Multilingual Interaction and Dementia 9781783097678

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Multilingual Interaction and Dementia

COMMUNICATION DISORDERS ACROSS LANGUAGES Series Editors: Dr Nicole Müller and Dr Martin Ball, Linköping University, Sweden The discipline of communication disorders has made great strides over the last 50 years and more. We now know much more about the nature and causes of breakdowns in speech and language, in both adults and children. We know more about how to classify these breakdowns, how to describe and analyze pathological speech and language, and how to treat communication disorders. Unfortunately, a large proportion of this work is restricted to a small number of European languages; indeed, much of it is on and in English alone. Research in communication disorders in languages other than English has seen a marked increase in recent years, as has the investigation of such disorders in speakers of more than one language, and communities where bi- and multilingualism is the norm. This series serves to spotlight new and ongoing research in communication disorders across languages. We aim to do this by including studies of communication disorders (including assessment methods and guidelines for intervention) in particular multilingual communities, studies of the manifestations of specific types of disorder in a range of languages (particularly lesser researched languages), and of communication breakdown in bi- and multilingual speakers. Books in the series are used by practitioners, researchers and students, and they address a range of topics, including speech and language disorders in children, literacy, acquired speech and language disorders in adults, fluency, and voice. Full details of all the books in this series and of all our other publications can be found on http://www.multilingual-matters.com, or by writing to Multilingual Matters, St Nicholas House, 31–34 High Street, Bristol BS1 2AW, UK.

COMMUNICATION DISORDERS ACROSS LANGUAGES: 16

Multilingual Interaction and Dementia

Edited by Charlotta Plejert, Camilla Lindholm and Robert W. Schrauf

MULTILINGUAL MATTERS Bristol • Blue Ridge Summit

Library of Congress Cataloging in Publication Data A catalog record for this book is available from the Library of Congress. Names: Plejert, Charlotta, editor. | Lindholm, Camilla, – editor. | Schrauf, Robert W., editor. Title: Multilingual Interaction and Dementia/Edited by Charlotta Plejert, Camilla Lindholm and Robert W. Schrauf. Description: Bristol: Blue Ridge Summit : Multilingual Matters, [2017] | Series: Communication Disorders Across Languages: 16 | Includes bibliographical references and index. Identifiers: LCCN 2016053129| ISBN 9781783097661 (hbk : alk. paper) | ISBN 9781783097685 (epub) | ISBN 9781783097692 (kindle) Subjects: LCSH: Multilingualism—Psychological aspects. | Communicative disorders in old age. | Dementia. | Older people with disabilities. | Neurolinguistics. | Anthropological linguistics. Classification: LCC P115.4.M75 2017 | DDC 404/.2019—dc23 LC record available at https://lccn.loc.gov/2016053129 British Library Cataloguing in Publication Data A catalogue entry for this book is available from the British Library. ISBN-13: 978-1-78309-766-1 (hbk) Multilingual Matters UK: St Nicholas House, 31–34 High Street, Bristol BS1 2AW, UK. USA: NBN, Blue Ridge Summit, PA, USA. Website: www.multilingual-matters.com Twitter: Multi_Ling_Mat Facebook: https://www.facebook.com/multilingualmatters Blog: www.channelviewpublications.wordpress.com Copyright © 2017 Charlotta Plejert, Camilla Lindholm, Robert W. Schrauf and the authors of individual chapters. All rights reserved. No part of this work may be reproduced in any form or by any means without permission in writing from the publisher. The policy of Multilingual Matters/Channel View Publications is to use papers that are natural, renewable and recyclable products, made from wood grown in sustainable forests. In the manufacturing process of our books, and to further support our policy, preference is given to printers that have FSC and PEFC Chain of Custody certification. The FSC and/or PEFC logos will appear on those books where full certification has been granted to the printer concerned. Typeset by Nova Techset Private Limited, Bengaluru and Chennai, India. Printed and bound in the UK by the CPI Books Group Ltd. Printed and bound in the US by Edwards Brothers Malloy, Inc.

Contents

Contributors Acknowledgements Foreword by Sinfree Makoni

vii xiii xv

1

Multilingual Interaction and Dementia Charlotta Plejert, Camilla Lindholm and Robert W. Schrauf

2

Ageing as a Swedish-speaking Finn: Positioning and Language Choice at a Nursing Home Camilla Lindholm

23

3

‘Fear nó Bean, a Man or a Woman?’ Bilingual Encounters in Residential Eldercare in Ireland Nicole Müller

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4

Epistemic Negotiations in Interpreter-mediated Dementia Evaluations: The Cooperative Role of Patients’ Relatives Ali Reza Majlesi, Eleonor Antelius and Charlotta Plejert

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5

Creating Opportunities for Residents to Engage in Social Exchange: Brokering in Multilingual Residential Care Settings Gunilla Jansson and Cecilia Wadensjö

6

Verbal and Nonverbal Turn-taking Actions of Care Staff and Residents in Linguistically Diverse Long-term Care Settings Jeff Small, Sing Mei Chan, Elisabeth Drance, Judith Globerman, Lorraine Ho, Wendy Hulko, Deborah O’Connor, JoAnn Perry and Louise Stern

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Accommodation Practices in Multilingual Encounters in Swedish Residential Care Maziar Yazdanpanah and Charlotta Plejert

v

1

103

133

148

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Training in Clinical Assessment: Proxying, Translating and Voice-over as Discursive Devices Robert W. Schrauf and Michael Amory

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Challenges and Experiences in Training Multilingual, International Direct Care Workers in Dementia Care in the United States Boyd Davis and Margaret Maclagan

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10 Multilingual Interaction and Dementia: Future Directions for Research and Practice Charlotta Plejert, Camilla Lindholm and Robert W. Schrauf Index

230 241

Contributors

Michael Amory is currently a PhD candidate in applied linguistics at The Pennsylvania State University. His research interests include: applying a sociocultural theoretical perspective to L2 language teaching and learning; the development of L2 teacher cognition; the theory and practice of L2 teacher education; and utilizing the framework of conversation analysis to analyze classroom interactions and institutional discourse. Amory has forthcoming publications in TESOL Journal (Wiley) and International Journal of the Sociology of Language (De Gruyter). Eleonor Antelius holds a position as a lecturer of medical anthropology in ageing and later life at the Department of Social and Welfare Studies, and she is a researcher at the Centre for Dementia Research (CEDER) at Linköping University, Sweden. Her research primarily concerns communicative disorders in relation to meaning-making processes and how people are able to maintain/uphold a sense of self. Social interaction, identity, embodiment, ethnicity, migration and cross-cultural perceptions and experiences of illnesses and ageing are all central concepts in her research. Antelius has initiated and coordinates the international research network Different Dementias as well as being elected President of The Nordic Research Network on Ethnicity and Dementia. She has published in international journals and was leading guest editor of a special issue on ethnocultural contextualization of dementia care in Care Management Journals 16 (2) (2015) as well as being co-editor of Living with Dementia: Relations, Responses and Agency in Everyday Life (Palgrave Macmillan, 2017). Sing Mei Chan trained and completed her PhD at the Centre for Research on Personhood in Dementia in the School of Social Work of the University of British Columbia. Her research interest focused on different ethnocultural groups in Greater Vancouver, specifically how the cultural understandings of dementia of the groups related to their perception of the illness, meaning of life and caring in the families. She is further exploring the meanings of being and the value of life while teaching part-time in the area of research, practice and policy in social work at the University of Northern British Columbia. vii

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Boyd Davis is Cone Professor of Teaching, Professor of Applied Linguistics and Affiliate Professor of Gerontology at UNC Charlotte and a member of the COIN/HEROIC research team at Ralph H. Johnson VA in Charleston, SC. Her current research is on medical (patient-provider) and Alzheimer’s discourse; she also develops and tailors multimedia communications interventions and training materials. Davis is co-principal investigator on the NIH/ NLM-funded web portal, Carolinas Conversations Collection. Recent edited collections include Pragmatics in Dementia Discourse (with J. Guendouzi), Pauses, Fillers and Placeholders (with N. Amiridze and M. Maclagan) and Alzheimer Talk, Text and Context. Elisabeth Drance is an Associate Clinical Professor in the Department of Psychiatry at the University of British Columbia. She has worked with older adults living with dementia, their families and the staff who care for them, with a specific interest in person-centred dementia care, culture change in residential care, and dementia-related responsive behaviours. Drance is currently exploring the benefits of mindfulness practice for people living with dementia and their caregivers. Judith Globerman is an Associate Professor Emeritus from the Institute for Health Promotion Research at the University of British Columbia. Her research investigated the experiences of families caring for relatives with dementia. Globerman also practised for 12 years in the field of gerontology as the Executive Leader of Care and Interim CEO at a large public/private long-term care and assisted living home in British Columbia. Lorraine Ho is a Master’s degree student of speech-language pathology at Boston University. She has several years of experience working on research related to dementia and communication. Wendy Hulko is an Associate Professor in the Faculty of Education and Social Work at Thompson Rivers University. She holds a BA Hon in sociology and Spanish (Trent University), a MSW (University of Toronto), and a PhD in sociology and social policy (University of Stirling). Hulko is affiliated with the Institute for Intersectionality Research and Policy at SFU and the Centre for Research on Personhood in Dementia at UBC, and conducts research on experiences of ageing, views of dementia and culturally safe care with the local health authority and equity-seeking groups, including Indigenous elders, older women and rural residents. Gunilla Jansson is Professor of Swedish Language at the Department of Swedish Language and Multilingualism at Stockholm University, Sweden. Her research interests include care home communication, training of care workers, and multilingual communication in dementia care and elderly care. She works

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within the theoretical and methodological frameworks of applied conversation analysis and ethnography. Camilla Lindholm is Acting Professor at the Department of Finnish Language, Finno-Ugrian and Scandinavian Studies at the University of Helsinki. Her main research areas are interaction in institutional settings, and asymmetric interaction involving participants with communication impairment. She has published in the areas of medical interaction, structures in spoken Swedish, and dementia and communication. Lindholm’s methodological approaches are conversation analysis and interactional linguistics, and she takes an interest in applying her research findings and creating a dialogue with society. Recent projects include ‘Dementia and Interaction – Intersections of Research and Communication Training’ (Academy of Finland, 2013–2018). Margaret Maclagan is a retired linguist from the University of Canterbury, New Zealand where she was a full professor in the Department of Communication Disorders. Her research areas include sound change over time in New Zealand English and in Māori, and language change over time in people with Alzheimer’s disease. Maclagan is a co-author of two books on New Zealand English, New Zealand English: Its Origins and Evolution (with Elizabeth Gordon et al., 2004) and New Zealand English (with Jennifer Hay & Elizabeth Gordon, 2008), and co-editor with Boyd Davis and Nino Amiridze of Fillers, Pauses and Placeholders (2010). Ali Reza Majlesi, a collaborator with the Center for Dementia Research at Linköping University, is an interaction analyst. He has conducted his postdoctoral research on communication and joint activities with people with dementia. His research interests lie in methods and practices, including the mobilization of embodied resources, in interaction with people with various communicative and cognitive abilities. Majlesi is currently affiliated with Stockholm University as a Senior Lecturer at the Department of Education. Sinfree Makoni teaches in the Department of Applied Linguistics and African Studies, at Penn State University. He is a Research Fellow in the English Department at the University of South Africa, Pretoria. He holds a PhD in Applied Linguistics from Edinburgh University. Makoni’s main interests are in ageing and health, language and politics, and philosophies of language. Some of his work has been published in Current Issues in Language Planning, Language Policy and the Journal of Multilingual and Multicultural Development. Nicole Müller has research interests in multilingualism, and acquired disorders of communication and cognition such as dementia, dysarthria and

x Mult ilingual Interac t ion and Dement ia

aphasia. She co-edits the journal Clinical Linguistics and Phonetics and the book series Communication Disorders across Languages. Müller is a Professor of Speech and Language Pathology at Linköping University, Sweden, and will take up the Professorship in Speech and Language Sciences at University College Cork, Ireland, in 2017. Deborah O’Connor is a Professor in the School of Social Work at the University of British Columbia (UBC). She is also the co-director and a health researcher in the Centre for Research on Personhood in Dementia (CRPD) at UBC. She obtained her PhD in Social Work (Aging and Family Care) at the Wilfrid Laurier University. O’Connor’s primary area of research utilizes a social citizenship lens to understand the experience of living with dementia and to promote social change to address issues of stigma and discrimination. JoAnn Perry is a Professor Emerita in the University of British Columbia School of Nursing, and, prior to retirement, she was a researcher in the Centre for Research on Personhood in Dementia. Her work focused on communication in dementia in the home with family caregivers and with staff in care facilities. The family work sought to explore the differences in specific family roles and more specifically, on the approaches and strategies that promoted successful exchanges. Charlotta Plejert is an Associate Professor of Linguistics at the Department of Culture and Communication and a researcher at the Center for Dementia Research (CEDER) at Linköping University, Sweden. Her main research interests are language and interaction involving children and adults with communicative impairments, multilingualism and ethnicity in dementia, and first and second language acquisition over the lifespan. Plejert primarily works within the theoretical and methodological frameworks of (applied) conversation analysis and dialogism. She is Co-Editor of the Journal of Interactional Research in Communication Disorders (Equinox). Robert W. Schrauf is Professor and Head of the Department of Applied Linguistics at Pennsylvania State University. He conducts empirical research on language, ethnicity and Alzheimer’s disease, and methodological research on the use of mixed methods for making cross-cultural comparisons. Schrauf co-edited Language Development over the Lifespan (with Kees de Bot, University of Groningen, 2009) and Dialogue and Dementia: Cognitive and Communicative Resources for Engagement (with Nicole Müller, University of Linköping, 2014). His forthcoming monograph is entitled Mixed Methods: Interviews, Surveys, and Cross-Cultural Comparisons (Cambridge University Press, 2017). Schrauf is a Fellow of the Gerontological Society of America.

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Jeff Small is an Associate Professor in the School of Audiology and Speech Sciences at the University of British Columbia (UBC). He is also a health researcher in the Centre for Research on Personhood in Dementia at UBC. Small obtained his PhD in applied linguistics at the University of Southern California, followed by postdoctoral fellowships in gerontology at the University of Kansas and Simon Fraser University. His research investigates how persons with Alzheimer’s disease and their care partners may benefit from using memory and communication strategies in their everyday interactions. Louise Stern is a social work faculty member in the Faculty of Health and Human Services and Chair of the Graduate Diploma in Gerontology at Vancouver Island University. Her research and practice interests are focused on cultural trauma and dementia, diversity and the experience of ageing, and promoting gerontological practice in social work. Cecilia Wadensjö holds a position as Professor of Interpreting and Translation Studies at the Institute of Interpreting and Translation Studies, Department of Swedish Language and Multilingualism, Stockholm University, Sweden. Wadensjö has published extensively on interpreter-mediated social interaction, drawing on naturally occurring interpreter-mediated discourse, documented in medical, legal, broadcast and other institutional settings. Among her publications is the widely cited monograph Interpreting as Interaction (Longman, 1998). She is a member of the editorial board of Interpreting. Journal of Research and Practice in Interpreting (John Benjamins). Maziar Yazdanpanah is a PhD candidate in language and culture, with a specialization in linguistics, at Linköping University, Sweden. His dissertation is part of a project on multilingual practices and pedagogical challenges in older people’s care, which focuses on multilingual practices used in mundane care work and their significance for care providers’ professional development. Yazdanpanah is particularly interested in how participants use multimodal resources in order to achieve mutual understanding in circumstances when participants have limited access to a common verbal language, and he uses conversation analysis and ethnography in his work.

Acknowledgements

Many people have contributed in important ways to this volume. We owe special thanks to Dr Eleonor Antelius at the Center for Dementia Research (CEDER) at Linköping University, Sweden, who came up with the initial idea for the book. Eleonor, Professor Lars-Christer Hydén and the entire research team at CEDER have provided a rich, stimulating and critical environment, which in important ways assisted throughout the process of creating this book. CEDER have been substantially funded by Riksbankens Jubileumsfond – The Swedish Foundation for Humanities and Social Sciences (Grants No. M10-0187:1 and F13-1408:1), to whom we owe a great debt. We also thank the Academy of Finland (Project No. 256792), without the support of whom this book would not have been feasible. Finally, we are humbly grateful to all the contributors to this volume, the commissioning editors and series editors, whose great engagement, efforts, skills and professionalism made this project a sincere joy. Charlotta Plejert, Camilla Lindholm and Robert W. Schrauf

xiii

Foreword Sinfree Makoni

It was a privilege to be asked to write a foreword to this book, Multilingual Interaction and Dementia. The opportunity motivated me to reflect on the intersection of multilingualism and sociolinguistics and the implications on a framework for dementia. My suggestion is that research into ageing, dementia and other late life issues will have a larger impact if it is able to illuminate other research areas.

Description of the Book and Comments It was enlightening to read about the empirical projects reported in this book. These projects were carried out primarily to address specific issues about dementia as viewed through a multilingual lens. This book is intellectually enriching because of the varying theoretical frameworks that undergird the research and form the basis of the book chapters. These theories range from conversational analysis to accommodation theory and ethnomethodology. The multilingual shift in dementia research reflects an increasing interest and awareness of the importance of multilingualism in a number of disciplines, including second language acquisition (SLA). The concept of multilingualism undoubtedly warrants a short analysis and exposition due to the centrality of the multilingualism theme in this book, possible implications on other research areas, and the fact that this book is appropriately published by Multilingual Matters. As the authors and editors correctly point out, interest in multilingualism is a critique of a ‘monolingual mindset’, a mindset that wrongly permeates both popular and academic research given that the world is predominantly multilingual. As I have argued together with Pennycook and others, even though the idea of multilingualism as an analytical framework is relatively recent, multilingualism as a sociolinguistic phenomenon can be traced back into history, having preceded European colonialism in Africa. Given that the monolingual mindset yields great power and influence in the literature, areas such as code-switching require a sociolinguistic explanation. Some studies in the book that briefly discuss code-switching additionally draw attention to how difficult this practice is to define. xv

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Even though the idea of multilingualism may be in vogue, a critique of multilingualism, as I have argued over the years with Pennycook (Makoni & Pennycook, 2007, 2012), runs into a serious philosophical problem, because it underestimates the intransigency of the notion of monolingualism and the degree to which it permeates discussions of multilingualism, even by those seeking to move away from it. Most of the research into multilingualism has not succeeded in overcoming the monolingual mindset, with the result that multilingualism is construed as plural monolingualisms or plural singularity (Makoni & Pennycook, 2012). From this perspective, a critique of multilingualism does not take us very far because it is based on exactly the same ideology that forms the basis of monolingualism – the idea that languages are codes and can be easily enumerated. It is within a framework of multilingualism as a plural monolingual mindset that we can understand research that seeks to explore the variable impact of dementia on the first or second language. An alternative perspective of multilingualism that occurs in the book, although less prevalent than plural monolingualism, is one whose primary objective is to frame language in terms of semiotic practices, repertoires and styles. This idea of multilingualism as repertoires and resources, as an integration of body and language movements, constitutes the basis of the analytical framework of some of the chapters in this book. An awareness of the existence of different languages that make up an individual’s repertoire is clearly beneficial to the caregiver and researcher into dementia; sensitivity to the complex nature of the repertoires, the bits and pieces of language that a person with dementia may have picked up during their vast and complex social experience, is an even more important and relevant sociolinguistic matter. An individual’s uniqueness and creativity may be captured through the ways in which that individual employs the multiple semiotic elements. If the notion of repertoires and individual creativity is construed as central to sociolinguistic analysis, then an evaluation of individuals with dementia must take into account the ability of the individual to execute specific activities as well as the individual’s unique social and linguistic experiences. The perspective that I propose here clearly complements the importance placed on interaction as found within the book. There is, however, one minor difference in that, with the approach that places a premium on repertoires and styles, language use among people with dementia is construed as an activity that goes beyond linguistic performance, and whose forms and functions are to some degree unpredictable and indeterminate. If repertoires, styles and registers constitute the basis of language use when utilizing a sociolinguistic framework, then issues about diversity must be handled within research on multilingualism. The book clearly draws attention to underlying notions of diversity. From a sociolinguistic perspective, diversity itself may be complicated due to power differences. Diversity may unintentionally end up as a covert way of imposing the caregiver’s and

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researcher’s ideological positions on the vulnerable elderly. A sociolinguistics of commodification has to move away from organicist metaphors, first language, native speakers, mother tongues and the like, which tend to treat language as reified entities. Furthermore, we need to be wary of framing cultural concepts such as diversity in an organicist fashion. A key issue that runs through the book is the need to develop reliable and valid methods of evaluation. It is important, though, to stress that mode of evaluation, regardless of whether designed for dementia or other cognitive impairments, should be socially and culturally embedded, and the role and functions that the individual with dementia plays may go beyond that of being a benign participant. Every individual, including those at advanced stages of dementia, is able to align or subvert the research process because it is human nature. Any research, including that which is reported in this book, is situated within specific cultural contexts, and individuals within any contexts are influenced by their philosophy of human existence. From an African spiritual perspective, caregiving is motivated by ubuntu. Ubuntu means that an individual is a person through other people – that through interaction individuals are able to retain and reinforce their humanity. Our humanness is reflected in how we treat others; we are intricately interwoven with other people socially, and language may be construed as one component of social engagement. As correctly indicated in different chapters of the book, when an individual gets dementia it not only affects the individual but family members related to the individual as well. It is good to have an end to journey toward; but it is the journey that matters, in the end. (Ernest Hemingway)

References Makoni, S. (2014) Multilingualism: Spontaneous orders and System D: A concluding note. International Journal of Bilingual Education and Bilingualism 17 (6), 714–717. Makoni, S. and Pennycook, A. (2007) Disinventing and reconstituting languages. In S. Makoni and A. Pennycook (eds) Disinventing and Reconstituting Languages (pp. 1–41). Clevedon: Multilingual Matters. Makoni, S. and Pennycook, A. (2012) Disinventing multilingualism: From monological multilingualism to multilingua francas. In M. Martin-Jones, A. Blackledge and A. Creese (eds) The Routledge Handbook of Multilingualism (pp. 439–452). London: Routledge.

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Multilingual Interaction and Dementia Charlotta Plejert, Camilla Lindholm and Robert W. Schrauf

Introduction The purpose of this book is to shed light on multilingual, everyday conversational and clinical interactions among multilingual persons with dementia, their caregivers and families. If Grosjean (1994) was correct in estimating that half of the world’s population uses more than one language or dialect in everyday life, then clearly there are many older adults with dementia who both speak more than one language and whose daily interactions are likely to be multilingual. Nevertheless, as we discuss below, there is little literature on the specific issue of multilingualism and actual talkin-interaction among persons with dementia, their caregivers and family members. The various contributors conduct detailed description and careful analysis of such interactions for the purpose of enriching our understanding of multilingualism and dementia and developing a solid empirical foundation for improving communication and quality of life of multilingual persons with dementia, their relatives, staff in residential care and clinical practitioners. Each chapter highlights 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 challenges. The term multilingual is used in a broad sense here, in order to capture the large range of settings and circumstances in which persons with dementia find themselves, illustrated in the various chapters. Most participants in the studies presented in this volume speak or have actively acquired and used two or more languages over their lifespan, but some of the chapters also highlight social encounters of persons with dementia who have less balanced competence in their various languages. An example of this complex language landscape could be a Kurdish woman from Iraq, with Kurdish as her mother tongue, also speaking some Arabic and Turkish, who has migrated to Sweden in old age to live with her daughter. Her knowledge of the 1

2 Mult ilingual Interac t ion and Dement ia

language of the host country might therefore be quite limited. Living with her family is possible until her condition makes medical attention and professional care necessary, so she moves into residential care. In the residential care unit, caregiving staff might either be monolingual speakers of Swedish, or speaking Swedish as a second language, not necessarily being competent in any of the woman’s languages. Thus, the different chapters of this book do not only deal with persons with dementia who are multilingual, but with settings permeated by the different languages and cultures of all participants involved. By means of detailed scrutiny of interaction, it is demonstrated how these participants, together, navigate through the maze of mundane as well as clinical activities that make up everyday life.

The Problem: Challenges Facing Multilingual Persons with Dementia To be able to communicate with other people in meaningful ways is key for the autonomy, sense of self, identity and wellbeing of human beings. When a person is afflicted by the progressive cognitive impairment characteristic of the various dementias, their language and communication skills will be affected in different ways over the course of the illness. The gradual loss of both spoken and embodied resources, including gestures, facial expressions and body movements, can severely hamper a person’s opportunities, capabilities, confidence and willingness to partake in social activities. In turn, this suite of losses can lead to social isolation, depression and, in some cases, the acceleration of cognitive decline. Clearly, it is of paramount importance to intervene in this communicative and psychological cascade in whatever way possible. Research in this area in recent years has proactively explored a promising shift from a focus on linguistic deficits and inexorable decline to a focus on the optimization of preserved communicative resources (Davis & Guendouzi, 2013; Hydén et al., 2014; Schrauf & Müller, 2014; see also Leibing & Cohen, 2006). This new direction in research can be traced to seminal works on the language abilities of persons with dementia by Guendouzi and Müller (2006), Hamilton (1994), Ramanathan (1997) and Sabat (2001), which in turn have triggered new and promising research on the facilitative actions and practices of spouses at home, children, and staff in residential care and various healthcare settings (Davis et al., 2011; Jansson, 2014; Jansson & Plejert, 2014; Lindholm, 2008, 2015; Majlesi & Ekström, 2016; Small et al., 2015). Nevertheless, the majority of research to date on interaction in dementia has dealt with monolingual encounters (for an excellent introduction to methods, see Guendouzi & Müller, 2006), leaving aside the pressing needs and complexities of multilingual and multicultural encounters. This is surprising, since multilingualism in most countries of the world is the rule

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3

rather than the exception (de Bot & Makoni, 2005). The twin forces of globalization and political instability in many parts of the world have triggered massive migration across cultural borders. As a result, countries that may have been relatively ethnoculturally homogeneous are becoming increasingly diverse. In these countries, the number of ageing immigrants is rapidly multiplying, and health centres, hospitals and residential care facilities are experiencing a sudden and dramatic rise in numbers of patients and clients from culturally and linguistically diverse backgrounds. Similarly, in many of the world’s already ethnoculturally diverse countries there are ageing populations that often lack access to healthcare in their native languages. Given that age is the major risk factor for Alzheimer’s and other dementias, it is not surprising that a significant number of these older persons will also be affected by cognitive decline and dementia, which (again) has serious consequences for their abilities to communicate. In addition, globalization and immigration have occasioned an ethnoculturally diverse workforce within the care and healthcare sector. Whereas this diversity is primarily a great asset (e.g. Jansson, 2014), it nonetheless adds further to the complexity of social interaction in healthcare encounters and other settings of significance for the maintenance of quality of life for multilingual people with dementia. As with monolinguals, multilingual persons with dementia also experience a gradual loss of their language and communicative abilities. In contrast to monolinguals, however, multilingual persons are more likely to experience social encounters with caregivers, or clinical staff with whom they share very limited or no verbal language at all. This may pose challenges for the establishment of mutual understanding, and for building rapport and trustful relationships. However, as will be demonstrated in this book, the detailed scrutiny of interlocutors’ embodied actions and utilization of prosodic resources also reveals the subtle means by which affiliation can be expressed despite limitations in a shared spoken language (Small et al., this volume; Yazdanpanah & Plejert, this volume). The importance of increased awareness of interactional strategies that may be described as embodied will be returned to in the final chapter, where the practical implications and applications of the chapters are discussed further.

Previous Research: Studies on Multilingualism and Ageing/Ethnicity and Dementia Even within the larger literature on dementia in cognitive, neurological and psycholinguistic domains there are few studies of multilingual persons with dementia, and what few there are deal primarily with multilingualism and ageing more generally (e.g. de Bot & Makoni, 2005; Schmid & Lowie, 2011, particularly parts II and III), potential cognitive benefits of multilingualism in relation to dementia (e.g. the seminal work by Bialystok et al.,

4 Mult ilingual Interac t ion and Dement ia

2007, 2014; Luk et al., 2011), or are concerned with matters of language attrition and reversion to first (L1) and second languages (L2) over the lifespan (e.g. de Bot & Weltens, 1995; Paradis, 2007; Schmid, 2009, to mention a few). In addition to these cognitively oriented approaches, there is developing research on ethnicity and dementia that speaks obliquely to the situation of multilinguals. For instance, the volume edited by Yeo and GallagherThompson (2006) addresses the specificities of dementia in relation to certain ethnic groups (e.g. American Indian, African American, Asian Indian American, Hispanics, and so on), both in terms of epidemiology and dementia assessments and in discussions on family caregiving and services. However, although informative and important, these studies do not emphasize the actual practices and actions that prevail in real everyday multilingual encounters involving people with dementia, their next of kin, staff and clinicians, in the focus of the current volume.

Three Extant Literatures on Multilingual Interaction and Dementia Very little is known about multilingual interaction and dementia in which detailed analyses are made of interlocutors’ efforts to achieve mutual understanding. There are some tantalizing exceptions, however, and we have collected these literatures in three categories for brief review below. First, there are several studies that in different ways approach issues around codeswitching, including language loss, language choice and language separation in multilingual people with dementia, Secondly, there are studies concerning the challenges (and dangers) of administering neurocognitive assessment instruments with patients who have limited literacy, and/or do not speak the languages of the clinicians administering them. Thirdly, there are a handful of studies on multilingual encounters between caregivers and residents with dementia in residential care. This research addresses the challenges facing multilingual persons with dementia, their families, and staff in short- or long-term care units. In particular, some studies investigate interaction within ethnoculturally profiled residential care, i.e. facilities where staff speak the same language as the residents, and where the environment, food, and so on have been culturally adapted in various ways to their dwellers. It should be noticed that many of the scholars involved in this prior work are also contributors to the present volume.

Codeswitching in dementia Among the studies that have focused on spoken language and interaction involving multilingual persons with dementia, there are investigations of language choice and language separation, often with a particular emphasis

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on patterns of codeswitching (Albert & Obler, 1978; Hyltenstam, 1995; Hyltenstam & Stroud, 1989, 1993; Luderus, 1995). Codeswitching may be defined as the ‘alternating use of two or more “codes” within one conversational episode’ (Auer, 1998: 1), and may concern anything from the insertion of a single word from one language into a stretch of talk in another language, to mixing phrases and multiple speaking-turns in different languages (Auer, 1998). The notion of codeswitching is far from uncomplicated, even in healthy multilingual populations, and more so when it comes to persons with dementia or other conditions that affect language skills. This is because for many multilinguals, alternating between languages may be a common, or even default manner of interacting. The situation is even more complex when we consider multilinguals who experience cognitive decline. de Bot and Makoni (2005: 66) note that in many studies: ‘information on switching behaviours before the onset of cognitive decline are more often than not absent, as is information on patterns of CS [Codeswitching] in the communities the patients come from’. In addition, data on the individual’s current language habits, such as accounts given in interviews or self-reports obtained in questionnaires, may not reliably reflect what participants can actually do in interaction, but rather what they experience or wish that they could do. To distinguish a person’s ordinary and typical codeswitching practices from pathological ones is therefore a great challenge. Ideally, data in the form of recordings of interaction collected before dementia onset combined with self-reports would be required in order to be able to empirically establish to what extent codeswitching patterns after onset are related or not to cognitive decline. Investigators have dealt with these challenges in a variety of ways. For example, Hyltenstam and Stroud (1993) reported on a study on codeswitching in people with dementia whose mother tongue was Finnish, but who had been proficient and active speakers of Swedish L2 during large parts of their lives. Participants were interviewed by a Swedish monolingual and a Finnish interviewer, the latter, however, also being a speaker of Swedish. It turned out that four out of the six persons with dementia were not able to adapt adequately to the language of the monolingual Swedish interviewer. In effect, despite being addressed only in Swedish, they were unable to respond in Swedish, but rather responded in Finnish. Codeswitching patterns that occurred in the interactions with the Finnish interviewer were, however, more difficult to evaluate, since the use of either Finnish or Swedish could be considered appropriate since ‘… the Finnish interaction could quite reasonably be interpreted as a bilingual speech situation’ (Hyltenstam & Stroud, 1993: 232; see also Lindholm, this volume, for a similar language situation). Friedland and Miller (1999) were critical of the work by Hyltenstam and Stroud (1989) and Luderus (1995) for applying a priori terms such as language choice and language separation on interaction in a top-down manner. In contrast, they utilized conversation analysis (CA) in a study of four bilingual

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speakers (English-Afrikaans) with dementia. In particular, they stressed that the issue of whether a speaker had difficulties choosing a language or separating his or her languages could only be assessed by taking into account the local, sequential environment of each instance of codeswitching. How codeswitching was responded to, for example in terms of repair initiation, and whether the speaker with dementia would be able to conduct repair were highlighted. Of main importance was the fact that the bottom-up approach offered by use of CA facilitated the establishment of whether or not an instance of codeswitching made sense to participants themselves, i.e. in being treated as either appropriate or non-appropriate at a certain point of talk. The work by Friedland and Miller (1999) is of particular relevance to the present volume, since they offer an early CA-contribution to the study of multilingual interaction and dementia. Codeswitching practices as interactional resources are highlighted particularly in the chapters by Lindholm (Chapter 2) and Müller (Chapter 3), both of whom demonstrate how the choice of language, as well as talk about a specific language, are important features of people’s identity and a natural part of everyday interactional practices in multilingual older people’s care. In addition, it is shown how staff adapt to the language choice of residents or their assumed preferences (when possible), for example, relating to knowledge about the residents’ language habits prior to moving into residential care (Lindholm, this volume). A central theme of this book is, of course, how different languages are used in encounters that involve a multilingual person with dementia. Similarly to the approach adopted by Friedland and Miller (1999), the interactional consequences of language use are crucial and a main concern of all contributions.

Neurocognitive assessment practices in multilingual situations and the use of interpreters Receiving a diagnosis of dementia is a life-changing experience, both for the person who is diagnosed and for this person’s significant others. The diagnosis may cause both anxiety and fear, but it may also bring relief, as the uncertainty about symptoms and unaccountable changes in behaviour finally receive an explanation (Wackerbarth & Johnson, 2002). In most countries, a basic dementia evaluation consists of a standardized set of procedures comprising history taking, physical and psychiatric examinations (tests of cognitive functioning) and ancillary investigations, blood tests and brain scans. If a dementia evaluation is already a complex task in a setting in which participants share culture and language, it becomes increasingly challenging in settings of ethnocultural and linguistic diversity. In addition, medical encounters mediated by an interpreter further increase the complexity of the evaluation (see Plejert et al., 2015; Van De Mieroop et al., 2012).

