This article focuses on cognitive impairment and dementia in the context of transnational migration. Based on data from focus group discussions and interviews, we conclude that to adjust to the needs of care within ethnic-minority communities, it is important to consider not only the availability of household and kin members but also the present understanding of obligation and reciprocity underlying the perception of care. Another important issue to realize is that caregivers, women in particular, might feel obliged to conform to a traditional caregiver role, but without the support from a wider extended family, and in the context of other pressing roles and duties. Consequently, health personnel should be wary of stereotyping and generalizing groups through "othering" ideologies and rather try to explore, understand, and adjust to the present and often fluctuating set of needs, as well as be aware of how and by whom these needs are articulated.
BackgroundAlong with the ageing of the general population, Europe’s migrant populations are also ageing, thus posing new challenges for dementia care services, particularly if the services are to be adjusted to persons with different linguistic and cultural backgrounds. From the perspective of health professionals, this study aims to explore challenges involved in identifying, assessing and diagnosing people with cognitive impairment/dementia who have different linguistic and cultural backgrounds.MethodsResearch on health professionals experiences regarding the management of dementia among immigrants is scarce and qualitative methods was used to address the objective of the study. Using qualitative in-depth interviews and focus-group discussions, we sought to gather participants’ experiences regarding the diagnostic process for immigrants with dementia. The material was analysed and interpreted based on Kvale and Brinkmann’s descriptions of three different contexts of interpretation: self-understanding, critical common-sense understanding, and theoretical understanding.ResultsHealth professionals described how families could attribute symptoms of dementia to processes of normal ageing, while others saw the symptoms as something shameful; both instances delayed or hindered help-seeking. Many clinicians had limited experience with older immigrants suffering from dementia, and general practitioners (GPs) in particular experienced difficulties assessing dementia due to language barriers and difficulties related to the involvement of the family or an interpreter. The findings illustrate challenges in assessment, such as unfamiliarity with test situations among those being assessed and lack of knowledge regarding appropriate diagnostic tools among health professionals. Lack of continuity and poor information exchange in the chain of care seem to reinforce many of these challenges.ConclusionsDetection, treatment and care may be improved if primary care professionals strengthen their cross-cultural competences. Training in communication skills and in the use of cross-cultural assessment tools may help build competence and confidence when assessing and caring for people with different cultural and linguistic backgrounds. Closer collaboration among families, nurses in home-based services, dementia teams, and GPs may facilitate close monitoring of a patient over time. Such collaboration requires sufficient information exchange during transitions in the chain of care, continuity among health professionals, and a shared understanding of the goals for treatment and care.Electronic supplementary materialThe online version of this article (10.1186/s12913-018-3720-7) contains supplementary material, which is available to authorized users.
Background Research on how services can be adapted to meet the needs of people with dementia with an immigrant or minority ethnic background is scarce. Several approaches have been discussed: offering services adapted to language and culture, adding bilingual staff to mainstream services, and providing cultural awareness and sensitivity training to health personnel in mainstream services. This study seeks to develop more knowledge of challenges and possible adjustments related to receive and provide public care for people living with dementia with an immigrant or minority ethnic background. Methods and materials Through a qualitative design, including 19 single interviews, 3 dyad interviews and 16 focus groups with older immigrants, relatives of immigrants with dementia, and health personnel, we explored experiences and perceptions related to receive and provide care for people with immigrant backgrounds living with dementia in Norway. The analysis were conducted inspired by Kvale and Brinkmann’s three contexts of interpretations. Results Challenges related to language and communication were emphasized as the most fundamental barrier to provide adjusted care; exemplified through cases of isolation and agitation among patients not able to communicate. Care services framed by the majority culture creates feelings of alienation and exclusion. Not having access to specific types of food and the possibility to listen to songs, music, literature or TV programs representing a familiar and homely context may prevent use of public dementia care. Findings also point to differences in moral views regarding life-prolonging treatment in advanced stages of dementia. Conclusion This study argues that to be able to address challenges related to migration-driven diversity one needs holistic care services that addresses individual as well as socio-cultural needs. A linguistically and culturally diverse workforce may represent an important resource, potentially reducing some of the problems related to communication. On a structural level, it seems necessary to allocate more time and resources, including the use of interpreters, when assessing and getting to know persons with dementia with another linguistic and cultural background. However, shared language does not guarantee understanding. Rather, one needs to become familiar with each person’s way of being ill, on a cultural and individual level, including changes occurring living with progressive dementia. Getting to know a person and his/her family will also facilitate the possibility to ensure a more familiar and homely context. Thus, continuity in relation to language and culture is important, but continuity in relations may be equally important ensuring that people with dementia receive equitable care.
As the number of older immigrants in Europe rises, dementia within minority ethnic populations warrants attention as a significant public health problem. Equitable health and care services constitute a prioritised health policy aim on both supranational and national levels in Europe and is formulated in the Norwegian health legislation. Through interviews and focus groups with older immigrants, relatives of immigrants with dementia and health personnel, we explored the perceptions of dementia among ethnically diverse groups in Norway. The findings show that many interpret symptoms such as memory loss and disorientation as a natural part of ageing. Others consider dementia symptoms to have a psycho-social origin, deriving from social isolation. Some describe symptoms as an expression of a potentially transient sign of madness, while others point to destiny and God's will, representing basic and unalterable causes. However, another pattern of perception includes viewing dementia as a potentially transient physical illness, including a belief in a medical cure. By investigating how people with dementia and their families understand and manage the condition, one may facilitate access to relevant and adapted information. Furthermore, by exploring how people relate to their illness, health personnel may challenge explanatory models that create unrealistic expectations of cure, as well as models that, due to stigma or normalisation of symptoms, prevent the use of public care.
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