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Frankly, None of Us Know What Dementia Is: Dementia Caregiving Among Iranian Immigrants Living in Sweden
Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences. (Ceder)
Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
2015 (English)In: Care Management Journals, ISSN 1521-0987, Vol. 16, no 2, p. 79-94Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2015. Vol. 16, no 2, p. 79-94
Keywords [en]
dementia, caregiving, illness, ethnoculturally profiled care
National Category
Gerontology, specialising in Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-119110DOI: 10.1891/1521-0987.16.2.79OAI: oai:DiVA.org:liu-119110DiVA, id: diva2:818923
Projects
Ethnic diversity and dementia: cultural, social and linguistic aspects
Funder
Riksbankens JubileumsfondAvailable from: 2015-06-09 Created: 2015-06-09 Last updated: 2018-11-20
In thesis
1. Dementia across cultural borders: Reflections and thought patterns of elderly Iranians with dementia in Sweden, their relatives and staff at a culturally profiled nursing home
Open this publication in new window or tab >>Dementia across cultural borders: Reflections and thought patterns of elderly Iranians with dementia in Sweden, their relatives and staff at a culturally profiled nursing home
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: Today’s multicultural society has resulted in major changes, with healthcare undergoing significant modifications. Healthcare workers and patients are increasingly confronted with “cultural” backgrounds other than their own. The world’s population is ageing, and the number of people with dementia is growing, resulting in a growing number of older people with a foreign background whose care needs have increased at different rates. Migration does not only mean moving from one place to another; it also involves the transition of an individual’s lifestyle, life views, social and economic adjustments that may lead to certain changes. These transitions from the “old” to the “new” way of life and from a life without dementia to a life with dementia involve making sense of life’s changes.

Aim: The aim of study I was to explore the experiences and perceptions of dementia among Iranian staff working in a culturally profiled nursing home (CPNH). The aim of studies II and III was to explore relatives’ decisions to end caregiving at home, and Iranian families’ and relatives’ attitudes towards CPNHs in Sweden. The aim of study (IV) was to explore how the residents with dementia at the CPNH expressed the feeling of “home”.

Method: This thesis is based on more than one year’s fieldwork. The empirical material is based on interviews and observations. Three groups of participants were interviewed and observed: 10 people with dementia (IV), 20 family caregivers and relatives (II and III, respectively) and 34 staff members (I). The interviews were conducted in Persian/Farsi, Azerbaijani, English and Swedish. The choice of language was always up to the participants. All the interviews were audio-recorded, transcribed verbatim in the respective languages and then translated later into Swedish. The analysis of the material was based on content analysis blended with ethnography.

Results: Study I shows that people from different culturally and linguistically diverse backgrounds could have different perceptions of what dementia entails. A lack of knowledge concerning dementia affects how staff approach these people.

Study II shows that the CPNH is crucial when deciding to cease caregiving at home. It is important to ensure that relatives with dementia are cared for by someone who speaks the same mother tongue. The results indicate that positive feelings of relief or comfort are dominant responses among the participants, some of whom even feel pride in the high standard of care provided by the home.

In Study III, most participants based their views on a comparison between the CPNH and Iranian nursing homes after the Islamic Revolution. Negative views of the nursing home were evaluated alongside what the respondents considered to be typically Iranian. In Study IV, the results show that people with dementia’s personal experiences of home played a great role, and although none of the participants felt at home, all of them stated that the CPNH was a place to live in.

Conclusion: Perceptions of dementia can be based on cultural and traditional understanding, although this can shift through transition and knowledge accumulation. A lack of knowledge concerning dementia and residents’ sociocultural background, generational differences and incoherence, aligned with staff members’ different sociocultural backgrounds, created many challenges. The staff wanted to learn more about dementia, to be able to manage daily communication with the residents. On another point, the staff admitted that only being able to speak a person’s native language was not enough to claim that they were actually communicating. Family caregivers’ decisions to end caregiving at home involve mutuality, capability and management, but decision-making sometimes has nothing to do with violating a person’s autonomy and is more about protecting the person. The family caregivers do care for frail elderly family members. What has changed due to a transition is the structure and construction of family caregiving. The consequences of communication difficulties between staff and the residents have led to a small degree of social involvement, which in turn affects residents’ daily social state. Overall, many family members stated that the CPNH resembled Iran too much, which disturbed them.

The residents thought of home as a geographical location, but also connected it with both positive and negative feelings. Furthermore, the CPNH reminded some of the residents of the nicer side of life back home in Iran, while for others it brought back sad experiences and memories from the past. Nevertheless, the nursing home, due to memories and experiences of life in Iran, “home”, was a place to be and to live.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2018. p. 100
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1636
Keywords
Dementia, Transition, Culture, Culturally profiled nursing home
National Category
Gerontology, specialising in Medical and Health Sciences Nursing Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:liu:diva-152761 (URN)10.3384/diss.diva-152761 (DOI)9789176852309 (ISBN)
Public defence
2018-12-13, Belladonna, Campus US, Linköping, 09:00 (Swedish)
Opponent
Supervisors
Note

The Ph.D. series name and number is incorrect in the printed version of the book cover but corrected in the electronic version.

Available from: 2018-11-20 Created: 2018-11-20 Last updated: 2018-11-21Bibliographically approved

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