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From a European perspective, Nielsen (e.g. 2011) reports that memory clinics are generally not prepared for the rapid increase in ethnoculturally and linguistically diverse patients of the early 21st century, continuing as this book is being published. One particular problem concerns the use and availability of formal tests of cognitive functioning, which are rarely constructed for, or adapted to, populations with limited literacy. Even in cases where literacy is not an issue, tests might not be translated or validated in the language of a specific patient. Further, there is a paucity of empirical information about the psychometric validity and reliability of tests when administered by an interpreter (Casas et al., 2012; Plejert et al., 2015). In addition, clinicians who do not share a language with their patients find it challenging to implement cognitive tests while at the same time maintaining the professional quality of the diagnostic process (Majlesi & Plejert, 2016; Plejert et al., 2015). Research demonstrates disparities between ethnic minority and majority populations in the quality, accuracy and reliability of dementia evaluations (Nielsen et al., 2011a). In a study in Denmark, Nielsen et al. (2011b) found an over- or underdiagnosis of dementia in ethnic minority groups compared with the distribution of dementia in the general Danish population. The authors point out that this incongruity may have to do with the quality of dementia evaluation, influenced by the linguistic and cultural differences of the patients and clinicians involved. As noted above, use of interpreters in the evaluation appear to influence test scores compared to non-mediated tests. Casas et al. (2012) demonstrate that the mean total scores of Spanishspeaking patients in neuropsychological tests were higher when interpreters where involved, especially when there was a higher demand for verbal expression in test instructions in which, to a greater extent, the interpreters’ engagement was required. What is common among these reports is that little is known about how these results come about (i.e. the quality of the procedure of testing), even though there is consensus that the test results are not quite reliable when the tests are administered via interpreters (see Casas et al., 2012). This is exactly where interaction analytical work such as that in this volume may assist and advance knowledge about which specific aspects of interaction are involved in the execution and outcome of tests. Despite the fact that the field of medical interpretation is (thankfully) growing, there is little interaction analytical work that targets the micro-details of interpreter-mediated interaction in relation to dementia evaluations. To our knowledge, there are only four such studies (Plejert et al., 2015; Majlesi & Plejert, 2016; Majlesi et al., this volume; Van De Mieroop et al., 2012). Some examples are as follows. Van De Mieroop et al. (2012) reported how an interpreter, during the administration of the MMSE (Mini Mental State Examination), made additions to the occupational therapist’s initial test questions. For example, when the occupational therapist asked what season it was, the interpreter turned the initial open question into a close-ended

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question with optional answers, providing the patient with the opportunity to choose between spring, summer, autumn and winter, despite the fact that this was not part of the original test question. The modified rendition by the interpreter thus made the task easier for the patient, potentially influencing how the patient’s answer was assessed. Similarly, Plejert et al. (2015) show how the utilization of a linguistically and culturally biased test makes administration and evaluation very challenging for all participants involved. To wit, the particular patient being evaluated (it is a case study) had very limited reading and writing skills and suffered from a hearing impairment. Plejert et al. (2015) stress that, when inadequate test material is used, it may be extremely difficult to assess the extent to which a patient’s difficulties are related to a cognitive deficit, or to a hearing impairment or to the educational background of the patient, which also affects her ability to understand the task at hand (to copy a three-dimensional cube, for example, or why she is to repeat a syntactically complex sentence). In this same study, the interpreter was also required to engage in vast amounts of clarification work in order to make the patient understand what to do. These sometimes lengthy repair sequences were never rendered to the occupational therapist, but revealed a great deal of information about the patient’s cognitive status, information that would have been facilitative for the occupational therapist in her overall assessment of the patient. In effect, the challenge of accurate and reliable diagnosis of multilingual populations is not simply a psychometric issue, nor even a question of ‘correct’ translations – given that limited literacy is also a real factor. Rather, attending to the details of clinician–patient interaction may help us understand the explicitly communicative sources of disparities between interpreted and non-interpreted assessments, which in turn may help us more appropriately and flexibly to adapt diagnostic practices that are nonetheless reliable and accurate.

Multilingual interaction in residential care In many countries, residential care facilities (also referred to as rest homes, nursing homes or older people’s care homes, to mention a few commonly used terms) provide a tractable option for the extended care of persons with dementia, particularly in cases where the individual’s symptoms have become too severe for a spouse or relative to handle on a daily basis. Adequate medical attention is also often needed alongside the use of specific aids in order to maintain basic needs, such as managing personal hygiene, eating and sleeping. It should be noted that, although residential care facilities are widespread, they are not equally common in all countries and, in many cultures, people with dementia are primarily cared for by their families. These differences, in turn, are related to a wide variety of complex factors that will not be accounted for here to any great extent. However, examples include differences in how

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dementia is conceptualized, for example as a disease, or if it is viewed as a natural part of ageing (see Dilworth-Andersen & Gibson, 1999, 2002), or differences related to family structures that make it possible for a family member (a woman in most cases) to stay at home to look after the person with dementia. In addition, for some, handing over the responsibility for a family member, for example a parent, to an institution, is simply not an option and may be associated with shame and stigma (Antelius, 2017). Social encounters in residential care are often multilingual. Not only is it the case that residents may speak different languages, but the staff may also be ethnoculturally diverse and may speak the operational language of the institution as their second language. Prior research on multilingual interaction in residential care is, as mentioned, very scarce, but this volume will demonstrate that there are promising seminal studies. Early as well as recent studies are concerned with the potential benefits for multilingual people with dementia of receiving care in their mother tongue (e.g. Ekman, 1993; Ekman et al., 1993, 1994; Runci et al., 2005, 2012). In addition, there is a very small but developing body of CA-informed work that puts emphasis on acknowledging participants’ use of nonverbal and prosodic resources in multilingual encounters involving people with dementia, or dementia symptoms (e.g. Small et al., 2015, this volume; Yazdanpanah & Plejert, this volume). In Australia, Clyne (1977, 2011) observed that people of a non-English speaking background were often ‘isolated and felt unwanted and misunderstood in monolingual English-speaking institutions’ (Clyne, 2011: 202). Large immigrant groups and particularly Dutch-Australians were involved in advocating for ethnoculturally profiled older people’s care. According to Clyne (2011: 203), this was partly due to a belief in the twin hypotheses of first language reversion and second language attrition, suggesting that immigrants, as they grew older, would use their L1 more than in middle age and also that vocabulary and grammatical rules in their L2 would be successively lost with age. In the earlier study, Clyne (1977) suggested that ‘There is clear evidence of increased wellbeing of Australians from non-English speaking backgrounds in ethnospecific aged care facilities due to ease of communication, opportunities to share their cultural experiences, and cultural differences (including food) in aged care practices’ (Clyne, 1977: 55). Similar observations were made concerning Finnish immigrants to Sweden by Ekman and her colleagues in the 1990s (Ekman, 1993; Ekman et al., 1993, 1994). When comparing communication between the Finnish immigrants and Swedish-speaking and Finnish-speaking caregivers, respectively, they observed that, in interaction with a Swedish-speaking caregiver, ‘The demented [sic] Finnish immigrants functioned on a level of manifest competence that seemed far below their level of latent competence’ (Ekman et al., 1994: 118). They concluded, ‘It seems reasonable that the presence of Finnish-speaking caregivers is an environmental change that would markedly enhance the demented [sic] Finnish immigrants’ performance and

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quality of life and also reduce the costs for their care’ (Ekman et al., 1994: 118). As with the research in Australia, these research findings led to the establishment of ethnoculturally profiled residential care for Finnish immigrants in Sweden, and also affected recommendations from the Swedish National Board for Health and Welfare, who recommended not only cultural adaptations in terms of food, possibilities to practise different religions, etc., but also linguistic matching between staff and residents to as great an extent as possible (Socialstyrelsen, 2010). Further studies of multilingual interaction in Swedish residential care have been conducted by Jansson and her collaborators (e.g. Jansson, 2012a, 2012b, 2014; Jansson & Wadensjö, this volume; Plejert et al., 2014). Jansson combines extensive ethnographic fieldwork with CA and has focused primarily on the perspective of multilingual staff and the various strategies that they employ to cope with the language barriers that arise in interaction with residents with whom they do not, or only partly, share a language. Some strategies observed by Jansson (2012a, 2012b, 2014) concerned how staff learned certain frequently occurring words of the language of the resident, recycled elements in the resident’s prior turn, and sang phrases in the native tongue of the resident. This use of playful language enhanced the caregivers’ establishment of social relations with residents, and also served as a resource to make residents more compliant with the everyday activities that had to be carried out and which they did not always like (e.g. taking showers). Plejert et al. (2014) investigated material collected by Jansson, and specifically looked at caregivers’ response practices in relation to a care recipient’s objection to being undressed and taken to the shower. Due to limitations in a shared language, the caregiver was unable to address the more precise nature of the resident’s repeated verbal accounts of discomfort. Instead, the caregiver resorted to a variety of moves, such as using soothing phrases in attempts to calm the resident, or simply responding minimally. In the latter case, from the resident’s perspective, the minimal responses were treated as dispreferred, and may potentially have contributed to increases in her repetitious verbal behaviour as well as to her escalated agitation. Plejert et al. (2014) point out that in many ways the caregiver displayed her affiliation with the resident’s distress as well as she could considering the circumstances. However, linguistic matching of caregiver and care recipient would have provided more tools for addressing the resident’s concerns, although it should be mentioned that spoken language is naturally not the sole key for managing anxiety in dementia, but it helps. Comparisons between interaction involving caregivers with fluency and non-fluency in the language of residents have also been the subject of Jansson’s (2014) research. Jansson’s findings are generally in agreement with those of Ekman (1993) and Ekman et al. (1993, 1994), in that the linguistic and cultural competence of caregiving staff is vital for creating a trustful relationship with multilingual residents and that a shared language is beneficial for their wellbeing.

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The studies reviewed so far have been primarily concerned with participants’ use of verbal resources. Investigations into nonverbal communication in multilingual residential care are few in number. One exception is the study by Small et al. (2015), who looked at the quality of care in ethnoculturally and linguistically diverse long-term care settings. The researchers stress how particular embodied conduct, such as pointing, eye-gaze, touch, bodycontact, helping a person to get to their feet and walk in a certain direction, or placing a spoon in a person’s hand, positively affected social relations and facilitated residents’ independence.

This Volume: Extending the Interactional Paradigm in Dementia Research Given the unique challenges facing multilingual persons with dementia, as well as their families, caregivers and clinicians, the contributors to this volume bring to bear methodological and theoretical perspectives that view interaction as the fundamental site of social action, and train analytic attention on participants’ linguistic and embodied practices and actions that unfold on a moment-by-moment basis during the course of a social encounter. Most of the contributions to this book conform to CA, often in combination with ethnographic analyses and data, or adhere to closely related perspectives that view discourse as the main medium of social action, such as discursive constructionism. These methodologies and the focus of individual chapters are outlined below.

Conversation analysis, discursive constructionism and ethnography CA originates in ethnomethodology and sociology (see Heritage, 1984; Schegloff, 2007; Sidnell & Stivers, 2013) and has been a continuously developing methodology for the study of human social interaction. Beginning in the late 1960s, scholars in CA have developed ever more precise methods for the analysis of talk-in-interaction. Although CA originally focused on mundane social interaction, it has been successfully applied for analysis of interaction involving people with communicative disabilities, in particular: people with aphasia (see Goodwin, 1995, 2003) and efforts at intervention (see Wilkinson, 2014, for a review); children with language impairment (e.g. Gardner, 2006; Gardner & Forrester, 2010); people with intellectual disabilities (e.g. Antaki & Crompton, 2015; Finlay & Antaki, 2012); settings where communication aids are used (e.g. Bloch & Wilkinson, 2013; Clarke et al., 2013; Norén et al., 2013); and people with dementia (e.g. Dooley et al., 2015; Kitzinger & Jones, 2007), including work on diagnosis (Jones et al., 2016) and diagnosis disclosure (Peel, 2015). The methodology is becoming increasingly focused on

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multimodal aspects of interaction, taking into account embodied resources as much as verbal ones, particularly within the branch commonly referred to as multimodal interaction analysis (see Mondada, 2006, 2007, 2014), which particularly stresses the importance of basing analyses on video-recorded materials (see Laurier & Philo, 2006). A critical aspect of CA is that it methodologically privileges the perspectives of the participants interacting in an event. Presupposed categories such as correct and deviant may thus be viewed critically in relation to participants’ own perceptions and aims of interaction, such as something being mutually understood and mutually confirmed – factors more relevant for the purpose of everyday interaction than mere errors and faults from a normative language perspective. This attitude is of particular relevance for the study of dementia, which previously, from a biomedical perspective, has been heavily engaged in documenting language problems associated with the dementias, rather than identifying remaining capacities, and/or strategies that may be improved in order to facilitate interaction, despite the degenerative nature of the disease (see Hydén et al., 2014; Schrauf & Müller, 2014, for perspectives along these lines). It is with this latter line of reasoning that the chapters of this volume align. Discursive constructionism makes use of the interaction-focused methods of CA to examine how people work up descriptions, make claims, give accounts, solve problems, evaluate situations, plan courses of action and effectively conduct social life in a collaborative fashion in social interaction via talk and text (Potter & Hepburn, 2008). Remaining largely agnostic on ontological questions, discursive constructionism takes as a basis the notion that ‘whatever realities come to us through other modes of experience, they become social realities only in linguistic representations and semiotic adjuncts of language’ (Green, 1993 [2009]: 14). Key tenets of discursive constructionism include the following (Hepburn & Wiggins, 2007; Potter & Hepburn, 2008). First, as in CA, discursive constructionism assumes that, in interactive talk, people are ‘doing’ their social projects, their identities and their worlds. Tracing back to Austin’s How to Do Things with Words (Austin, 1962) and Wittgenstein’s Philosophical Investigations (Wittgenstein, 1953), discursive constructionists assert that language-in-use is a form of social action and social behaviour (and not a report about internal mental states). Secondly, talk-in-interaction is always intricately embedded in particular contexts, from which interlocutors flexibly and creatively derive meanings and mutual understandings – via the whole panoply of phonological, morphosyntactic, lexical and pragmatic signs – and into which interlocutors insert and negotiate ongoing meanings and understandings (Duranti & Goodwin, 1992; Silverstein, 2003). Thus, both participants and analysts attend to the critical role of context (or situation, see Hepburn & Wiggins, 2007: 7) at micro-levels of moment-by-moment talk as these are embedded in more meso-levels of the social institutions in which talk takes place and within which interlocutors pursue their goals and purposes. Thirdly, in

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discursive interaction people collaboratively construct, negotiate and modify their social worlds (this is the constructionism). Such constructions may be ephemeral-and-fleeting in moments of actual encounters but also durableand-lasting in established social practices – and sometimes adamantineand-seemingly-natural as in traditions of long durée. Questions for discursive constructionists include: what are the devices and practices that people use in particular situations to achieve their ends – to construct their worlds, and how are these worlds collaboratively brought into being in interactive talk? Previous articulations of the discursivist paradigm in dementia studies have examined the contrast of a discourse-centred versus cognitivist-centred view of the condition (Schrauf & Müller, 2014). In this volume, authors attend to instances of talk between persons with dementia, their caregivers, family members and clinicians – not as evidence about, or reports of, dementia, but as enactments of the interactive social world in which dementia is realized. Importantly, given the development of fine-grained tools of linguistic and conversation analysis in both this volume and previous work, the project of describing the social construction of dementia is acquiring a solid empirical foundation (e.g. Davis, 2005; Guendouzi & Müller, 2006; Jansson, 2014; Lindholm, 2008, 2015; Plejert et al., 2014, 2015; Schrauf & Müller, 2014). Both perspectives outlined above are also often combined with ethnographic analyses of data sources, such as observations, interview answers and field notes. Similar to CA and discursive constructionism, ethnographic analysis aims at contextualizing details and interpreting human behaviour from the actors’ point of view (Kovarsky & Crago, 1990–1991) in order to describe experiences as thickly as possible. ‘Thick description’ stems from Geertz’s (1973) idea that ethnographic analysis needs not only to be rich in detail and context, but also in meaning and interpretation; interpretations that include finding a stratified hierarchy of meaningful (and often recurrent) structures across various datasets. Within ethnography, it is also important to show how data have been produced within, for example, interviews. Interviews are interactional collaborative accomplishments, and respondents are not so much sources of knowledge as they are constructors of knowledge in collaboration with interviewers (Antelius, 2009; Potter & Hepburn, 2005). Interview answers, thus, should be understood as introduced by the interviewees themselves, but in response to the fact that an interviewer has asked certain things. It should be mentioned that combining methodologies, particularly CA, ethnography and anthropology, has been much debated, particularly during the 1990s (see Arminen, 2000; Moerman, 1988; Pomerantz, 1998; Schegloff, 1997, 1998; Wetherell, 1998), the main issue dealing with the role of context, and what role analyses of ‘talk-extrinsic’ data (e.g. interview answers, informants’ self-reports, observations, etc.) should play in relation to participants’ orientations and actions as identified by means of CA (see Pomerantz, 2005, 2012). Today, however, it is fairly generally accepted that combinations of

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data sources and analytical lenses are more beneficial than destructive, although only as long as researchers and multidisciplinary teams are careful as to what questions are asked and how various methodologies are used to answer these questions (Ford, 2012). Combining methodologies is perhaps also somewhat more common in the branch denoted ‘Applied CA’ (see Antaki, 2011, for an introduction), which, when it comes to dementia, is often concerned with highlighting specific interactional practices with an aim of bringing about ‘some sort of change’ (Antaki, 2011: 1). In relation to the present volume, this might concern raising people’s awareness of how noticing and adapting to remaining linguistic competencies may facilitate interaction with a person with dementia, despite certain other difficulties. It might also concern how staff in residential care may be trained in using specific interactional strategies in order to communicate in more efficient and socially rewarding ways with residents, or that code-switching patterns in the talk of multilingual residents with dementia may be quite relevant in relation to a particular event or activity, and of importance in relation to their maintenance of self and identity, rather than simply related to problems with attrition or reversion, etc. As will be demonstrated, the focus of all the chapters of this volume on the detailed means by which multilingual interaction in different settings involving people with dementia is achieved has practical bearings, for example for staff and residents in residential care, practitioners, patients and interpreters in dementia evaluations, for intervention and for training packages for clinicians, as well as staff in a range of settings. These applications are taken up again in the final chapter of this book. In order to provide readers with a taste of what is to come, each chapter is now briefly presented.

The chapters All contributions include transcriptions of interactive data, each focusing on particular linguistic and discursive devices. Since authors focus on different features at different levels of detail, we have chosen not to include one common set of transcription conventions (though all derive from the tradition of CA practice captured iconically in the Jefferson system; see Jefferson, 2004, for a summary of symbols). Chapter 2, by Camilla Lindholm, is entitled ‘Ageing as a Swedishspeaking Finn: Positioning and Language Choice at a Nursing Home’. This study adroitly coordinates findings from a careful CA of multilingual resident–resident and resident–staff interactions and a detailed participantobservation ethnography of the settings in which these conversations took place. As the title indicates, the focal residents are Swedish-speaking Finns in a Finnish long-term care facility in which both staff and programming are designedly in Swedish. As might be expected, conversations in the facility involve both languages and codeswitching is common; Lindholm focuses on

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how resident choice of language at the micro-level of short interactions reflects larger national identities, mechanisms of local social inclusion and exclusion, and momentary alignments and dis-alignments. Indeed, a key contribution of the chapter is to show how social positioning across cultural and national boundaries is linguistically emergent in the flow of talk around quotidian topics and the imponderabilia of daily life in the facility. Another curious finding is that staff–resident interactions differed as a function of resident length-of-stay. In brief, while bilingual staff regularly accommodated the language choices of long-term residents, with short-term residents there were marked situation-specific exceptions (favouring use of Finnish) – perhaps because short-term residents brought to the facility a more recent exposure to majority Finnish outside the facility. Lindholm concludes that the patterns of language use were complex, and she insightfully draws our attention to the ways in which, on the one hand, residents manage language choice in service of national and cultural identity and, on the other hand, how the practicalities of length-of-stay might play a role as well. In Chapter 3, ‘Fear nó Bean, a Man or a Woman? Bilingual Encounters in Residential Eldercare in Ireland’, Nicole Müller focuses on patterns of language use in a bilingual (Irish-English) care home setting in Ireland. Using an ethnographic approach involving interviews and participant observations, Müller examines the phenomena of situated language choice and language switching, as well as the ‘language expert’ identity of residents. In a case study of one resident whose ability to switch language indicates contextualized cognitive skills, Müller demonstrates that there is a need to evaluate the cognitive and communicative abilities of people with dementia in their context of use. Müller’s study underscores the importance of bilingual environments for encouraging long-term bilinguals with dementia to use their linguistic and communicative repertoires to the fullest extent. Chapter 4, by Ali Reza Majlesi, Eleonor Antelius and Charlotta Plejert, is entitled ‘Epistemic Negotiations in Interpreter-mediated Dementia Evaluations: The Cooperative Role of Patients’ Relatives’ and examines a multilingual, interpreter-mediated dementia evaluation in which the patient’s granddaughter also participates in the interview. In their CA of key portions of the interchange, the authors examine the issue of epistemic authority – that is, who has the right to speak authoritatively about the patient’s experience, or to interpret correctly either the questions of the clinician-to-the patient or the responses of the patient (or, critically, for the patient) to the clinician. Against a background of previous research that points to the problems and challenges of such an arrangement, Majlesi, Antelius and Plejert explore how the granddaughter’s interventions function to shore up the intersubjectivity between the interlocutors in the encounter. Calling attention in separate analyses of how the granddaughter negotiates with each interlocutor (with the interpreter, with the patient and with the clinician), the authors describe how the granddaughter – an unofficial

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presence and possible threat to psychometric validity – succeeds in fostering ‘a dynamic ecology for exchanging information, by means of constant monitoring and coordination with other participants’. In sum, the chapter extends the CA focus to the actual details of a psychometrically non-canonical neurocognitive assessment involving not only an interpreter who must channel the patient’s responses but also a relative who may unconsciously subvert the proceedings. Interestingly, rather than confirming the strictures of canonical assessment procedures, the sustained analysis of these empirical data suggest that the real situation is rather more complex. Given the ubiquity of multilingualism, the dearth of interpreters, the lack of validly translated instruments and the absence of appropriate standardization samples for scoring, this study brings welcome light to an otherwise dim reality. In Chapter 5, ‘Creating Opportunities for Residents to Engage in Social Exchange: Brokering in Multilingual Residential Care Settings’, Gunilla Jansson and Cecilia Wadensjö examine brokering, that is, actions that members of staff in residential care, none of whom is assigned the function of interpreter, spontaneously take on themselves in order to facilitate communication between other participants in the setting who do not share a common language. Utilizing CA for the detailed scrutiny of video-recordings of multilingual, multi-party interactions from social gatherings in the dayroom in residential care, the authors demonstrate how caregivers by means of brokering facilitate the participation of residents’ as well as other members of staff, who otherwise would be more or less excluded from an ongoing activity. The results of the chapter put emphasis on the fact that it is essential that caregiving staff pay attention to their own communicative behaviour and how this potentially influences the inclusion or exclusion of care recipients with communication difficulties in shared activities. In addition, caregiving staff should be encouraged to regard their multilingual skills as a valuable resource that could be developed and promoted by institutions, as well as in education. In Chapter 6, ‘Verbal and Nonverbal Turn-taking Actions of Care Staff and Residents in Linguistically Diverse Long-term Care Settings’, Jeff Small, Sing Mei Chan, Elisabeth Drance, Judith Globerman, Lorraine Ho, Wendy Hulko, Deborah O’Connor, JoAnn Perry and Louise Stern use the microanalytical approach of CA combined with quantitative coding to investigate the verbal and nonverbal turn-taking actions of professional caregivers and residents in linguistically diverse long-term care. The study demonstrates that caregivers initiated most interactions, using both verbal and nonverbal initiatives, with residents most often responding nonverbally. In confirming the task-oriented nature of interactions in residential care, the study argues for a sensitivity to interactional dynamics and interdependencies of verbal and nonverbal behaviours during diverse staff–resident communication. This study is an important contribution to the field of social interaction and dementia, not only from a multilingual point of view, but of relevance for

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dementia care in general, since spoken means are affected as the dementia disease progresses, and embodied actions become of greater and greater importance. In Chapter 7, ‘Accommodation Practices in Multilingual Encounters in Swedish Residential Care’, Maziar Yazdanpanah and Charlotta Plejert draw on CA, with a particular focus on video-analysis, in studying how caregivers and residents recycle specific behaviours of the other person in order to establish common ground when there are limitations in the amount of shared spoken language available to participants. The authors demonstrate how accommodation practices, for example the recycling of changes in body positioning, provide grounds for participants to understand that there is a problem in need of further negotiation. Further, drawing on a mutually established turn-format recycled with variation over the course of talk, participants manage to build rapport concerning a complaint posed by the resident. Prosodic measurements also display how aligning turns by the caregiver are matched in pitch and intensity with the resident’s prior turns. The chapter highlights the importance of paying attention to all interactional resources available to interlocutors in settings where there are limitations in a shared verbal language, or where language skills are limited, for example due to dementia. In Chapter 8, ‘Training in Clinical Assessment: Proxying, Translating and Voice-over as Discursive Devices’, Robert W. Schrauf and Michael Amory conduct an in-depth discursive analysis of a multilingual, online training module for a clinical instrument, the Relevant Outcomes Scale for Alzheimer’s (ROSA). In particular, the authors examine three distinct discursive practices unique to the training and assessment: (1) proxying – having a collateral speak for the patient; (2) translating – producing multiple language versions of the training; and (3) voice-over/dubbing – using voice-over to re-present patient– collateral role-plays within the training. For all these practices, Schrauf and Amory demonstrate how they achieve their effects, contribute to the pedagogical aims of the ROSA training module and ultimately reproduce and extend the clinical discourse of which they are a part. The chapter highlights how attending to the ways in which different but overlapping discourse communities construct Alzheimer’s disease may contribute to more careful and efficient coordination of various efforts at care and cure. In Chapter 9, entitled ‘Challenges and Experiences in Training Multilingual, International Direct Care Workers in Dementia Care in the United States’, Boyd Davis and Margaret Maclagan review the widespread situation of nursing assistants and home care workers who do not share first language fluency with either the persons-with-dementia for whom they provide care or the administrative staff of the units who employ them. Not surprisingly, this communicative mismatch often results in difficult interactions that imperil quality of care, and Davis and Maclagan have designed and implemented several interventions to heighten awareness of ‘communication as

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culturally competent care’. The chapter demonstrates how insights and research findings from research in sociolinguistics, pragmatics and social interaction can inform specific training activities for multilingual caregivers to optimize their communication skills. Examples of programme activities include: teaching both caregivers and staff to attend to politeness formulas and to avoid ‘elderspeak’; practising effective conversation starters; learning to strategically repeat words and phrases from the interlocutor’s previous turn; and learning to allow longer pauses when speaking with a person with dementia. Of particular importance for the design of such training programmes, the authors describe the delivery formats for the training (e.g. workshops, short courses), and they reflect insightfully on participant uptake of the lessons. Chapter 10 is the final chapter of the book and it is named ‘Multilingual Interaction and Dementia: Future Directions for Research and Practice’. As the name suggests, we highlight and summarize what the chapters have in common, what they contribute to a largely uninvestigated field, what questions remain unanswered and, last but not least, how the study of microlevel, interactional practices in multilingual encounters is practically relevant for those directly concerned – that is, people with dementia, their significant others, caregiving staff and other professionals.

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Casas, R., Guzmán-Vélez, E., Cardona-Rodriguez, J., Rodriguez, N., Quiñones, G., Izaguirre, B. and Tranel, D. (2012) Interpreter testing of monolingual Spanish speakers. Clinical Neuropsychologist 26 (1), 88–101. Clarke, M.T., Bloch, S.J. and Wilkinson, R. (2013) Speaker transfer in children’s peer conversation: Completing communication aid mediated contributions. Augmentative and Alternative Communication 29 (1), 37–53. Clyne, M. (1977) Bilingualism of the elderly. Talanya 4, 45–56. Clyne, M. (2011) Bilingualism, code-switching and aging. A myth of attrition and a tale of collaboration. In M.S. Schmid and W. Lowie (eds) Modeling Bilingualism. From Structure to Chaos (pp. 201–220). Amsterdam/Philadelphia, PA: John Benjamins. Davis, B. (ed.) (2005) Alzheimer Talk, Text and Context. New York: Palgrave Macmillan. Davis, B. and Guendouzi, J. (eds) (2013) Pragmatics in Dementia Discourse. Newcastle: Cambridge Scholars Publishing. Davis, B., Maclagan, M., Karakostas, T., Liang, S. and Shenk, D. (2011) Watching what you say: Walking and talking in dementia. Topics in Geriatric Rehabilitation 27 (4), 268–277. de Bot, K. and Makoni, S. (2005) Language and Aging in Multilingual Contexts. Clevedon: Multilingual Matters. de Bot, K. and Weltens, B. (1995) Foreign language attrition. Annual Review of Applied Linguistics 15, 151–164. Dilworth-Anderson, P. and Gibson, B. (1999) Ethnic minority perspectives on dementia family care giving and interventions. Generations 23 (3), 40–46. Dilworth-Anderson, P. and Gibson, B. (2002) The cultural influence of values, norms, meanings, and perceptions in understanding dementia in ethnic minorities. Alzheimer Disease and Associated Disorders 16, 56–63. Dooley, J., Bailey, C. and McCabe, R. (2015) Communication in healthcare interactions in dementia: A systematic review of observational studies. International Psychogeriatrics 27 (8), 1277–1300. Duranti, A. and Goodwin, C. (eds) (1992) Rethinking Context: Language as an Interactive Phenomenon. New York: Cambridge University Press. Ekman, S-L. (1993) Monolingual and bilingual communication between patients with dementia diseases and their caregivers. Umeå University Medical Dissertations, New Series 370, Umeå. Ekman, S.-L., Robins Wahlin, T.B., Norberg, A. and Winblad, B. (1993) Relationship between bilingual demented immigrants and bilingual/monolingual caregivers. International Journal of Aging & Human Development 37 (1), 37–54. Ekman, S.-L., Robins Wahlin, T.B., Viitanen, M., Norberg, A. and Winblad, B. (1994) Clinical practice and service development. Preconditions for communication in the care of bilingual demented persons. International Psychogeriatrics 6 (1), 105–120. Finlay, W.M.L. and Antaki, C. (2012) How staff pursue questions to adults with intellectual disabilities. Journal of Intellectual Disability Research 56 (4), 361–370. Ford, C.E. (2012) Clarity in applied and interdisciplinary conversation analysis. Discourse Studies 14 (4), 507–513. Friedland, D. and Miller, N. (1999) Language mixing in bilingual speakers with Alzheimer’s dementia: A conversation analysis approach. Aphasiology 13 (4–5), 427–444. Gardner, H. (2006) Training others in the art of therapy for speech sound disorders: An interactional approach. Child Language Teaching and Therapy 22 (1), 27–46. Gardner, H. and Forrester, M. (2010) Analysing Interactions in Childhood. Insights from Conversation Analysis. Chichester: Wiley-Blackwell. Geertz, C. (1973) The Interpretation of Culture. New York: Basic Books. Goodwin, C. (1995) Co-constructing meaning in conversations with an aphasic man. Research on Language and Social Interaction 28 (3), 233–260. Goodwin, C. (2003) Conversation and Brain Damage. Oxford: Oxford University Press.

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Green, B.S. (1993 [2009]) Gerontology and the Construction of Old Age. New Brunswick, NJ: Transaction Publishers. Grosjean, F. (1994) Individual bilingualism. In R.E. Asher (ed.) The Encyclopedia of Language and Linguistics (pp. 1656–1660). Oxford: Pergamon Press. Guendouzi, J. and Müller, N (2006) Approaches to Discourse in Dementia. Mahwah, NJ: Lawrence Erlbaum. Hamilton, H. (1994) Conversations with an Alzheimer’s Patient: An Interactional Sociolinguistic Study. Cambridge: Cambridge University Press. Hepburn, A. and Wiggins, S. (2007) Discursive research: Themes and debates. In A. Hepburn and S. Wiggins (eds) Discursive Research in Practice: New Approaches to Psychology and Interaction (pp. 1–28). Cambridge: Cambridge University Press. Heritage, J. (1984) Garfinkel and Ethnomethodology. Cambridge: Polity Press. Hydén, L.C., Lindemann, H. and Brockmeier, J. (2014) Beyond Loss: Dementia, Personhood, Identity. New York: Oxford University Press. Hyltenstam, K. (1995) The code switching behaviour of adults with language disorders with special reference to aphasia and dementia. In L. Milroy and P. Muysken (eds) One Speaker, Two Languages: Cross-Disciplinary Perspectives on Code Switching (pp. 302– 343). Cambridge: Cambridge University Press. Hyltenstam, K. and Stroud, C. (1989) Bilingualism in Alzheimer’s dementia: Two case studies. In K. Hyltenstam and K.L. Obler (eds) Bilingualism Across the Lifespan. Aspects of Acquisition, Maturity and Loss (pp. 202–226). Cambridge: Cambridge University Press. Hyltenstam, K. and Stroud, C. (1993) Second language regression in Alzheimer’s dementia. In K. Hyltenstam and A. Viberg (eds) Progression and Regression in Language: Sociocultural, Neuropsychological and Linguistic Perspectives (pp. 222–242). Cambridge: Cambridge University Press. Jansson, G. (2012a) Äldreboendet som flerspråkig arbetsplats Policy och praktik. [The nursing home as a multilingual workplace. Policy and practice.] In B. Bihl, J. Eriksson, P. Andersson and L. Lötmarker (eds) Svenskans beskrivning 32, 102–113. Jansson, G. (2012b) Att stötta identitet – en utmaning i den mångkulturella demensvården. [Supporting identity – a challenge in culturally diverse environments in dementia care.] In B. Nørgaard and M. Bach Andreasen (eds) Sundhedskommunikation. Kommunikation på sundhedsområdet (pp. 77–92). Aalborg: Forskning og udvikling. Jansson, G. (2014) Bridging language barriers in multilingual care encounters. Multilingua 33 (1–2), 201–232. Jansson, G. and Plejert, C. (2014) Taking a shower: Managing a potentially imposing activity in dementia care. Journal of Interactional Research in Communication Disorders 5 (1), 27–62. Jefferson, G. (2004) Glossary of transcript symbols with an introduction. In G.H. Lerner (ed.) Conversation Analysis: Studies from the First Generation (pp. 13–31). Amsterdam/ Philadelphia, PA: John Benjamins. Jones, D., Drew, P., Elsey, C., Blackburn, D., Wakefield, S., Harkness, K. and Reuber, M. (2016) Conversational assessment in memory clinic encounters: Interactional profiling for differentiating dementia from functional memory disorders. Aging & Mental Health 20 (5), 500–509. Kitzinger, C. and Jones, D. (2007) ‘When May calls home’: The opening moments of family telephone conversations with an Alzheimer’s patient. Feminism and Psychology 17 (2), 184–202. Kovarsky, D. and Crago, M. (1990–1991) Toward the ethnography of communication disorders. National Student Speech Language Hearing Association Journal 18, 44–55. Laurier, E. and Philo, C. (2006) Natural problems of naturalistic video data. In H. Knoblauch, B. Schnettler, J. Raab and H.-G. Soeffner (eds) Video Analysis Methodology and Methods. Qualitative Audiovisual Data Analysis in Sociology (pp. 181–190). Frankfurt am Main/New York: Peter Lang.

