Keywords

4.1 Introduction

4.1.1 Prevalence of Dementia and Dementia-Related Stigma

With the number of people with dementia dramatically increasing over time (Wu et al., 2018), dementia is regarded as a major health concern worldwide (Prince et al., 2013). About 50 million individuals are currently diagnosed with dementia globally and without a medical breakthrough, this is projected to rise to 131.5 million by 2050 (Prince et al., 2015). Of this amount, an apparently-increasing proportion will be identified in Latin America, Africa, India, China, South Asia, and the Western Pacific region (Department of Economic and Social Affairs, Population Division, 2013). The number of people living with dementia in China has been estimated to be 9.5 million in the population aged 60 years or older (Wu et al., 2018). Despite the high prevalence and growing trend of dementia in China, this disease is conceptualized as a stigmatized mental disorder in contemporary Chinese society (Zhang, 2018). In the Chinese context of cultural, social, and political undesirabilities characterizing such a condition, there is increased stigmatization of such a mental condition in this country (Zhang, 2018). The increased public awareness that the mind constitutes a key concern in maintaining a high quality of life in contemporary China reinforces the persistence of dementia-related stigma in the public, which manifests itself in the form of silencing, indifference, or ignorance in memory clinics or other public settings (Zhang, 2018). In this background of research, it is imperative to provide a scale assessing dementia public stigma in China to deliver targeted education and interventions and launch dementia stigma reduction initiatives.

Growing evidence has shown that dementia is regarded as one of the most feared health conditions (Alzheimer’s Association, 2014). Some people with dementia experience social stigma (Herrmann et al., 2018) caused by fear and lack of public awareness and understanding of dementia (Mukadam & Livingston, 2012). Dementia-related stigma brings about a potential barrier to care and support (Burgener et al., 2015a, 2015b) that can manifest itself in such behaviors as excluding individuals with dementia in healthcare decisions (Brannelly, 2011) or shunning family members of individuals living with dementia (Werner et al., 2011). However, there is limited research focusing on dementia stigma and few evidence-based interventions specifically targeting dementia stigma (Werner et al., 2012). The public health influence of reducing dementia stigma can contribute to better care access, greater support engagement, and ultimately higher life quality for individuals with dementia and their families (Goffman, 1986).

4.1.2 Stigma as a Social Construct

Stigma is a perspective “generated in social contexts” (Goffman, 1986: 138), where a socially salient group difference is identified, devalued, and used as a source of discrimination against individuals or groups (Corrigan & Watson, 2002). Stigma consists mainly of public stigma (a negative reaction to a stigmatized individual or group from non-stigmatized others), affiliated stigma (the experience of stigma in individuals associated with a stigmatized person), and self stigma (the negative attitudes that a stigmatized person perceives from society and internalizes in himself or herself) (Corrigan & Watson, 2002). As observed by Corrigan and Watson, public stigma underpins affiliated stigma and self stigma (Jones & Corrigan, 2014). Based on this observation, we believe that it is imperative to study public stigma before examining affiliated and self stigma.

Stigma has been widely viewed as a social construct in the literature. Goffman regards stigma as “spoiled identity,” a gap between “virtual social identity” (how a person is characterized by society) and “actual social identity” (the attributes actually possessed by a person) (Goffman, 1986: 2). As such, the stigmatizing process is relational: the social environment defines what is deviant and provides the context where devaluing evaluations are expressed (Jones 1984). According to the Modified Labeling Theory, stigma is a social construct in which powerful groups in society impose negative stereotypical labels on those who are deemed undesirable and subsequently devalued and subjected to discrimination (Link & Phelan, 2001). Crocker et al. (1998) also define stigma socially. They claim that stigma occurs when a person is believed to possess an ‘‘often objective’’ characteristic conveying a particular devalued social identity in a specific social context (Crocker et al., 1998). Such an identity is socially constructed by defining who belongs to a specific social group and whether an attribute will lead to a given devalued social identity in a particular social context (Yang et al., 2007). Like Goffman (1986), Crocker et al. define stigmas as an essentially ‘‘devaluing social identity’’ that occurs within a particular social context that defines a feature as devaluing (Crocker et al., 1998: 505). Since stigma is socially constructed and dependent on relationship and context (Major & O’Brien, 2005), the sociocultural environment where stigma occurs (Link & Phelan, 2001) and the myriad societal forces that shape exclusion from social life (Parker & Aggleton, 2003) need to be considered in stigma-related studies. This is true for studies on dementia-related stigma. Considering the sophistication of stigma as a complex social construct, we think it advisable to explore public stigma before investigating affiliated and self stigma when it comes to a particular mental condition like dementia.

