Dementia Across Cultural Borders

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.

Seeking to assist professionals and care providers looking to develop culturally-based techniques for the care of dementia-afflicted elders, this book first presents the need for culturally sensitive care, and then describes how this method of care may be utilized, developed, approved, and evaluated. The book includes numerous case studies, and highlights the authors' model.; Dealing with facets of intercultural practice, Part 1 of the text centres around the professional or provider already engaged or seeking to engage in day-to-day contact with ethnically diverse clientele. The emphasis is on highlighting those skills which serve the practitioner to establish intercultural rapport on their daily cross- ethnic assignments. The central tenet of this section is that the worker's attention has to be on maintaining both the dementia-affected elders' and the ethnic family members' cultural dignity.

This fascinating book examines the concept of culture from a unique perspective--that of individual occupational therapists who have worked in environments very different from those in which they were educated or had worked previously. In Occupational Therapy Across Cultural Boundaries, six occupational therapists relate their experiences living and working in a foreign culture. Each author describes the daily demands placed upon her through immersion into a different way of life and discusses the environmental challenges she had to overcome to be able to live and work successfully. Many of the cultural differences the authors faced forced them to reassess and reconstruct their most basic assumptions of both personal and professional life as they discovered that activities and theories common or applicable in one culture are not necessarily translatable into another. The authors also analyze culture across treatment areas in occupational therapy practice, including mental health and physical disability, with both adults and children. Both beginning and experienced occupational therapists and occupational therapy students will find much valuable information in Occupational Therapy Across Cultural Boundaries. Whether interested in examining occupational therapy’s application to non-Western cultures, or actually contemplating practicing in a different culture, readers will benefit from learning about the experiences of the authors. This unique book is also helpful for occupational therapy students wishing to examine the philosophy of occupational therapy or the significance of culture to human occupation. Professors will find it useful as an ancillary textbook for undergraduate and graduate courses in occupational therapy on topics such as theory, occupation across cultures, or meaningful activity.

This book brings together international, linguistic research with a focus on interaction in multilingual encounters involving people with dementia in care and healthcare settings. The methodologies used (Conversation Analysis, Ethnography and Discursive Constructionism) capture practices on the micro-level, revealing how very subtle details may be of critical importance for the everyday well-being of participants with dementia, particularly in settings and contexts where there is a lack of a common verbal language of interlocutors, or where language abilities have been lost as a result of dementia. Chapters analyse the practices and actions employed by interlocutors to facilitate mutual understanding, enhance high-quality social relations and assure optimal care and treatment, in spite of language and cognitive difficulties, with an emphasis put on the participants’ remaining capacities, and what can be achieved between people with dementia and their interlocutors in a collaborative fashion. This book goes beyond the study of two-party communication to address multiparty and group interactions which are common in residential care and other healthcare settings and will be of interest to professionals and policy makers as well as to medical sciences and linguistics researchers and students.

To provide high quality dementia care, professionals need to be both knowledgeable about dementia and skilled in the provision of care. This book is an introductory reference guide that will help students, professionals and practitioners develop their skills and expertise to better respond to the needs of people with dementia. It sets out information and advice on essential topics, research and evidence-based practice within dementia care in a clear, sensible way. Based on the standard course structure for higher and further dementia education, this wide-ranging textbook covers topics including dementia diagnosis, person-centred care and law, ethics and safeguarding. The new go-to book for the dementia curriculum, it is an invaluable tool for anyone wishing to improve the required core skills and values needed to care for those affected by dementia.

This book is available as open access through the Bloomsbury Open programme and is available on www.bloomsburycollections.com. It is funded by The Wellcome Trust. The Diseased Brain and the Failing Mind charts changing cultural understandings of dementia and alzheimer's disease in scientific and cultural texts across the 20th Century. Reading a range of texts from the US, UK, Europe and Japan, the book examines how the language of dementia – regarding the loss of identity, loss of agency, loss of self and life – is rooted in scientific discourse and expressed in popular and literary texts. Following changing scientific understandings of dementia, the book also demonstrates how cultural expressions of the experience and dementia have fed back into the way medical institutions have treated dementia patients. The book includes a glossary of scientific terms for non-specialist readers.

Older Americans, even the oldest, can now expect to live years longer than those who reached the same ages even a few decades ago. Although survival has improved for all racial and ethnic groups, strong differences persist, both in life expectancy and in the causes of disability and death at older ages. This book examines trends in mortality rates and selected causes of disability (cardiovascular disease, dementia) for older people of different racial and ethnic groups. The determinants of these trends and differences are also investigated, including differences in access to health care and experiences in early life, diet, health behaviors, genetic background, social class, wealth and income. Groups often neglected in analyses of national data, such as the elderly Hispanic and Asian Americans of different origin and immigrant generations, are compared. The volume provides understanding of research bearing on the health status and survival of the fastest-growing segment of the American population.