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Leibing, A. and Cohen, L. (eds) (2006) Thinking about Dementia. Culture, Loss, and the Anthropology of Senility. New Brunswick, NJ: Rutgers University Press. Lindholm, C. (2008) Laughter, communication problems and dementia. Communication and Medicine 5 (1), 3–14. Lindholm, C. (2015) Parallel realities: The interactional management of confabulation in dementia care encounters. Research on Language and Social Interaction 48 (2), 176–199. Luderus, L. (1995) Language Choice and Language Separation in Bilingual Alzheimer Patients. Amsterdam: IFOTT. Luk, G., Bialystok, E., Craik, F.I.M. and Grady, C. (2011) Lifelong bilingualism maintains white matter integrity in older adults. Journal of Neuroscience 31, 16808–16813. Majlesi, A.R. and Ekström, A. (2016) Baking together – the coordination of actions in activities involving people with dementia. Journal of Aging Studies 38, 37–46. Majlesi, A.R. and Plejert, C. (2016) Embodiment in tests of cognitive functioning: A study of an interpreter-mediated dementia evaluation. Dementia; doi:101177/147130121 6635341. Moerman, M. (1988) Talking Culture: Ethnography and Conversation Analysis. Philadelphia, PA: University of Pennsylvania Press. Mondada, L. (2006) Video recordings as the reflective preservation and configuration of phenomenal features for analysis. In H. Knoblauch, J. Raab, H.G. Soeffner, and B. Schnettler (eds) Video Analysis (pp. 51–68) Bern: Lang. Mondada, L. (2007) Multimodal resources in turn-taking: Point and the emergence of possible next speaker. Discourse Studies 9 (2), 194–225. Mondada, L. (2014) Instructions in the operating room: How the surgeon directs their assistant’s hands. Discourse Studies 16 (2), 131–161. Nielsen, T.R. (2011) Evaluation of dementia in patients from ethnic minorities. A European perspective. Doctoral dissertation, University of Copenhagen. Nielsen, T.R., Andersen, B.B., Kastrup, M., Phung, T.K.T. and Waldemar, G. (2011a) Quality of dementia diagnostic evaluation for ethnic minority patients: A nationwide study. Dementia and Geriatrics Cognitive Disorders 31 (5), 386–396. Nielsen, T.R., Vogel, A., Riepe, M.W., et al. (2011b) Assessment of dementia in ethnic minority patients in Europe: A European Alzheimer’s disease consortium survey. International Psychogeriatrics 23 (1), 86–95. Norén, N., Samuelsson, C. and Plejert, C. (eds) (2013) Aided Communication in Everyday Interaction. Guildford: J & R Press. Paradis, M. (2007) L1 attrition features predicted by a neurolinguistic theory of bilingualism. In B. Köpke, M. Schmid, M. Keijzer and S. Dostert (eds) Language Attrition: Theoretical Perspectives. Studies in Bilingualism 33 (pp. 121– 133). Amsterdam: John Benjamins. Peel, E. (2015) Diagnostic communication in the memory clinic: A conversation analytic perspective. Aging and Mental Health 19 (12), 1123–1130. Plejert, C., Jansson, G. and Yazdanpanah, M. (2014) Response practices in multilingual interaction with an older Persian woman in a Swedish residential home. Journal of Cross-Cultural Gerontology 29 (1), 1–23. Plejert, C., Antelius, E., Yazdanpanah, M. and Nielsen, T.R. (2015) There’s a letter called ef. On challenges and repair in interpreter-mediated tests of cognitive functioning in dementia evaluations: A case study. Journal of Cross-Cultural Gerontology 30 (2), 163–187. Pomerantz, A. (1998) Multiple interpretations of context: How are they useful? Research on Language and Social Interaction 31, 123–132. Pomerantz, A. (2005) Using participants’ video stimulated comments to complement analyses of interactional practices. In H. te Molder and J. Potter (eds) Talk and Cognition: Discourse, Mind and Social Interaction (pp. 93–113). Cambridge: Cambridge University Press.

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Pomerantz, A. (2012) Do participants’ reports enhance conversation analytic claims? Explanations of one sort or another. Discourse Studies 14 (4), 499–505. Potter, J. and Hepburn, A. (2005) Qualitative interviews in psychology: Problems and possibilities. Qualitative Research in Psychology 2 (4), 281–307. Potter, J. and Hepburn, A. (2008) Discursive constructionism. In J.A. Holstein and J.F. Gubrium (eds) Handbook of Constructionism (pp. 275–293). New York: Guilford. Ramanathan, V. (1997) Alzheimer Discourse: Some Sociolinguistic Dimensions. Mahwah, NJ: Lawrence Erlbaum. Runci, S., O’Connor, D. and Redman, J.R. (2005) Language needs and service provision for older persons from culturally and linguistically diverse backgrounds in south-east Melbourne residential care facilities. Australian Journal on Ageing 24 (3), 157–161. Runci, S., Eppingstall, B. and O’Connor, D. (2012) A comparison of verbal communication and psychiatric medication use by Greek and Italian residents with dementia in Australian ethno-specific and mainstream aged care facilities. International Psychogeriatrics 24 (5), 733–741. Sabat, S. (2001) The Experience of Alzheimer’s Disease: Life Through a Tangled Veil. Oxford: Blackwell. Schegloff, E.A. (1997) Whose text? Whose context? Discourse & Society 8, 165–187. Schegloff, E.A. (1998) Reply to Wetherell. Discourse & Society 9 (3), 413–415. Schegloff, E.A. (2007) Sequence Organization in Interaction. A Primer in Conversation Analysis. Cambridge: Cambridge University Press. Schmid, M.S. (2009) L1 attrition across the lifespan. In K. de Bot and R.W. Schrauf (eds) Language Development Across the Lifespan (pp. 171–188). London: Routledge. Schmid, M.S. and Lowie, W. (2011) Modeling Bilingualism. From Structure to Chaos. In Honour of Kees De Bot. Amsterdam/Philadelphia, PA: John Benjamins. Schrauf, R.W. and Müller, N. (2014) Dialogue and Dementia. Cognitive and Communicative Resources for Engagement. New York: Psychology Press. Sidnell, J. and Stivers, T. (2013) The Handbook of Conversation Analysis. Chichester: Wiley-Blackwell. Silverstein, M. (2003) Indexical order and the dialectics of sociolinguistic life. Language & Communication 23, 193–229. Small, J., Chan, S.M., Drance, E., et al. (2015) Verbal and nonverbal indicators of quality of communication between care staff and residents in ethnoculturally and linguistically diverse long-term care settings. Journal of Cross Cultural Gerontology 30, 285–304. Socialstyrelsen (Swedish National Board of Health and Welfare) (2010) Nationella riktlinjer för vård och omsorg vid demenssjukdom 2010. Stöd för styrning och ledning [National Guidelines for Health-care in Dementia 2010. Support for Governance and Management]. No. 2010-5-1. Stockholm: Socialstyrelsen. Van De Mieroop, D., Bevilacqua, G. and Van Hove, L. (2012) Negotiating discursive norms. Community interpreting in a Belgian rest home. Interpreting 14 (1), 23–54. Wackerbarth, S.B. and Johnson, M.M.S. (2002) The carrot and the stick: Benefits and barriers in getting a diagnosis. Alzheimer Disease and Associated Disorders 16 (4), 213–220. Wetherell. M. (1998) Positioning and interpretative repertoires: Conversation analysis and post-structuralism in dialogue. Discourse & Society 9 (3), 387– 412. Wilkinson, R. (2014) Intervening with conversation analysis in speech and language therapy: Improving aphasic conversation. Research on Language and Social Interaction 47 (3), 219 –238. Wittgenstein, L. (1953) Philosophical Investigations. Oxford: Blackwell. Yeo, G. and Gallagher-Thompson, D. (2006) Ethnicity and the Dementias (2nd edn). New York: Routledge.

2

Ageing as a Swedish-speaking Finn: Positioning and Language Choice at a Nursing Home Camilla Lindholm

Introduction This study investigates a minority-language nursing home for elderly people with dementia in the Helsinki region of Finland. The nursing home is located in a bilingual municipality and provides minority-language healthcare services. As such, the home constitutes a Swedish-speaking environment surrounded by a community in which Finnish is the majority language. The nursing home is analyzed as a community whose practices of languageuse mirror those of the larger society (cf. Müller, 2009), with residents and caregivers relying on their knowledge of both the majority language (Finnish) and the minority language (Swedish) in order to interact. Special focus is placed on the phenomena of positioning and language choice. The notion of positioning refers to how human role relationships are expressed through language – ‘how people use words (and discourses of all types) to locate themselves and others’ (Moghaddam & Harré, 2010: 2). One central aspect of positioning theory is that positions are not fixed but change in order to adjust to different situations (Van Langenhove & Harré, 1999). Positioning can be both reflexive, referring to the ways in which individuals position themselves, and interactive, referring to how one individual is positioned by others (Sabat, 2008: 81). Finally, how people reflexively position themselves or actively position others is usually set within a larger personal and sometimes cultural storyline that can be used to explain the behaviour of oneself and others in the social world (Sabat, 2001: 19). This chapter discusses both reflexive and interactional positioning by nursing home residents with regard to language use in Finland and the Swedish-speaking minority. 23

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My perspective on positioning is conversation analytic (CA), focusing on how positioning is manifest in interaction. A vast amount of literature on multilingualism has focused on the study of language choice from a grammatical, interactional or sociolinguistic perspective (Auer, 1984: 1). Here I draw on the interactional perspective, defined by Auer (1984: 6) as studying ‘the meaning/function of individual instances of language alternation in conversation’. Auer’s (1984) pioneering work has been followed by a range of studies (e.g. Gafaranga, 2001, 2005; Nevile & Wagner, 2011; Wei, 2005) that have taken the sequential environment for language choice as their point of departure. Thus, language choice has been investigated as practical social action manifested in how participants manage language choice in situ (Nevile & Wagner, 2011: 211). It is important to stress that, in this chapter, the notion of language choice does not necessarily refer to a conscious choice by participants, but simply to the fact that participants use various languages in their interactions. In the following, I begin by describing the linguistic situation of the Swedish-speaking minority in Finland. Then I introduce my research setting and methods, followed by the results section in three parts. First, the phenomenon of positioning is presented, as exemplified by long-term residents. Secondly, language choice by short-term residents is analyzed. Lastly, the language choice patterns of professional caregivers are discussed. The discussion section gives a summary and conclusion of the results and offers practical implications.

Swedish in Finland Finland has had a sizeable Swedish-speaking population since at least the 13th century. What today is Finland was a part of Sweden until 1809, when Finland was ceded to Russia. Finland declared independence in 1917. Much of the social infrastructure was developed under Swedish rule, and the language policy at the time favoured the Swedish language (Hult & Pietikäinen, 2014; Liebkind et al., 2007). Today, Finland is an officially bilingual (FinnishSwedish) country, with a stable Swedish-language minority of approximately 5.3% (300,000 people) of the total population of 5 million. The Swedishspeaking minority mostly lives in the coastal regions of Finland, either along the western and southern coast or in the southern archipelago, which includes the self-governing Åland islands (Sjöholm, 2004; Wolf-Knuts, 2013). The most distinctive feature of Finland’s Language Act (Finlex, 2003) is its system of flexible territory, about which the act states: ‘The basic unit of the linguistic division is the municipality. A municipality is either monolingual or bilingual.’ Today, there are 317 municipalities in Finland, of which 268 are monolingual Finnish and 17 monolingual Swedish. Nearly all monolingual Swedish municipalities are situated on the Åland islands. Of the 32 bilingual

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municipalities, 18 have Finnish as their majority language and 14 have Swedish (Statistics Finland, 2015). A municipality does not become monolingual unless the minority falls below 6% (Finlex, 2003; Liebkind et al., 2007). If a municipality is officially bilingual, it is obliged to provide cultural and social services in both official languages (Liebkind et al., 2007). According to the Language Act, which has been in force since 1922 and was last revised in 2003 (Finlex, 2003), Finnish and Swedish are equally recognized as the national languages of Finland, and everyone has the right to use either language when dealing with the central government or bilingual municipal authorities. Finland also has two parallel education systems: the Finnish-speaking and Swedish-speaking systems run side by side, and Finnish and Swedish are used as instructional languages in educational institutions at all levels (Østern, 1997). Thus, in theory, the Swedish-speaking minority and the Finnish-speaking majority have equal linguistic rights and responsibilities, but in practice this can be difficult to achieve. Along the coast, where most Swedish-speaking Finns live, it is usually possible to receive services in Swedish, but elsewhere a good knowledge of Finnish is required. The Swedishspeaking population also varies in their command of Finnish. The Swedishspeaking Finns living in the south tend to be competent Finnish speakers and are well integrated into Finnish-speaking society (Østern, 2004: 660; Sjöholm, 2004: 640). This is not necessarily the case with Swedish speakers living in the western coastal areas. In addition to geographic diversity, there is also diversity related to age. It was not until the 1970s that the Swedish and Finnish languages both became compulsory subjects in primary schools (Wolf-Knuts, 2013: 16); as a result, the older population includes many Swedish-speaking Finns who are monolingual in Swedish. The complex language situation also affects the social welfare and healthcare services. Although the Language Act clearly establishes the right of Swedish-speaking patients to speak their own language in healthcare encounters, this rarely plays out in practice (Ranne et al., 2008). This is particularly problematic in areas where the Swedish minority is small (Swedish Assembly of Finland, 2010), but is also an issue in officially bilingual municipalities like Helsinki (Hospital District of Helsinki and Uusimaa, 2004). Caregivers are mainly recruited on the basis of professional skills rather than language skills, and they frequently have limited knowledge of Swedish (Ranne et al., 2008). However, there are also agencies that provide monolingual social welfare and healthcare services in the minority language, and one such care institution was the focus of this study.

Setting and Participants The data analyzed in this chapter were collected in a larger research project on dementia and interaction1 at a Swedish-language nursing home for

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elderly people with dementia in a bilingual region of Finland. The language used at the home is the Finland-Swedish variety of Swedish. I conducted approximately five months of ethnographic fieldwork at the nursing home; I made the first observations in December 2013 and the last in May 2014. The data include field notes and approximately 23 hours of video-taped conversations with 17 dementia-diagnosed residents (long-term and short-term residents), 10 professional caregivers, and three other participants (i.e. volunteers and family members). The nursing home includes facilities for 12 residents: eight long-term residents and four short-term residents. Of the eight long-term residents, four were capable of producing fluent spoken language, whereas the other four used very little spoken language, in two cases consisting only of non-lexical vocalizations. I did not have access to the medical records of the residents, so my knowledge of the diagnoses and degree of cognitive impairment is based on conversations with the caregivers and does not cover all of the residents. However, my observations of the residents suggested a range of cognitive impairment from mild to severe. Since the nursing home is run by an agency providing Swedish-language healthcare services, the official language of the nursing home is also Swedish. According to the agency’s language policy, Swedish-language care units guarantee that residents with no or poor knowledge of the majority language, Finnish, are provided with care in Swedish. Therefore, fluency in Swedish is required of staff working in the unit. In practice, the language situation is complex. Although long-term and short-term residents speak Swedish as their native language, they live in a Finnish-language region and have all been exposed to the Finnish language to various extents (cf. Wolf-Knuts, 2013). A number of residents are bilingual, and several of the long-term and short-term residents have lived with spouses who speak Finnish as their native language (cf. Östman & Mattfolk, 2011: 76). Thus, many residents are accustomed to speaking more Finnish than Swedish. Further, the staff members include both native and non-native Swedish speakers. Staff members who are non-native Swedish speakers are either members of the Finnish majority population or immigrants who speak Estonian, Norwegian or another non-domestic language as their mother tongue. This creates a complex language situation where staff members must balance between Swedish and Finnish in their conversations with residents.

Methods This study combines CA and ethnography as research methods. In line with CA methodology, I focused on how people with dementia and their interlocutors collaborate to construct meaning in interaction (Guendouzi & Müller, 2006; Jones, 2015; Lindholm, 2008, 2013, 2015; Mikesell, 2009, 2010; Perkins et al., 1998). The data were analyzed in a detailed CA-related manner,

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27

but ethnographic methods were utilized to shed light on the institutional context in which the conversations were situated. In my fieldwork I initially collected ethnographic data and then proceeded to gather video data. First, I visited the nursing home on various occasions and made ethnographic observations and extensive field notes. The purpose of these observations was to gain insight into the daily routines at the home and to identify themes for further research. The first video-recordings were made in March 2014 (cf. Antelius, 2009; Örulv, 2008 on the importance of conducting fieldwork prior to making recordings). During my fieldwork, I took field notes and made observations simultaneously. This simultaneous notation practice facilitated my careful attention to linguistic interaction. During my early visits to the nursing home, I identified several main points of interest for further analysis: language patterns and practices, monologic talk, encounters and potential epistemic conflicts between short-term and long-term residents, vocal and nonverbal interaction, word play and fixed expressions. My identification of these points of interest guided my categorization of and attention to subsequent observations, which I noted and transferred to a separate document after each day in the field. Thus, I analyzed the ethnographic data at the same time as the ongoing fieldwork. Video-recordings, on the other hand, were analyzed after fieldwork and captured both previously identified situations of interest and other types of interactions. The data presented in this chapter are a combination of field notes and conversational extracts that provide a multi-faceted view of the analyzed phenomena, i.e. positioning and language choice. In the results section, detailed transcriptions of video-taped interactions between residents and professional caregivers are provided, along with field note examples of my written notations.

Positioning and Language Choice in the Nursing Home The two phenomena of interest, positioning and language choice, are investigated in conversations among and between professional caregivers and two groups of residents: long-term and short-term residents. When analyzing my data, I observed that long-term residents occasionally positioned themselves as members of the Swedish-language minority. Furthermore, they mostly spoke Swedish. Short-term residents, on the other hand, spoke Finnish more frequently than long-term residents. For their part, the professional caregivers almost exclusively spoke Swedish when interacting with long-term residents, but used both Finnish and Swedish when interacting with short-term residents. Thus, patterns of language choice among the two groups of residents were different, as were those of their caregivers.

28

Mult ilingual Interac t ion and Dement ia

Positioning of oneself and others through talking about language in interaction: Long-term residents In this section, I analyze data on the reflexive and interactional positioning among long-term residents. The data included a total of eight long-term residents who permanently lived at the nursing home, four of whom were capable of producing fluent spoken language; the other four used very little spoken language, and in two cases were restricted largely to non-lexical vocalizations (Samuelsson & Hydén, 2011). The more verbally capable longterm residents occasionally positioned themselves and their interlocutors with regard to membership in the Swedish-language minority. Positioning of this kind was not observed in the talk of short-term residents, who were not observed to reflect on language choice or their minority position. To provide a many-sided picture of positioning, data involving two long-term residents, here called Georgina and Emma, were chosen for detailed analysis. The analysis draws on two types of data: ethnographic field notes and CA transcripts. The first aspect of positioning that I discuss is positioning oneself and others through talking about the complex language situation in Finland. This situation is exemplified through the interactions of Georgina, who was linguistically and communicatively proficient. Georgina was very social, and she did not at first give the impression of being forgetful. In lengthy conversations, however, it became evident that she was not always well-oriented in time and space. Therefore, it was not always possible to assess whether she was able to identify and categorize her conversational partners (cf. Lindholm, 2015). This was obvious in how she positioned herself and others in interactions with people in her immediate environment. Frequently, Georgina used topics from a newspaper that she was reading or an ongoing TV programme in order to speak about the language situation in Finland. She referred both to language use in the Finnish society at large and to her individual position as a member of the Swedish-speaking minority in Finland. In the following conversational extract, Georgina acknowledges the minority status of Swedish at a national level, but she speaks more from the national perspective of the Finnish-speaking majority.

Extract 2.1: Video data, 26 March 2014 G = Georgina, elderly lady; F = Frida, elderly lady; E = Emma, elderly lady; S = Sarah, elderly lady; conversation in Swedish.2 01 G: syrier då so[m får komma [ti Finland Syrians then w[ho can come [to Finland ((gazes at F)) 02 F:

[jå [yes

Ageing as a Swedish-speak ing Finn

03 X:

29

[((c o u g h [s))

04 S:

[((coughs))

05

(.)

06 E:

[va [what

07 G: [(fundera just) syrierna man måste no titta på kartan [(was just pondering) the Syrians one needs to look at the map 08

var syrierna3 ligger where the Syrians is situated ((looks down))

09

(0.6)

10 E:

(j[o) (y[es)

11 G: 12

[(hm) (0.6)

13 G: va pratar man för språk = what language is spoken = 14 E:

=#(– [– – –)#

15 G:

]

[så ska di komma ti Finland ] här pratar vi [finska [then they’re coming to Finland] here we speak [Finnish

16 X:

[((coughs))

17 G: å svenska. and Swedish. 18

(0.2)

19 E:

jo[: ye[s

20 X: 21

[((clears throat)) (1.8)

22 G: finskan e ju huv[usprå [ke (-), Finnish is the mai[n lan[guage y’know (-), ((nods, gazes at F)) 23 X:

[((cou[ghs))

24 E: 25

[(– – –) (0.4)

26 G: här i alla fall here at least

30

Mult ilingual Interac t ion and Dement ia

Georgina is seated at a table in the company of three other residents: Frida, Claus and Sarah; when the extract starts, she is reading aloud a passage about Syrian refugees coming to Finland. She seems to be addressing Frida, who is seated on her left side, as the primary recipient, because she looks at her after producing her turn in Line 01. As she continues, Georgina looks down at the newspaper, and it is not evident who she is addressing as the recipient. In Line 22, she again addresses Frida by looking at her. Georgina stresses the information she is providing by nodding while saying that Finnish is the main language. Here, Georgina is commenting on the language situation in Finland, and her use of the deictic adverb här (‘here’, Lines 15 and 26) apparently refers both to the language situation in Finland in general and to the bilingual part of Finland in which this conversation takes place. There are two particularly interesting points about this exchange. First, we note that Georgina focuses on language use and the languages spoken in Finland, even though that was not the focus of the newspaper article. That her comments about language issues are triggered by seemingly remote references suggests the salience of the topic for her. Secondly, Georgina’s positioning vis-à-vis the other participants’ knowledge about the language situation in Finland is ambiguous. On the one hand, she uses the Swedish particle ju (translated as ‘y’know’), indicating shared knowledge (Aijmer, 1996: 402), as she is talking to Frida about the two official languages of Finland (Line 22). On the other hand, imparting information about the language situation in Finland would seem unnecessary in speaking to someone who belongs to the same nationality and language minority as oneself. This information could probably be treated as common ground and need not be explicated in this manner. Georgina seems to be insecure about how she should position her conversational partner Frida, as if to ask if Frida should to be included in the same category as Georgina or not. Extract 2.2 provides another example that illustrates ambiguity in Georgina’s positioning of others. Here, she is commenting on a headline in the newspaper Hufvudstadsbladet4 that deals with problems related to recruiting staff for the Swedish-language healthcare services in Finland. In her comment, addressed to one of the caregivers, Georgina attributes the reason for staff recruitment problems to certain preferences of the Swedish-speaking minority.

Extract 2.2: Field note, 4 February 2014 Georgina säger: ‘Finlandssvenskar vill göra något annat när de blir äldre, de vill inte bli sköterskor på ålderdomshem.’ Georgina says: ‘Swedish-speaking Finns want to do something else when they get old, they don’t want to be nurses at homes for elderly people.’ Georgina’s comment is intriguing in several ways. The newspaper headline mentioned Swedish-language healthcare services, but Georgina focuses on the

Ageing as a Swedish-speak ing Finn

31

category of caregivers at nursing homes for the elderly. In doing so, she seems to relate the topic of the article to her current circumstances as a resident of a nursing home. In both Extracts 2.1 and 2.2, Georgina uses news reports as springboards for making comments about language issues of Finland. The combination of the content of Georgina’s comment and the person she is addressing adds to the complexity of the situation. She makes a general statement about Swedish-speaking Finns not preferring to work at homes for the elderly, even though she is currently living in a nursing home with caregivers who speak Swedish and, in fact, is addressing a caregiver in Swedish. Thus, she is telling a Swedish-speaking caregiver that Swedish-speaking Finns prefer professions other than positions in elderly care, without continuing the topic by, for example, referring to the recruitment of caregivers to the nursing home in which she is currently living. Both Extracts 2.1 and 2.2 thus illustrate contradicting features of Georgina’s capacity to position her co-participants in terms of their language and nationality. Whereas in the previous examples Georgina makes rather general statements about the language situation in Finland, on other occasions she positions herself and the local community as members of the language minority. In Extract 2.3, a question about a newspaper (Line 05) triggers a discussion about language issues.

Extract 2.3: Video data, 26 March 2014 G = Georgina, elderly lady; Å = Åsa, elderly lady; conversation in Swedish. 01 Å: e där en tidning då is there a newspaper 02

(2.1) ((remote voices))

03 G: j:ååh men, (hh) ye:ah but, (hh) 04

(0.9)

05 Å: e den finsk is it (in) Finnish 06

(0.6)

07 G: nej de e en HBL no that’s HBL 08

(0.8)

09 G: Hu[sis5 10 Å:

[aj där sir du [oh there you see

32 Mult ilingual Interac t ion and Dement ia

11 G: jå yes 12

(0.6)

13 Å: jå yes 14

(1.0) ((remote voices))

15 Å: ja märkt- titta int, I didn’t not- look, 16

(0.3)

17 G: .schu= 18 Å: =[åt de hålle =[in that direction 19 N: =[Olivia ((calls from another room)) 20

(0.2)

21 G: jåå: (0.5) nå vi e alla ganska finlandssvenskar här ye:s (0.5) well we are all quite Finland Swedish here 22

(0.3)

23 Å: jå yes 24

(2.4)

25 G: ja hade nog en finsk mamma men (-) well my mum was Finnish but (-) 26

(2.1)

27 G: *hon lärde sej nog svenska också* *she did learn Swedish too* Åsa, who is seated at the other end of the table, asks Georgina for help in identifying a newspaper lying on the table (Lines 01 and 05). After Georgina has identified the newspaper, Åsa provides an account of why she did not recognize it (Lines 15 and 18). As a continuation of the identification of the newspaper, Georgina positions herself and the local community as members of the Swedish-language minority (Line 21). The pronoun we and the deictic adverb här (‘here’) appear to refer to the nursing home. Because the nursing home hosts a Swedish-speaking community, it is only natural that a newspaper lying on the table is in Swedish. The newspaper becomes a symbol for the local language context. Interestingly, Georgina refers to the community

Ageing as a Swedish-speak ing Finn

33

at the nursing home as all being ganska finlandssvenskar (‘quite Finland Swedish’), which seems to suggest that the residents mainly, but not fully, identify with the minority population of Swedish-speaking Finns. She also uses the adjective Finnish (Line 25) when referring to her mother; this adjective refers both to her mother’s nationality and to her speaking Finnish as her first language. Thus, she also seems to indicate that there are some reservations about her own and the community’s membership in the Swedishlanguage minority. Once again, it is worth noting how Georgina positions herself in interaction with Åsa, who is a short-term resident. When Georgina uses the inclusive pronoun we and the deictic adverb here (Line 21), it is evident that she is talking about the local community and including herself in this local group of Swedishspeaking Finns. However, if Åsa had belonged to the same local community as Georgina, there would probably have been no need to explain the language situation to her. Georgina includes herself in the local community, but she obviously treats Åsa as a person who lacks knowledge about the community’s members and to whom she must explain the language situation. The previous examples illustrate reflexive and interactional positioning in interactions with various conversational partners. The next section deals with other manners of expressing a position as a member of a language minority.

Positioning in monologues This section deals with positioning as expressed through talk about language in monologues. I observed this phenomenon in the monologues of a long-term resident named Emma. When I focused analytic attention on Emma’s talk, I noticed that she frequently produced monologues about Swedish speakers and places where Swedish is spoken. In addition, she occasionally codeswitched and used Finnish in her monologues. Thus, Emma’s monologues included both instances of reflexive positioning as a Swedish speaker and proof of her bilingual competence. The following extract exemplifies how Emma tells a fragmentary story, which includes various participants; both a Swedish-speaking ‘we’ and a Swedish-speaking ‘they’ are involved.

Extract 2.4: Video data, 14 April 2014 Monologue by E = Emma, elderly lady. 01 E: (.mt) alla (tar den) jo (.mt) everyone (takes it) yes 02

(1.5)

03 E: vi e svenskatalande we are Swedish-speaking

34 Mult ilingual Interac t ion and Dement ia

04

(0.4)

05 E: *jo* *yes* 06

(1.3)

07 E: di ska tala svenska här jo they will speak Swedish here yes 08

(1.4)

09 E: så (↑te vi snar) so then (↑ –––) In Line 03, Emma makes a general statement about a category (‘Swedish speaking’) in which she includes herself. The concept ‘Swedish-speaking’ is often used to refer to the Swedish-language minority in Finland, and Emma positions herself as a member of this category by using the inclusive pronoun we (Line 03). By using a response particle in Line 05, she appears to confirm the content of her own previous utterance, and in Line 07 she moves on to introduce another referent, they. Her utterance is ambiguous because the modal verb ska (‘will’) can be either a temporal auxiliary or epistemic and deontic modal verb (Teleman et al., 1999: 247, 312). Whereas a temporal auxiliary verb indicates future time, an epistemic modal verb indicates that the utterance is true according to what the speaker has heard someone else say, and a deontic modal verb indicates that someone requires a certain type of action from someone who otherwise would not perform this action. The meaning of Emma’s ska is not clear because of the monologue’s context, but there are a few possible interpretations: (a) she is simply stating that ‘they’ will speak Swedish when ‘they’ come to the same place as the Swedishspeaking ‘we’; (b) she is referring to second-hand knowledge that she heard from someone else; or (c) she is talking about the expectation of the wecategory that the they-category should use the language of the here-and-now in her story. Thus, she is constructing an inclusive category and a here-andnow in which Swedish is the central language. As a general observation, we might note the dialogic nature of Emma’s monologues. The most prominent dialogic trait is her use of the response particle jo (‘yes’). This response particle is used at the end of Emma’s utterances, which gives her speech a certain rhythm; it also gives an external observer the impression that Emma is perhaps having a dialogue with an ‘other’ who is invisible to other people. In certain situations, as for instance when she is tired, Emma includes elements from her immediate environment in her fragmentary stories. In a manner similar to the confabulations that I explored elsewhere (Lindholm, 2015), in the following extract Emma appears to mix the current situation with a situation from her past.

Ageing as a Swedish-speak ing Finn

35

Extract 2.5: Field note, 4 February 2014 Emma’s monolog: ‘Jag skulle vilja tala svenska jo, vad han var dålig, alla dom bor där jo, klockan är snart elva, tala svenska och börja sova jo, dåliga människor som vi har, ska gå och sova, vi går sova i egen säng, tala mycket vackert, mennään nukkumaan juu, klockan är mycket redan, vi går och sova redan jo, vi ska fara hem, vi sover riktigt bra, så är det jo, du ska tala svenska jo.’ Emma’s monologue: ‘I’d like to speak Swedish yes, oh he was so poorly, they all live there yes, it’s soon eleven o’clock, speak Swedish and start sleeping yes, bad people we do have, will go to sleep, we go sleep in our own bed, speak very beautifully, let’s go to sleep yes, it’s late already, we go to sleep yes, we’ll go home, we’ll sleep really well, that’s the way it is yes, you need to speak Swedish yes.’

The elements of ‘tiredness’ and ‘going to sleep’ appear to be illustrations of Emma’s current situation, since they build up in her monologue after a nurse asks her whether she wants to go for a walk. Thus, integrating elements of tiredness and sleeping in her monologue seems to be Emma’s way of resisting a proposed action. In fact, the nurse who suggests going for a walk later makes the comment that Emma spoke of being tired. On the other hand, the element of ‘speaking Swedish’ is more generic. It constitutes a recurring pattern in Emma’s monologues (cf. Extract 2.4) and may refer to either the current situation at the nursing home or to social encounters in Emma’s past. Distinguishing the extent to which Emma reacts to the surrounding environment is a complex task, but the element of ‘speaking Swedish’ is a recurring and therefore potentially important theme that expresses her positioning as a Swedish speaker. We note that Emma codeswitches from Swedish to Finnish in the middle of the ongoing monologue; the element mennään nukkumaan juu (‘let’s go to sleep yes’) is spoken in Finnish. Even though her comments on the Swedish language and codeswitching to Finnish occur in Emma’s monologues, they usually do not occur together. Thus, Emma usually either positions herself as a Swedish speaker or demonstrates her functional bilingualism by codeswitching, but does not do so simultaneously. Data involving the two long-term residents, Georgina and Emma, show that they differ in their manner of positioning themselves as members of the Swedish-language minority in Finland. Georgina uses TV and newspapers as sources for discussions about language policy. She constructs a picture of herself as a person who has knowledge about the language situation in Finland, the preferences of the Swedish-speaking minority, and the nursing home as a place for the minority language. Emma, on the other hand, uses both Finnish and Swedish in her monologues, and she also constructs a picture of a place, a here-and-now, where Swedish is spoken and the participants (the ‘we’ and the ‘they’ of the story) speak Swedish. She even gives advice about teaching Swedish to other participants: Ni e vanliga mänskor jo,

36 Mult ilingual Interac t ion and Dement ia

så tala lite med de där barnen, så lär de att tala svenska (‘You are ordinary people yes, so speak a little with those children, then they learn how to speak Swedish’), and refers to language choice; Säg åt mej då om jag talar finska eller svenska, vi tar svenska jo (‘Tell me whether I speak Finnish or Swedish, we’ll choose Swedish yes’). Even though it is difficult to assess to what extent Emma responds to contextual prompts in the nursing home environment, it is still possible to state that the notion of a place where the minority language is spoken is strong in her monologic contributions.