4.1.3 Developing Socioculturally-Relevant Dementia Public Stigma Scales

The relevance of worldwide translation and study of dementia public stigma

Despite the high prevalence of 131.5 million individuals living with dementia worldwide by 2050 (Prince et al., 2013), negative attitudes towards and discrimination against people with dementia are quite common (Batsch & Mittelman, 2012; O’Connor et al., 2018). Given the wide-ranging consequences of dementia-related stigma, such as low self-esteem, poor psychological well-being, social isolation, and poor quality of life (Kim et al., 2022), it is imperative to develop psychometrically sound scales to measure this stigma. Such instruments are essential for providing knowledge about how to develop interventions for dementia-related stigma reduction in the community (Kim et al., 2022).

Some dementia stigma scales have been developed. Stigma questionnaire (Cheng et al., 2011), STIG-MA (Piver et al., 2013), and Dementia Stigma Questionnaire (Woo & Chung, 2013) were adapted from multiple sources, and their construct validity has not been tested to allow for capturing the complexity of stigma. These instruments have, therefore, been rarely adopted till now (Kim et al., 2022). The validated Family Stigma in Alzheimer’s Disease Scale reflects three main dimensions of family stigma (caregiver stigma, lay public stigma, and structural stigma) (Werner et al., 2011). It was designed to assess family members’ perceptions of the stigma held by the public rather than lay public attitudes towards people living with Alzheimer’s disease (Kim et al., 2022). The validated Dementia Attitudes Scale (O’Connor & McFadden, 2010) assesses people’s positive attitudes to people with dementia rather than common stereotypes or negative attitudes towards dementia and people with dementia (Kim et al., 2022). It is also not designed to measure structural discrimination or perceived personhood (e.g., enjoying life and interaction) that might be regarded as an essential aspect of dementia stigma underlying and impacting individual stigmatizing attitudes and behaviors (Stites et al., 2018). To better capture dementia public stigma, stereotypes of people with dementia, such as being dangerous (Cohen et al., 2009), being a burden to family and the health care system, being incapable of speaking for themselves, being unreliable, and being unable to contribute to the society (Werner et al., 2017), need to be covered in dementia public stigma scales. To this end, Kim et al. (2022) developed and validated the Dementia Public Stigma Scale (DPSS) which comprises the three components of the tripartite model of stigma (cognitive, emotional, and behavioral) (Corrigan, 2000; Pachankis, 2007) to assess dementia-related stigma in the public. Based on the theoretical model of Attribution Theory (Corrigan, 2000), the DPSS can facilitate understanding the formative factors underpinning stigma and allow for a more nuanced exploration of dementia stigma and its impacts across or within populations. To our knowledge based on the literature review, it is the latest and most systematic scale for assessing dementia public stigma.

Though comprehensive, valid, and reliable in the Australian sociocultural context, the DPSS may not be completely applicable to other sociocultural contexts, considering that there is no accepted “gold standard” for assessing dementia-related stigma (Herrmann et al., 2018) as stigma is a complex social construct shaped by the sociocultural environment (Link & Phelan, 2001) and various social forces (Parker & Aggleton, 2003). As such, it is relevant to translate and adapt the DPSS and other systematic scales, if any, to diverse languages and cultures and study dementia public stigma in these linguistic-cultural contexts for intervention purposes.

Developing a method and an assessment construct for the translation of dementia public stigma scales by translating the DPSS into Chinese

Herrmann et al. (2018) reviewed worldwide evidence on dementia stigma over the past decade, focusing on how stigmatizing attitudes may present themselves in various ethnic subgroups, stigma assessment instruments, and prospective or experimental approaches to stigma assessment and management. As they discovered, only one cross-sectional study was conducted by Cheng and colleagues in China (Herrmann et al., 2018). Cheng et al. found lower levels of stigma in participants with relatives or friends living with dementia and younger and more educated individuals (Cheng et al., 2011) using 11 English assessment items derived from other stigma scales (Taylor & Dear, 1981; Fife & Wright., 2000; Struening et al., 2001; Mak et al., 2007). The assessment tool they developed through synthesizing diverse currently-available evaluation instruments may, to some extent, be neither sufficiently systematic in assessment nor adequately relevant to the target sociocultural context. A scale appropriate to the Chinese language and culture is needed to exclusively assess dementia public stigma among Chinese populations.

