia. Several areas of the lives of individuals with dementia would be affected, including employment and social relationships. Because community support is necessary for dementia treatment, participation of the general public remains crucial to overcoming the stigma of dementia, but lack of understanding of dementia in the Chinese community may contribute to social exclusion and discrimination toward individuals with dementia. An antistigma campaign, especially for Chinese-American immigrants, should focus on clarifying that people with dementia are neither dangerous nor unpredictable and that people with dementia are still functional, productive, and independent citizens in the Chinese-American community and on putting a human face (e.g., recruiting speakers with dementia) to inform the Chinese-American lay public that individuals with dementia understand other people's concerns and worries. Future studies examining the relationship between knowledge about dementia and the shame associated with it in the Chinese American general public will better illustrate how to alleviate negative stereotyping of dementia. Because the media2, 10 can play an important role in reaching out to this ethnic minority group, it is important to work on media interventions to prevent shame regarding dementia in the Chinese-American general public. Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the authors and has determined that the authors have no financial or any other kind of personal conflicts with this paper. Author Contributions: Woo and Chung: study concept and design, acquisition of subjects and data, analysis and interpretation of data, preparation of manuscript. Sponsor's Role: None.