Language choice: Short-term residents The short-term residents’ position in the nursing home is different from that of the long-term residents. They enter the home at regular or irregular intervals, stay for periods of one or two weeks, and then return home. Through my observations of the residents, I noticed that that the short-term residents take an outsider perspective on the nursing home, and that this may be related to their dual use of Swedish (the majority language of the nursing home) and Finnish (the majority language of the surrounding society, and perhaps also of their homes). In their talk, the short-term residents rarely position themselves as Swedish speakers, in the same manner described in the previous section. Further, all nine short-term residents included in this study used more Finnish than did the long-term residents. Some of the shortterm residents used more Finnish than Swedish in interactions with both professional caregivers and fellow residents. The short-term residents seem to treat the nursing home as a language community with the same rules as the surrounding society. Swedishspeaking Finns living in bilingual municipalities are accustomed to navigating a landscape where Finnish is the majority language and Swedish is the exception. Again, despite the requirement of the Language Act (Finlex, 2003) that majority and minority languages should be equally recognized, Swedishlanguage services are fewer in number than their Finnish counterparts. Therefore, Swedish-speaking Finns are accustomed to using Finnish as the default language when entering situations not previously known for providing services in Swedish. This also happens with short-term residents at the nursing home, as in the following field observation which captures a gentleman in short-term care coming out of his room, sitting down at a table with a group of nursing home residents, and addressing them in Finnish.

Extract 2.6: Field note, 22 January 2014 Korttidsvårdade 3, herre på hörnet, kommer ut ur rummet och tar initiativ på finska: ‘Mulla on vähän huono kuulo.’ Short-term care 3, gentleman on the corner, comes out of his room, and takes an initiative in Finnish: ‘I have a bit of a hearing problem.’

Ageing as a Swedish-speak ing Finn

37

As noted by Wolf-Knuts (2013), many Swedish-speaking Finns live bidimensional lives, speaking Swedish at home but Finnish with their colleagues and in many other social situations. This might lead to their frequent use of Finnish in situations where they are not sure about the native language of their conversational partners. This is the case, for example, in service encounters, which occasionally lead to situations where a Swedish-speaking customer uses Finnish to speak to another Swedish speaker working behind the counter. As noted by Ringbom (2001: 61), Swedish speakers in bilingual cities learn to linguistically navigate the territory; they learn when and where they can communicate in Swedish. Thus, we can see that the language behaviour of a short-term resident addressing a group of nursing home residents is in line with this pattern. On other occasions, differences in language choice might be more a case of personal preference, as in the following series of short interactions between long-term resident Georgina and short-term resident Oscar. Georgina and Oscar are sitting next to each other watching a Finnish-language movie on TV. While watching the movie, Oscar produces a series of short phrases in Finnish, as in Extract 2.7 where he utters the Finnish-language token anteeksi (‘excuse me, I’m sorry’).

Extract 2.7: Video data, 12 March 2014 G = Georgina, elderly lady; O = Oscar, elderly man. 01 O: ((Sits with his right hand under the back of his 02 head in his backward leaning wheelchair. 03 His face and his gaze is turned upwards)) 04 O: anteeksi excuse me/(I’m) sorry 05 06 07 08

((O turns his gaze and his face towards the TV)) ((A scene with song starts, Oscar and Georgina are both sitting with their gaze directed at the TV and their mouths open))

In the analysis of this extract, it is important to consider that Oscar is in a wheelchair and has decreased mobility in his neck and back region. Therefore, it is sometimes difficult to assess what he is reacting to; he does not necessarily change his body posture in the direction of whatever catches his attention. This is also the case for anteeksi in Line 04. On the one hand, Oscar is looking at the TV and thus seems to be reacting to events on the screen, but this is difficult to evaluate because of his decreased mobility. On the other hand, there is a strong interpersonal dimension to the token he uses: it can function both as an apology and as

38

Mult ilingual Interac t ion and Dement ia

an open repair initiator of the same type as what (Drew, 1997). The prosodic features of this token would likely indicate its function as an apology rather than a repair initiator; however, Georgina does not respond to his token, so we cannot rely on her interpretation to disambiguate its meaning. The next extract illustrates a conversation between Oscar and Georgina. This conversation takes place a few minutes later than the exchange in Extract 2.7.

Extract 2.8: Video data, 12 March 2014 G = Georgina, elderly lady; O = Oscar, elderly man; S = Sarah, elderly lady. Conversation in Finnish and Swedish. 01 O: (med blicken mot TV:n)) kuka sieltä tulee ((while watching TV)) who’s coming there 02

(1.4)

03 G: (*emmä tiedä*) (*don’t know*) ((straightens her legs and watches the TV)) 04 S:

((continues walking towards the hall))

05 O: mitä? what? ((watches the TV)) 06 G: ja vet int ((vänder blicken mot köket)) dedär (1.5) I don’t know ((turns her gaze towards kitchen)) uhm (1.5) 07

(de e flickona här ser ja) ((vänder blicken tillbaka (it’s the girls there I think) ((turns her gaze back

08

mot TV:n igen)) (0.4) jobbar här o towards the TV)) (0.4) work here and

09

(0.4)

10 O: AJ 11

(0.9) ((Georgina turns her face towards the kitchen))

12 G: ja yes ((glances towards kitchen and back towards the TV)) 13

(2.2)

14 O: HEI KUKA SIELTÄ TULEE HEY WHO’S THERE ((turns his ear and gaze towards Sarah)) 15 G: ((Georgina turns her head and her gaze towards Sarah and 16

then back towards the TV))

Ageing as a Swedish-speak ing Finn

39

As in Extract 2.7, Oscar here produces a Finnish-language utterance, asking who is coming (Line 01). He keeps looking at the screen, so it is not evident whether he is referring to an encounter on TV or to someone moving in the physical space where he and Georgina are sitting. However, another resident, Sarah, is walking in the background. Georgina reacts in a different manner from in the previous extract, first by responding verbally (Line 03), then by looking around (Line 06) and producing a more elaborated response (Lines 06–08) by referring to the caregivers at the nursing home. Thus, she treats Oscar’s utterances as referring to the local environment, not to the TV screen. Oscar’s response (Line 10) is ambiguous. The token aj has a double meaning in the Swedish variety spoken in Finland; it can express pain (as in ‘ouch’ in English) or function as a news marker (similar to ‘oh’ in English). Earlier in this situation, Oscar had been using aj, obviously to express pain, but the sequential position of his token is consistent with a news marker, indicating that it is news to him who is walking around in the background. Georgina responds with a rather neutral acknowledgement token (Line 12), after which Oscar repeats his question, louder than before (Line 14). Georgina does not respond verbally. However, she looks around the room (Lines 15–16), and her tense shoulders and body posture demonstrate signs of distress. If we study Extract 2.8 from the point of view of language choice, we can see that Oscar makes initiatives in Finnish and Georgina responds in both Finnish (Line 04) and Swedish (Lines 06–08). While we can see that Georgina uses Swedish even though she is clearly responding to Oscar (Lines 06–08), there is no proof of that same pattern regarding Oscar’s repeated question in Line 14. It is not evident whether Oscar has heard Georgina’s response; there are no markers of him orienting towards her in his response. They use different languages but, even though we can, in Georgina’s case, see her responding to Oscar in another language, Oscar’s use of Finnish and its relation to Georgina’s use of Swedish is difficult to interpret (cf. Hyltenstam & Stroud, 1993; Hyltenstam & Stroud, 1989, for studies of language choice and language separation in dementia). Extract 2.8 did not contain any evidence of participants’ shift in language choice to accommodate the co-participant, but this phenomenon is exemplified in Extract 2.9.

Extract 2.9: Video data, 12 March 2014 G = Georgina, elderly lady; O = Oscar, elderly man. Conversation in Finnish and Swedish. 01 O: lakki lensi the hat flew 02

(0.4)

03 G: jo-ho (0.6) (m-) ye-hes (0.6) (–)

40 Mult ilingual Interac t ion and Dement ia

04

(0.8)

05 O: ((runs his fingers through the back of his head)) 06 G: di for me sin mor (o) far they went with their mother (and) father 07

(0.6) ((Georgina straightens her legs))

08 O: va what 09

(0.6)

10 G: didär pojkarna (som ska) cykla fo me sin mor those boys (who will) bicycle went with their mother 11

o far and father

Oscar makes an initial comment in Finnish (Line 01), but after Georgina’s comment in Swedish (Line 06) he produces a repair initiator in Swedish (Line 08). Here, we can see Oscar codeswitching as a response to Georgina’s use of Swedish. Thus, he adapts to the language spoken by his co-participant. In this situation, he seems to react towards something being broadcast, using Finnish, whereas when Georgina addresses him in Swedish he changes his language to Swedish. As in Extracts 2.1, 2.2 and 2.3 above, this is an example of how media such as television and newspapers appear to have an effect on the overall language situation at the nursing home. In the previous extracts, we saw examples of language choice in interactions between two residents. There are also situations in which one resident makes a meta-language comment about the preferred language choice of another resident. This is the case in the following interaction between shortterm resident Andrew and long-term resident Georgina.

Extract 2.10: Field note, 22 January, 2014 Andrew talar finska vid bordet, men Georgina säger: ‘Du talar svenska också, jag har glömt finskan.’ Andrew speaks Finnish at the table, but Georgina says: ‘You also speak Swedish, I have forgotten the Finnish.’ Thus, Georgina orients Andrew towards her preferred language. Perhaps she is suggesting that it would be easier for her to communicate with him if he spoke to her in Swedish. In the examples discussed in this section, we have noted how the residents’ language choices or personal preferences contribute to the shaping of

Ageing as a Swedish-speak ing Finn

41

the nursing home into a bilingual environment. The aspect of personal language preference takes us to the third and final part of the analysis, which deals with the language preferences of the professional caregivers and how they vary in discussions with long-term and short-term residents.

Language choice: Professional caregivers The previous sections have focused on the phenomena of positioning and language choice in relation to the elderly residents. This third section of the chapter analyzes how the professional caregivers choose language in their interactions with residents. As noted above, in the nursing home Swedish is the official and administrative language, and the language of services provided to the residents. Sufficient proficiency in Swedish is required of the professional caregivers, but there is no detailed language policy concerning the use of Swedish and Finnish in particular situations. During my fieldwork, I observed that the caregivers used Swedish almost exclusively in interactions with long-term residents, whereas they used Finnish much more frequently in discussions with short-term residents (who in general demonstrated more bilingual competences). The following analysis presents a few snapshots of the professional caregivers’ language practices in interactions with long-term and short-term residents, respectively.

Professional caregivers interacting with long-term residents The professional caregivers rarely used their bilingual competence in interactions with long-term residents. That was the case even with longterm residents who demonstrated fluency in Finnish by using Finnish in conversations with other people, including visiting family members. In spite of this, Swedish was the main language in interactions between caregivers and long-term residents, with very few exceptions. One such exception is demonstrated in Extract 2.11, in which Emma comments on her previous sneeze with the Finnish-language interjection kauheeta (‘horrible’) in Line 03. Nurse Minna responds by handing her a tissue (Line 04) and uttering the verbal fragment ole, which is the first component of the Finnish phrase ole hyvä (‘there you are’).

Extract 2.11: Video data, 12 March 2014 E = Emma, elderly lady; M = Minna, nurse. 01 E:

((nyser och harklar sig)) (.hhhhh) ((sneezes and clears her throat)) (.hhhhh)

02

(0.7) ((Minna hurries to Emma))

42

Mult ilingual Interac t ion and Dement ia

03 E: 04

kauheeta horrible (1.1) ((Minna gives Emma a tissue))

05 M: ole there 06 E:

voi voi (.) tack oh no (.) thank you

07

(1.3) ((Emma accepts the tissue))

08 E:

(–) =

09 M: =värre saker kan hän:da Emma =worse things can happ:en Emma ((walks out of the picture)) In her response (Line 06) to Minna’s embodied action of handing her a tissue, Emma switches from Finnish to Swedish. The turn-initial repeated interjection voi voi (‘oh no’) is an originally Finnish-language element and a conventionalized loanword in the Swedish variety in Finland, and the following element tack (‘thank you’) is produced in Swedish. Emma makes a switch from Finnish to Swedish, and Minna responds in Swedish (Line 09). Extract 2.11 provides an illustration of Emma’s language choice and how the professional caregivers deal with this choice. Emma’s Finnish-language words and expressions tend to be self-directed, as in Line 03 where her Finnishlanguage interjection does not appear to have a particular addressee. Minna’s response (Line 05) is produced in the same language as Emma’s interjection. When Emma switches to Finnish, Minna follows the switch. This demonstrates a case of how the next speaker uses the language of the previous speaker (Auer, 1984); in other words, language choice is made on a turn-by-turn basis. As another exception to the general pattern of caregivers and long-term residents, consider the following example. During my fieldwork, I observed that Minna, a caregiver whose first language is Estonian, codeswitched between Finnish and Swedish in various interactions with long-term resident Dina, who has a severe hearing impairment and can only produce non-lexical vocal actions. In Extract 2.12, Minna switches between Finnish and Swedish, and produces a turn consisting of three Finnish-language units followed by two Swedish-language units.

Extract 2.12: Field note, 14 February 2014 Minna talar finska med Dina: ‘Toin munkkeja, et jaksanut odottaa.’ Hon säger även: ‘Tule kulta, kävelylle, ota kiinni tästä, fötterna på marken, just det.’ Minna is speaking to Dina in Finnish: ‘Toin munkkeja, et jaksanut odottaa’ (‘I brought donuts, you didn’t have patience to wait’). Later,

Ageing as a Swedish-speak ing Finn

43

she says: ‘Tule kulta, kävelylle, ota kiinni tästä, fötterna på marken, just det’ (‘Come dear, for a walk, hold on to this,7 your feet on the ground, like that’).8 As noted above, Minna’s first language is Estonian, so both Finnish and Swedish constitute foreign languages in her repertoire (even though Finnish is structurally and lexically closer to Estonian). Throughout the data, Minna was observed to occasionally use Finnish in her interactions with fellow staff members. However, she usually did not initiate Finnish in interactions with the residents; for example, in Extract 2.11 we can see her responding to Emma in Swedish. Thus, Minna’s interactions with Dina constitute an exception. The reason for this is probably that Dina has a hearing impairment and only produces non-word vocalizations; thus, she cannot clearly be identified as using Swedish or Finnish. Therefore, Minna’s primary interest seems to be interacting with Dina, making initiatives, and treating Dina’s vocalizations as meaningful actions (Samuelsson & Hydén, 2011), rather than attending to language choice. In sum, the caregivers rarely utilized their bilingual competence in interactions with long-term residents. Both the long-term residents and the caregivers used the official language of the institution in these encounters. The situation was different in interactions with short-term residents, which is analyzed in the following section.

Professional caregivers interacting with short-term residents In interactions with short-term residents, who demonstrated a greater frequency of bilingual practices than the long-term residents, the caregivers used Finnish and Swedish in situation-related and idiosyncratic manners. It is well-known that people who have memory-affecting conditions develop both communication difficulties and problems with executive functions. Therefore, they do not always react immediately to initiatives such as requests and proposals. In such cases, the person who makes the initiative often needs to formulate a new initiative. Sometimes the previous initiative is repeated, whereas on other occasions it is reformulated. One way of reformulating an initiative is to produce a new initiative in another language. Switching from one language to another can be used as a so-called ‘emergency measure’ to make practical situations work (Müller, 2009: 151). Müller noted in her study that nurses used their restricted French vocabulary to manage caregiving tasks. I observed this same pattern in my data: the professional caregivers first produced an initiative in Swedish, and then when the resident did not accomplish the requested action, the caregivers would repeat the initiative in Finnish. The next extract provides an illustration of how nurse Laura switches from Swedish to Finnish when she asks Frida to sit down (Lines 01–03 and 21). The setting is a complex group situation, with several elderly people being seated at a table amid simultaneous ongoing conversations.

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Mult ilingual Interac t ion and Dement ia

Extract 2.13: Video data, 26 March 2014 F = Frida, elderly lady; Å = Åsa, elderly lady; L = Laura, nurse. Conversation in Finnish and Swedish. ((Frida and Laura stand next to each other. Laura has her hand on Frida’s back. Laura is speaking to Åsa, who is sitting at the table. Frida leans in closer to Laura, and follows her with her gaze. Laura turns to look at Frida and then turns her gaze toward the table and points at it. Frida turns her gaze toward the table)) 01 L:

nu får du Frida sätt dej här [*hördu* så får du mat now you can sit down here Frida [then you’ll get food

02 L:

((keeps her hand on Frida’s back and points at the chair, thereafter holding out Frida’s chair 3,5 s.))

03 F:

((leans forward to feel the seat of her chair with her hand, looks at Åsa.))

04

(tämä on vä [hän ehkä märkä) (-) no ei se oo (this is per [haps a bit wet (–) oh it’s not

05 L:

[(–) ((leans over beside to feel the chairseat))

06

(0.5)

07 F:

ei se oo märkä mä luulin et se oli märkä it’s not wet I thought it was wet

08

(1.1)

09 L:

(se on ihan kuiva) (it’s completely dry) ((speaks in Frida’s ear)) (2.0)

10 F:

ei o it’s not ((looks at Åsa))

11

(0.4)

12 F:

ei oo it’s not ((looks at Åsa and shakes her head))

13 L:

se on [ihan kui[va it’s [completely dr[y

14 F: 15 Å:

[ei [no ((stands straight up, pulls away from the chair)) [(ei toss oo kukaan ((shakes her head)) [(nobody has sat

Ageing as a Swedish-speak ing Finn

45

16

ist[unu) the[re) 17 F: [ja [sit, [and [then, [tuu sit tähä istuu vaan = -> L: [so just come and sit here = ((takes Frida’s hand, looks 19 her in the eyes and points at the chair)) 20 F: =((no[ds)) 21 Å: [sit vois olla mut nyt ei oo [it could be if somebody had but nobody has 22 ((Frida sits down with some assistance from Laura)) In Lines 01 and 02, nurse Laura proposes to Frida that she (Frida) sit down at the table. Laura combines her verbal directive with bodily contact (cf. Cekaite, 2015) to guide Frida towards a chair she has pulled out. Frida does not perform the action proposed by Laura. Instead, she leans forward, touches the pulled-out chair in what seems like a movement to brush away something, and makes a comment in Finnish about the surface of the chair (Lines 04–07). She at first believes the surface to be wet, but then says that her previous perception was false. Åsa, another short-term resident seated at the end of the table, and nurse Laura, both using Finnish, agree with Frida’s statement. Frida comments about the chair, but she does not sit down. At this point (Line 18), Laura repeats her previous proposal, this time in Finnish. There are several potential reasons for the switch from Swedish to Finnish in Laura’s proposal. One obvious reason is that the Finnish language functions as an emergency measure of the aforementioned kind. The situation at the table, with parallel conversations and activities taking place at once, is potentially confusing and difficult to grasp for the residents; consequently, we can see that Frida does not proceed to perform the proposed action, but instead becomes engaged in making comments about the current environment. Thus, Laura’s change of language might be a way of facilitating the situation and making the proposal easier for Frida to comprehend. Another possibility is, of course, that Finnish is the language spoken in the interaction involving Frida, Åsa and Laura from Line 13 onwards. By repeating the proposal in Finnish, Laura incorporates the proposal as part of the ongoing interaction (cf. language consistency across turns; Nevile & Wagner, 2011), whereas a change to Swedish would have indicated a more prominent shift. The previous extract demonstrates how a switch from Swedish to Finnish functioned as a device for achieving a practical outcome. Whereas even restricted vocabularies can be useful in cases where another language is used as an emergency measure (cf. Jansson, 2014), a more proficient bilingual competence is needed in those types of interactions more reminiscent of social ‘small talk’. The following example demonstrates how nurse Olivia

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has a conversation with Frida exclusively in Finnish. Olivia goes to fetch something from another room. As she leaves the room, Frida stands up and takes a few steps. When Olivia comes back into the room, Frida walks towards her and asks whether Olivia has seen her husband.

Extract 2.14: Video data, 26 March 2014 F = Frida, elderly lady; E = Emma, elderly lady; O = Olivia, nurse. Whole conversation conducted in Finnish. 01 F:

näkyyks se siel (.) [ylimääräisiä £(m:iehiä)£ do you see him there (.) [extra £(m:en)£

02 O: 03

[ei ei e- e[no no n– n– (0.2)

04 O: jotain ylimääräistä miestä jonka nimi on Arska an extra man whose name is Arska 05

(0.2)

06 F:

(( l [a u g h [s ))

07 O:

[ei[ei näkyny [didn’t– [didn’t see

08

(0.7)

09 F:

((lau[ghs))

10 O:

[hän tulee varma[a iltapäivällä [he’ll surely com[e in the afternoon

11

(0.2)

12 F:

kyl se tulee yes he’ll come

13

(0.2)

14 O: se tule[e. he’ll c[ome. Frida asks Olivia whether she has seen any extra men (Line 01). In her response, Olivia adds a new element to the asked-for reference: a reference to men not belonging to the nursing home is combined with the first name of Frida’s husband. Olivia’s joking response (Lines 04 and 07) and Frida’s laughter (Lines 06 and 09) constitute a side sequence between Frida’s original question (Line 01) and Olivia’s response (Line 10). In Line 10, Olivia switches

Ageing as a Swedish-speak ing Finn

47

from a joking manner to a more serious one, convincing Frida that her husband will come to visit her in the afternoon. The whole conversation in Extract 2.14 is conducted in Finnish. The language choice is apparently determined both by the participants’ personal language preferences and the situation. Both Frida and nurse Olivia are bilingual. Frida’s native language is Swedish, but her language of preference seems to be Finnish. Olivia’s native language, on the other hand, is Finnish, even though she shows native-like proficiency in Swedish. Due to their bilingual competence, they can interact in either Swedish or Finnish. Further, the conversation takes place not in an institutional group situation, but is rather a two-party conversation between two people with bilingual competencies. Of course, all situations conducted in a nursing home are to some extent institutional, and the reassuring activity performed by Olivia is a form of care. However, my observations have revealed that language choice practices vary between two-party conversations and group interactions. Caregivers tend to stick to Swedish, the official language of the institution, more frequently in group settings (see Extract 2.13 above for an exception). One may hypothesize that language choice is driven by the participants’ competencies and their (potential) awareness of the language preferences of the other participant(s) in combination with the level of intimacy and informality of the situation. During my field work, I observed that daily life at the institutional level of the nursing home is largely conducted in Swedish. This section has, however, focused on some exceptions, that is, situations in which caregivers used Finnish in interactions with residents. Finnish was mostly restricted to dyadic situations of caregiving, such as when a caregiver provided care to a resident with no spoken language or had a reassuring conversation with a resident whose language preference was Finnish. The language of more formal situations (e.g. during meals) was conducted in Swedish, with a few exceptions. Some transactional communication did take place in Finnish, for example, when Finnish was used as an emergency measure to manage caregiving tasks.

Conclusions A complex landscape of language use patterns emerged from observations and close analysis of interactions involving the residents and caregivers of the nursing home. By focusing on the phenomena of positioning and language choice, this study adds to the knowledge about how dementia affects the expression of linguistic identity and the language skills of functionally bilingual people. It demonstrates the varying language patterns of bilingual people with dementia – for example, how certain short-term residents brought with them the language preferences of their homes, where they are accustomed to speaking Finnish with their spouses. Further, this study illustrates how a minority language member’s identity might be preserved and

48 Mult ilingual Interac t ion and Dement ia

enacted in the form of self-oriented fragmentary stories, even in later stages of dementia. This study contributes to the ongoing discussion on multilingualism and language policy in Finnish society. Through detailed analyses, it was demonstrated that caregivers, in spite of Swedish being the default language of the nursing home, occasionally used Finnish to deal with challenging caregiving tasks or to reassure and comfort residents. Because almost all of the caregivers in this study were bilingual (Finnish-Swedish), it can be distinguished from previous research in which the caregivers only knew a few words in the first language of the residents (Jansson, 2014; Müller, 2009; Plejert et al., 2014). The caregivers in this study were capable of using either language depending on the language skills and preferences of the residents; more importantly, because the whole community of caregivers shared these language skills, it did not become the task of any particular caregiver to act as a cultural and linguistic broker (cf. Jansson, 2014; Jansson & Wadensjö, this volume). The bilingual practices analyzed in this chapter and the opportunities they create for successful interaction have their basis in the profiling of the nursing home as an officially Swedish-speaking caregiving unit targeted at the Swedish-speaking minority. Because command of Swedish was a necessary criterion for obtaining a professional position at the nursing home, it attracted caregivers with a native or near-native command of Swedish. As members of Finnish society, they were also all fluent in Finnish. Because the professional caregivers were competent in both languages, they were capable of adapting to the residents’ unique patterns of language use. When the residents and caregivers have not just one but two languages in common, they are provided with unique opportunities to achieve intersubjectivity in interaction.

Acknowledgements I would like to thank the following people for their valuable contributions to earlier versions of this chapter: Eleonor Antelius, Sofie Henricson, Florian Hiss, Nicole Müller, Charlotta Plejert, Robert Schrauf, and a group of colleagues at the research seminar in Scandinavian languages in September, 2015. I also cordially thank my research assistants, Martina Ollas and Katri Suominen, for preparing the extracts analyzed in this study. This work was supported by The Academy of Finland (Project No. 256792).

Notes (1) Research permits for the project were sought from the Social Services and Health Care division in the municipality where the data were collected. The central ethical issues in the project involved the informed consent and anonymity of the research subjects and their family members. Written consent to participate in the study was sought

Ageing as a Swedish-speak ing Finn

(2) (3) (4) (5) (6) (7) (8)

49

from participants (professional caregivers, persons with dementia and their family members) in audio- and video-recordings. Personal and identifiable items were changed in the transcripts, and participation in the project was, of course, voluntary. The transcripts follow general conventions for CA transcriptions (see Ochs et al., 1996: 461–465). A key for the transcription conventions is provided in the Appendix. Georgina appears to be referring to the country of Syria, even though she uses the plural form ‘the Syrians’. Hufvudstadsbladet is the foremost Swedish-language newspaper in Finland. A nickname for the Swedish-language newspaper Hufvudstadsbladet. The string ‘let’s go to sleep yes’ is produced in Finnish in the original monologue, while the monologue is otherwise in Swedish. The first three units of the turns are produced in Finnish. The fourth and fifth units of the turn are uttered in Swedish.

References Aijmer, K. (1996) Swedish modal particles in a contrastive perspective. Language Sciences 18, 393–427. Antelius, E. (2009) Different Voices – Different Stories. Communication, Identity and Meaning Among People with Acquired Brain Damage. Linköping: University of Linköping. Auer, P. (1984) Bilingual Conversation. Amsterdam: John Benjamins. Baddeley, A., Baddeley, H., Bucks, R. and Wilcock, G. (2001) Attentional control in Alzheimer’s disease. Brain 124, 1492–1508. Cekaite, A. (2015) The coordination of talk and touch in adults’ directives to children: Touch and social control. Research on Language and Social Interaction 48, 162–175. Drew, P. (1997) ‘Open’ class repair initiators in response to sequential sources of trouble in conversation. Journal of Pragmatics 28, 69–101. Finlex (Translation of Finnish Acts and Decrees) (2003) The Language Act 6.6.2003/423. See http://www.finlex.fi/sv/laki/ajantasa/2003/20030423. Gafaranga, J. (2001) Linguistic identities in talk-in-interaction: Order in bilingual conversation. Journal of Pragmatics 33, 1901–1925. Gafaranga, J. (2005) Demythologizing language alternation studies: Conversational structure versus social structure in bilingual interaction. Journal of Pragmatics 37, 281–300. Guendouzi, J. and Müller, N. (2006) Approaches to Discourse in Dementia. Mahwah, NJ/ London: Lawrence Erlbaum. Hospital District of Helsinki and Uusimaa (2004) Vård på modersmålet inom Helsingfors och Nylands sjukvårdsdistrikt. Sammandrag av HNS utvecklingsprojekt ‘Vähemmistökielisten palvelujen kehittäminen’. [Care in the native language in the hospital district of Helsinki and Uusimaa.] Report. Hult, F.M. and Pietikäinen, S. (2014) Shaping discourses of multilingualism through a language ideological debate. The case of Swedish in Finland. Journal of Language and Politics 13, 1–20. Hyltenstam, K. and Stroud, C. (1993) Second language regression in Alzheimer’s dementia. In K. Hyltenstam and Å. Vibver (eds) Progression and Regression in Language: Sociocultural, Neuropsychological and Linguistic Perspectives (pp. 222–242). Cambridge: Cambridge University Press. Hyltenstam, K. and Stroud, C. (1989) Bilingualism in Alzheimer’s dementia: Two case studies. In K. Hyltenstam and K.L. Obler (eds) Bilingualism across the Lifespan. Aspects of Acquisition, Maturity and Loss (pp. 202–226). Cambridge: Cambridge University Press. Jansson, G. (2014) Bridging language barriers in multilingual care encounters. Multilingua 33, 201–232.

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Jones, D. (2015) A family living with Alzheimer’s disease: The communicative challenges. Dementia 14, 555–573. Liebkind, K., Jasinskaja-Lahti, I. and Teräsaho, M. (2007) Ingroup vitality and intergroup attitudes in a linguistic minority. Scandinavian Journal of Psychology 48, 409–418. Lindholm, C. (2008) Laughter, communication problems and dementia. Communication & Medicine 5, 3–14. Lindholm, C. (2013) Challenges and opportunities of group conversations: The day-care center as a communication milieu. In B.H. Davis and J. Guendouzi (eds) Pragmatics in Dementia Discourse (pp. 205–238). Newcastle upon Tyne: Cambridge Scholars Publishing. Lindholm, C. (2015) Parallel realities: The interactional management of confabulation in dementia care encounters. Research on Language and Social Interaction 48, 176–199. Mikesell, L. (2009) Conversational practices of a frontotemporal dementia patient and his interlocutors. Research on Language and Social Interaction 42, 135–162. Mikesell, L. (2010) Repetitional responses in frontotemporal dementia discourse: Asserting agency or demonstrating confusion? Discourse Studies 12, 465–500. Moghaddam, F. and Harré, R. (2010) Words, conflicts and political processes. In F. Moghaddam and R. Harré (eds) Words of Conflict, Words of War: How the Language We Use in Political Processes Sparks Fighting. Santa Barbara, CA: Praeger. Müller, N. (2009) Aging with French: Observations from South Louisiana. Journal of Cross-Cultural Gerontology 24, 143–155. Nevile, M. and Wagner, J. (2011) Language choice and participation: Two practices for switching languages in institutional interaction. In G. Pallotti and J. Wagner (eds) L2 Learning as Social Practice: Conversation-analytic Perspectives (pp. 213–238). Mãnoa, HI: National Foreign Language Research Center, University of Hawai’i at Mãnoa. Ochs, E., Schegloff, E.A. and Thompson, S. (eds) (1996) Interaction and Grammar. Cambridge: Cambridge University Press. Örulv, L. (2008) Fragile Identities, Patched-up Worlds: Dementia and Meaning-making in Social Interaction. Linköping: Linköping University. Østern, A.L. (1997) Swedish: The Swedish Language in Education in Finland. Leeuwarten: Mercator Education. See http://files.eric.ed.gov/fulltext/ED452719.pdf. Østern, A.L. (2004) My language tree: Young Finland-Swedish adults tell us about their linguistic and cultural identities. Journal of Curriculum Studies 36, 657–672. Östman, J.O. and Mattfolk, L. (2011) Ideologies of standardization: Finland Swedish and Swedish-language Finland. In T. Kristiansen and N. Coupland (eds) Standard Languages and Language Standards in a Changing Europe (pp. 75–82). Oslo: Novus förlag. Perkins, L., Whitworth, A. and Lesser, R. (1998) Conversing in dementia: A conversation analytic approach. Journal of Neurolinguistics 11, 33–53. Plejert, C., Jansson, G. and Yazdanpanah, M. (2014) Response practices in multilingual interaction with an older Persian woman in a Swedish residential home. Journal of Cross-Cultural Gerontology 29, 1–23. Ranne, K., Rautakorpi, L. and Sainio, T. (2008) ‘Jag är här för dig’: Selkokielinen suomi-ruotsi sanasto hoitotyöhön [A Plain-Language Finnish–Swedish Glossary for Health Care Professionals]. Helsinki: Diakonia-ammattikorkeakoulu, Diak Etelä. Ringbom, H. (2001) Developing literacy can and should be fun: But only sometimes is. In D. Belcher and U. Connor (eds) Reflections on Multiliterate Lives (pp. 60–66). Clevedon: Multilingual Matters. Sabat, S.R. (2001) The Experience of Alzheimer’s Disease: Life Through a Tangled Veil. Oxford: Blackwell. Sabat, S.R. (2008) Positioning and conflict involving a person with dementia: A case study. In F.M. Moghaddam, R. Harré and N. Lee (eds) Global Conflict Resolution Through Positioning Analysis (pp. 81–93). New York: Springer.

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Samuelsson, C. and Hydén, L.C. (2011) Intonational patterns of nonverbal vocalizations in people with dementia. American Journal of Alzheimer’s and Other Dementias 26, 563–572. Sjöholm, K. (2004) Swedish, Finnish, English? Finland’s Swedes in a changing world. Journal of Curriculum Studies 36, 637–644. Statistics Finland (2015) See http://tilastokeskus.fi/meta/luokitukset/kielisuhde/001– 2015/index.html Swedish Assembly of Finland (2010) Swedish in Finland. Helsinki: Swedish Assembly of Finland. See http://www.folktinget.fi/en/swedish_in_finland/. Teleman, U., Hellberg, S. and Andersson E. (1999) Svenska Akademins grammatik [The Swedish Academy Grammar] (Vol. 4). Stockholm: Svenska Akademien. Van Langenhove, L. and Harré, R. (1999) Introducing positioning theory. In R. Harre and L. Van Langenhove (eds) Positioning Theory: Moral Contexts of International Action (pp. 14–31). Oxford: Blackwell. Wei, L. (ed.) (2005) Special issue on conversational code-switching. Journal of Pragmatics 37. Wolf-Knuts, U. (2013) Coping mechanisms among the Finland-Swedes. Folklore 124 (1), 15–27.

Appendix: Transcription Symbols (cf. Ochs et al., 1996: 461–465.) , ?, en : [ ] (0.5) >
Lisa: very aware of that, .