The recently developed DPSS was designed to measure dementia-related public stigma in the general public, and its psychometric properties were initially evaluated with community-dwelling adults (Kim et al., 2022). This scale is a 5-factor, 16-item construct. The five factors are Fear and Discomfort (Items 1–4), Incapability (Items 5–9), Personhood (Items 10–12), Burden (Items 13–14), and Exclusion (Items 15–16). Responses to the 16 items are measured through a seven-point Likert scale ranging from 1 (strongly disagree) to 7 (strongly agree). The total scores achievable for this tool, therefore, vary from 16 to 112. Six items are reverse-scored (1, 2, 3, 10, 11, and 12). As regards the other items, a higher score indicates a more negative attitude towards dementia. The DPSS displayed moderate to high reliability in all five factors (Cronbach’s α = 0.805 for Factor 1, 0.738 for Factor 2, 0.743 for Factor 3, 0.796 for Factor 4, and 0.743 for Factor 5). The whole scale also showed high reliability (Cronbach’s α = 0.818). Item analysis also indicated that removing any of the 16 items would not increase Cronbach’s Alpha value. Capturing the cognitive, emotional, and behavioral domains of stigma, the DPSS can explore the factor structure underpinning dementia pubic stigma among the study participants (Kim et al., 2022).

Based on our analysis of the studies reported by Herrmann et al. (2018), particularly Cheng et al. (2011), the dementia-related expertise of four authors (Lee-Fay Low, Sarang Kim, Annica Barcenilla-Wong, and Sam Shen) of our study, and our consultations with some mental health professionals working at the Hospital Affiliated with Nantong University and Qilu Hospital of Shandong University, we believed that the brief, user-friendly, and quick-to-complete assessment instrument of the DPSS could reveal dementia public stigma in the Chinese sociocultural context if well translated and adapted to the Chinese language and culture. Currently, there is no available dementia public stigma scale developed in Chinese to adopt targeted approaches to countering or eliminating dementia-related stigma, including protest, education, and contact (Rüsch et al., 2005). Protest is meant to fight against stigmatizing public statements, media reports, and advertisements; education is designed to reduce stigma by conveying contradictory information through books, videos, structured teaching programs, and other forms; contact with those with mental illness is intended to increase the impacts of education on decreasing stereotypes and mental health stigma (Rüsch et al., 2005). In this context, translating already-developed tools for use is a rapid and practical approach to assessment (Chang et al., 2014) before delivering more tailored stigma-mitigating interventions or launching more targeted stigma-reducing initiatives.

Given painstaking efforts as well as considerable time and cost investments involved in developing new instruments (Chang et al., 2014), well-developed, available, and reliable instruments need to be adapted and validated cross-linguistically (Mohamad Marzuki et al., 2018; Zhao et al., 2022). As such, there is a pressing need to translate quantitative scales into the language of the culture in which these tools are adopted (Maneesriwongul & Dixon, 2004). Strategies need to be used in the whole translation and adaptation process to ensure semantic equivalence and cultural appropriateness, including “forward translation, semantics evaluation and consolidation of the translated version, back translation, translation equivalence testing, and further adaptation” (Shan et al., 2023). Based primarily on the forward–backward translation approach, these strategies could basically guarantee that an instrument is adapted in “a culturally relevant and comprehensible form” without changing its original meaning and intent (Sperber, 2004). Such strategies are informative and helpful for the translation of the original English version of the Dementia Public Stigma Scale. This is especially true when we consider the different lexical systems, different language registers, and distinct cultural expression repertoires between the source and target languages and cultures. To ensure a successful translation of this scale and help develop a dementia public stigma reduction initiative (Herrmann et al., 2018) in China, we aimed to develop a person-centered translation method that could produce culturally-acceptable dementia public stigma scales by achieving semantic closeness and accuracy and cultural relevance and to develop an assessment construct for evaluating the translation of dementia public stigma scales.

