Eleonor Antelius

Communicative disability and stories: Towards an embodied conception of narratives

In this article we show that persons with communicative disabilities are often involved in storytelling that does not necessarily conform to the conventional expectations of what constitutes a narrative. By analyzing the relationship between story and storytelling event, and the relation between what could be called the primary storyteller and the vicarious storyteller, we show that storytellers with communicative disabilities are often quite inventive in finding ways of presenting themselves as competent storytellers even though they may have certain problems vocally animating a coherent, structured story. This lead us to conclude a necessary redefinition of what a narrative is - that it could be performed as well as it could be told - and that such a redefinition stresses methodological issues: in order to be able to study the life stories of people with communicative disabilities we need to use both narrative and ethnographic research methods.

Whose body is it anyway? Verbalization, embodiment, and the creation of narratives:

This article examines the creation of narratives between people with severe disabilities and the personnel working with them. It shows that although a co-created narrative of what it means to be severely disabled (the story of dependence) seems to prevail, another narrative (the story of autonomy ) is also told, where the story of dependence is rejected by the person with disabilities. However, this story of autonomy only becomes clear if we recognize three central claims: (1) there is a connection between where the physical body of the person with disabilities is positioned in space and what he or she is allowed or able to be and do; (2) since the body is a communicative tool, the moving of the body could be interpreted as a narrative, told through the embodiment of space; and (3) the embodied story can challenge existing social structures. The article highlights the inherent struggle for power within narrations and how the creation of alternative narratives can contest existing social structures.

Frankly, None of Us Know What Dementia Is: Dementia Caregiving Among Iranian Immigrants Living in Sweden

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.

‘There’s a letter called ef’ on Challenges and Repair in Interpreter-Mediated Tests of Cognitive Functioning in Dementia Evaluations: A Case Study

In the Scandinavian countries Sweden, Denmark, Norway, and Finland, the number of first generation migrants reaching an old age, who will be in need of age-related health-care, is rapidly increasing. This situation poses new demands on health-care facilities, such as memory clinics, where patients with memory problems and other dementia symptoms are referred for examination and evaluation. Very many elderly people with a foreign background require the assistance of an interpreter in their encounter with health-care facilities. The use of, and work by an interpreter is crucial in facilitating a smooth assessment. However, interpreters, clinicians, as well as patients and their companions, may be faced with many challenges during the evaluation procedure. The aim of this case-study is to highlight some of the challenges that occur in relation to a specific activity within the dementia evaluation, namely the test of cognitive functioning. Special attention will be paid to the phenomenon ‘repair’, i.e., participants’ joint attempts to solve upcoming difficulties during the course of interaction. Results show that sources of trouble may be related to the lack of cultural, linguistic, and educational adaptation of the test to the patient, and to interpreter and clinician practises. Findings will be discussed in terms of test-validity, clinician and interpreter training, and the institutional goals and constraints of the dementia evaluation. The methodology Conversation Analysis has been used to conduct a highly detailed analysis of participants’ practices and actions during the administration of the test.

Dementia care for people from ethnic minorities: a Nordic perspective

Most Western countries have a sizeable ethnic minority migrant population. Although traditionally culturally homogenous, this is also true for the Nordic countries. In 2013, the population of foreign-born and first degree descendants constituted 21% of the population in Sweden (http://www.scb.se), 14% in Norway (http://www.ssb.no), 9% in Denmark (http://www.statistikbanken.dk), and 4% in Finland (http://www.stat.fi). Ethnic minority groups differ substantially between countries. Although differences also exist between the Nordic countries, migrants from former Yugoslavia, Turkey, Pakistan, and Poland represent some of the largest ethnic minority groups across the countries. The ethnic minority populations in Nordic countries are younger than the majority populations, but during the next decades, many will reach old age. Thus, the number of people from ethnic minorities with dementia is expected to increase considerably during the next 25 years (Figure 1). On the basis of this fact, Nordic countries now face an increasing demand for assessment, treatment, support, and care for people from ethnic minority groups. Although pioneering studies on dementia care for people from the Finnish minority in Sweden were conducted in the early 1990s (Ekman, 1993), it is not until the last 5 years that research and developments in the field of dementia and ethnic minorities have slowly emerged throughout the Nordic countries. Taken together, the research and clinical experiences indicate that the current practice for care for people from ethnic minority groups is suboptimal. Older members from ethnic minority groups and their families seem to underuse dementia services, and only 11% of the expected number of elderly from ethnic minorities with dementia receives a formal dementia diagnosis (Nielsen et al., 2011). This is concerning as it may lead to poorer dementia outcome and care for people from ethnic minorities. The barriers to accessing dementia services have not been well studied but may include language barriers, different help-seeking patterns, poor knowledge, and misconceptions about dementia, in addition to different cultural views on caregiving. When evaluating memory problems in patients from ethnic minorities, clinicians sometimes rely on unqualified interpreters or family members as interpreters. This may affect the evaluation and be a barrier for efficient communication. Also, most clinics perform assessments with cognitive instruments that are only validated in Western populations. These challenges are not only present in the Nordic countries but seem to be similar across Europe (Nielsen et al., 2011). Although the Rowland Universal Dementia Assessment Scale has been validated (Nielsen et al., 2013) and implemented for multicultural cognitive screening in several dementia clinics across Denmark, Sweden, and Norway, culture sensitive dementia services are generally lacking. In Nordic countries, few older members from ethnic minority groups live in care facilities, and when they do, the communication and interaction between staff and elderly, who do not have any language in common, has proven to be challenging and to affect the quality of care (Plejert et al., 2014). Mainstream care facilities are rarely prepared to provide appropriate services for patients and families from ethnic minorities, as they often will have different needs and expectations to the dementia services. Although efforts to deliver culturally sensitive and appropriate care for elderly from ethnic minorities exist in all Nordic countries, they are scarce. Figure 1 Prognosis for foreign-born and first degree descendants with dementia in Denmark. Prevalence estimates are based on demographic data from Statistics Denmark and West European dementia prevalence rates from the World Alzheimer Report 2009.

Interaction and common ground in dementia: Communication across linguistic and cultural diversity in a residential dementia care setting

Previous research concerning bilingual people with a dementia disease has mainly focused on the importance of sharing a spoken language with caregivers. While acknowledging this, this article addresses the multidimensional character of communication and interaction. As using spoken language is made difficult as a consequence of the dementia disease, this multidimensionality becomes particularly important. The article is based on a qualitative analysis of ethnographic fieldwork at a dementia care facility. It presents ethnographic examples of different communicative forms, with particular focus on bilingual interactions. Interaction is understood as a collective and collaborative activity. The text finds that a shared spoken language is advantageous, but is not the only source of, nor a guarantee for, creating common ground and understanding. Communicative resources other than spoken language are for example body language, embodiment, artefacts and time. Furthermore, forms of communication are not static but develop, change and are created over time. Ability to communicate is thus not something that one has or has not, but is situationally and collaboratively created. To facilitate this, time and familiarity are central resources, and the results indicate the importance of continuity in interpersonal relations.

‘Would you like to use one of these or would you rather be able to talk?’ – facilitated and/or augmentative communication and the preference for speaking

This article examines the concepts of identity and personhood in relation to people with severe communicative disabilities. Data gathered at a Swedish day centre for people with acquired brain dama ...