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NM: the beginning. Lisa: And in fairness to them, it’s very rare that you get anyone question that. I’ve never had anyone question that ((NM: mhm)) because it’s accepted that it would be because we’re in [place]. In this extract from her interview, Lisa comments on a difference in language use, between organized activities, that is, group events, and oneto-one situations. While the former are conducted bilingually, her individual interactions with Irish speakers are in Irish. Running activities bilingually is a tool to avoid exclusion of non-Irish speakers, but it also affirms the Irishspeaking identity of the nursing home. Lisa neatly summarizes the pattern observed during the bingo afternoon (Example 3.4), making reference to utterances repeated in both languages when the whole group is addressed, but switching languages as required when addressing individuals. This pattern of switching thus serves to create group cohesion in organized events (nobody is left out) but, in Lisa’s estimation (‘I think’), it also downplays the significance of language choice: because nobody is left out, language choice is backgrounded (‘people don’t seem to take much notice’), and the English speakers ‘accept’ the use of Irish. Bilingual accommodation of the English speakers thus also accommodates the public Irish-speaking identity of the nursing home as part of the local community, of which potential future residents and their families are made aware. Lisa emphatically (by repeating) points out that potential residents are told about the nursing home’s language policy, which is accepted because of the nursing home’s local setting, in a traditionally Irish-speaking part of the country. As discussed earlier in this chapter, the nursing home presents itself publicly as an Irish-speaking environment: publicly available information (website, statement of purpose) proclaims Irish to be ‘the language of our house’, but monolingual English speakers have to be accommodated. This accommodation takes the shape of deliberate yet fluid bilingualism: organized events that include a significant amount of one-to-many talk, with a staff member or volunteer leading an activity, include language switching and repetition as a feature of their design and delivery, whereas one-to-one talk, both within such activities and in other contexts, uses either language. In practice, this means that in all common areas (the dining room, for example, or common rooms) both languages are present virtually all the time. In effect, the public stance together with enacted language practices give Irish the status of the majority language, and of an expected feature of life at the nursing home.

Theresa the Language Expert The label ‘language expert’ serves as a summary of several patterns of behaviour that I observed in interactions with Theresa. As mentioned

64 Mult ilingual Interac t ion and Dement ia

already, she was approximately 90 years old at the time of observation, and showed behaviours that were consistent with memory difficulties characteristic of a moderate dementia. She also showed behaviours that clearly demonstrated that she was a curious individual who actively explored her environment, was seeking to learn, and adopted and communicated an interpersonal, evaluative stance relative to events around her, specifically relative to language use. She used the communicative tools at her disposal, including her two languages, to good effect in the pursuit of these interactional goals. Example 3.6 illustrates several of these behaviours, and the following subsections discuss, in turn, Theresa as a curious individual, her use of language switching to advance a conversation and to achieve mutual understanding, and her taking and expressing an evaluating stance.

Example 3.6: Extract from field note (first encounter with Theresa, FN10–30–01) Lisa introduces me to Theresa in Irish: ‘Seo Nicole. Tá sí ag iarraidh caint leat, más maith leat.’ [This is Nicole. She wants to talk to you, if you like]. I sit down, half-facing Theresa, and as Lisa turns away, she asks, ‘cá bhfuil tú ag dul?’ [where are you going?]. Lisa turns back and answers, ‘tá mé ag dul le h-aghaidh cupán tae ach beidh mé ar ais díreach tár éis sin’ [I’m going for a cup of tea, but I’ll be back straight after that.] Theresa turns back to me and looks at me very closely for a few seconds, and asks, ‘fear nó bean?’ [a man or a woman?]. I don’t answer straightaway, and she repeats in English, ‘a man or a woman?’ (this is ironic: When I first saw her, from a distance, I thought she was a man of very slight build). I have to laugh, and she grins when I say, ‘Oh, is bean mé, ceart go leor. Mise Nicole’ (oh, I’m a woman alright. I’m Nicole). My name causes some problems, she repeats it several times, it appears that she really wants to get it right. She smiles at me as she says it. There are Halloween decorations on walls and windows in the nursing home, and a sign on a window directly in front of us reads ‘Happy Halloween’. She reads the sign out several times.

Curiosity Theresa clearly shows interest in her environment and pursues this interest interactively: she asks questions about new people she meets (as in Example 3.6, ‘a man or a woman?’), and wants to know what people do (as in her asking Lisa, in Example 3.6, where she is going). By her choice of question about me, she also shows that she is actively trying to integrate information which may very well have been of a contradictory nature: at the time of that particular meeting, my hair was very short, I was wearing jeans and a unisex-style polo shirt and sweater, and walking shoes. On the other hand, Lisa introduced me as a woman (tá sí ag iarraidh caint leat – she wants to talk

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to you). Theresa zeroes in on the salient information, and enquires into it. She showed curiosity about her surroundings, wanting to know what was going on, and what people were doing and what they had with them, on many occasions, as is also illustrated in Example 3.7 (which is also an instance of goal-directed codeswitching, to be discussed in the next section). Example 3.7 describes a further meeting with Theresa, about an hour after the events of Example 3.6.

Example 3.7: Extract from field note (what’s in the bag, FN10–30–2) Two staff members bring Theresa to the TV lounge. An English-language soap is playing, but the sound is very low. They help her sit down facing the TV, which is about 2 metres away. I follow them into the room. Theresa looks at the TV; the subtitles aren’t working properly, but read ‘we apologize for the absence of subtitles.’ Theresa reads this out several times, in a quiet voice that sounds puzzled to me. After I sit down, to her right, I put my red backpack down by my chair. She says something of which I only catch, ‘your bag’. I look up at her and she says, ‘céard tá sa mála sin agat?’ [what do you have in that bag?]. I pull it open and show her. ‘Mo chóta, mo chóta báistigh [my coat, my rain coat].’ ‘Do chuid éadaí [your clothes]’ she doesn’t quite interrupt, ‘cuir air ais iad mar sin [put them back then].’ As I have discussed elsewhere (Müller & Mok, 2014), linguistic manifestations of curiosity are not a trivial thing in the context of dementia. They show that an individual engages with their environment, realizes that there are things to find out, and evidences the problem-solving skills to satisfy that curiosity and the will to find out by tapping into the information sources at hand. In other words, these behaviours are clear indications of intact sensemaking skills in the moment of interaction, and of the wish to make sense. The wish to make sense may also underlie another pattern I observed with Theresa, namely her reading out loud certain instances of writing she encountered. Examples are the ‘Happy Halloween’ sign on the window pane (Example 3.6), or the malfunctioning subtitles (Example 3.7; I never heard her read properly functioning subtitles aloud) or, on another occasion, the banner of a newspaper she encountered lying upside down on a side table (the Irish Daily Mail). Reading these things out loud may be another indication that she was trying to query information that is in some way incongruous or unfamiliar.

Language switching to achieve interactional goals Examples 3.6 and 3.7 illustrate a further behaviour pattern, namely the use of language switching to achieve interactional goals and mutual understanding. In Example 3.6, Lisa initiates the interaction in Irish, and Theresa

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continues in the same language, but switches to English when she doesn’t get a response from me straightaway. In contrast, the situation in Example 3.7 plays out against an English-language backdrop: the TV is playing an English-language programme and Theresa reads out the English subtitle. This time she initiates an exchange in English, but when yet again she doesn’t get the required response quickly enough she switches into Irish and repeats her question. Her follow-up comment in Irish, showing that she has the information she needs, and that the exchange is closed (‘do chuid éadaí, cuir ar ais iad mar sin’ [your clothes, put them back, then]) may constitute an acknowledgement, albeit most probably not a conscious one, that Irish was more successful as an interactional tool in this particular exchange. In a lifelong bilingual such as Theresa (or if not lifelong, then for most of the nine decades of her life), the use of language switching as a tool to achieve conversational repair is not surprising in and of itself. However, strategic switching of languages, as in these examples, again would appear to not be trivial in the context of dementia. Like every competent language user, Theresa is making meaning by making choices (albeit below the level of conscious, deliberate decision making), and these choices are appropriate, as measured by achievement of communication success, in the context of interaction. In other words, Theresa is demonstrating that she is acting as a semiotic person (Eggins, 2004; Sabat, 2005) with regard to how she manages interactions. Choice between options in a semiotic system or, as in the case of the languages of a bilingual, between a ‘system of systems’, could in theory be a matter of chance and accident: if a bilingual wants to use language, she has to use one or indeed both of her languages. However, the circumstance that language switching happens at points where there is a potential for communication breakdown (‘trouble spots’), would appear to indicate that Theresa monitors the conversation as it unfolds and acts accordingly. I also observed Theresa translate on behalf of others in order to resolve lack of understanding, as illustrated in Example 3.8.

Example 3.8: Extract from field note (She wants to leave, FN 11–25–2) (Setting: common room, during knitting afternoon) Theresa and Orla are sitting next to each other. They don’t take part in the knitting. Orla is reading a newspaper. I am sitting across the room from them, with a good view of what they are doing. Elise (a staff member) is making the rounds with cups of juice and water. Orla looks up from her newspaper and watches Elise approach. When she is standing in front of her and Theresa, Orla says, ‘tá mé ag iarraidh imeacht’ [I want to leave]. Elise looks at Orla, but doesn’t reply. Orla repeats, ‘tá mé ag iarraidh imeacht’. Theresa follows up immediately, and says, looking at Elise, ‘she wants to leave.’ Elise nods, and says ‘I’ll get one of the girls to help you.’

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Elise is one of the few staff members in the nursing home who does not understand Irish. Orla attempts to repair Elise’s lack of understanding through a verbatim repetition. Theresa problem-solves by inserting her contribution into the exchange between Elise and Orla before (as far as I could observe) Elise gave any further indication that she didn’t understand. She thus takes charge of an exchange which does not directly concern her. Not only does she demonstrate that she is, again, monitoring an unfolding interaction and is aware of communication difficulties, but she is also demonstrating the willingness, and skill, to achieve repair on behalf of somebody else. This involves not only an act of translation, but also of talking for someone else and therefore adopting their perspective or stance. Whether Theresa at the time was aware that Elise is not an Irish speaker is doubtful (although it is possible), given Theresa’s very evident episodic memory difficulties. She may have recognized that Elise’s failure to respond violated smooth turn-taking patterns and indicated a lack of understanding. Using language switching as repair is evidently a well-established strategy for Theresa.

It’s got to be right: Correcting and evaluating On multiple occasions that I observed, Theresa made meta-linguistic evaluations of others’ utterances and language in terms of correctness or appropriateness (see Example 3.9). The observed exchange took place on the same occasion as that in Example 3.8.

Example 3.9: Extract from field note (‘Beirt!’ FN 11–25–3) (Orla is reading her newspaper, and making occasional comments, and talking with Theresa, who is sitting next to her). Orla looks at a page of her newspaper; I can’t see what it is from where I’m sitting. She says, ‘dhá chailín’ [two girls]. Theresa looks at her and says, loudly and emphatically, ‘beirt’ [two], and repeats, equally loudly, ‘beirt.’ She keeps looking at Orla, who however doesn’t show any reaction to the correction, but keeps looking at her newspaper. Theresa’s utterance concerns the choice of quantifier. In traditional Irish there are two categories of quantifiers, one of which is used for counting people: ‘dhá’ is typically used for inanimate objects and animals (dhá asal, dhá theach [two donkeys, two houses]), whereas ‘beirt’ is used to count people (‘beirt’ by itself means ‘two persons’, ‘beirt chailíní’, ‘two girls’). I have not been able to ascertain whether Orla’s use of ‘dhá’ with ‘girl’ represents local colloquial usage, but evidently Theresa was of the opinion that it constituted a grammatical lapse that warranted correction. Note that what is at issue here is not communication breakdown, since ‘dhá chailín’ is perfectly comprehensible, but rather she is evaluating appropriateness in

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language use. Theresa here adopts the stance of language expert, an authority on usage, and while this stance is not explicitly discursively confirmed by any of those present, since nobody commented on her correction of Orla’s utterance, it was not challenged either. On another occasion, when I explained to her that I was learning Irish, she looked at me for a few seconds in silence, then demanded, ‘abair arís?’ [say it again]. I repeated, ‘tá mé ag foghlaim Gaeilge.’ [I’m learning Irish.]. Again she looked at me for a few seconds, and then commented, ‘tá sí agat, oh, tá sí agat’ [you have it, oh, you have it] (in Irish, being able to speak a language is expressed as ‘having’ it). Again, she adopted the role of an authority on language and language use, which again was not challenged, and therefore implicitly accepted. Example 3.10 illustrates a nonverbal negative assessment of incorrect language use, this time of singing during a music session. These sessions are regular events, where residents and volunteers come together to sing, with a repertoire ranging from traditional Irish-language songs to Irving Berlin, Bing Crosby, Elvis Presley and beyond. In this example, Theresa once again demonstrates superior knowledge: She shows that she knows that Rita and I made a mistake.

Example 3.10: Extract from field note (fluffing the last line; FN 14–25–01) Rita and I are standing next to each other in the background, Theresa is sitting in her wheelchair, in front of us, facing into the room. Everyone is singing ‘Beidh aonach amáireach i gContae an Chláir’. This is a lively, fast-paced song, and the lyrics are tricky for me, especially the final verse. Rita and I both ‘fluff’ the last line; we look at each other and grin. Theresa turns around to face us. She raises her eyebrows and shakes her head slightly, lips turned up just a little on one side of her mouth – a mocking look, it appears. Theresa used to work, as mentioned above, as a teacher. Her tendency to comment on others’ language use and to correct lapses in grammar and usage is quite likely to have its roots in a teacher-identity, in old-established routines of behaviour, thinking and valuing. In fact it is fair to say that Theresa, when she adopts the role of language authority, is a teacher. On no occasion did I observe anyone challenge her authority on language use, and her functional language switching always led to a resolution of communication difficulty. In other words, the people around her accepted her role as an expert and as someone who had something to teach. In her interview, Lisa comments on the circumstance that Theresa, in common with other residents who speak the local Irish as a first language, is very aware of the difference between the local, native variety of Irish and ‘book Irish’ (‘they make allowances for people that have what they would term book Irish’, Lines 361–362; ‘They will spot straightaway someone who speaks the language fluently and someone who

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speaks it very well but yet it’s not the Irish that they would know’, Lines 365–366), and that on occasion, when Theresa has corrected her grammar, Lisa will explicitly acknowledge her expertise (‘… and I know when she has corrected me, I have said straight up, you know, “tá an ceart a’at” [you’re right], you know, uhm, and I have apologized’, Lines 432–434).

Discussion and Outlook: Cognitive and Social Implications In presenting the results of my observations and interactions, I have labelled the nursing home a ‘deliberately bilingual’ environment, in which Irish is flagged up as ‘the language of our house’. This construes the language as part of the local identity of the institution, its residents and staff. The majority of residents, but not all, are Irish speakers, and most, but not all, of the staff members also speak the language; both English and Irish are in constant use. In an environment where two languages are shared by most, but not all interlocutors, an easy solution would be to default to English, the majority language, in group encounters, since the Irish-speaking residents in the nursing home are bilingual. However, this is avoided, and instead a duallanguage strategy has emerged that involves ample use of language switching by both staff members and residents. Some of the residents, such as Theresa, showed behavioural signs that were consistent with dementia. However, Theresa, as well as others, showed themselves to be skilful and strategic bilingual communicators. The linguistic and cognitive abilities in people with dementia, whether they speak one language or several, are in the clinical literature typically conceptualized as a bundle of splinter skills2 that are measured by means of decontextualized tests or deficit-oriented clinical interviews (Müller & Schrauf, 2014). The ways in which a bilingual uses her two languages to interact and to successfully project an identity gives a window into the contextualized use of cognitive skills that is arguably more ecologically valid, but admittedly difficult to compare to standards of ‘normal’ or ‘unimpaired’ individuals, since interaction is by its very nature socially and contextually distributed. As discussed above, Theresa demonstrates that she is curious, that she uses her languages strategically to enquire into her environment, including the people she meets, and to manage interactions, for instance to achieve conversational repair. Further, she takes evaluative stances and expresses judgements about language use. In terms of cognitive splinter skills, Theresa’s ability to use language switching for conversational troubles resolution demonstrates, at a minimum, sufficient verbal working memory to monitor the conversation, and executive function to achieve self-repair by switching languages. In addition, switching languages in order to translate and thereby resolve communication

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breakdown on behalf of someone else requires the processing and integration of information from multiple sources (auditory-linguistic: the spoken utterances; visual: the physical constellation of the participants, and what is happening; facial expressions), making a judgement about the lack of success of the interaction, and coming up with a solution. This again challenges working memory, language, executive function, as well as complex attention (the interaction described in Example 3.8 took place in an environment where several conversations were happening simultaneously). Theresa’s evaluative meta-comments also speak to integrated, contextualized cognitive skills. In order to correct someone else’s language use, one needs to keep the utterance that is triggering the judgement active in working memory, compare it to a remembered standard of correctness, retrieve the relevant linguistic information that would fulfil the perceived standard, and form and produce the utterance that achieves the correction. It is of course impossible to isolate the relative contribution of different cognitive splinter skills in an integrated, contextualized act of cognition (and such an attempt would be quite pointless). Rather, the skills demonstrated by Theresa, and others, reinforce the need to evaluate the cognitive and communicative abilities of people with dementia in their context of use, and to reconceptualize cognition as something that people do and, crucially, do together, rather than as a somehow independent, individual apparatus. There is a growing body of work in this area from social-interactive perspectives, but thus far very little in the clinical sciences (see, for example, Dahlbäck et al., 2013; Hydén & Kristiansson, 2017; Müller & Mok, 2014). It is also arguable that Theresa’s integrated, contextualized communicative and cognitive skills have a greater impact on her day-to-day quality of life than those skills that traditional dementia ‘staging’ focuses on, that is, the unaided processing and recall of decontextualized information. My argument here rests on the observation that these skills allow her to actively participate in a supportive environment, to contribute to and manage interactions according to her own choosing and to demonstrate expertise that others do not possess, but which others acknowledge. Most of the residents in the nursing home where I conducted my study are long-time bilinguals who, like Theresa, became fluent in their second language, English, during their childhood and youth. The nursing home is, as discussed earlier, a deliberately bilingual, Irish-speaking environment, and the use of Irish is portrayed as being part of the local identity and connectedness of the home (see Example 3.5). In the same interview, Lisa also spoke of the use of the local variety of Irish as permitting a degree of emotional connection that would not be possible through the medium of English. In a minority language situation characterized by intergenerational language shift, and a healthcare environment where, owing to lack of Irish speakers among health professionals, a patient may be mis-labelled as ‘noncommunicative’, or as having ‘communication problems’, the importance of

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providing an Irish-speaking environment for Irish-dominant speakers cannot be overstated. Likewise, the role of language as providing an emotional and cultural connection is highly significant, and no doubt contributes to a sense of belonging, as well as reducing a potential sense of alienation and social isolation that can attend the move to a nursing home (Ekman, 1996; Ekman et al., 1993; Müller, 2009). However, it can be argued that the creation of an actively and positively bilingual environment provides benefits that go further than that. A bilingual environment would appear to provide a source of constant cognitive stimulation to long-term bilinguals such as Theresa, and other residents. It encourages communicators to make full use of their linguistic and communicative repertoires. Strategies such as functional language switching can only arise in an environment where they are productive and encouraged by success. I believe that the foregrounding of Irish in daily interactions is also significant in that it provides an acknowledgement of older generations, as represented by the residents, as authorities on that language, since they represent a generation of traditional Irish speakers against a backdrop of ongoing language shift in the wider society. Whether residents such as Theresa, who have significant memory problems consistent with dementia, remain aware of this ongoing language shift outside the nursing home, is doubtful. However, her use of language switching does demonstrate that she is capable of drawing strategically on her skills, and her displays of expertise show that she values language, and this in turn is validated by an environment which gives scope to her expertise. The fact that Irish has, in effect, the role of the majority language in the nursing home, in the larger context of a minority language situation, provides further validation of the cultural and linguistic knowledge, and therefore identities, of Irish-speaking residents. The fact that language is never construed as a problem is significant. Communication breakdowns owing to lack of Irish on the part of staff or visitors do occur, but they are resolved collaboratively, again drawing on the expertise of residents (see Example 3.8). Thus their expertise is positively challenged; by taking on the role of mediator, they are able to take charge of interactions, and take responsibility for communication success. Thus the productive use of cognitive-communicative skills, in the moment of interaction, leads to the affirmation of a person with (or without) dementia as a responsible, independent and contributing agent in a supportive social environment that values and acknowledges their skills.

Acknowledgements This study was supported by a grant from the Fulbright Scholar Program. The author’s sincerest thanks go to everybody at the nursing home; mo mhíle buíochas, go raibh maith ag ‘chuile dhuine!

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Notes (1) While there is legislation (the Official Languages Act, 2003) that is intended to promote the use of Irish for official and institutional purposes, private institutions are not bound by its provisions. There is therefore no legal requirement for a private nursing home to implement a bilingual policy (see Walsh, 2012). (2) I use the term ‘splinter skills’ here as a shorthand for cognitive and linguistic skills that, in the clinical and cognitive sciences, are typically considered to be capable of being separated conceptually and for the purposes of measurement and testing, and to a greater or lesser extent dissociable (see Müller & Schrauf, 2014, for further discussion).

References Agar, M.H. (1996) The Professional Stranger (2nd edn). San Diego, CA: Academic Press. American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders: DSM-5™ (5th edn). Arlington, VA: American Psychiatric Publishing. Bayles, K.A. and Tomoeda, C.K. (2013) Cognitive-communication Disorders of Dementia: Definition, Diagnosis and Treatment (2nd edn). San Diego, CA: Plural. Dahlbäck, N., Kristiansson, M. and Stjernberg, F. (2013) Distributed remembering through active structuring of activities and environments. Review of Philosophy and Psychology 4 (1), 153–165. Eggins, S. (2004) An Introduction to Systemic Functional Linguistics. London: Continuum. Ekman, S.-L. (1996) Monolingual and bilingual communication between patients with dementia diseases and their caregivers. International Psychogeriatrics 8 (Suppl. 1), 127–132. Ekman, S.-L., Robins Wahlin, T.-B., Norberg, A. and Winblad, B. (1993) Relationship between bilingual demented immigrants and bilingual/monolingual caregivers. International Journal of Aging & Human Development 37 (1), 37–54. Fishman, J.A. (1989) Language and Ethnicity in Minority Linguistic Perspective. Clevedon: Multilingual Matters. Fishman, J.A. (1991) Reversing Language Shift. Clevedon: Multilingual Matters. Friedland, D. and Miller, N. (1999) Language mixing in bilingual speakers with Alzheimer’s dementia: A conversation analysis approach. Aphasiology 13 (4–5), 427–444. Golander, H. and Raz, A.E. (1996) The mask of dementia: Images of ‘demented residents’ in a nursing ward. Ageing and Society 16, 269–285. Hammersley, M. and Atkinson, P. (2007) Ethnography: Principles in Practice (3rd edn). New York: Routledge. Hindley, R. (1990) The Death of the Irish Language: A Qualified Obituary. London: Routledge. Hydén, L.-C. and Kristiansson, M. (2017) Collaborative remembering in dementia. In M. Meade, A.J. Barnier, P. Van Bergen, C.B. Harris and J. Sutton (eds) Collaborative Remembering: How Remembering with Others Influences Memory. Oxford: Oxford University Press. Hyltenstam, K. (1995) The code switching behaviour of adults with language disorders – with special reference to aphasia and dementia. In L. Milroy and P. Muysken (eds) One Speaker, Two Languages: Cross-disciplinary Perspectives on Code-switching (pp. 302– 343). Cambridge: Cambridge University Press. Hyltenstam, K. and Stroud, C. (1989) Bilingualism in Alzheimer’s dementia: Two case studies. In K. Hyltenstam and L. Obler (eds) Bilingualism Across the Lifespan: Aspects of Acquisition, Maturity and Loss (pp. 202–226). Cambridge: Cambridge University Press. Hyltenstam, K. and Stroud, C. (1993) Second language regression in Alzheimer’s dementia. In K. Hyltenstam and Å. Viberg (eds) Progression and Regression in Language (pp. 224–242). Cambridge: Cambridge University Press.

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Jansson, G. (2014) Bridging language barriers in multilingual care encounters. Multilingua 33 (1), 203–244. Lenoach, C. (2012) An Ghaeilge iarthraidisiúnta agus a dioscúrsa. In C. Lenoach, C.Ó Giollagáin and B. Ó Curnáin (eds) An chonair chaoch: an mionteangachas sa dátheangachas (pp. 19–109). Gaillimh: Leabhar Breac. Müller, N. (2009) Aging with French: Observations from South Louisiana. Journal of Cross-Cultural Gerontology 24 (2), 143–155. Müller, N. and Mok, Z. (2014) ‘Getting to know you’: situated and distributed cognitive effort in conversations with dementia. In R.W. Schrauf and N. Müller (eds) Dialogue and Dementia: Cognitive and Communicative Resources for Engagement. New York: Psychology Press. Müller, N. and Schrauf, R.W. (2014) Conversation as cognition: Reframing cognition in dementia. In R.W. Schrauf and N. Müller (eds) Dialogue and Dementia: Cognitive and Communicative Resources for Engagement (pp. 3–26). New York: Psychology Press. Nelson, R.L., Abendroth, K. and Lynch, K. (2014) Ethnography. In M.J. Ball, N. Müller and R.L. Nelson (eds) Handbook of Qualitative Research in Communication Disorders (pp. 39–54). New York: Psychology Press. Nielsen, T.R., Vogel, A., Riepe, M.W. et al. (2011) Assessment of dementia in ethnic minority patients in Europe: A European Alzheimer’s disease consortium survey. International Psychogeriatrics 23 (1), 86–95. Ó Baoill, D.P. (2010) Irish. In M.J. Ball and N. Müller (eds) The Celtic Languages (2nd edn) (pp. 163–229). Abingdon: Routledge. Ó Giollagáin, C. and Mac Donnacha, S. (2008) The Gaeltacht today. In C. Nic Pháidín and S. Ó Cearnaigh (eds) A New View of the Irish Language (pp. 108–120). Dublin: Cois Life. Ó Giollagáin, C., Mac Donnacha, S., Ní Chualáin, F., Ní Sheaghdha, A. and O’Brien, M. (2007) Staidéar cuimsitheach teangeolaíoch ar úsáid na Gaeilge sa Ghaeltacht: Príomhthatal agus moltaí. Dublin: Oifig a tSoláthair. Ó hIfernáin, T. (2010) Irish-speaking society and the state. In M.J. Ball and N. Müller (eds) The Celtic Languages (2nd edn) (pp. 539–586). Abingdon: Routledge. Ó Riagáin, P. (1997) Language Policy and Social Reproduction: Ireland 1893–1993. Oxford: Clarendon Press. Plejert, C., Antelius, E., Yazdanpanah, M. and Nielsen, T.R. (2015) ‘There’s a letter called ef’: On challenges and repair in interpreter-mediated tests of cognitive functioning in dementia evaluations: A case study. Journal of Cross-Cultural Gerontology 30, 163–187. Sabat, S.R. (2005) Capacity for decision-making in Alzheimer’s disease: Selfhood, positioning and semiotic people. Australian & New Zealand Journal of Psychiatry 39 (11–12), 1030–1035. Spradley, J.P. (1979) The Ethnographic Interview. New York: Holt, Rhinehart & Winston. Spradley, J.P. (1980) Participant Observation. New York: Holt, Rhinehart & Winston. Stilwell, B.L., Dow, R.M., Lamers, C. and Woods, R.T. (2015) Language changes in bilingual individuals with Alzheimer’s disease. International Journal of Language & Communication Disorders 51, 113–127. Walsh, J. (2012) Language policy and language governance: A case-study of Irish language legislation. Language Policy 11 (4), 323–341.

4

Epistemic Negotiations in Interpreter-mediated Dementia Evaluations: The Cooperative Role of Patients’ Relatives Ali Reza Majlesi, Eleonor Antelius and Charlotta Plejert

Introduction In this chapter we present a case study based on data from parts of an interpreter-mediated dementia evaluation which is taking place in the home of a patient, with the co-presence of a clinician and an interpreter, together with the patient’s relative (her granddaughter) and the relative’s boyfriend. A basic dementia evaluation comprises different parts, e.g. history-taking (medical interview), physical and psychiatric examinations, and ancillary investigations, blood tests, brain scans, lumbar punctures and tests of cognitive functioning. Tests of cognitive functioning and neuropsychological tests are necessary to determine the onset of dementia, the functional capacity of the individuals, the rate of functioning decline, and also response to therapies, etc. (see American Psychological Association, 2012). Whereas some parts of the evaluation may involve patients’ companions (e.g. relatives, who might add information concerning the patient’s medical history), tests of cognitive functioning are commonly performed on a one-on-one basis between clinician and patient. In cases where a patient speaks a different language from the clinician, memory clinics in Sweden routinely appoint professional interpreters to mediate the evaluation. If it is not possible to get access to a professional 74

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interpreter in the required language, interpreting is sometimes done by a relative or companion, although this is generally not recommended, or favoured in clinical settings. In the presented case, the professional interpreter and the patient’s relative are co-present during history taking as well as cognitive testing. By using a conversation analytical (CA) approach for investigating talk-in-interaction (Sacks, 1992; Schegloff, 2007), we focus on participants’ exchanges of knowledge in terms of ‘epistemic negotiations’, namely, who has knowledge of and access to information about a current state of affairs, and who therefore may also have the authority to evaluate it (cf. Heritage & Raymond, 2005). Particular attention is paid to contributions to talk made by the patient’s granddaughter. Of specific interest are sequences where the granddaughter expands the mediated talk by negotiating and modifying information in the exchange between the patient, interpreter and clinician, through which she contributes to the accomplishment of the ongoing clinical procedure in a collaborative and coordinating manner. There are several studies that emphasize the role of the patient’s relative/ companion in medical encounters (for dementia, cf. Dooley et al., 2015), especially when they engage as an informal, ‘ad hoc’ interpreter, or as an ‘informant’ or ‘patient’s advocate’ (Hsieh, 2006; Kaufert, 1999). Many of the existing studies show how this kind of engagement may be supportive (e.g. Aminzadeh et al., 2007), but they also specifically warn about the potentially negative impact of the presence and interposition of relatives on the clinical procedures (Kaufert, 1999; Spencer-Oatey & Jing, 2007). In contrast to the above-mentioned studies, this chapter deals with the positive impact of several systematic contributions provided by the patient’s granddaughter. We pinpoint where in the interaction the patient’s relative intervenes in the interaction, and how the patient’s relative upholds intersubjectivity between the parties in ways that facilitate the achievement of the clinical task, even though at times her contributions may temporarily interrupt the progression of the ongoing activity and create side sequences (Jefferson, 1972), or post-expand sequences (Schegloff, 2007). We discuss the patient’s granddaughter’s coordinating positioning in terms of how it contributes to the emergence of an epistemic ecology among participants (Goodwin, 2013) which is relevant for the process and potential outcome of the dementia evaluation. By the notion epistemic ecology, we refer to the organization of complementary knowing–unknowing relations, used by participants to understand each other and accomplish an ongoing activity (Goodwin, 2010). We argue that insights into epistemic negotiations in interpreter-mediated dementia evaluations have practical as well as theoretical implications regarding the presence of relatives in different activities, for the design and development of tests of cognitive functioning and, not least, for a (re-)conceptualization of what (and whose) skills are measured.

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Interpreter-mediated Interaction and Dementia Evaluations Given the growing numbers of immigrants around the world, there is also a rapid increase in the number of elderly people with diverse languages and cultures who experience age-related medical conditions such as dementia (Nielsen et al., 2011a, 2011b; see also Chapter 1, this volume). The current infrastructural inability of many healthcare services (e.g. memory clinics) to deal with this rapid increase in patient diversity has been pointed out in recent surveys and research reports (Nielsen, 2011; see Chapter 1, this volume). In the case of dementia, this lack of preparedness can be seen at the levels of administration as well as of human resources. Relative to cognitive screening, there is a lack of test material that has been translated and validated in the language of many patients (Nielsen, 2011). In addition, existing tests are often linguistically and culturally biased (e.g. Plejert et al., 2015; Yeo & Gallagher-Thompson, 2006, part II; Chapter 1, this volume). In the Nordic countries there is also a dearth of clinicians and certified interpreters in the languages required (Nielsen et al., 2015; Plejert et al., 2015). There are two aspects of the execution of cognitive tests that are of particular relevance for the present study. First, for reasons of validity and reliability, formal tests must be administered in specific and regulated ways. In this process, the ways in which instructions are given and how they are followed are key for the patients’ scores on different tasks within the test. These specificities as to how tests should be carried out makes the activity particularly challenging when an interpreter is also involved in mediating instructions (Majlesi & Plejert, 2016; Plejert et al., 2015). Secondly, tests of cognitive functioning include linguistically and culturally specific information/knowledge that are critical to the evaluation of the individual’s cognitive condition (Ardila, 2005; Parker & Philp, 2004). Because such tests are mostly validated in, and adapted to Western conditions, they may not be culturally and linguistically appropriate when implemented with people with diverse non-Western backgrounds and education, especially those with little or no formal literacy (see, for example, Nielsen, 2011; Nielsen & Jörgensen, 2013; Plejert et al., 2015; Yeo & Gallagher-Thompson, 2006, part II; Chapter 1, this volume). This makes interpretation the only means for implementing the tests. Interactionally oriented researchers have made the case that interpreted encounters are a complex ‘communicative pas de trois’ (Wadensjö, 1998: 12) in which all participants feed into the interchange. Participants use not only verbal resources to coordinate with one another, but also gestures, gaze and other bodily movements (e.g. Majlesi & Plejert, 2016; Pasquandrea, 2011; Ticca, 2008; Warnicke & Plejert, 2012, among others). For clinical conversations, it has already been demonstrated that the role of all parties including

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the interpreters – either formal or informal – alternates between various roles, as for instance cultural and institutional gatekeepers (cf. Bolden, 2000; Davidson, 2000), co-diagnosticians (Hsieh, 2007), and the advocates of either party at talk (Hsieh & Kramer, 2012). These roles are established in interaction as they are dialogically assumed by, or given to, various participants on a moment-to-moment basis during the course of talk (see also Wadensjö, 1998). From interaction analytical research, we know that language interpreters not only regulate the content of information and what is rendered to each party, but may also manage the flow of information in terms of controlling who gets to talk (e.g. Keselman et al., 2010; Warnicke & Plejert, 2012). An interpreter (formal or informal) is not just a voicing tool to be used as a ‘reporter’ who renders others’ utterances in interaction. S/he can also be seen and position herself as a ‘recapitulator’, who changes others’ utterance if not their content, and who can go beyond that to be perceived as a ‘responder’, who takes his/her own turn at talk and responds him/herself to the parties (Wadensjö, 1998: 92). From a clinical perspective, this has sometimes been considered as endangering and ‘diminishing the quality of care’ in interpretermediated interaction in clinical settings (cf. Briskina, 1996: 46). However, there are studies that show that, by their linguistic and social mediations, knowledgeable interpreters (in terms of language, certification and specialization) can be a buffer between parties, especially when there is a potential conflict between the main parties (cf. Davidson, 2000; Ribeiro, 2007). Interpreters may make judgements about the intention of the parties and adopt strategies to ‘bridge the cultural differences’ (Hsieh, 2007: 927), for example, by choosing words to mitigate potentially sensitive talk for the recipients, etc. (cf. Hsieh, 2007). They may even take into account larger contextual factors, such as the overall aim of the encounter, or institutional goals (Bolden, 2000). On a more personal level, interpreters might use their knowledge about either party in the conversation to resolve issues in relation to the inference-rich character of communicative acts (cf. Sacks, 1992: 40) by making relevant a particular cultural, historical or biographical reference through interpretation. This is also described as ‘epistemic brokering’, when interpreters mediate the exchanged information in a way that is appropriately understandable by either party (Raymond, 2014). This epistemic brokering facilitates medical interaction and can be observed in many cases among both formal and informal interpreters (cf. Jansson & Wadensjö, this volume; Meeuwesen et al., 2010). Nonetheless, when interpreters bring their additional knowledge – relevant or even non-relevant – to the encounters, they influence ‘the social and historical facts surrounding an interpreted speech event’ (Davidson, 2000: 382). This influence becomes a matter of great concern when it comes to diagnostic procedures in clinical encounters (Hsieh, 2007). The goal of facilitating the communication while preserving the integrity of

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clinical procedures is a challenge for mediation in clinical encounters (cf. Searight & Armock, 2013, for a review about the use of interpreters in mental health contexts). Similarly, in memory clinics there are particular concerns about the use of interpreters in the procedure of evaluation. The lack of training of professional interpreters in formal clinical activities (Plejert et al., 2015), and unsolicited contributions by the patients’ relatives may cause concerns about the impacts of the third party on taking interactional space from the patient (and also on the marginalization of the patient, e.g. Hasselkus, 1994) in ways that may affect specialists’ clinical assessments (Nielsen et al., 2011b). Moreover, the use of interpreters (professional or non-professional) may change the organization of interaction between the clinician and the patient so that the clinician (here, the occupational therapist) may not be totally in charge of the planned clinical activity. Considering the mixed results from research on the impact of interpreters provided above, it is clear that there are both advantages and disadvantages associated with mediated encounters. What is beyond doubt, however, is that the intricate interplay of all parties has consequences in terms of organizing the conversation at the levels of structuring the trajectory and the content of the conversation. Hence, adding further members to the interpreted encounter increases the complexity of the interaction, especially when the added member is a relative with linguistic competence in the required languages, who may thus assume the role of (ad hoc) interpreter as well. As we will demonstrate in our analyses, this complexity is particularly salient in relation to participants’ sources of, and claims to knowledge, and how this knowledge emerges and is negotiated during the clinical encounter.