4.2 Design and Methods

4.2.1 Overall Design

First, we translated and adapted the DPSS following three major steps. Informed by the translation and adaptation process, we then developed a method for person-centered translation of dementia public stigma scales. Based on this method and our panel discussions during translation and adaptation, we finally proposed a three-item assessment construct for the quality evaluation of the translation of dementia public stigma scales.

4.2.2 Developing the Chinese Version of the DPSS

Drawing on and developing the methodologies adopted in previous studies (Maneesriwongul & Dixon, 2004; Shan et al., 2023; Sperber, 2004; Guillemin et al., 1993; Sousa & Rojjanasrirat., 2011; Sidani et al., 2010), we developed the Chinese version of the DPSS following three major steps below.

  1. 1.

    First, we literally translated the DPSS into Chinese.

  2. 2.

    A panel comprising bilingual health educators, bilingual translators, the scale author, and content experts met to discuss items with problematic translations and corresponding root causes by double-checking the target version against the source version. Discussion of the meaning of the items and possible translations was undertaken until consensus was obtained. An adapted English item was sometimes written in conjunction with the Chinese translation. The consequences of forced literal translation and their implications for translation were also worked out through panel discussion.

  3. 3.

    The final translated scale was sent back to all panel members for checking.

4.2.3 Developing a Method and an Assessment Construct for Person-Centered Translation of Dementia Public Stigma Scales

The development of a method and an assessment construct for person-centered translation of dementia public stigma scales was informed conceptually by the translation and adaptation guidelines reported in relevant studies (Guillemin et al., 1993; Maneesriwongul & Dixon, 2004; Shan et al., 2023; Sidani et al., 2010; Sousa & Rojjanasrirat., 2011; Sperber, 2004) and practically by the accumulated health translation experience of three authors of this study (Meng Ji, Yi Shan, and Weiwei Chu) and the translation process above. Thus informed, we focused on penal discussions after literal translation, making full use of the potential advantages of the panel members: the language proficiency of native Chinese speakers (Meng Ji, Yi Shan, and Weiwei Chu) and native English speakers (Lee-Fay Low, Sarang Kim, Annica Barcenilla-Wong, and Sam Shen); the health translation experience of bilingual translators (Meng Ji, Yi Shan, and Weiwei Chu); and the expertise of the scale author of the DPSS (Sarang Kim) and content experts (Lee-Fay Low, Annica Barcenilla-Wong, and Sam Shen) who are engaging in studies on mental health with a special focus on dementia. Such penal discussions ensured not only the linguistic appropriateness and comprehensibility and cultural relevance and accessibility of the translated scale but also the maintenance of the original meaning and intent of the source scale (Shan et al., 2023). The method developed was presented schematically in the Results section. Based on this method and our panel discussions, we finally proposed a three-item assessment construct for the quality evaluation of the translations of dementia public stigma scales, which was also provided in the Results section.

Kim proposed a people-centered theory of translation by advocating a focus on “what people need, what people can do and what people think and feel” (Kim, 2009: 258) in translation. Informed by this proposal, we tentatively developed a person-centered translation of dementia public stigma scales by mainly considering the dignity and self-esteem of persons with dementia and showing understanding of and sympathy for them from multiple perspectives of the health translators, the DPSS author, and dementia experts who well understand persons with dementia. We were thus concerned to uphold the personhood of people with dementia and cater to linguacultural appropriateness and relevance in the Chinese sociocultural context while maintaining the original meaning and intent of the DPSS when we addressed mistranslations and agreed upon the final Chinese version of the DPSS. We also put forth the three items of evaluation from the perspective of persons with dementia when proposing the assessment construct. Overall, such a person-centered orientation was implemented throughout the entire process of our study.

4.3 Results

The method for the person-centered translation of dementia public stigma scales we developed could be displayed schematically in Fig. 4.1. Revolving around this schematic diagram, we presented the results of this study in the following subsections.

Fig. 4.1
figure 1

Method for person-centered translation of dementia public stigma scales

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4.3.1 Mistranslations Arising from the Literal Translation

We found the literal translation of Items 1, 2, 5, 9, and 16 problematic. Table 4.1 shows the specific literal translations and meanings of the literal translations of these items. It can be seen that the problems lay in the multiple meanings of the literal translation of “feel confident” in Item 1 and “touching” in Item 2, the possibilities of translating “supervise” in Item 5 and “ignore” in Item 16 into different Chinese phrases that have diverse meanings, and the lack of matching sayings in Chinese for “no longer themselves” in Item 9.

