Monolingual and Bilingual Communication Between Patients With Dementia Diseases and Their Caregivers

Ekman, Sirkka‐Liisa

doi:10.1017/s1041610296003250

Cited by 49 publications

(69 citation statements)

References 75 publications

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“…The development of dementia care policies discussed above, with its end result being the guidelines published by the Swedish National Board of Health and Welfare in 2010 vii , has been greatly influenced by research conducted by Sirkka---Liisa Ekman (1993;1996) and colleagues (Ekman et al 1993;1994;Heikkilä 2004;Heikkilä andEkman 2003, 2000). They have been able to show that Finnish immigrants living in Sweden with a dementia disease acted on a level of apparent competence that seemed far below their level of actual competence.…”

Section: Ethnoculturally---profiled Dementia Carementioning

confidence: 99%

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

Antelius

Plejert

2023

A&A

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When social contexts have been taken into account in dementia studies, they have often been ascribed to the private surroundings of the person living with dementia, giving the illusion of dementia 'occurring in a vacuum'. Thus, there has been an inclination to disregard the importance possibly played by larger socio---cultural contexts, such as values, norms and beliefs, that will influence how one perceives, experiences - and responds - to the illness. This study was set out to explore the understanding of dementia as a culturally and socially shaped illness in order to illuminate such perceptions and experience in relation to ethnoculturally profiled dementia care in Sweden. ) that the perception of dementia and the described meaning of the disease have little (or nothing) to do with decisions regarding formal care. However, cultural norms and traditions in relation to issues of filial piety seem to do. Thus, to understand how different ethnocultural groups might respond to dementia care within a migratory context, the current study illuminate the fact that it is crucial to realize that neither the individual person with dementia, nor larger ethnocultural groups can be placed within a vacuum that seemingly does not change or correlate with surrounding society. In order to achieve proper dementia care the issue of acculturation needs to be accounted for.

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Section: Ethnoculturally---profiled Dementia Carementioning

confidence: 99%

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

Antelius

Plejert

2023

A&A

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“…Another issue that was addressed was mental health care and care for the elderly. A small number of care units with Finnish-speaking staff were set up (Ekman, 1993;Heikkilä, 2004). To respond to the needs of other immigrant groups, mental health outpatient clinics offering care in various languages started up in the middle of the 1970s in some of the major cities.…”

Section: Responding To Immigration and Cultural Diversitymentioning

confidence: 99%

Historical Reflections on Mental Health Care in Sweden: The Welfare State and Cultural Diversity

Bäärnhielm

Ekblad

Ekberg

et al. 2005

Transcult Psychiatry

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This article discusses historical reflections on the response of Swedish mental health care to cultural diversity and immigration and our views regarding future directions for clinical care, research and training. Sweden has become increasingly multicultural through immigration. Mental health care in Sweden faces the challenges of encountering cultural diversity and the mental health consequences of forced immigration, acculturation, and refugee trauma. In our view, Swedish mental health care is at a crossroads: either it takes up the challenge raised by immigration of an increasing cultural diversity or it satisfies itself with rhetoric, thus leaving reality at the margins. Equity regarding access to mental health care in Sweden today must include an acceptance of, and interest for, the diversity of the population.

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“…5 When Ekman 6 had finished making video recordings of interactions between Finnish immigrants with dementia in Sweden and said goodbye to a woman who had not seemed to be aware of the meaning of the research, the woman said: 'Thank you very much for allowing me to take part in this important research!' As a nurse researcher, I think we should take into consideration the suggestion to apply relationship ethics to the question of research with vulnerable people.…”

Section: Mccormackmentioning

confidence: 99%

Editorial Comment

Norberg

2004

Nurs Ethics

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Performing research with people who are not capable of giving their informed consent to research is sometimes justified. When ethics committees approve research with vulnerable people such as patients with dementia, emphasis is placed on obtaining informed consent from each patient's spokesperson and on confidentiality. Obtaining informed consent for research with vulnerable people is a delicate matter. On the one hand Cuénod and Gasser 1 argue that, in order to improve health and quality of life for so-called mentally incompetent people, it is important that research should be done and that too strict an application of research ethics could lead to delay in the development of knowledge. It could for example lead to the biased selection of patients for research and thus to research results that cannot be generalized. On the other hand, it has been argued that the requirements for performing research with vulnerable people should be broadened. We should use a relationship ethics approach rather than a code of ethics approach. Horner 2 stresses that research with vulnerable people should be regulated rigorously and that research should be performed only on topics that concern the participants. If the researcher is not experienced in the particular field, he or she should not carry out the research. Only good quality research should be done and the research results should be published. When applied to people with severe dementia, these suggestions mean that if we, for example, carry out research on a special quality of napkin for their use, we would not need permission to use people with dementia as research participants. It is only when the research question concerns topics that can be answered only by people with dementia of a certain degree that we can defend carrying out research with such people. Only researchers who are able to communicate with people with dementia should be allowed to perform such studies. The researcher should be able to communicate with the research participants without being perceived as threatening by these persons. Only researchers who are skilled in communicating with people with severe dementia can obtain valid information from them. Many research reports have demonstrated that such researchers obtain adequate and interesting information. 3 McCormack 4 argues that when people with dementia cannot give their informed consent to research their voice could still be heard. When their narrative identity is taken into consideration, patients with dementia can participate in decisions about research. McCormack mentions things such as paying attention to the patients' grand narratives, their life history and the feelings they express in interactions with the researcher. This underlines the importance of the researcher's competence to interact with the people they do research with or about. These arguments can be further strengthened by considering the fact that people with dementia who seem empty and unaware about themselves and their situation may suddenly and unexpectedly say something that ...

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Monolingual and Bilingual Communication Between Patients With Dementia Diseases and Their Caregivers

Cited by 49 publications

References 75 publications

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

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

Historical Reflections on Mental Health Care in Sweden: The Welfare State and Cultural Diversity

Editorial Comment

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