S3.8 Ethnicity, communication and the dementias: A Nordic perspective

Chair: Eleonor Antelius

The number of people from ethnic minorities growing old and developing dementia diseases within the Nordic countries is expected to increase considerably within the next 25 years, ensuing an increasing demand for assessment, treatment, support, and care for people from ethnic minority groups. This symposium gathers researchers, who study phenomena concerning ethnicity and the dementias, all highlighting the relevance of understanding how different perspectives on dementia may influence health-promotion and health-seeking behavior among ethnic minorities. Objectives:         1.            To highlight common denominators for ethnicity, communication and the dementias viewed through a Nordic lens. 2.              To emphasize problems as well as possibilities concerning care and health-care practices, ranging from research on assessment and diagnosis, to aspects of communication and ethnicity in mundane settings, such as residential care. 3.        To discuss how results from interdisciplinary research on ethnicity, communication and the dementias may have an impact on policy-making and practice, in order to better meet the situation of an increasingly multicultural and aging Nordic society.

S3.8.1 Ethnoculturally profiled dementia care

Eleonor Antelius, Charlotte Plejert

            Linköping University, Sweden       

Background: In most previous dementia studies, there has been an inclination to disregard the importance played by larger socio-cultural contexts. This study explores the understanding of dementia as a culturally shaped illness and illuminates perceptions and experiences in relation to ethnoculturally profiled dementia care in Sweden. Method: The study is based on audio-recorded, interview data (n=10) and participant observations gathered in three ethnoculturally profiled care settings: (1) a residential dementia care facility with an Arabic focus, (2) one with an Oriental focus, and (3) a day centre for persons with dementia with Middle Eastern backgrounds. A semi-structured interview guide was used. Analysis was ethnographic; identifying recurrent patterns of meaningful structures across the data-sets. Results: Results indicate that the perception of dementia and the described meaning of the disease have little to do with decisions regarding formal care. However, cultural norms and traditions in relation to issues of filial piety, do. Conclusion: To understand how different groups might respond to dementia care within a migratory context, the study illuminates that it is crucial to realize that neither the person with dementia, nor larger ethnocultural groups can be placed within a vacuum that seemingly does not change or correlate with surrounding society. Therefore, provision of dementia care, relevant to people from different ethnocultural backgrounds, needs to be inherently flexible.

S3.8.2 “What to do when we are not able to communicate”?

Ragnhild Stortein-Spilker, Mette Sagbakken

The Norwegian Centre for Migration and Minority Health (NAKMI), Norway

Background: The number of elderly migrants in Norway rises and studies show that migrants with dementia experience barriers in accessing adjusted health and care services. The objective of this study is to explore views and experiences of health personnel regarding care provided to migrants with dementia or age-related cognitive impairment. Methods: A qualitative research design was used to map perceived challenges; which competencies and training are needed; and how diverse needs can be met when caring for migrants with dementia. Results: Language barriers was emphasised as the main challenge in providing adjusted care. Interpreter services were seldom used, including a lack of routines and knowledge on how to use them. Technology and help from multilingual colleagues were used to overcome communication barriers.  The study indicates a limited focus on how to adapt services to diverse language and cultural needs. Conclusions: To be able to provide personalized care, an increased awareness of diverse linguistic and cultural needs in the ageing population is needed. Health personnel with a migrant background can play a vital role in adapting services, and needs to be given due consideration by health authorities in the planning and delivery of services.

S3.8.3 Communicative competence in multilingual persons with dementia

Anne Marie Dalby Landmark, Pernille Hansen

            University of Oslo, Norway

Background: The linguistic and cognitive decline in multilingual persons with dementia is difficult to assess, as it is challenging to measure multilingual speakers’ full communicative competence across their languages, and many tools are sensitive to linguistic properties and cultural differences. Methods: We explore memory capacity and naming skills of five immigrants to Norway diagnosed with Alzheimer’s disease. Language data were collected through confrontation naming, semi-spontaneous narrative and conversation, and the participants completed two cognitive screening tools. Results: The participants exhibited large variation in the majority language skills in relation to their skills in their first language(s). Word finding problems and memory capacity deficits did not always correspond to their ability to take active part in conversation, in part due to communicative compensatory strategies. Conclusion: Combining different methods of assessment and analysis can give a more comprehensive picture of the impact of the dementia on the multilingual speaker.

S3.8.4 Perspectives from relatives on the care of elderly immigrants with dementia

Reidun Ingebretsen

NOVA, OsloMet – Oslo Metropolitan University, Norway

Background: Previous research shows that elderly immigrants with dementia often come in contact late with formal health and social services, creating pressure on immigrant family caregivers and dilemmas in their roles in society. The aim of the project is to obtain knowledge of elderly immigrants with dementia, their next of kin, and their experience with health and care services. Methods: Individual interviews with 12 next of kin, nine focus groups with 51 immigrants 50+ years and four focus groups with 18 service providers in the health and Social care Services. The total sample includes 81 persons from 23 countries. Data was recorded, transcribed and qualitatively analyzed and interpreted. Results: Interviews show that many immigrants are reluctant towards seeking help due to a perception of memory problems and disabilities among elderly as normal aging, with family care as a natural consequence. Dementia with behavioral problems may be considered as ‘madness’ and associated with shame and taboos. In order to counter barriers to help-seeking, such as inadequacies in information, interpretation services and adaptation of services, results highlight important factors, such as the understanding of dementia, taboos associated with dementia, and expectations of filial care and responsibilities. Conclusions: The diversity of norms and perceptions of dementia have consequences for help-seeking pointing to a need of tailored services for immigrants with dementia and their next of kin, for example person- and family-oriented care.

S3.8.5 Validation of the Rowland Universal Dementia Assessment Scale for cognitive

screening of multicultural populations across five European countries

Rune Nielsen

        Rigshospitalet, Copenhagen, Denmark

Background: With increasing cultural diversity and growing elderly immigrant populations in Western European countries, the availability of brief cognitive screening instruments adequate for assessment of dementia in people from diverse backgrounds becomes increasingly important. The aim was to investigate the diagnostic accuracy of the Rowland Universal Dementia Assessment Scale (RUDAS) in a multicultural sample and to present normative data. Methods: The study was an international cross-sectional multi-center study carried out in Memory clinics in Germany, Belgium, Denmark, Sweden, Norway, and Greece. The RUDAS was administered to 80 patients with dementia and 341 cognitively intact participants from immigrant and native-born populations with a wide age- and educational range. Results: The area under the curve (AUC) was .93 (95% CI = .90-.96), suggesting that the RUDAS could discriminate between patients with dementia and controls with high accuracy. Regression analyses revealed that the RUDAS was affected by education and to a lesser extent age, but not immigrant status. Normative data was calculated and stratified by education. Conclusions: We found the RUDAS to have excellent diagnostic properties in our multicultural sample. However, normative data cautions that level of education should be considered when interpreting RUDAS scores from individual patients.