The Presence of Patients’ Relatives in Clinical Encounters The presence of relatives and companions of patients in clinical encounters is a complex issue. From a positive perspective, patients’ companions and relatives may be sources of additional information about patients, and in the absence of formal interpreters they may be used as informal interpreters, although this is generally not recommended (Hadziabdic et al., 2009). They may also provide the patients with emotional support, particularly when the patient receives a diagnosis (e.g. Aminzadeh et al., 2007). Some research indicates that patients with diverse linguistic backgrounds prefer to bring a companion to clinical encounters, and they might even prefer their relatives as interpreters to professional interpreters (see, for example, Nielsen et al., 2011b). Nevertheless, it is also the case that companions to the patients may have their own agenda, which is not always in harmony with that of the clinician or even the patient (cf. Rosenberg et al., 2008; Westermeyer, 1990).

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Different family relations and cultural views towards health, especially mental health, may influence the ways in which relatives render information to the patients (see, for example, Marcos, 1979; Westermeyer, 1990; see also Searight & Armock, 2013, for an overview). It has also been reported that the flow of the clinical encounter may be disrupted by conflicts between patients and their companions (Robinson et al., 2010). The roles of companions have also been discussed in terms of patient advocates or informers of important biomedical information to clinicians. This dual role of the companions is also a recurrent finding in many studies on dementia (cf. Dooley et al., 2015). It should be noticed, however, that these reports are primarily based on studies conducted in monolingual settings. Within multilingual clinical encounters, the roles of third parties may involve factors beyond those observed so far. The complexity of the situation is also increased when it comes to dementia evaluations, where clinicians are required to elicit responses from the patients themselves without the interposition of third parties. The mediation process and the presence of the patients’ relatives undoubtedly pose challenges to the formalities of the clinical procedures. There are few studies on the practical problems that may emerge in interpreter-mediated dementia evaluations (but see Majlesi & Plejert, 2016; Plejert et al., 2015; Van de Mieroop et al., 2012). Even less is known about dementia evaluations where a professional interpreter and a patient’s relatives are co-present, which is the case in the present chapter.

Analytical Approach and Methodology In order to analyze how the patient’s relative contributes during the dementia evaluation, we draw on CA (Sacks, 1992; Schegloff, 2007), Goodwin’s (2010, 2013) notion of epistemic ecology, and dialogical theory (Linell, 1998, 2009, 2014). As mentioned in the introduction, particular attention is paid to exchanges of knowledge in terms of ‘epistemic negotiations’ (cf. Heritage & Raymond, 2005). What a participant in conversation knows (i.e. displays or claims to know in relation to other participants) is considered to be part of an ‘epistemic order’ which is manifest in social interaction (cf. van Dijk, 1998). This order is co-constructed by means of the positioning of the interlocutors and their displays of their knowledge statuses vis-à-vis one another in the flow of information (the topics at hand). Asymmetrical knowledge displays, and thus the status of being informed or not (Heritage & Raymond, 2005), and the positioning of each party in relation to the exchanged topic (and thus their understanding of the topic) change all the time. That is, the exchange of information occasions a construction of an unknowing–knowing relation between parties which can be used as a resource for engagement in conversation (Goodwin,

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1979), and to exhibit their stances vis-à-vis their social affiliations and/or disaffiliations with each other (cf. Maynard, 1986). This is a cornerstone of an epistemic ecology (Goodwin, 2013), where participants use diverse practices and resources for meaning making and transform their knowledge statuses through ‘coordinated actions of multiple participants’. At the same time, they adapt their actions according to the ‘emerging local environment’ for exchanging information and the accomplishment of the current activity or relevant task (cf. Goodwin, 2010: 391). Imbalance in the territory of knowledge and stances can ‘motivate’ social interaction and its sequential organization (cf. Heritage, 2012: 32). Participants’ negotiations about what they know and what they expect their recipients to know create opportunities to other ‘knowing’ parties to get involved in the current talk. Other parties may reject, confirm or modify information. Participants’ positioning in interaction in relation to one another exhibits their stances towards the epistemic order as they organize it through their contributions. In order to investigate how each party contributes to the co-constructed ecology of the situation, we attend to the formation of actions (Levinson, 2013), the use of various resources and practices involved in talk-in-interaction and the talk’s sequential and temporal unfolding in real time. In this tradition (cf. Goodwin, 1979, 1981, 2006, 2010, 2013), video-recording is essential, because it provides the opportunity to access the ‘video documentary record of certain times and places as stable naturalistic data for the social science’ (Laurier & Philo, 2006: 186). By preserving data through video-recording, our observation of the event becomes highly detailed and, importantly, re-examinable (cf. Sacks, 1984).

Data The present chapter is a case study, and our data comprise one-and-a half hours of video-recording of three parts of a dementia evaluation: historytaking, tests of cognitive functioning, and assessment of the patient’s ability to perform everyday tasks, such as preparing coffee. The evaluation took place in the home of the patient and the visit is recorded from beginning to end. The patient is an 80-year-old, Turkish-speaking woman. She has lived in Sweden for approximately 20 years, and although she has lost part of her ability to communicate in Swedish, she can still understand Swedish and occasionally produces Swedish words and phrases in response to questions. The clinician is a Swedish-speaking occupational therapist. Co-present in the event is a professional interpreter who speaks Turkish as a first language and Swedish as a second. Apart from the aforementioned participants, there are two additional persons present: the patient’s granddaughter, and the granddaughter’s boyfriend (see Figure 4.1).

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Figure 4.1 Occupational therapist (OT), patient (PA), interpreter (IN), granddaughter (RE) and granddaughter’s boyfriend (CO)

The event under scrutiny is the patient’s second appointment after an initial visit to a memory clinic. The whole event has been transcribed verbatim by the authors, and translations and transcriptions of Swedish and Turkish have been performed by native speakers of these languages, and subsequently controlled by a second native speaker. For the benefit of introducing the context in detail, the transcripts are complemented with illustrations of the configuration of the setting, and of participants’ embodied behaviour, i.e. their change of postures and body movements, etc. All names of participants are fictitious, and illustrations are made as drawings instead of screen shots, in order to protect participants’ identities. All participants gave their written consent to take part, and the study has been approved by a regional board for ethical vetting. For transcriptions, we have followed the Jeffersonian model (Jefferson, 1984). Transcription conventions are found in the Appendix.

The Relative as Coordinator In the data there are 32 occasions when the granddaughter makes contributions to the mediated interaction, and we have considered all occasions where epistemics is central in the negotiation between interlocutors in our overall analysis of the granddaughter’s actions. In this part of the chapter, four extracts are used as cases-in-point. The first extract (Extract 4.1a–c) is used to illustrate the overall coordinating positioning of the granddaughter. Subsequent extracts present instances where epistemic negotiations are relevant in relation to certain contributions by other participants, e.g. the interpreter (Extract 2a, b), the patient (Extract 4.3), or the occupational therapist (Extract 4.4a–c). The first three extracts (Extract 4.1–4.3) come from the

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history-taking part of the appointment, and the last one (Extract 4.4a–c) is taken from the administration of a test of cognitive functioning. As mentioned in the background section, the roles of patients’ companions are commonly categorized as being ‘informants’, or patients’ ‘advocates’ (cf. Dooley et al., 2015). This kind of participant positioning is also found in our data. However, we will argue that what the relative does here goes beyond these roles. The relative literally gets into the business of mediation, and modifies the exchanged information in ways that warrant a multilateral agreement of what is just said, asked or understood. In Extract 4.1a we demonstrate what actions this might entail. While taking notes about the patient’s medical history, the occupational therapist (OT) asks the patient (PA) whether she can remember things through reading and writing. Although her original question (not in the transcript) initially is focused on remembering, it also covers the patient’s ability to read and write. Both these issues are important for the occupational therapist’s assessment of potential changes in skills that may be due to cognitive decline. In response, the patient explains that she has given up writing, for example her diary, because of the difficulties that she encounters, but her reading ability is fine. Extract 4.1a begins from the moment in the interaction where the occupational therapist turns to the patient’s granddaughter (RE) and her boyfriend and asks if they agree that this is the case.

Extract 4.1a: Patient’s ability to remember through reading and writing Participants: Occupational Therapist (OT), Patient (PA), Interpreter (IN) and Relative (RE).

A major purpose of history taking is to collect information about a patient’s overall status and functioning, both in terms of illnesses and wellbeing, and of communicative and cognitive abilities, for example reading and writing skills. The occupational therapist, who has oriented towards such abilities in her question to the patient, now asks the relatives to confirm the patient’s previously expressed difficulty with writing (Line 01). This gets immediately confirmed (Lines 03, 05–08), as the granddaughter draws upon her own experiences that concur with her grandmother’s account.

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In addition, she adds an evaluative statement about the nature of writing, i.e. that it was ‘really fine’, also stating ‘in the past’ (Line 06), which strengthens the account that this is no longer the case. The granddaughter, however, does not stop there, but also adds more information concerning reading, which her grandmother has said is fine, stating that even if her grandmother continues to try to read (Line 12), she has difficulties retelling what she has read (Extract 4.1b).

Extract 4.1b: Patient’s ability to remember through reading and writing Participants: Occupational Therapist (OT), Patient (PA), Interpreter (IN) and Relative (RE).

Via her incremental contributions (Lines 11–14), the granddaughter positions herself as an informant, bringing inside information that could not be obtained by any other means, and which is also in line with the occupational therapist’s focus on the issue of remembering by means of reading and writing. At the same time, she does not disconfirm her grandmother’s account of her ability to read, but refines it by adding further details, i.e. the fact that she cannot remember exactly what she has read. In the continuation of the sequence, the relative’s contribution goes beyond being an informant. She also supports the patient by bringing useful and assessable information to the occupational therapist, drawing on her epistemic access to information that she has from her lifelong experiences of her grandmother – something she does throughout the data. Moreover, like a good advocate and informal interpreter, she turns back to the patient and renders the information to her in Turkish. In this way, the patient is fully aware of what is being said about her ability and gets an opportunity to confirm or disconfirm the information provided by her granddaughter (Extract 4.1c).

Extract 4.1c: Patient’s ability to remember through reading and writing Participants: Occupational Therapist (OT), Patient (PA), Interpreter (IN) and Relative (RE).

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In contrast to studies that point out that conversations between patients’ companions and clinicians – and even interaction between the patient and the clinician – may lead to the marginalization of the patients (e.g. Hasselkus, 1994; Sabat et al., 2011), Extract 4.1c shows how the granddaughter’s turnsat-talk facilitate the involvement of her grandmother in the current social situation, enhancing her epistemic position as main recipient and an agent with the opportunity and right to evaluate what was just said (cf. Heritage & Raymond, 2005). The granddaughter (Lines 18–23) engages with her grandmother and asks for her confirmation concerning her not being able to retell what she reads – something that she confirms (Line 27). The granddaughter’s engagement temporarily excludes the occupational therapist from the exchange. She is re-established as the person in charge of the encounter by the interpreter’s rendering of the patient’s confirmation into Swedish (Line 30). From the actions observed in Extract 4.1, we suggest that the role of the patient’s granddaughter is greater than simply an ‘informant’ and patient ‘advocate’ (see Dooley et al., 2015). It is extended to a ‘coordinator’ role. That is, the contributions by the granddaughter go beyond reporting on the patient’s actions/habits, biomedical history, and so on. Neither is she just a source of social support. Her modification of information contributes to a more accurate rendition of talk between the patient and the occupational therapist. Moreover, she provides additional necessary information for the evaluation of the patient’s communicative and cognitive condition. Therefore, she not only indexes her own access to knowledge vis-à-vis other participants in the talk, by seeking the patient’s alignment with her own contributions (her modification of information), but she also indexes the patient’s right to second or reject the modified information. Her coordinating role, therefore, contains ‘correcting’, ‘clarifying’ and/or ‘adding’ to the exchanged information and also providing the opportunity for the patient to assume her epistemic right to assess the information (cf. Heritage & Raymond, 2005). This is done through – and for – coordinating between the parties in order to come to an agreement over the business of the interchange, and the state of the affair.

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In what follows, we introduce more details of the granddaughter’s coordinating actions, and what they perform in the unfolding of interaction in real time.

Negotiating with the interpreter There are moments in any type of interaction, including interaction mediated by an interpreter, when mutual understanding is at stake and repair is needed (Schegloff et al., 1977). Repair (self-initiated self-repair excluded here) entails the collaborative work by participants in initiating repair, indicating a source of trouble and executing the repair proper. During the activity of dementia evaluation, it is essential that a satisfactory degree of mutual understanding has been achieved by participants in order for the activity to proceed, and repair work might be required quite frequently. Of particular interest is how epistemics are involved in the process of repair, as participants draw on their perceptions and assumptions about what is central during different phases of various tasks (e.g. Bolden, 2000, on interpreters’ presumptions about medical relevance, and Plejert et al., 2015, on understanding difficulties related to test-materials, patient literacy and interpreter training). Extract 4.2 illustrates the importance of epistemic negotiation, and demonstrates how the granddaughter engages in repair and interferes with the interpreter’s displayed understanding and interpretation, correcting the interpreter’s rendition. In Extract 4.2 participants talk about the patient’s occupation as a teacher prior to her retirement. The patient explains that she used to be a teacher. This information is followed by two questions: one concerning how she felt about her job (Line 01), and another about what level she used to teach at (Line 11). The second question, however, is formulated somewhat ambiguously (‘how old were the children?’; Line 12) and leads to a misunderstanding as to whether the question concerned the patient’s pupils or her own children (Extract 4.2a).

Extract 4.2a: Age of children Participants: Occupational Therapist (OT), Patient (PA), Interpreter (IN) and Relative (RE).

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When the question about the age of the children (Line 11) is rendered to the patient (Line 15), the patient requests clarification: ‘do you mean my children?’ (Line 18). Here, the source of the patient’s confusion is clear. In the continuation of the sequence, the interpreter confirms the understanding by saying ‘yes’ (Line 20) and checks with the occupational therapist, wondering about the time being referred to (‘that time do you mean’; Line 20). This question does not really address the patient’s concern about what children are meant (Line 18). In her rendition, the interpreter returns to the issue of past times (Line 24). Based on the interpreter’s rendered understanding of the occupational therapist’s question, the patient then reports the ages of her own children (Line 25), not the age of the children she used to teach. When she is finished with her account (the whole contribution is not presented here), the granddaughter initiates repair, targeting the original question and her hesitation about how it was rendered by the interpreter and subsequently interpreted and responded to by her grandmother (Line 29). Next, she requests a confirmation that the occupational therapist’s question did not concern the patient’s children (Line 31). This is

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confirmed by the occupational therapist (Line 34). As a next step, the granddaughter turns towards the interpreter and negotiates the miscomprehension (Extract 4.2b).

Extract 4.2b: Age of children Participants: Occupational Therapist (OT), Patient (PA), Interpreter (IN) and Relative (RE).

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As shown in Extract 4.2b, the granddaughter and the interpreter go through a multi-turn exchange (Lines 35–56) over the understanding and rendering of information to the patient. While still talking to the occupational therapist about how the patient misunderstood the question, the granddaughter turns to the interpreter (Line 35) to address the interpreter concerning this issue. Immediately reacting to the granddaughter’s interposition (Line 39), the interpreter, in turn, switches to Turkish and poses the question to the patient again, only this time she asks at what age children start school in Turkey (Lines 42 and 46). The patient answers the question (Line 48). The granddaughter still insists that this version of the question is not what the occupational therapist initially asked (Lines 52 and 54). The granddaughter then turns towards the occupational therapist again and requests a clarification as to whether she meant the age of the children the patient used to teach (Line 59). This understanding gets confirmed by the occupational therapist (Line 61), and she furthers it by reiterating that the patient’s pupils were in primary school or higher (Line 63). Now the issue is resolved and the interpreter displays her own change of understanding in an ‘aha’ turn (Line 69; cf. Heritage, 1984). In doing so, she acknowledges her misunderstanding and apologizes to the occupational therapist (Line 69) as well as to the relative (Line 89). Coming to an agreement with other parties, she now renders the question and provides the adequate information to the occupational therapist (Lines 75–84). Extracts 4.2a and 4.2b demonstrate the complexity involved in the situation – complexities that can be viewed in light of epistemics in terms of the shared life history of the grandmother and her granddaughter, and also of the granddaughter’s and the interpreter’s assumptions about the task at hand. The granddaughter appears to be continuously monitoring the exchange between the occupational therapist, interpreter and her grandmother, and in this particular case she interprets the occupational therapist’s question differently from the interpreter. She shows this by checking with the

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occupational therapist about the original question (Lines 29–35). By her clarification work she not only corrects the interpreter’s understanding of the question, but also brings the correct information to the occupational therapist’s attention (Lines 35–63), which leads to an aha turn by the interpreter (Line 65), who eventually puts the rendition right (Line 75–81).

Negotiating with the patient Extract 4.3 begins with a question concerning the patient’s use of the telephone. The occupational therapist asks whether the patient ever makes any phone calls.

Extract 4.3: Phone call Participants: Occupational Therapist (OT), Patient (PA), Interpreter (IN) and Relative (RE).

The occupational therapist’s question, ‘do you make a phone call (0.4) some time’ (Line 02), is answered positively by the patient as she nods and says: ‘it happens’ (Line 07). This is immediately rendered as ‘yeah’ by the interpreter (Line 09), which is also followed by the occupational therapist beginning to record the answer (Line 10). The granddaughter, however, objects to the answer by reminding her grandmother that it is her daughter

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who is mainly responsible for calling (Line 11). The granddaughter’s contribution about her mum answering (Line 11) is somewhat ambiguous and could be interpreted as if the grandmother calls, but is then called back by her daughter (cf. Kitzinger & Jones, 2007 on phone call openings in relation to a person with dementia). When asked the direct question of whether she calls her own daughter ‘a lot’ (Line 15), the grandmother openly acknowledges that she never does so (Line 17). The interpreter then corrects the information accordingly (Lines 19–23). Again, it is interesting to note that the granddaughter, based on her epistemic access to knowledge about how the phone calls are usually managed, chooses to negotiate with her grandmother instead of directly providing information to the occupational therapist. She formulates her correction embedded in a question form rather than articulating it in an outright rejection of her grandmother’s response. Engaging her grandmother in acknowledging the provided information attests to the coordinating role of the relative in interaction where she minutely monitors the exchanged information and contributes to its modification, mostly on her own initiative.

Negotiating with the occupational therapist The sequence shown in Extract 4.4a–c is extracted from the administration of a subtest of the Montreal Cognitive Assessment (MoCA). The MoCA is a screening instrument that assesses short-term memory, visuospatial abilities, executive functions, attention, concentration and working memory, language, and orientation to time and place. In Extract 4.4 the patient is asked to list as many words beginning with the same alphabetical letter as she can within one minute. This part of the MoCA is used in order to assess the verbal (phonemic) fluency of the patient. The patient’s performance in this test is measured in relation to the number of words being produced. A low number, or changes from high numbers to low numbers in repeated testing over time, suggests cognitive changes, for example due to dementia. The initial letter (phoneme) that is chosen is not necessarily the same in different languages, but should be common in the initial position of words in the language of the patient (see Lezak et al., 2012: 693). For example, in the Swedish translated version of the MoCA, the words asked for should start with the letter ‘F’, whereas the Turkish version uses ‘K’. Interestingly, in this setting, the occupational therapist utilizes the Swedish version, and instead of relying on information from the Turkish translation of the test, she discusses with the interpreter and the granddaughter about the most prevalent alphabetical letter in the initial position of words in Turkish. They come up with the alphabetic letter A as frequently used as an initial sound []. There are different things that make the test procedure complicated, for example that negotiating the instruction in situ seems not to be a simple oneturn telling but a multi-turn, multiparty exchange of talk over the course of

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various parts of the instruction (cf. Plejert et al., 2015; see also Chapter 1, this volume). This includes coming to an agreement about what to ask the patient during the task, e.g. what the most frequently occurring initial alphabetical letter in words in Turkish is that can be used for the purpose of the current task. The second issue is how the clinician turns some of her own responsibilities over to the interpreter via her instruction (Extract 4.4a, Lines 3–19). The interpreter not only renders the information to the patient, but also comes to perform the clinician’s role in terms of administering the test. The interpreter’s responsibilities include rendering the instruction to the patient, checking if she is performing according to the instruction (which the clinician cannot do because of the linguistic barrier), writing down the words that the patient comes up with, and also keeping the time for the task. This latter point is the focus of the sequence below. All the details of mediating, instructing and performing the task require many interactional contributions that ensure that the parties are in an agreement over every detail. It should be mentioned that neither negotiating which letter to use, nor handing over the responsibility for the test to the interpreter, conform to the guidelines for how a test such as MoCA is to be carried out. However, our intention here is not to criticize the occupational therapist for any misconduct. Rather, her shifting responsibility for administering the test is a result of the unavailability of a linguistically and culturally adapted version of the assessment instrument (cf. Nielsen, 2011a, 2011b). As mentioned above, in the case of MoCA there exists a Turkish version, but in order to carry out that test in a satisfactory way a Turkish-speaking clinician would be required. Very few tests of cognitive functioning have been designed with interpreters in mind. The occupational therapist is therefore more or less forced to invent means in situ to manage the task and make the most out of it, despite the possibility that the validity of results may be affected (cf. Plejert et al., 2015), particularly since the scores are to be interpreted in comparison to a standardization sample that took a different test. In Extract 4.4, a misapprehension occurs in relation to the instruction concerning who is to keep the time of one minute, during which the patient is supposed to produce words beginning with the letter A. The occupational therapist takes a timer out of her purse and shows it to the interpreter, while she explains what she expects the patient to do.

Extract 4.4a: The timer Participants: Occupational Therapist (OT), Patient (PA), Interpreter (IN) and Relative (RE).

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In her instruction, the occupational therapist clarifies that the timer is going to be used to measure one minute, during which the patient will produce ‘as many words as possible which begin then with a’ (Lines 11–14). She does not, however, say explicitly whether the patient may or may not see the timer as she carries out the task. This makes it ambiguous as to whether the interpreter should ask the patient also to be concerned about the timer or not. This ambiguity is clear in the continuation of the sequence, where the interpreter renders the given instruction to the patient. She perceives that the patient should also be involved in the time-keeping, as she places the clock in front of the patient while telling her what to do next (Extract 4.4b, Lines 20–30).

Extract 4.4b: The timer Participants: Occupational Therapist (OT), Patient (PA), Interpreter (IN) and Relative (RE).

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While giving the instruction to the patient (Lines 20–30), the interpreter also explains what type of words the patient is expected to produce (that part is omitted from the transcript due to our primary focus on the relative’s actions). The granddaughter initiates a side-sequence (Jefferson, 1972) directed towards the occupational therapist concerning whether the patient should first know about the length of the time in reality: ‘is she going to see how much how long one minute is?’ (Line 32). The occupational therapist explains that the timer is not meant for the patient (Lines 33–38). This information, however, was missing from the instruction in the first place, but is now noticeable as it was brought up by the granddaughter. Now, in the continuation of the instruction, it becomes apparent to the occupational therapist that a misunderstanding has occurred, and that the interpreter is asking the patient to keep the time herself (Extract 4.4c).

Extract 4.4c: The timer Participants: Occupational Therapist (OT), Patient (PA), Interpreter (IN) and Relative (RE).

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When the interpreter has finished exchanging information with the patient, she turns to the occupational therapist and asks if the patient is allowed to answer with animal names. The question is brought up in the conversation between the patient and the interpreter parallel to, and during, the interaction between the granddaughter and the occupational therapist (Lines 31–38). When the issue concerning animal names is resolved (Lines 39–54), the interpreter observably and audibly announces that she is going to initiate the task (Line 55). While reporting that she is going to start, she also tells the patient ‘you can also follow this’ (Line 56), referring to the timer. The occupational therapist is quick to clarify that the timer is meant for the interpreter only, and not the patient (she says: ‘this is actually just for you’, and turns the timer to face the interpreter; see Lines 58 and 60). Now they agree that the timer is not meant for the patient (Lines 61–64). The interpreter also renders this information to the patient, along with a repetition of the information that she will start the task, which the patient confirms in overlap with the interpreter’s finishing her turn. Now the granddaughter contributes to the instruction, telling her grandmother that she should continue to produce words until the interpreter says stop (Line 70), something that the interpreter also confirms (Line 74). The instruction as to how to begin the task is now done and the patient turns back to the content of the test to be sure that the words she is going to produce should begin with ‘a’ and not something else (Line 72). After a few more turns of settling the task, the patient eventually begins (omitted). In Extract 4.4c, checking understanding and reaffirming mutual agreement over the terms of conduct are again crucial, not only on the part of the patient and her understanding of the assessment, but also in a generic sense concerning the participants’ varying epistemic access to knowledge of the purpose of a specific task. The granddaughter’s monitoring of and perceptions of the interplay between the occupational therapist, interpreter and the

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grandmother are displayed by the ways in which she seeks clarifications about the nature of the task. Here, in contrast to the history-taking part of the dementia evaluation, she has no background knowledge about the purpose of the test, nor of its practical execution. It is probably also rather difficult for her to discern what kind of shared knowledge with her grandmother may be of relevance in relation to the task, at least not before her grandmother has started to respond to the instruction. However, what she contributes to the current situation, similarly to other examples above, includes indexing her grandmother’s right to have access to adequate information when responding to the instruction. Her expressed concern (Lines 31–32) potentially contributes to the occupational therapist’s initiation to correct the given instruction by the interpreter (Lines 57–60). Again, by means of her actions, the granddaughter has positioned herself as a coordinator, whose contributions affect and modify the other participants’ input to the interaction which, in turn, has an impact on the ways in which the task is understood and described, before the patient starts producing an answer.

Discussion In this study we have focused on the exchange of knowledge in terms of epistemic negotiations (cf. Heritage & Raymond, 2005), wherein we have shown how ‘knowing–unknowing’ statuses (Goodwin, 1979) may provide grounds for a ‘knowing’ but ‘non-addressed’ party (such as the relative of the patient in our data) to self-select and join in the ongoing talk-in-interaction to modify the exchanged information. We have shown how the interposition of the relative during some parts of a dementia evaluation is consequential in terms of providing medical information, but also (and critically) of modifying and coordinating rendered information for the practical purposes of accomplishing the tasks at hand. Previous studies of talk-in-interaction have shown the complexity of interactional exchanges of information when interlocutors align or disalign with one another (e.g. Maynard, 1986), and how they show their various epistemic statuses accordingly (e.g. Heritage, 2012; Heritage & Raymond, 2005). More importantly, previous research has demonstrated how participants form their current actions based on emergent knowledge about each other in interaction (Goodwin, 1979, 2010, 2013). This has been argued as a ‘motivation’ for social interaction (Heritage, 2012), and can be considered as grounds for various types of actions, such as the correction of information and its modification for the practical purposes of accomplishing the current activity. In the present data, we have demonstrated that the flow of information not only elicits response from the recipient (cf. Stivers & Rossano, 2010) and gives opportunities for the further pursuit of information (cf. Pomerantz, 1984), but it also provides an interactional opportunity for a non-addressed

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party, such as the patient’s relative, to adjust the information, contributing to the construction of an epistemic order that is decisive for the purposes of the dementia evaluation. Studies of multiparty activities, particularly interpreter-mediated interaction, have shown how the interplay between interlocutors has impacts on the shift of stances, building layers of voices in the participation framework (cf. Wadensjö, 1998; cf. the concept of footing, Goffman, 1981), or on the control of the distribution of turns (Keselman et al., 2010). Studies have also demonstrated how interpreter-mediated interaction may be organized in accordance with institutional purposes (Bolden, 2000). There are studies that warn against the imposition of mediation in clinical encounters and its negative impact, such as on the quality of care (e.g. Briskina, 1996), on diagnostic processes (e.g. Kaufert, 1999; Spencer-Oatey & Jing, 2007), and on the positioning of the patient as a passive participant (i.e. the patient’s marginalization in the encounter; see Hasselkus, 1994; Sabat et al., 2011). The presence of the patient’s relative or companion in the process of mediation has also been a matter of concern in terms of their personal agenda, which may be different from the clinician’s or even from the patient’s (cf. Rosenberg et al., 2008; Westermeyer, 1990). In contrast to the above-mentioned studies, which primarily point out the negative impact of mediation and the co-presence of the patients’ relatives in mediated clinical encounters (cf. Spencer-Oatey & Xing, 2007), we present some positive aspects of the co-presence of the patient’s relative. We have not only underscored the roles ascribed to the patient’s relative in clinical mediated situations by other studies, i.e. being ‘informants’ or ‘patient advocates’ (Dooley et al., 2015; Hsieh, 2006; Hsieh & Kramer, 2012; Kaufert, 1999), but we have also shown how a patient’s relative may play a significant role in shaping a dynamic ecology for exchanging information, by means of a constant monitoring and coordination with other participants, resulting in modifications and adjustments according to the requirement of the current task.

Conclusions and Implications In this chapter we have shown how the patient’s granddaughter, in the process of ‘coordination’, negotiates with all parties (see the examples above) to ensure the intelligibility of interpretation (Extract 4.2), the accuracy of information (Extract 4.3), and the clarity of instruction (Extract 4.4). She resolves potential problems in mediation both reactively (e.g. in her repair work, Extract 4.2) and proactively (e.g. Extract 4.4), and makes sure that the parties, particularly the patient, receive and communicate aspects of relevance for the evaluation. Her monitoring of the flow of information and coordinating the achievement of mutual understanding may be consequential in terms

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of clinical relevance. Her intervening in the evaluation procedure has practical implications as follows. Our analyses provide a primarily positive picture of the role of epistemic negotiations, with a particular focus on contributions made by the patient’s granddaughter. In fact, none of all the 32 cases of the relative’s intervening can be assessed as directly irrelevant, misleading or redundant for the purposes of the dementia evaluation for this particular patient. This, however, does not mean that we recommend that relatives or companions should always be present during dementia evaluations. Rather, what the present study implies is that a much more thorough examination is needed about how knowledge emerges and is negotiated and shaped as a collaborative achievement and, in this particular context, also how it is turned into information to be assessed and, in relation to the MoCA test in this case, ascribed to the cognitive ability of one mind, i.e. the patient’s (cf. Majlesi & Plejert, 2016). Extracts 4.1–4.3 were taken from the history-taking part of the occupational therapist’s visit to the patient. Already in the work plan for this activity, negotiated and shared knowledge of patients and their significant others is of relevance, and not only in terms of agreement and alignment. Differing perspectives, for example illustrated by the granddaughter’s mild remark about telephone habits (Extract 4.3) provide important sources for the occupational therapist’s possibility of noticing details of relevance in relation to potential dementia. One could therefore argue that the epistemic negotiations, and the granddaughter’s positioning as coordinator, enhance the possibility of performing the history-taking activity in concordance with its basic aims. Another issue in relation to this concerns clinical encounters in which no relatives or companions accompany the patient. One might assume that, if knowledge formation by and large is a collaborative achievement, a patient might potentially perform differently and be assessed differently depending on varying participation frameworks. In one sense, this assumption is perhaps self-explanatory and quite visible in our data, where the granddaughter’s contributions nuanced the information provided by her grandmother. Nonetheless, for the purpose of conducting a dementia evaluation, this might still be worthwhile highlighting, since dementia symptoms will then also be more or less visible depending on participants’ mutual formation of actions. In the case of the part of the evaluation that consisted of the administration of a test of cognitive functioning, exemplified by Extract 4.4, the contributions by the granddaughter were again primarily facilitative, at least in terms of coordinating all the participants’ understandings of the manner in which a specific task was to be conducted. However, in relation to quite strict instructions found in manuals for tests such as the MoCA, her intervening may be considered disruptive. The basic turn-organization of a formal test is ideally a three-part sequence, consisting of an instruction from the occupational therapist, a response by the patient, and an uptake by the occupational

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therapist of the patient’s response, e.g. writing down a score or comment (rather than providing supportive or confirming feedback which, according to many guidelines, should be avoided). In multilingual contexts, however, the presence of an interpreter adds to the complexity of the task, and affects the turn-organization. Again, an idealized pattern would consist of an original instruction, a rendition, the patient’s response, a rendition of the patient’s response, and uptake by the occupational therapist (cf. Bolden, 2000). In relation to these optimal sequence structures, it becomes clear that the granddaughter’s coordinations, as well as the interpreter’s requests for clarification about aspects of the task, disrupt the ways in which the test is performed, thus violating the very foundation on which the design of the test rests. Leaving aside the contributions of the granddaughter for a moment, the conduct of the interpreter is also important in terms of the epistemics of background knowledge. A large proportion of the interpreters in Sweden (and elsewhere), despite their degree of qualification (e.g. certification and specialization), often lack training concerning the specific nature of formal clinical tests (cf. Plejert et al., 2015; Chapter 1, this volume), and they must acquire this knowledge basically from experience. Misunderstandings such as that exemplified in Extract 4.4 can be avoided if the interpreter and occupational therapist were to meet for a couple of minutes before the visit to the patient in order to go through the subtasks of the test. This is a practice that some memory clinics strive to make routine. However, its implementation may be affected by factors such as additional costs, or practical matters such as the availability and time of interpreters, or tight schedules for patient appointments, etc. A further problem in the current data is that the interpreter was assigned the responsibility for administering the phonemic fluency task, which is against both the guidelines for the test and interpreters’ code of conduct. Nevertheless, a mutually negotiated foundation between occupational therapist and interpreter would quite likely have been beneficial for a less disruptive execution of the task at hand. Hopefully it would also contribute to a safer procedure, and a more valid outcome from the patient’s perspective. Finally, the study suggests that the epistemic negotiation that takes place among interlocutors during a multi-party dementia evaluation in various ways shapes the knowledge and the skills that the activity is designed to measure. This is of particular relevance in relation to the test of cognitive functioning, where we argue that there is a mismatch between the traditional notion of one-person-one-mind on which the test is based, and the fact that a patient’s understanding of a task is, at least to some extent, collaboratively constructed by participants (cf. Majlesi & Plejert, 2016). Increased awareness of the emergence of epistemic ecologies (Goodwin, 2013) of the kind described in this chapter may contribute to the development of tests that are better adapted to clinical, multilingual, multi-party settings.