Table 4.1 Mistranslations of Items 1, 2, 5, 9, and 16
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4.3.2 Root Causes of Mistranslations, Implications for Translation, and Consequences of Forced Literal Translations

The three factors identified as causes of the aforementioned mistranslations included: (1) The immediate Chinese direct translation can cause confusion because it has multiple Chinese meanings; (2) There is no immediate Chinese direct translation—multiple translations are possible with varying positive/negative emotions attached; and (3) There is the lack of counterpart culture-specific idioms in Chinese. In the final analysis, what underlay these three causes were three root causes, as listed in Table 4.2. Each of these root causes could provide an essential implication for translation, as shown in Table 4.2. Regardless of these implications, forced literal translations would incur severe consequences for the readers, as reported in Table 4.2. It follows that the forward–backward translation method proposed in previous studies (Guillemin et al., 1993; Maneesriwongul & Dixon, 2004; Shan et al., 2023; Sidani et al., 2010; Sousa & Rojjanasrirat, 2011; Sperber, 2004) did not work effectively in dementia stigma scale translation.

Table 4.2 Root causes of mistranslations, Implications for translation, and consequences of forced literal translations
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4.3.3 An Assessment Construct for Person-Centered Translation of Dementia Public Stigma Scales Proposed

Based on the analysis above, we proposed a construct that could facilitate translating the DPSS into Chinese, as shown in Fig. 4.2. This construct consists of three components: semantic meaning closeness (SMC), perceived cultural familiarity (PCF), and perceived psychological harms (PPH). It could be used as a model to guide the assessment of the Chinese translation of dementia stigma scales.

Fig. 4.2
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Assessment construct for the translation of dementia public stigma scales

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4.3.4 Identification of the Best Translation Among Various Translation Options

Table 4.3 illustrates how our research team arrived at an agreed Chinese version of the DPSS before testing it for public use. A translated version was subjected to assessment in light of the three components comprising the construct shown in Fig. 4.2. As can be seen from this table, we conducted six rounds of translation before finally agreeing on the best version of translation that satisfied these three components. During the repeated translating processes, we managed to achieve semantic meaning closeness to the English wordings of “feel confident” in Item 1 and “touching” in Item 2 by avoiding such possible literal translations as listed in Table 4.1. Similarly, we avoided using such Chinese phrases with diverse negative meanings listed in Table 4.1 when translating “supervise” in Item 5 and “ignore” in Item 16. Translating “supervised” and “ignore” into “被人看管着” (watched over) and “躲开” (avoid) respectively could ensure accuracy in the meaning that we conveyed through the translation and meanwhile possibly prevent perceived psychological harm to target readers. As “are no longer themselves” in Item 9 has no corresponding culture-specific idioms in Chinese, we rendered it into a neutral wording of “好像变了一个人” (appear to become another person). The final Chinese version is shown in Table 4.4.

Table 4.3 Dementia public stigma scale translation assessment
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Table 4.4 The final Chinese version of the DPSS
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4.4 Discussion

We tentatively developed a method for person-centered translation of dementia public stigma scales in this study. The translator needs to discuss the meaning of the original text with someone with content knowledge to avoid misinterpretations and optimize word choice when there are multiple possible translations. To this end, we proposed an assessment construct for the translation of dementia public stigma scales that incorporates three major components: semantic meaning closeness (SMC), perceived cultural familiarity (PCF), and perceived psychological harms (PPH). Such a construct could help minimize mistranslations involved in the translation of dementia public stigma scales due to the differences in lexical systems, language registers, and cultural expression repertoires between the source and target languages. It can be used as a guide to help health translators navigate the translation of dementia public stigma scales. Translations following the method and the assessment construct we developed could facilitate understanding and measuring dementia public stigma.

