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.

Ethnoculturally-profiled care: Dementia caregiving targeted towards Middle Eastern immigrants living in Sweden.

“…Hence, in order to more fully understand the complex social contexts in which a person with dementia is situated, more attention needs to be paid to the fact that the way one understand and explain health and illness is always culturally (and socially) shaped. To borrow a classical idea from anthropologist Arthur Kleinman, we need to understand that there are always 'normal ways of being ill' (Kleinman 1988:5) and that such normal ways most often result in very different health---maintenance and help---seeking behaviours (Antelius and Kiwi 2015;Mackenzie, Bartlett and Downs 2005).…”

“…A great deal is known about ageing in Sweden, both in terms of the demographics of ageing (Sundström 2009) and how it (historically) has been uniquely shaped by its locally controlled services for older people (Davey, Malmberg and Sundström 2014). However, contemporary Sweden is also shaped by the fact that since World War II, due to migration patterns, Sweden has gone from being a relatively homogenous country (ethnoculturally speaking) to becoming a multicultural and multi---ethnic one (Hannertz 1983;Antelius and Kiwi 2015). As a consequence of both the refuges coming during WWII (many came as young children, especially from Finland) as well as labour---force migrants, who came mainly in the 1960s and 70s, now growing old, Sweden has experienced a rapid expansion in the numbers of elderly immigrants with culturally and linguistically diverse (CALD) backgrounds (Emami and Ekman 1998).…”

“…In hindsight, the mere fact that groups are considered minorities has been a sufficient cause for a study of the group (cf. SBU172E/3:408; Antelius & Kiwi 2015).…”

“…However, the choice to single out people with Middle Eastern backgrounds as a distinct ethnocultural immigrant group in Sweden - as this study does - should be understood in relation to the discussion above. Hence, the choice needs to be understood in relation to the facts that (a) there already exist Middle Eastern---oriented dementia care facilities in Sweden, which indicates that persons of these backgrounds are perceived (and/or perceive themselves) as an ethnocultural group with special needs for targeted care, (b) persons with Middle Eastern backgrounds make up one of the largest immigrant groups in Sweden, with increasing numbers of people growing older (Mazaheri, 2013); and (c) hardly any studies exist regarding persons with dementia diseases and with Middle Eastern backgrounds (however see Mazaheri 2013;Antelius and Kiwi 2015;Naess and Moen, 2015). In our opinion this makes a separate study of the group valid, especially in order to be able to ask the question of whether it is still valid to conduct such a separation of groups in regards to dementia care.…”

“…Hence, ethnicity and culture need to be understood as intertwined. x For studies from this Persian--oriented dementia care facility, please see Antelius and Kiwi 2015;Kiwi, Hydén and Antelius, forthcoming. xi See for instance Antelius & Kiwi 2015;Kiwi, Antelius & Hydén, forthcoming. xii The word 'demented' implies that someone is their disease, a term nowadays seldom used in dementia studies.…”