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Appendix [ = (0.5) (.) . ? , :: Word WOR °° >
jamen< (.) yalla ghanni. yes but (.) come on sing-FEM ((waves her left hand)) 19 A: (xx[xx) 20 T: 21 F:

([xxx)

[ja ja (ja[tror xxxx) yes yes (yes I believe xxxx) [h h h ha:::

When Tilda declares that she is a poor dancer, Farida counters, ‘ja men de ¿e bra:’ (‘yes but that’s fine’) with a cheerful voice (Lines 01–03). While Tilda disengages by beginning to walk away with her trolley, Farida initiates an embodied account of how dancing can be enacted (Line 04). While swinging her hips and arms she says ‘bara så hä:r.’ (‘just like this’), followed by ‘nånting’ (‘something’). This embodied enactment is similar to what Keevallik (2010) analyzes as bodily quoting in dance classes where vocal and bodily resources are deployed for the simultaneous production of demonstration and description to achieve performance. In response, Tilda stretches out

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her left arm towards Farida and agrees to join her, ‘ja kom då’ (‘yes come on then’). Farida repeats ‘så hä:r’ (‘like this’) and makes a dancing movement with her left leg (Line 09). She then voices Tilda’s request ‘ja: (.) kom då’ (‘yes (.) come on then’) while getting close to her (Line 10). She bends her back and knees, thus achieving the same length as Tilda, and stretches out her elbow, so as to invite her to dance arm in arm with her (Line 10). In Line 12, Farida puts her arm around Tilda’s waist, and Tilda puts her arm on Farida’s shoulder. When Farida begins to step with her feet while making rhythmic sounds, ‘ta ta ra ta’, Tilda joins her in the stepping activity (Line 14). In Line 15, Farida makes a halt and gazes at Amira. She urges her to sing, ‘ghannilna la neŕous’ (‘sing for us because we dance’), and summons her with an arm gesture. In Line 16, Tilda also makes a halt and gazes at Amira. While waving her arm as if matching Farida’s arm gesture, she requests Amira to sing (Line 17), ‘sjung nu’rå’ (‘sing come on’). Farida is quick to rephrase Tilda’s embodied Swedish-language summon into Arabic (Line 18), ‘yalla ghanni.’ (‘come on sing’). Amira responds something inaudibly in overlap with Tilda’s ‘[ja ja (ja[tror xxxx)’ (‘yes yes (I believe xxxx)’) and the caregiver’s laughter (Lines 19–21). Extract 5.2b, which is a continuation of the interaction in Extract 5.2a, illustrates how the participation framework expands when Farida and Tilda begin to move forward to Amira with dancing steps.

Extract 5.2b: ‘We’ll dance.’ 22 T: ((begins to sing in Swedish)) 23

((F and T begin to step forward to A;

24

A follows their movements and smiles))

25 F:

yalla jayeen nahna neŕous (.) come on 1PL-come we 1PL-dance come on we are coming we we’ll dance

26

ghanni sing-FEM sing

27 A: ghanni ghanni ghannileh ((sings)) sing-FEM sing-FEM sing-FEM-for-me sing sing sing for me ((A smiles and sings; F is swinging her hips)) 28 29

(8.0)((F and T are stepping with their feet; A and T sing; F laughs))

30 T: (du e xxxx) ja förstår (.) kanske lite (you are xxxx) I understand (.) a little perhaps

Creat ing Oppor tunit ies for Resident s to Engage in Soc ial E xchange

31 F:

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hhhhha↑:::.

32 T: tanten i soffan the lady in the sofa ((lets go of her hold of F’s shoulder and turns away from A)) 33

((T and F begin to walk away from A))

In Line 23, Tilda and Farida begin to step forward towards Amira while Tilda sings a traditional nursery rhyme in Swedish. Simultaneously, the participation framework is expanded when Amira enters the interaction. In Line 24, Amira turns her gaze to Tilda and Farida and smiles. In response to Farida’s request in Lines 25–26, she begins to sing in Arabic in overlap with Tilda’s Swedish nursery rhyme (Line 27), ‘ghanni ghanni ghannileh’ (‘sing sing sing for me’). During 8.0 seconds of recording, Farida and Tilda dance with their feet in front of Amira (Line 28–29). Farida swings her hips and laughs; Amira and Tilda are singing. In Line 32, Farida and Tilda disengage from the activity. Tilda lets go of her hold of Farida’s shoulder. She turns her trolley away from Amira and refers to her in the third person as a non-ratified participant, ‘tanten i soffan’ (‘the lady in the sofa’). Farida walks away and returns to her chores. Referring to Amira as ‘the lady in the sofa’, Tilda alludes to the usual, everyday situation at the somatic unit, where Amira sits in a particular sofa. In the analyzed example (Extract 5.2a and 2b), Amira’s singing becomes a focus of joint attention. Kendon (1970) and Goodwin (e.g. 1981) highlight the significance of gaze and bodily conduct as a mechanism for speakers and listeners to show their engagement and disengagement. In this example, Farida’s embodied actions create an opportunity for Tilda and Amira to participate in a shared activity. When Farida makes a halt in the stepping and summons Amira to sing with an embodied directive in Arabic, she displays her engagement in the activity in which she just managed to involve Tilda. Such a visible display of engagement, here understood as a brokering practice, makes its meaning accessible for Tilda who now attends to Amira. In collaboration with Farida she prompts Amira to sing what then develops into a shared communicative project (Linell, 1998). When Amira eventually enters into the interaction, the participation framework expands. The fact that the participants do not share a common language is compensated for in this example through the bodily resources of gesture, movement and gaze. Here, dancing is integrated with what to Amira is an everyday practice, namely singing.

Sharing a piece of life history The following three extracts (Extracts 5.3a–c) illustrate how brokering practices (codeswitching and redesigning of content) facilitate inclusion and

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participation across linguistic boundaries in a game-like exercise. The example is drawn from a gathering in the dayroom at the ward that hosted the Kurdish resident (Hawa). In this example, brokering opens a space for Hawa’s Swedish-speaking caregiver (Eva) to share a piece of Hawa’s life history. Rona and Jian (a Kurdish-speaking trainee) and Eva are sitting at a table drinking coffee together with Hawa and two Swedish-speaking residents (Maja and Stina). They are looking at photographs pasted on cards representing different animals, flowers, trees and fruits that are used as aids to relive and exchange memories in the group of residents. This exercise had been previously implemented at the ward as a recreational activity. In the literature (e.g. Finnema et al., 2000: 151–154), the exercise is referred to as reminiscence life-review, where it is discussed as an emotion-oriented approach and treatment in the care for people with dementia. Extract 5.3a focuses on the Kurdish-speaking caregiver’s recipient design in terms of language choice. We demonstrate how Rona, who administers the photo-exercise, designs her turns in a manner that secures inclusion of both Hawa and the Swedish-speaking persons around the table. This phenomenon of (re-)inclusion and engagement of a participant in interaction through codeswitching is similar to what Skårup (2004) labels ‘bilingual brokering’.

Extract 5.3a: ‘What is that?’ H = Hawa (Kurdish-speaking resident); M = Maja (Swedish-speaking resident; R = Rona (Swedish- and Kurdish-speaking caregiver); J = Jian (Swedishand Kurdish-speaking trainee). 01 R:

va e d?e (.) va e d?e what is that? (.) what is that? ((holds up a card with a photograph in front of M))

02 M: de va den hon hade därborta ((points at H)) that was the one she had over there 03 H:

a hh((gazes at the card)) a

04 R:

ja men gissa va e de här (.) va e yes but guess what is this (.) what is ((holds up the card in view for both M and H))

05 H:

ez niz↑anim ev çi ye hh I not-know-1SG it what COP-3SG don’t I know what that is hh

06 R:

çi ?ye what COP-3SG what’s that

Creat ing Oppor tunit ies for Resident s to Engage in Soc ial E xchange

07 H:

kîroşka rabbit-SG a rabbit

08 R:

bra:: [Hawa:: good [Hawa ((smiles))

09 J: 10 R:

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[hhhh Hhhh

In Line 01, Rona holds a card representing a rabbit in front of Maja and asks her in Swedish, ‘va e d?e (.) va e d?e’ (‘what is that (.) what is that’) while gazing at her. Maja, however, does not provide a relevant answer. In Line 02, she points at Hawa, who is sitting next to her, ‘de va den hon hade därborta’ (‘that was the one she had over there’). At this moment, Hawa also orients to the interaction, displaying amusement while turning her gaze to the card and producing a laugh token (Line 03). In Line 04, Rona holds up the card in view of both Maja and Hawa and prompts them to take a guess, ‘ja men gissa va e de här’ (‘yes but guess what is this’), thereby encouraging both residents to join the exchange. Hawa, for whom this exercise is familiar, apparently understands what action is due. She responds with a counter question (Line 05), ‘ez niz↑anim ev çi ye’ (‘don’t I know what that is?’), as if challenging the game-like exercise frame (Lindholm & Wray, 2011). Rona then rephrases her Swedish-language display question in Kurdish, ‘çi ?ye’ (‘what is that’), which is followed by Hawa’s prompt answer, ‘kîroşka’ (‘a rabbit’). By affiliating with Hawa’s choice of language, Rona secures her engagement in the shared exercise. In Line 08, she evaluates Hawa’s answer as correct with the Swedish assessment term ‘bra::’ (‘good’), followed by the resident’s first name, ‘Hawa::’. The obvious recipient design for Hawa would have been to speak Kurdish. By choosing to praise Hawa in Swedish, however, all the others around the table become implicated as audience. The complimentary quality of the assessment is supported by the fact that the caregiver emphasizes the assessment term ‘bra::’ (‘good’), by extending the vowel. In Extract 5.3b, following directly after Extract 5.3a, Hawa starts recounting a piece of experience from her family life in her home country.

Extract 5.3b: ‘We eat their meat.’ H = Hawa (Kurdish-speaking resident); R = Rona (Swedish- and Kurdishspeaking caregiver); J = Jian (Swedish- and Kurdish-speaking trainee). 11

(1.7) ((H gazes at the rabbit card that she holds in her hand))

12 H: a::: ((gazes at the card in her hand))

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13 R: va e de? what’s that? ((R holds another card in view of M)) 14 H: em goᶊt wan dixwu:n ((gazes at R)) we meat them eat-1PL we eat their meat 15 R: ja:↑::a. yes 16

(0.7)

17 J:

dom äter de they eat it ((xx seconds of recording; R has a discussion with E whether one can eat rabbit meat))

In Lines 11–12, Hawa gazes at the card representing a rabbit that she holds in her hand and indicates a wish to take a turn, ‘a:::’ (‘a:::’). After Rona’s Swedish-language question addressed to Maja (Line 13), Hawa turns her body and gaze towards Rona and recounts a piece of personal experience concerning rabbit meat (Line 14), ‘em goᶊt wan dixwu:n’ (‘we eat their meat’). Rona, who turns her gaze to Hawa, responds with the Swedish affirmative ja:↑::a. (‘yes’), produced with an extended vowel and a rising-falling contour indicative of involvement, thereby encouraging the resident to continue her telling (Line 15). After the lapse in Line 16, Jian, the Kurdish-speaking trainee, explains to Eva what Hawa just said concerning rabbit meat, ‘dom äter de’ (‘they eat it’). After a discussion between Rona and Eva about whether one can eat rabbit meat (not shown here), Hawa expands on her narrative by presenting more details on her memories of rabbits. This is shown in Extract 5.3c below.

Extract 5.3c: ‘She says that reminds me.’ H = Hawa (Kurdish-speaking resident); R = Rona (Swedish- and Kurdishspeaking caregiver); E = Eva (Swedish-speaking caregiver; native speaker); J = Jian (Swedish- and Kurdish-speaking trainee). 27 H: her roj Ferhad diçu every day Ferhad went-3SG every day Ferhad went ((gazes at R)) 28 E:

man har ju dom som you keep them of course as

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29

125

(0.5)

30 H: girse wan ha girt, ((hand gesture)) take them so caught-3SG take them caught them like this 31 R: ja:a yes me. 32 H: li aliyȇ at side-GEN our at our place 33 J:

(xxx) Hawa [e:: (xxx) Hawa e::

34 R:

[ja de påminner [henne (.) ja yes that reminds her (.) yes ((nods and smiles; glances at E))

35 J:

[son (xxx) son (xxx)

36

(0.6)

37 J:

˚(xxx)˚ ˚(xxx)˚

min son 38 R: hon säjer de påminner mej när she says that reminds me of when my son 39

gick å (.) jagade dom went to hunt them

In Line 27, Hawa turns her gaze to Rona and initiates a narrative about her son’s rabbit hunting, ‘her roj Ferhad diçu’ (‘every day Ferhad went’). Following Eva’s inserted comment in Swedish in Line 28 (which refers to her discussion with Rona about rabbit meat), Hawa proceeds with her narrative. In Line 30, she adds a piece of story with a firm and excited voice, ‘girse wan ha girt’ (‘take them caught them like this’) while making a waving gesture with her left hand as if illustrating the act of catching the rabbit. This is followed by details on the setting where the catching took place, ‘li aliyȇ me.’ (‘at our place’). Throughout this telling, Hawa smiles and looks at Rona. In Line 34, Rona glances at Eva who sits next to her (at her left side). In overlap with Jian, she initiates a retelling in Swedish of Hawa’s narrative: ‘ja de påminner henne (.) ja’ (‘yes it reminds her (.) yes’). She nods and smiles, affiliating in this way with the emotional stance that Hawa is taking towards the reported event. In Lines 38–39, Rona retakes and completes a retelling turn in Swedish: ‘hon säjer de påminner mej när min son gick å (.) jagade dom’ (‘she

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says it reminds me when my son went to hunt them’). Eva, however, is engaged in feeding Stina and remains silent. Since Eva is sitting with her back to the camera, it is not possible to see if she co-affiliates with Rona’s rendition through embodied display of engagement. In this example (Extract 5.3a–c), Rona brokers between a resident and a caregiver by codeswitching (Extract 5.3a,b) and recipient-attendant strategies (redesigning of content by means of embodied practices) for the purpose of explaining in Swedish a resident’s talk in another language (Extract 3c). Her use of these practices plays a significant role in her fostering the reminiscence life-review exchange across linguistic boundaries. The example illustrates a case in which caregivers’ multilingualism and brokering practices facilitate the social exchange between monolingual residents (and the caregivers themselves). As the analysis attests, there is ample evidence of Hawa’s engagement in the activity and in the storytelling evoked by the rabbit card. Her display of excitement through voice, gesticulating and smiling and eagerness to take turns are evidence of her amusement. When Rona takes up Hawa’s story and retells it for her colleague, she demonstrates her understanding of and affiliation with the resident’s perspective through head nods, gaze and smile. In this way, she reanimates the emotional tone in the resident’s telling. Hawa’s stance is also made accessible through Rona’s use of reported speech, ‘de påminner mej när min son gick å (.) jagade dom’ (‘it reminds me when my son went to hunt them’) which enacts the voice of the resident. Moreover, the use of the pre-announcement ‘de påminner mej’ (‘it reminds me’) in Rona’s rendition validates the resident’s contribution as relevant within the frame of the reminiscence life-review exercise, the purpose of which is to recall memories. Hence, Hawa can be recognized as a competent participant in the shared activity.

Concluding Discussion In this chapter, we have demonstrated how participants – residents and caregivers – who do not share a language are brokered into mutual interaction. Three different settings: a ‘how-are-you’ sequence, a singing and dancing activity, and a recreational activity with the use of a photo have been analyzed. The extracts illustrate the challenges as well as the potentials of caregivers’ brokering practices. As our analyses attest, in a linguistically and culturally complex care context involving persons who do not share a common language, brokering can be organized not in a single way, but variously and with different interactional outcomes. As the analysis of Extract 5.1 suggests, it is a demanding task to act as an intermediary between two individuals who both are vulnerable and in need of support. When the encounter between Swedish-speaking Tilda and

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Arabic-speaking Amira starts, Amira and two Arabic-speaking caregivers are seated closely together and involved in a conversation. Hence, when Tilda enters the room, she could very possibly have felt excluded. One of the caregivers, Farida, counteracts this by switching languages, encouraging Tilda in Swedish to ‘come and sit’. The subsequent unfolding interaction and the interactional outcome – a ‘how-are-you’ sequence – is largely reliant on verbal resources. Brokering in this example is enacted by speakers’ renditions of preceding talk in another language. As demonstrated, Farida takes several steps to deal with communicative challenges, and she facilitates the alignment of residents to move the conversation forward. Besides translating, she makes explicit comments on the non-standard participation framework that is obviously problematic from Tilda’s perspective. In addition to this, she addresses face needs by redesigning potentially face-threatening content in Tilda’s talk (Extract 5.1a, Line 08). These brokering practices have much in common with the interactional steps involved in interpreted-mediated interaction described in previous research (Gavioli, 2015; Raymond, 2014; Wadensjö, 1998). In Extracts 5.2 and 5.3, the organization of brokering draws on a range of multimodal resources. In Extract 5.2, mutual engagement in a dancing and singing activity is facilitated via the participants’ vocal and bodily resources. As argued by Keevallik (2010: 401), description and demonstration of bodily performance is inherently a multimodal achievement. In Extract 5.3, the life-review exchange, the multimodal resources involved encompass the photos that are crucial resources for the organization of the activity. From a multimodal interactional perspective encompassing the broader environment (Goodwin, 2000), the cards with the photographs constitute material artefacts that contribute to the production and interpretation of meaningful activities. Moreover, this exercise was a recurrent activity on the ward, the actions of which were at least to some extent recognizable for some of the residents although not for all. (For a discussion of the challenges of introducing proverb games in dementia care contexts, see Lindholm & Wray, 2011). This circumstance might have facilitated the administering of this exercise across linguistic boundaries. All these contextual resources enable the Kurdish-speaking caregiver to switch between Swedish and Kurdish, designing her turns for individual recipients without excluding any party. Thus, participation and engagement in this setting are not dependent on renditions of precedent talk in another language (as in the first example analyzed). In the retelling sequence, however, as shown in Extract 5.3c, brokering is achieved through a caregiver’s explaining and relaying/redesigning content for the recipient. In this setting, Rona recounts in Swedish the resident’s Kurdish-language retelling for her colleague in a way that makes Hawa’s emotional stance accessible for her, thereby making it possible for her to share a piece of Hawa’s life history and to align socially with the resident. The moments of brokering in terms of shared focus of attention and involvement in the analyzed examples may seem momentary and minor.

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Persons with memory disorders often have difficulties with shared attention (e.g. Lindholm & Wray, 2011; Mok & Müller, 2014), which is a precondition for intersubjectivity. However, the examples make manifest the interactional steps through which caregivers involve residents in a shared activity, thereby creating opportunities for social exchange across linguistic boundaries. Taking these steps addresses the needs of inclusion and occupation, which are core issues in person-centred care, also highlighted by The Swedish Board of Health and Welfare (Socialstyrelsen, 2010). These steps are the building blocks that contribute to the residents’ wellbeing and maintenance of personhood. To quote Kitwood (1997: 83), if these needs are met, the older individual may be able to ‘expand’ as a person, and feel ‘recognized as having a distinct place in the shared life of a group’. Kitwood (1997: 84) maintains that, in social exchange, others confer identity as ‘they convey to a person subtle messages about his or her performance’. In the present study, the example of the life-review exercise stands out as an illustration of how sources of identity may both be maintained by the older person and held by others in the face of dementia and linguistic diversity. The findings presented here have implications for the organization of care work. The case of Arabic-speaking Amira, who is left alone in social isolation in a Swedish-speaking community most of the day, calls for our attention. Extracts 5.1 and 5.2, where Amira and Tilda are involved in social exchange, provide illustrations of how needs can be met. However, as mentioned in the background section, this kind of brokered communication in a group of residents is rare in our data. This finding accords with what Small et al. (2015) observe in their data, namely that caregivers’ brokering in social gatherings is short-lived. The infrequency is notable, considering the fact that three of the care workers at the somatic unit are fluent speakers of Amira’s language. The question is: what might be done to enhance communication? Needless to say, it is essential that caregivers recognize their own communicative behaviour and how this can potentially influence the inclusion – or exclusion – of care recipients with communication difficulties in shared activities. Caregivers also need to be encouraged to regard their linguistic and communicative skills as a valuable resource and a resource that can be developed. In order for that to happen, multilingual skills must be recognized and promoted as a valuable resource by caregiving institutions and by those who educate caregiving staff. For instance, a concrete way of addressing issues of inclusion might be to recruit multilingual caregivers to function as intermediaries in organized activities and social gatherings of various sorts. If caregivers’ linguistic skills were considered in the organization and planning of care work, their function as brokers would become a self-evident and a valued part of the everyday work in the care facility Another implication from our findings concerns the variety of practices involved in doing brokering. Caregivers and their managers ought to consider that brokering in different settings calls for different practices that vary in

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terms of the resources involved. Whereas some practices are multimodal achievements, others rely principally on verbal resources, requiring a high level of competence in the two languages involved. Sometimes, only basic knowledge of the resident’s language, for instance the use of fixed phrases, is enough to communicate socially. Therefore, caregivers ought to be encouraged to creatively use and develop their linguistic skills. In order to contribute to the enhancement of linguistically diverse care environments as brokers, they have to be prepared to meet the communicative demands in a variety of settings.

Acknowledgements The current study was supported by the Swedish Research Council, Grant No. 2013–2020. The authors thank Issam Said and Kemal Görgü for help with transcribing and translating Arabic and Kurdish talk in the examples.

Note (1) The study reported here is part of the project ‘Multilingual Practices and Pedagogical Challenges in Elderly Care’ (funding from the Swedish Research Council, 2014–2017).

References Adelswärd, V. (1989) Laughter and dialogue: The social significance of laughter in institutional dialogue. Nordic Journal of Linguistics 12 (2), 107–136. Bolden, G.B. (2012) Across languages and cultures: Brokering problems of understanding in conversational repair. Language in Society 41 (1), 97–121. Boyd, E. and Heritage, J. (2006) Taking the history: Questioning during comprehensive history taking. In J. Heritage and D. Maynard (eds) Communication in Medical Care: Interaction Between Primary Care Physicians and Patients (pp. 151–180). Cambridge: Cambridge University Press. Brown, P. and Levinson, S. (1987) Politeness. Some Universals in Language Usage. Cambridge: Cambridge University Press. Clark, H.H. (1996) Using Language. New York: Cambridge University Press. Del Torto, L.M. (2008) Once a broker, always a broker: Non-professional interpreting as identity accomplishment in multigenerational Italian/English bilingual family interaction. Multilingua 27 (1–2), 77–97. Ekman, S.-L. (1993) Monolingual and Bilingual Communication Between Patients with Dementia Diseases and their Caregivers. Umeå University Medical Dissertations, New Series No. 370. Umeå: Umeå University. Finnema, E., Dróes, R.-M., Ribbe, M. and van Tilburg, W. (2000) The effects of emotionoriented approaches in the care for persons suffering from dementia: A review of the literature. International Journal of Geriatric Psychiatry 15 (2), 141–161. Gavioli, L. (2015) On the distribution of responsibility in treating critical issues in interpreter-mediated medical consultations: The case of ‘le spieghi(amo)’. Journal of Pragmatics 76, 169–180; doi:10.1016/j.pragma.2014.12.001 Giles, H., Coupland, J. and Coupland, N. (1991) Contexts of Accommodation. Developments in Applied Sociolinguistics. Cambridge: Cambridge University Press.

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Goffman, E. (1981) Forms of Talk. Oxford: Basil Blackwell. Goodwin, C. (1981) Conversational Organization: Interaction Between Speakers and Hearers. New York: Academic Press. Goodwin, C. (2000) Action and embodiment within situated human interaction. Journal of Pragmatics 32 (10), 1489–1522. Heritage, J. (1984) A change of state token and aspects of its sequential placement. In J.M. Atkinson and J. Heritage (eds) Structure in Social Interaction. Studies in Conversation Analysis (pp. 299–345). Cambridge: Cambridge University Press. Heritage, J. (2003) Designing questions and setting agendas in the news interviews. In P. Glenn, C. LeBaron and J. Mandelbaum (eds) Studies in Language and Social Interaction (pp. 57–90). Mahwah, NJ: Lawrence Erlbaum. Heritage, J. and Clayman, S. (2010) Talk in Action: Interactions, Identities and Institutions. New York: Wiley-Blackwell. Jansson, G. (2014) Bridging language barriers in multilingual care encounters. Multilingua 33 (1–2), 203–234. Jansson, G. and Wadensjö, C. (forthcoming) Language brokering in multilingual caregiving settings. Communication & Medicine 12. Jefferson, G. (1984) On the organization of laughter in talk about troubles. In J.M. Atkinson and J. Heritage (eds) Structure in Social Interaction. Studies in Conversation Analysis (pp. 346–369). Cambridge: Cambridge University Press. Keevallik, L. (2010) Bodily quoting in dance correction. Research on Language and Social Interaction 43 (4), 401–426. Kendon, A. (1970) Movement coordination in social interaction: Some examples described. Acta Psychologica 32, 100–125. Kitwood, T. (1997) Dementia Reconsidered. The Person Comes First. Maidenhead: Open University Press. Kitzinger, C. (2013) Repair. In J. Sidnell and T. Stivers (eds) The Handbook of Conversation Analysis (pp. 229–256). Malden/Oxford: Wiley-Blackwell. Lindholm, C. (2008) Laughter, communication problems, and dementia. Communication and Medicine 5 (1), 3–14. Lindholm, C. and Wray, A. (2011) Proverbs and formulaic sequences in the language of elderly people with dementia. Dementia 10 (4), 603–623. Linell, P. (1998) Approaching Dialogue. Talk, Interaction and Contexts in Dialogical Perspectives. Amsterdam/Philadelphia, PA: John Benjamins. Linell, P. (2009) Rethinking Language, Mind, and World Dialogically. Interactional and Contextual Theories of Human Sense-making. Charlotte, NC: Information Age. Mok, Z. and Müller, N. (2014) Staging casual conversations for people with dementia. Dementia 13 (6), 834–853. Müller, N. and Guendouzi, J.A. (2009) Discourses of dementia: A call for an ethnographic action research approach to care in linguistically and culturally diverse environments. Seminars in Speech and Language 30 (3), 198–206. Ng, S.H., He, A. and Loong, C. (2004) Tri-generational family conversations: Communication accommodation and brokering. British Journal of Social Psychology 43, 449–464. Ochs, E., Schegloff, E.A. and Thompson, S.A. (eds) (1996) Interaction and Grammar. Cambridge: Cambridge University Press. Plejert, C., Jansson, G. and Yazdanpanah, M. (2014) Response practices in multilingual interaction with an older Persian woman in a Swedish residential home. Journal of Cross-Cultural Gerontology 29 (1), 1–23. Raymond, C.W. (2014) Conveying information in the interpreter-mediated medical visit: The case of epistemic brokering. Patient Education and Counseling 97 (1), 38–46. Sacks, H. (1975) Everyone has to lie. In M. Sanches and B.G. Blount (eds) Sociocultural Dimensions of Language Use (pp. 57–79). New York/London: Academic Press. Sacks, H. (1992) Lectures on Conversation II. Cambridge: Blackwell.

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Saunders, P.A. (1998) ‘You’re out of your mind’: Humor as a face-saving strategy during neuro-psychological examinations. Health Communication 10 (4), 357–372. Saunders, P.A., Medeiros, K., Doyle, P. and Mosby, A. (2011) The discourse of friendship: Mediators of communication among dementia residents in long-term care. Dementia 11 (3), 347–361. Schegloff, E.A., Jefferson, G. and Sacks, H. (1977) The preference for self-correction in the organization of repair in conversation. Language 53 (1–2), 361–382. Skårup, T. (2004) Brokering and membership in a multilingual community of practice. In R. Gardner and J. Wagner (eds) Second Language Conversations (pp. 40–57). London: Continuum. Small, J., Chan, S.M., Drance, E., et al. (2015) Verbal and nonverbal indicators of quality of communication between care staff and residents in ethnoculturally and linguistically diverse long-term care settings. Journal of Cross-Cultural Gerontology 30, 285–304; doi:10.1007/s10823-015-9269-6. Socialstyrelsen (Swedish National Board of Health and Welfare) (2010) Nationella riktlinjer för vård och omsorg vid demenssjukdom 2010. Stöd för styrning och ledning [National Guidelines for Health-care in Dementia 2010. Support for Governance and Management]. No. 2010-5-1. Stockholm: Socialstyrelsen. Traverso, V. (2012) Ad hoc-interpreting in multilingual work meetings: Who translates for whom? In C. Baraldi and L. Gavioli (eds) Coordinating Participation in Dialogue Interpreting (pp. 149–176). Amsterdam: John Benjamins. Wadensjö, C. (1998) Interpreting as Interaction. London/New York: Longman.

Appendix 1: Transcription Conventions The following conventions have been used in this chapter. They are adapted with some modifications from Ochs et al. (1996). ::: = [] ((nods)) (1.6) (.) (xxx) °° yes . ,

Colons are used to indicate the prolongation of the sound just preceding them. The more colons, the greater the elongation. The equal sign indicates that utterances follow immediately after one another with no discernible silence between them. Brackets indicate where overlap begins and where it ends. Double parentheses mark the transcriber’s comment on how something is said or what happens in the context. Numbers in parentheses indicate silence, approximately represented in 10ths of a second. Indicates micropause. x in parentheses indicates something being said, but no hearing can be achieved. Degree signs indicate talk markedly softer or quieter than the adjacent talk. Underlining is used to indicate some form of stress or emphasis either by increased loudness or higher pitch. The period indicates a falling or final intonation contour. A comma indicates ‘continuing’ intonation, not necessarily a clause boundary.