We found that the forward and backward translation method did not work effectively in the translation of the DPSS into Chinese, detrimental to the understanding and measurement of dementia public stigma. Chang et al. (2014), Zhao et al. (2022), Mohamad et al. (2018), Maneesriwongul and Dixon (2004), Shan et al. (2023), Sperber (2004), Guillemin et al. (1993), Sousa and Rojjanasrirat (2011), Sidani et al. (2010), among many others, adopted forward and backward translation to adapt the English versions of some health-related measures into different languages. Although they concluded that this method was effective in their studies, we found it insufficient in our study. English and Chinese have different lexical systems, language registers, and cultural expression repertoires, which challenged the English-to-Chinese translation of the DPSS. These differences made it extremely difficult to forward-translate this scale into Chinese. For example, if “ignore” in Item 16 were forward-translated into “忽视” (the trait of neglecting responsibilities and lacking concern), “漠视” (willful lack of care and attention, disregard), “不理睬” (fail to acknowledge, give little or no attention to), “轻视” (treat with contemptuous disregard), “冷遇” (a refusal to recognize someone you know), “蔑视” (look down on with disdain), or “排斥” (marginalize, relegate to a lower or outer edge, as of specific groups of people), different degrees of discrimination or negative emotions would be induced, which is not intended in the original English scale. These translations would naturally lead to misleading backward translations, making translation equivalence testing (Shan et al., 2023; Sperber, 2004) considerably challenging. Translations thus produced could not effectively explore the cognitive, emotional, and behavioral domains of stigma held by the general public, therefore failing to gain a better understanding of dementia public stigma. Besides, the DPSS was written in a dementia-friendly language, in response to the appeal of Alzheimer’s Australia (Alzheimer’s Australia, 2009) in Dementia Friendly Language Position Paper 4, which advocates that “Language is a powerful tool” and “The words we use can strongly influence how others treat or view people with dementia.” Considering this appeal, we believed that the forward and backward translation method would possibly distort the original meaning and intent of the DPSS, bringing additional stigma to individuals with dementia. As a result, such translated scales could not objectively solicit and measure public attitudes towards people with dementia. As “a true translation proceeds by the motions of understanding and sympathy” (Hoffman, 1991: 211), a health translator needs to keep “constantly examining the relationship between word and experience, i.e. signifier and signified” (Kim, 2009). To this end in our translation process, we attached great importance not merely to “the relationship between word and experience” to achieve linguistic appropriateness and cultural relevance from the perspective of health translators but also to the understanding of and sympathy for those with dementia from the perspectives of the DPSS author and dementia content experts. It can be said that our translation team played a role of “a powerful agent for cultural change,” and our translation functioned as “a bridge-building space between the source and the target” (Bassnett, 2002: 9–10). As a result, the dementia pubic stigma scale translation in our study could ensure a translated scale that could effectively measure dementia public stigma and facilitate our understanding of such stigma.

We proposed a better alternative, a method for person-centered translation of dementia public stigma scales, to reveal and measure such stigma more objectively. This method was effective in facilitating the translation of the DPSS in a culturally relevant and appropriate manner (Shan et al., 2023). It allowed us to use words friendly to people with dementia and their families, those that are “normal, inclusive, jargon-free, non-elitist, clear, straightforward, non-judgmental” (Swaffer, 2014), and those that center on the person rather than on the disease or the social care system (Swaffer, 2014). Such wording can avoid stripping individuals of their dignity and self-esteem, reinforcing inaccurate stereotypes, and heightening the fear and stigma surrounding dementia (Alzheimer’s Australia, 2009). Translated scales using such wording are most likely to assess stereotypes, prejudice, and discrimination among the general population, revealing their generalized negative beliefs, negative emotional reactions to stereotypes, and negative behavioral reactions resulting from prejudice (Rüsch et al., 2005). Our protocol can, therefore, be seen as an initiative counteracting the prevalent phenomenon that inappropriate language used in the literature, the media, and the community creates wrong descriptions, prescriptions, misconceptions, and stigma of individuals with dementia (Swaffer, 2014). A good case in point is such derogatory, stigmatizing, and discriminatory words as “demented,” “sufferers,” “subjects,” and “victims” used by most researchers and presenters at the 2014 Alzheimer’s Disease International Conference (Swaffer, 2014). In the context that the language being used remains stigmatizing, negative, and disempowering (Devlin et al., 2007), there is a pressing need to use “inclusive non-offensive language that supports the whole person positively, rather than negative demeaning language that stigmatizes and separates us” (Swaffer, 2014). In this case, the protocol we proposed in this study can contribute to the promoted use of person-centered, dementia-friendly language, especially in the translation of dementia public stigma scales. Counteracting inaccurate stereotypes and the resulting prejudice and discrimination against dementia, translated scales using such language could help us understand and assess the public attitudes towards dementia in more objectively.

