Frankly, None of Us Know What Dementia Is: Dementia Caregiving Among Iranian Immigrants Living in Sweden.

Abstract

In quite a short amount of time, Sweden has gone from being a relatively homogeneous society to a multicultural one, with a rapid expansion of immigrants having culturally and linguistically diverse (CALD) backgrounds growing old in Sweden. This is particularly interesting in relation to studying age-related dementia diseases. Research shows that not only do CALD persons with dementia diseases tend to mix languages, have difficulties with separation of languages, or revert to speaking only their native tongue as the disease progresses, but they also show tendencies to experience that they live in the cultural environment in which they were brought up, rather than in the current Swedish one. In this article, we explore findings in relation to one such CALD group in Sweden, Iranians. The article is empirically driven and based on data gathered in 2 separate settings with specific ethnocultural profiles, offering dementia care with Middle Eastern, Arab, and/or Persian profile. Observations were carried out in combination with semistructured in-depth interviews (n = 66). By using a combination of content and ethnographic analysis, 4 main findings related to ethnocultural dementia care were elucidated. These include (a) a wider recognition of people from different CALD backgrounds possibly having different perceptions of what dementia is, (b) a possibility that such ascribed meaning of dementia has a bearing on health maintenance and health-seeking behavior as well as the inclination to use formal services or not, (c) choosing to use formal service in the forms of ethnoculturally profiled dementia care facility seems to relate to being able to "live up to ideals of Iranian culture," and (d) "culture," however ambiguous and hotly debated a concept it is, appears to be a relevant aspect of people's lives, an aspect that is both acquired as well as ascribed to oneself and to others. As such, we argue that culture needs to be further addressed in relation to dementia care in multicultural societies because ascribing culture boxes people in as well as out. In addition, ethnocultural contextualization of dementia care needs to be understood in relation to this because it affects the care provided.