Our study also points to the need to construct a person-centered theory of translation (Kim, 2009) of dementia-related materials or in health care and medical domains in general. To this end, health translation studies should be taken away from purely linguistic and cultural analysis. Health translation in specific social and cultural circumstances needs to fulfill its expected social and cultural roles. As such, before engaging in translating health materials and constructing health translation theories, health translators and translation theorists should ask themselves the following question: “In whose terms, to which linguistic constituency, and in the name of what kind of intellectual authority does one translate?” (Liu, 1995). To answer this question, health translators and translation theorists need to adopt a person-centered approach advocated by Robinson (1991) and Hoffman (1991) to consider “what people need, what people can do and what people think and feel” (Kim, 2009). In the context of the prevalent social stigma attached to dementia and other mental diseases, health translators and translation theorists need to spare no efforts to center on people with dementia and their relatives in their translation practices and theory construction to “change views of and about people with dementia,” “include them in the research and conversations about them” (Kim, 2009), and “remove the stigma which we hear of every day in dementia” (Kim, 2009). The language being used about individuals with dementia is a powerful tool (Anon, 2010) for inclusion, reducing stigma, and increasing education and awareness as the way forward in reducing stigma (Bartlett, 2014). Provided that a people-centered theory of translation in health care and medical domains can be established, the disadvantaged position of patients could be improved through dementia-friendly, inclusive, non-offensive language in the translated materials about dementia and other mental diseases to some extent. Such a translation theory is “true to life” (Kim, 2009). Such translation theories are urgently needed, especially when considering that “Language creates the particularly human kind of rapport, of being together, that we are in a conversation together.” (Hughes et al., 2006).

To establish a person-centered theory of dementia translation, we need to highlight the importance of the translator’s role, which has already been stressed by famous translation scholars such as Bassnett (2002), Robinson (1991), Lawrence Venuti (1995), and Snell-Hornby (1995). To be qualified in health and especially dementia translation, translators should be equipped with essential “literacies,” which include the ability to understand “what people need, what people can do and what people think and feel” (Kim, 2009), in addition to bilingual and bicultural competences (Snell-Hornby, 1995). They also need to enhance translatability by focusing on practice and cognition (Kim, 2009) to make dementia translation “a humanizing process” (Robinson, 1991).

Strengths and Limitations

To develop a method and an assessment construct for person-centered translation of dementia public stigma scales, we formed a research team comprising bilingual health educators, bilingual translators, the scale author, and content experts. Such a composition could ensure the quality of translation from different perspectives of experts in relevant domains, especially considering the interdisciplinary nature of dementia translation. Another strength lay in the bilingual translators’ experience in community-based health translation for many years. Their rich health translation practice could enable them to gain a keen, sensitive sense of cross-cultural and -lingual differences both from the perspective of language and from the perspective of health care. This is beneficial to ascertaining the key steps of the person-centered translation method and the core elements of the translation quality assessment construct we tried to develop. The translation method and the assessment construct we developed may be used as a guide to help navigate the translations of dementia public stigma scales that can be used to develop and evaluate interventions aimed at dementia public stigma reduction in the public.

To our knowledge, they are the first method and the first assessment construct for person-centered translation of dementia public stigma scales that have been developed. Without relevant studies for reference, our translation method and assessment construct may not be perfect. Their reliability and efficacy need to be validated in future studies. Their applicability to other dementia-related materials than dementia public stigma scales needs to be further attested. As stigma is a complex social construct and the DPSS was developed in English-speaking populations in Australia, the Chinese version of the DPSS we developed may not be perfectly specific to the Chinese language and culture although we made great efforts to adapt it linguistically and culturally. In future validation studies, we will constantly improve its content validity based on psychometric tests among Chinese populations with diverse demographic characteristics.

Conclusions

The translation method and the assessment construct we developed are designed for facilitating the person-centered translation of dementia public stigma scales. They can help health translators navigate dementia translation to destigmatize people with dementia and their relatives while maintaining the original meaning and intent of the source text in a culturally relevant and appropriate manner in the target text. The best Chinese version of the DPSS we translated could be used for further evaluation with the public to test its psychometric properties. The translation method and the assessment construct we developed could be further validated for their reliability and efficacy in dementia public stigma scale translation and dementia translation in general.