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¿ ? ↑ >
Δ--->> --->>Δ >>---…….. ,,,,,,,, cha im #

delimit descriptions of one speaker’s look delimit descriptions of another speaker’s look delimit descriptions of one speaker’s actions delimit descriptions of another speaker’s actions for each participant, a specific symbol is used action described continues across subsequent lines action described continues until and after the end of the extract action described continues until the same symbol is reached action described begins before the beginning of the extract preparation of the action retraction of the action participant doing the action is identified in lower case when s/he is not the current speaker or when the gesture is made during a pause image indicates the exact moment at which the image was recorded (Mondada, 2006)

Appendix 2: Verbal Transcription Conventions 12 [

Numbers in the head of each line indicate the number of that line. For example, the number in the left-hand margin indicates the line number 12. Two left brackets bridging two lines, one above the other, indicate the place of overlap

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[ ] ] = (0.5) (.) :: ? Word °° {} >
°aber es ist deutlich zurückgegangen° ° = . ?

abrupt stop in articulation length of the pause micro-pause (a pause less than 0.2 seconds) in-breath overlapping utterances elongation (more colons demonstrate longer stretch) surrounds talk that is spoken faster soft speech contiguous utterances (latching) falling intonation rising intonation

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Challenges and Experiences in Training Multilingual, International Direct Care Workers in Dementia Care in the United States Boyd Davis and Margaret Maclagan

Introduction As the numbers of frail and cognition-compromised older persons increase, there is an expanding need in country after country for more nursing assistants and home care workers to care for them. Governments and healthcare corporations are beginning to examine the role of multilingual migrant direct care workers and the training challenges they provide, especially when the migrant workers or their care recipients do not match the majority language of the residence or community. This chapter focuses on the international direct care workers who care for those with dementia. The major focus is on communication, both communication with the direct care workers themselves and communication between these workers and those they care for. Although communication is essential for both the caregivers and the residents they care for, very few programmes actually focus on ways to improve carer–resident interaction. We first provide brief background information on direct care workers and their role and importance in caring for persons with dementia. We then describe our experiences in offering training programmes for direct care workers in the United States. Direct care workers in healthcare offer hands-on care to individuals. Ideally, they are certified as having received training for patient care, and their work is supervised by professionals in healthcare such as registered nurses. However, not all such workers are certified by an association or institution 206

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offering accreditation. In addition, different countries have different requirements for credentials and certification. In a growing number of countries, eldercare is increasingly offered by migrant international direct care workers (Chen, 2016), either in formal settings such as nursing homes or long-term care communities, or in the informal settings of adult day care centres or the home. These international care workers may be recruited by agencies designed to recruit caregivers for the very old and the very young, or they may simply arrive in a country and seek work as a nanny or as an eldercare worker. The number of people with dementia (PWD) is increasing rapidly throughout the world. In 2015, 5.3 million Americans had Alzheimer’s disease and the number is projected to grow to 7.1 million by 2025 (http:// www.alz.org/facts/#quickFacts). The need for people to act as carers continues to increase as the number of PWD rises. Within the United States, many of those who offer direct care to PWD are immigrants. Some care workers come as refugees, others as new immigrants, and still others are family members of families already in the United States. According to Stone (2011), most foreign-born workers live in metropolitan areas and their proportion within the direct care workforce is growing. A quarter of home health aides and one-fifth of nursing home aides in the United States are foreign born. Chen et al. (2013: 1908) report that ‘between 2001 and 2009 the number of foreignborn direct care workers in the U.S. nearly doubled from 375,820 to 676,200 due to the demands of the growing aging population’. Lowell (2012: 12) notes that, over this same period, the ‘number of native healthcare workers grew by 32.4 percent and the number of the foreign born by 62.0 percent’. Many of these immigrant direct care workers come from cultures where it is important to care for PWD within the family structure (Spanish caregivers call this concept familismo). In the United States, PWD are often cared for in residential settings rather than at home. This surprises many caregivers from non-Anglo cultures because they see placing a relative in residential care as expressing ‘low family feeling’. Carers must be trained in the mechanics of dementia care. They need to know how to physically care for PWD in terms of bathing, dressing and feeding. Such training is essential so that carers can carry out their tasks safely. Workshops on clinical issues such as wound care or pressure ulcers are typically provided to aides by permanent staff in the various residences. However, carers also need to be trained in ways to communicate with PWD. Such training is usually not provided by the residential settings where PWD live and many carers receive little or no training in communicating with PWD, either on the job or in courses that offer formal training leading to certification as a caregiver, such as a certified nurse aide (CNA). In spite of their lack of training in communication, carers are often the people with the greatest contact with the actual PWD within continuing care residences. When carers or residents are not first-language speakers of English, the potential for misunderstanding is always present. For example

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Dong and Chang (2014) report that their Chinese-American patient understood a diagnosis of Alzheimer’s disease to mean he was ‘catatonic and crazy’. At the time of diagnosis, he was still functioning well within the community in spite of increasing memory problems. Not surprisingly, he totally rejected the diagnosis and rejected any medication. His eventual descent into full dementia was potentially more rapid than it needed to be. Learning language- and culture-specific expectations for speech to and by older multi-ethnic persons is increasingly important. Mentes et al. (2015: 1) explain that by 2050, ‘the non-Latino, single-race White population in the United States will be in the minority’, with ‘one in four older adults [being] from an ethnic minority’; those who will be 65 and older will make up a quarter of the population. Discussions of conflicts from differing communication styles involving multilingual aides as well as multilingual residents are beginning to appear. Kim et al. (2014b: 186) describe the expectations for polite speech held by Korean-American residents in nursing homes. These expectations include avoidance of the eye contact so often assumed to be essential in conventional, non-multilingual training, and the use of the appropriate formal style of Korean. Kim et al. (2014a: S11) state, ‘If the NAs [nursing assistants] use a different language with different cultural experiences, KA [Korean American] residents may experience communication challenges such as misinterpretation of the verbal and nonverbal expressions of NAs’. Small et al. (2015) review the range of staff behaviour challenges from nonverbal as well as verbal usage in multicultural, multilingual long-term care residences. They say that ‘Not using a language known by the resident … often leads to a communication predicament insofar as the interlocutors fail to effectively communicate their physical and psychosocial needs and wishes’ (Small et al., 2015: 29). Although they are talking about Canada, their comments are valid for the United States. Spencer et al. (2010: 8, cf. 43) have found that communication difficulties in eldercare are particularly keyed to problems with colloquial and dialect forms of English. Direct care workers provide essential care for PWD. In order for them to interact appropriately for the PWD under their care, carers need training in communication as well as in the practicalities of dementia care. As the numbers of PWD increase, more direct care workers will be required. In the next section we describe in detail programmes we have designed and implemented in the United States to train international direct care workers who are already working with PWD or who plan to work with PWD.

Working with International Caregivers in the Urban Southeast of the United States We now turn to training programmes in appropriate communication for PWD that we have offered for foreign-language paraprofessional or direct

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care workers in dementia care in the United States. We present one programme where the outcomes were good and the participants expressed satisfaction, and one programme where, in spite of careful planning, the initial programme needed considerable modification in order to meet the needs of the participants. We first outline the overall need for training in the southeastern United States and then describe the two programmes.

Training needs for paraprofessionals in the Southeastern United States In the United States, ‘paraprofessional’ is one term for persons who offer unlicensed assistance to licensed or registered healthcare professionals. Paraprofessionals include CNAs, unlicensed home healthcare aides and hospital attendants. Over half of them are minorities; over half have a high school diploma or less. According to the Paraprofessional Healthcare Institute (PHI, 2014), roughly 5 million direct care workers will be needed by 2020, an increase of a million above the current workforce. PHI cites findings by Chen et al. (2013) that numbers of foreign-born workers have doubled between 2001 and 2009, and currently comprise between 20% and 24% of the direct care workforce. They come primarily from Mexico, Haiti, Jamaica and the Philippines. All of our training to date has focused on developing, implementing and evaluating materials for (first- and) second-language direct care workers about communication as culturally competent care for older multi-ethnic persons with dementia. Our materials fell into two categories: (a) multiple sections of the certification course for nurse aides at a regional community college in the urban South (Charlotte, NC); and (b) in-service training workshops for (first- and) second-language caregivers on the job at local memory care residences linked administratively to long-term residential care communities in the same city. Participants at each venue faced similar challenges with regard to language and culture. They needed information about and practice with the colloquial use of language, specific technical vocabulary, and cultural and sociopragmatic issues such as ways of issuing directions or showing respect nonverbally as well as verbally. Small et al. (2015: 291), for example, notes the prevalence of ‘pointing, modeling, repositioning, touching, and head nodding’ in what they call ‘mismatch’ situations, where the caregiver’s and resident’s languages do not match. These gestures may not always be used to enhance communication, as when ‘Tina’, a Filipina aide working at the memory unit of the residential care facility ‘Pleasant Meadows’ consistently used head tossing and eye-rolling to signal deprecation of one resident’s behaviours. ‘Madge Wilkinson’, a resident who speaks with some fluency to the non-international aides, has developed a behaviour of screaming, groaning or growling whenever Tina approaches her, partly in response to what she sees as Tina’s impoliteness to her:

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Extract 9.1 11.05: Tina has finished making the bed, and moves toward Madge Wilkinson MW: T: MW: T:

growls and groans Are you pooping? No (howls) What’s the trouble? Why’re you howling? What’s this screaming about? Tina turns away, rolls her eyes toward the camera, shrugs her shoulders and laughs. Madge Wilkinson shuts down and remains silent until Tina leaves.

(Davis et al., 2016) International caregivers also needed to understand the significance of customs such as traditional festivals, and of course they needed knowledge regarding dementia and US attitudes towards institutionalization for dementia care as opposed to the familismo, or expectations for family-based care which characterizes the predominant cultures in both sets of participants’ homelands. Each group provided additional language-cued challenges keyed primarily to the training site.

Central Piedmont Community College course to certify international nurse aides: A programme that was successful from its inception The project, Culturally Competent Materials, was funded by the National Alzheimer’s Association for five years from 2005 to 2009. Its aim was to develop, implement and evaluate curricular materials for communitycollege nurse aide training courses in Charlotte, NC. The materials were designed for (first- and) second-language paraprofessionals, and focused on communication in dementia care. They were designed to emphasize that communication was an essential part of every aspect of dementia care. Their purpose was to train prospective and current CNAs to increase successful social interaction with PWD. The plan was to continue offering the programme for both first- and second-language students after the funding from the National Alzheimer’s Association had finished. Because of this, the programme was not designed as a stand-alone course in English for specific purposes (ESP). Instead, it was a redesign of the existing pre-nursing curriculum course. The redesigned course incorporated ESP techniques to make content and practice more easily comprehended by non-native speakers who had neither the money nor the time to participate in a full sequence of training courses. Each year we developed, implemented and evaluated additional materials that responded to specific linguistic and cultural needs. The course lasted for 75 hours and was

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designed to prepare students for the state-administered certification exam. The exam combined a demonstration of practical skills such as bathing, with 60 multiple-choice questions and 10 reading comprehension questions (http://cnathrive.com/becoming-a-cna-in-north-carolina/). Participants taking the course at the community college had free tuition as part of the grant sponsorship from the National Alzheimer’s Association. They came primarily from Mexico and Colombia, and most were joining their families who had already relocated to the area for work in construction. They were recruited from throughout the community through flyers distributed by various cultural groups such as the Latino Coalition. They knew they would be given assistance in learning both technical and colloquial English, and would have opportunities to ask questions about job-based expectations and pragmatics such as identifying directions and questions. Over the first three years of the grant funding, we refined and offered 15 different sections of the course with seven different instructors, to 400 students. Each of the instructors was a licensed nurse with no training in ESP or ESL (English as a second or other language) teaching methods. The materials had to do the job for the instructor, since there was neither time nor funds allocated to present formal or explicit training to instructors in how to meet the needs of second-language learners. Although the 16 units required for CNA certification by the state included a unit on communication, we chose to incorporate vignettes with mini case studies of dementia care challenges throughout all units, to emphasise that communication with a person with dementia is a necessary part of every aspect of dementia care. All the materials and modules were designed to focus on communication in every aspect of dementia caregiving. They focused on improving cultural competence involving communication with PWD around eating, bathing, and similar activities of daily living. Their immediate purpose was to train prospective and current CNAs to increase successful social interaction with PWD. If CNAs employ culturally appropriate collaborative conversational techniques and content, this improves the quality of life for PWD and enhances their willingness to participate in activities of daily living. Accordingly, the course had the following components: • •

In-class. Practice of technical skills and role-playing for communication challenges. Online. Moodle course management package, which included: Key vocabulary for a unit; Summary of unit; List of skills to be learned; Vignettes with mini-case study. English tutorial for first four weeks of class in Year 1. Built-in English practice for Years 2 and 3. Practicum for last four weeks of class, with supervised caregiving to PWD. ○ ○ ○ ○

• • •

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We present first an overview of the programme planning. We then give details of four specific aspects of the programme: colloquial conversation; technical vocabulary; cultural and sociopragmatic issues affecting language use; and dementia-specific conversation techniques. We conclude this section with a brief description of the outcomes from and evaluations of the Culturally Competent Materials programme.

(a) Elements of the programme The planning for each module is shown in Table 9.1. We found that working at this micro-level of organization was essential if we were to be able to provide second-language learners with linguistically and culturally appropriate lexis associated with geriatric dementia care. The vocabulary needed to include everyday words and also technical terminology such as ‘perseveration’ and specific dementia care communication techniques such as ‘quilting’.

Table 9.1 Extract, blocking online materials to fit modules Module

Activities and PowerPoints

Caregiver roles: qualities, definitions, responsibilities

• Who Are We? Role & Talk (PowerPoint focusing on role on communicating) • Vocabulary Related to Caring for Ageing Persons (review of vocabulary related to caring for older persons; matching activity; language focus = vocabulary) • Role & Talk Vignettes: – Mrs Patel and perseveration – Mr Tretyakov and a different language – Ms Oxendine and the stigma of AD • Caregiver’s Phrasebook (focus on greetings and conversation-starters) • Cultural Perceptions: Space, Time and Situation (PowerPoint slides of scenarios) • Go-aheads (PowerPoint illustrating how to use phrasal contours to sustain talk) • Quilting (PowerPoint illustrating technique to facilitate reminiscence) • Taboos and Conflicts (PowerPoint slides on insults, arguments, co-workers) • Swearing (in AD Speech) (PowerPoint slide on swearing in dementia) • Social Changes in Ageing (focus on how ageing affects the self and family; chart activity; language focus = vocabulary, writing definitions, listing)

Culture: overview, impact on family; forms of address, greetings, taboos; conversation starters

Source: © Russell-Pinson; see Davis et al. (2008).

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(b) Colloquial conversation The online vignettes were typically presented as PowerPoint slides. They used a question-answer format to attract reader attention, and provided practice with conversational patterns such as description, definition or explanation. The vignettes were used for role-play in class meetings and accompanied in-class practice with technical skills. For example, bathing is a major source of challenging behaviour in memory care residences. The vignette about ‘Mr Narita’ began by saying: Mr Narita really, really doesn’t want to take a bath. And he doesn’t want to take off his underwear in front of you. As you walk Mr Narita toward the shower, do you (a) Insist that he must take off his underwear? (b) Tell him everything you are going to do before you do it? (c) Ask him if he is finally ready to be clean? The explanations about why (a) and (c) could be perceived as insulting and inappropriate became part of class discussion and role-plays illustrating better communication techniques.

(c) Technical vocabulary With the permission of Elsevier/Mosby publishers, we scanned two chapters of Sorrentino (2003), the course textbook, using the then-extant email version of the AMALGAM tagger (http://www.scs.leeds.ac.uk/amalgam/ amalgam/amalgtag3.html; 2004) to tag each word for the part of speech and set them out by frequency of occurrence. These words were used in creating vignettes and writing prompts in order to reinforce vocabulary, and were reviewed in tutorial sessions (see Table 9.2). Table 9.2 Extract: Most frequent words in chapters on role of nurse aide and communication Nouns

Verbs

-ing forms (nominal, verbal)

nurse person bed aide care individual body position death minutes room client persons type behaviour

tell ask remove place apply let touch position lower protect provide make sure prevent raise fold

caring using allowing working turning positioning dying moving offering establishing preparing demanding making

Source: Sorrentino (2003).

(d) Cultural and sociopragmatic issues affecting language use Cultural attitudes about dementia play a large role in the expectations of international aides as to the nature of dementia. Cultural attitudes also influence their understanding about the nature of institutionalization. The home cultures of many of the students assigned a heavy stigma to dementia, and

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many students assumed that a PWD was childlike or crazed (Davis & Smith, 2012). The second-language students often revealed that they felt family members should be handling the care of the PWD instead of placing the PWD in an institutional setting. In addition, the language of the supervisors and peers in the care residences often confused multilingual CNAs. Supervisors and peers regularly used imperatives without politeness formulas to give directions: Take this to the nursing station. Clean Ms Jansen’s room first. This initially confused the CNA students, whose linguistic and cultural backgrounds required additional politeness. The students found that in-class role-plays for giving directions and taking messages were helpful. Equally helpful were discussions on appropriate ways of addressing residents. These discussions emphasized that it was not appropriate to address residents in Elderspeak (Kemper & Harden, 1999; Williams et al., 2009). Elderspeak is a high-pitched language register that sounds like baby-talk, and uses endearments or first names such as ‘Honey’ or ‘Esme’ instead of last names and a title (‘Ms Walker’). As part of their training in cultural and sociopragmatic issues affecting language use, the students used online resources such as the Stanford Ethnogeriatric Competencies (http://sgec.stanford.edu/competencies.html). They were coached to develop brief skits to illustrate cultural differences around key pragmatic areas. In particular they focused on time (when are you late?), space (how close can you stand to a resident?), touch, and gendercued preferences for body care. For example, unless the persons giving care are family members, older Muslim men and women generally prefer to be touched only by persons of their own sex or gender (Queensland Health, 2010: 12). In areas such as time, space, touch and gender preference, international caregivers can share their own experiences from elsewhere in the world and thus offer a great deal to their locally based co-workers. However, because international workers are often concerned about their pronunciation and aware that their co-workers find them to be ‘different’, workshop instructors must often encourage them to speak about their experiences. Talking about upcoming meals is a frequent topic in assisted living. Dietary preferences for residents may be cultural, faith-based or individual. In addition, a PWD may often become confused, as the disease progresses, with whether or not they have eaten a meal. In some instances they revert to expectations about eating from an earlier time in their life, and direct their questions to the aide. Figure 9.1 is a vignette where a Hispanic resident’s cultural expectation for meal times conflicts with the expectations of the memory care residence where she is now living. The international assistant is often expected to ‘know’ this information and to use conversation to distract or redirect the resident’s interest.

(e) Dementia-specific conversation techniques Multiple discussions were held in each course section about the need felt by residents with dementia for social interaction and conversation during all

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Vignette 9.1 Mrs Morales doesn’t want to eat lunch at noon. However, later in the afternoon, she starts talking about being hungry. She has spent most of her life eating lunch around 2 pm and supper at almost 9 pm. Before you go to get Mrs Morales a snack, what will you do? (a) Tell her it’s almost time for dinner. While reassuring, this may not be true – and you may need to say this several times once you start (b) Observe and record what she eats for several days to check her eating patterns, and check with your supervisor. This is a better response. Nutrition is complicated. Cultural habits may be the cause here, or something else may be going on. You may want ask your supervisor or her doctor to check her.

Figure 9.1 Sample vignette: Asking for a snack Source: Photo © Boyd Davis.

possible daily activities and why residents should not be talked over, talked across or talked for (Davis & Pope, 2010). Three specific techniques were both used and evaluated during the students’ practicum with real patients: go-aheads, quilting (Moore & Davis, 2002), and the caregiver’s phrasebook. Go-aheads are two-syllable, backchannel responses designed to encourage the PWD to continue speaking. Go-aheads are shown in the diagram in Figure 9.2. CNA students were encouraged to use these minimal two-syllable responses whenever possible to encourage the PWD to keep talking.

Figure 9.2 Two-syllable go-aheads Source: © Boyd Davis.

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In quilting, the unimpaired conversation partner repeats a phrase or sentence spoken by the PWD as a way to prompt continuation or additional detail. The unimpaired partner returns to that detail in a subsequent conversation. In this example, LM, a researcher, collaborates with ‘Larry Washington’ (LW), by repeating the single word ‘rosebud’, to prompt additional detail about his mother’s flowers. Since Mr Washington is in his late 80s, we assume that his mother died a number of years ago. LW: LM: LW: LM: LW: LM: LW: LM: LW: LM:

They got a lot of, they got a lot of rosewoods on the [bus] stop. A lot of rosebuds on the stop? Yeah. Ummm … That’s going to be awfully pretty when they open that up! Oh, absolutely! Yeah. You like rosebuds, too? That’s my favorite! * * * [section deleted about choosing a favorite] … That makes you happy doesn’t it? Did you have a bunch of rose bushes when you were growing up? Did your Mama plant rose bushes? LW: My mother had awfully pretty ones this year. LM: She did? This year? LW: She won’t let me get in them! She’s afraid I’ll trim it up! (Davis & Pope, 2010: 39) The phrasebook emphasizes that, eventually, the PWD may have very limited verbal skills, and may relate better using nonverbal communication. Nevertheless, PWDs will still want the social contact of having a conversation. As part of our continued emphasis that communication is an essential part of all interactions with PWD, the phrasebook identifies a number of techniques for having informal conversations with confused patients while doing something else. Conversations can take place while the CNA is making the bed, taking the person to an activity, doing personal care, serving them food/helping to feed them, heading for the bath or helping the PWD to get dressed. In addition, students practised using sayings about the weather, identifying colours and decorations associated with holidays such as Hallowe’en, or talking about pets. Students practised developing topics from what the PWD could see while walking along, as in Vignette 2 with ‘Mr Lee’. Many PWD exhibit ‘sun-downing’ which is agitated behaviour late in the day (Figure 9.3). Vignette 2 shows how a caregiver can calm a resident – here, ‘Mr Lee’ – who is sun-downing, by talking to him about what they can see around them as they walk. In addition, the phrasebook illustrated ways to start and end a conversation (see Table 9.3). Students practised these with each other in class. In

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Vignette 9.2 You can use conversation to redirect sun-downing. Review this scenario: ‘Mr Lee’ uses his walker every afternoon to walk back and forth. He seems very confused. Before you redirect his activity, what do you do? •

Tell him he has to sit down and be good. This is not a good choice, because it sounds as if you were talking to a child, and he is certainly not a child.

•

Ask him where he thinks he is going. Start with something else first. This could be heard as a confrontation.

•

Walk beside him and talk about what you both can see. This works well. You can reassure and calm ‘Mr Lee’ with even a very short conversation. Then you may be able to redirect his activity.

•

To keep in mind: Avoid asking Who-What-Where-WhenWhy questions when someone is walking. Often the person who has dementia will stop walking in order to focus on the question, lose their balance, and fall.

(Davis et al., 2011)

Figure 9.3 Sun-downing vignette Source: Photo © Boyd Davis.

particular they practised waiting for a response from the PWD before starting a new topic.

Programme outcomes and evaluation After implementation of the enhanced materials for the Culturally Competent Materials programme, student outcomes at certification level improved. Annual pass rates for nurse aide certification of both first- and second-language students increased to 90% on average from a previous pass rate of 80%. Instructors reported that, because the materials were readily accessible, fewer second-language learners dropped out. The materials were available online so that students were offered greater opportunity to practise and repeat their content and testing. Language skills, predominantly reading, rose an average of two years per student as assessed in standardized pre- and post-testing using the Test of Adult Basic Education (www.ctb.com/tabe) administered through the testing services at the Central Piedmont Community College.

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Table 9.3 Phrasebook extract Greetings and closings In the room, after you knock, or when you see the person Hi, Hello Good to see you, Mr/Mrs/Ms _______ Good morning/Good afternoon/Good evening I’m ______ (your name), and I’m ready to ______________ (clean the room, help you get dressed, take you to breakfast. …) [now choose one and wait for answer: count to seven before starting a new topic] How’s it going? How’s everything? What’s happening? What’s new? [next try at starting conversation] How do you like the weather today? It’s very _____ (cold, hot, nice, rainy) How do you feel? How are you feeling today? Is everything okay? [wait – wait – wait for the answer] That’s good. OR Sorry to hear that. That’s too bad. Closure – When you have to leave: I’m sorry, but I’ll have to leave now. I’ll see you _____ (later, this afternoon, tomorrow, next week) Good night OR Good-bye OR Bye, Mr/Mrs/Ms ____________ Source: © Boyd Davis.

During the fourth year of the Culturally Competent Materials project, presentations were given to train instructors at other community colleges in using the materials and in accepting an approach which valued and supported international, foreign-born or second-language healthcare students. To further test the applicability of the materials, we surveyed four cohorts of first- and second-language students in the full nursing curriculum (n = 200) for their response to the internet-delivered module on dementia-specific communication techniques. Just over 30% (n = 68) of the students responded to the voluntary survey. Forty-seven reported using the content and techniques of the communications model during their clinical experience and another 13 reported that they had ‘maybe’ done so. Sixty-four reported that the dementia communications module had contributed to their delivering safer and more responsive patient care.

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In-service workshops for international staff at memory care/ assisted living residences: Programmes that required changes in order to be fully successful In order to meet the needs of the participants and the directions of the supervisors and administrators, the aims of the non-academic programmes were: (a) To provide information about cultural and sociopragmatic issues such as: (i) Specific US festivals; (ii) US attitudes towards institutionalization for dementia care; (iii) Ways of issuing directions or showing respect nonverbally as well as verbally. (b) To provide situations where the participants could practise the colloquial use of language. Over the decade during which we developed course materials for training second-language paraprofessionals, we also presented two types of inservice workshops to staff who were already working in memory care and assisted living residences. The workshops aimed at training these professional caregivers to see everyday routines as opportunities for communication with PWD, including with those who have limited language skills (Sprangers et al., 2015). The first type of in-service course involved interactive single-session presentations focused on communication techniques for dementia care. They usually emphasized the use of quilting and go-aheads in everyday conversations and used the caregiver phrasebook to encourage the professional staff to accommodate to language change over time from PWDs. The second type of in-service course involved interactive multi-session presentations emphasizing the role of conversational narrative and reminiscence in person-centred care. These sessions used programmes such as the STORIES curriculum discussed below. In both types of in-service, we continued our focus on communication as care in dementia. The points about communication as care were introduced one at a time, explained, demonstrated and then practised, usually through small-group interactions or role-playing. In this section of the chapter, we first provide background to the in-service courses. We then describe the single-session workshops that were well received, followed by the multi-session workshops which required modification to our initial plans. We finish with a section on colloquial language.

Background to the in-service courses The in-service training programmes we offered for both local and international caregivers emphasized the importance of learning to initiate and

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sustain casual conversation with those they cared for, as they were offering care. We offered these workshops without charge as a way of thanking staff and administration for supporting our work with residents who had dementia. Their content was recommended by administrators. With very few exceptions, we have not been allowed to record or reconstruct from memory conversations with staff or management as they interacted with PWD in the assisted living residential communities with whom we worked. Most residences were operated by franchises whose legal offices were chary of allowing any recording of staff, in case a staff member’s words or behaviours should give concern to a resident’s family member and result in legal action or the relocation of a patient. Accordingly, we can report only general features of the communication between qualified international nursing assistants or qualified nursing staff and residents or patients as opposed to the actual conversations between residents and international aides. Some of our in-service workshops were very well received. Others, no matter how well we thought they were designed, were not as successful. Unless we asked supervisors to let us work just with international staff, they were included with the local staff and generally stayed very quiet. The second-language caregivers who were already on the job were typically encouraged to attend the workshops in order to accrue credits towards other certifications or licensure, and to build bridges with their first-language coworkers. Because they had been hired to work at a residential caregiving site, typically bringing some experience with healthcare in geriatric settings in the United States or in another country, they were assumed to already understand local and national customs. This was the case, however, only if they had entered the United States considerably in advance of finding employment. They were also assumed to be able to learn both technical and colloquial English on the job from first-language, multi-ethnic, multiracial and multidialectal peers and administrators whose language and performance expectations they were expected to understand without training. That some of them managed to do this is testimony to their inherent skills and commitment to their work. They worked in a job culture that primarily furnished dementia patients with task-driven long-term care (McLean, 2006) as opposed to patient-centred, communication-focused care. Interestingly, the literacy skills of foreign direct care workers in long-term dementia care residences were often higher than those of local workers in this urban South area, where minority local workers over the age of 45 had often received limited schooling and had low literacy. This situation sometimes led to the local participants withdrawing from the residential training programmes, because they found the written materials too difficult in that the sentences were complex and the vocabulary advanced above the fourthgrade level.

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Brief, single-session workshops on dementia communication techniques: Types of workshops Over the decade in which we collected conversations with PWD living in special units in assisted living residential communities such as ‘Pleasant Meadows’ and ‘Forest View’ (2002–2012; see Hancock et al., 2008), we regularly offered single-session presentations on dementia care communication to CNAs and their immediate supervisors. These in-service sessions incorporated role-play and lasted for half an hour to accommodate scheduling for shifts. This was, as mentioned above, a way to pay back the residential communities’ generosity in allowing us to record and work with residents in our study of language and its sociopragmatics in dementia. The workshops were also a way to pay back the permission we were given to deposit our recordings in the online web portal, Carolina Conversations Collection (http:// carolinaconversations.musc.edu; see Pope & Davis, 2011). As discussed below, we offered these to small groups of international-only CNAs roughly twice a year. Typically, staff members attending short workshops were not reimbursed for their time. Presentations were given at either the end of the morning or at the beginning of the afternoon shifts so that the staff receiving the training could have their duties covered by the staff on the other shift. Role-play and handouts with graphics or cartoon drawings allowed us to scaffold the presentations to accommodate international staff whose conversational skills were more limited. The three most frequently requested presentation sets by nurse supervisors for both first- and second-language aides were: (A) dementia conversation techniques of quilting, go-aheads and the caregiver’s phrasebook, as described above; (B) conversation techniques for handling repetitive questioning, avoiding Elderspeak and using preferred forms of address, typically presented as foreign-language conversation drills; and (C) especially for international aides, cultural issues. Administrators requested that we present information in an informal, conversational style; the small groups were usually comprised of four to five aides, meeting in areas normally reserved for staff lunch or breaks and recommended to staff by administrators and supervisors. Attendance was voluntary and evaluation was handled informally in conversation, as participants told us what they thought helpful. Both international and local aides reported that they felt more confident in addressing residents after learning the dementia conversation techniques in Set A although, as with many studies reported in Schulz et al. (2002), we saw no clinical significance in behavioural changes post-workshops. In the (B) set of workshops, international aides were particularly interested in ways to address residents. Many had been taught as children in their home language and culture to address elders as Auntie or Grandfather or Madame, and

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assigning a polite Mr, Mrs or Ms and adding the last name was new to them. Talking about the high-pitched, sweet-sounding Elderspeak usually led to discussions about the nature of dementia and whether it was an unavoidable or stigmatized ‘second childhood’. How to handle repetitive questions bothered everyone, regardless of language facility, and most aides were happiest with posting calendars or writing answers to frequent questions on cards which could be handed to a resident (Bourgeois et al., 1997; and suggested by most websites from dementia organizations such as the Alzheimer’s Association). Set (C) on cultural issues was offered only to international aides. This set talked through a home-made caregiver’s calendar in which predominantly secular holidays for each month were listed, along with culturally symbolic colours, common stories or songs, expected treats or sweets, and whether gifts were anticipated. The six assisted living residences with which we worked from 2000 to 2012 typically decorated windows and doors for each of the US holidays, which included: January/New Year’s Day; February/ Valentine’s Day; March/St Patrick’s Day; April/April Fool’s Day; May/ Mother’s Day; June/Father’s Day; July/Fourth of July; September/Labor Day; October/Hallowe’en; November/Thanksgiving. Christmas, Easter, Passover and Hanukkah were also included. Staff were expected to help decorate and to talk about the decorations and the holidays while taking residents to meals or activities. However, not all of these holidays are celebrated outside English-speaking countries and some are celebrated on slightly different dates. International aides were often unsure about how to talk about the holidays or what kind of participation was expected from them. The most problematic celebration was Hallowe’en. A number of international cultures do not find witches and ghosts to be harmless, and few cultures use orange and black as symbolic colours.

Multi-session workshops on dementia communication techniques: Reminiscence activities and the STORIES curriculum Reminiscence activities are often established in long-term care settings as a way to encourage social contact among residents, to promote identity retention for those with dementia (Berg et al., 2010), and to increase the likelihood of person-centred care and communication which can elicit positive responses from residents (Savundranayagam et al., 2016). Activities directors at nursing homes and in long-term residential care communities are usually the persons selected to present a range of activities to be used with PWD. Such activities include storytelling circles, DVDs of familiar music from earlier decades played in videos of charming scenes of woods or beaches, and a range of memory supports such as memory wallets, scrapbooks and memory books containing photos from a resident’s past

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(Bourgeois, 2007), or memory videos compiled from home videos or from internet video clip collections such as YouTube (Davis & Shenk, 2015). It has seemed important to us to offer some training in the significance of story and of reminiscence to the staff members tasked with the greatest amount of interaction with persons with dementia, i.e. the nursing aides and their supervisors who can engage in communication activities during daily care. Telling and re-telling the story of one’s life becomes increasingly important as one ages. Accordingly, the first author designed the STORIES programme with Dr Dena Shenk, then Director of the UNCC Interdisciplinary Gerontology Program at the University of North Carolina-Charlotte. The STORIES programme was developed at the request of the Director of ‘Pleasant Meadows’, who also arranged for a token reimbursement to staff for the initial meeting. It was designed to draw on the participants’ life stories in the sense presented by Divita (2014: 95): ‘a person’s biography as shaped by social institutions and historical processes’. We began by emphasizing the stories told by caregiving staff about themselves and their chosen work. We hoped participants would use their successful experience as a way to build empathy with their residents or patients and learn to elicit story from them. However, what we learned the first time we delivered the threesession curriculum changed how we approached communication training for first- and second-language nurse aides on the job. Table 9.4 outlines how we originally designed what we thought of as a person-centred curriculum keyed to story. The first session went well. It focused on oral components of story and song in dementia communication, and promoted staff telling stories about themselves and their own experiences. However, in the next session, several of the local staff dropped out of the workshops. All were local, older African

Table 9.4 Components of the three-session STORIES curriculum (i)

S Story-starter: Who cared for you? What gave them the strength? What helps you? T Team-building: role-play, simulations and media about music and story for you and the people you care for. (ii) O Overview: identify and practise new teaming and partnering skills. R Review what we’ve learned about how music and story help with ageing, dementia and agitation. (iii) I Initiate collaborative story- and conversation-partnerships with the people you care for. E Evaluate materials and media, team-building process, healthcare information, partnerships. S Share your wisdom: demonstrate skills to a new team/family member or care recipient.

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American women, in their 50s and 60s, with at least 10 years of work as an aide; all had been enthusiastic and forthcoming in the earlier session. But we had misread the audience by circulating printed handout materials: too academic, too formal, too technical and, in a number of cases, too difficult a vocabulary. The international staff stayed. They had reading skills that went beyond many of the local staff members, which is often the case with migrants to the United States seeking healthcare jobs and wanting to progress up the career ladder by studying to become nurses (McCabe, 2012). This is similar to the case with migrant domestic workers across the world, who may speak more languages than their employers (Lan, 2006). The local staff had often not received a standard education in the segregated United States of their childhood, and wanted no part of anything that smacked of school. As we submitted in our 2005 self-evaluation: • •

Just about all of the written materials went over the heads of any except the supervisors, who were Registered Nurses with college degrees from the United States. Several of the CNAs left any time they were asked to fill out forms; at least one could not read and several others had very low literacy (these are L1; the L2 can read better but are unwilling to write).

We reformatted immediately, changing all the workshops to have an exclusively oral focus, to create small groups and have them develop skits to illustrate their understandings. After we reformatted the workshops, the first author asked the administration at the residences to arrange meetings solely for international aides twice a year. These workshops accommodated questions raised by the international workers. The biannual small group meetings with international-only aides from 2005 to 2010 were highly productive. Regardless of their home country, aides invariably expressed concern for the residents, reported that elders in their cultures who had dementia usually stayed at home, lamented the lack of family feeling (familismo) in the new country, and talked about their own professional goals. They invariably asked for two specific things: the significance of colours (why red and green at Christmas? Why have baskets of pastel eggs and rabbits? Or short persons in green hats?) and an expanded list of conversation starters and colloquial comments that they could practise as formulas, reminiscent of the language classes they had attended in their home countries. Most sessions included discussions of what people had as faith-based preferences for eating, and which genders could care for which residents and under what circumstances. What we could not do was act as if these in-service workshops were academic classes in themselves. International staff members are often interested in climbing the healthcare ladder, and want the communication

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skills to care more effectively for their residents and to learn the kinds of techniques they would need if they were to progress in the healthcare field.

Colloquial language Specific language practices that bothered the international aides were typically related to colloquialisms and formulaic politeness strategies. As Roberts (2010) comments: The workplace represents a complex, dynamic setting where migrants experience a double socialization: into the hybrid discourses of the workplace, which all newcomers experience, and into the specific language and cultural practices that realize these discourses. (Roberts, 2010: 211) Although the international aides were given some socialization into the various workplaces, they were given no official socialization into the specific language and communication practices that operated there. In addition, because the international aides had little chance to socialize with local aides before or after their shifts, they had little chance to learn – or in some cases did not recognize – appropriate colloquial speech keyed to the job and the particular job site. Were they supposed to refer to care recipients as residents, clients or simply as locations, such as Room 33? How many ways could somebody say they needed to use the toilet? What were the local conventions for calling the residents by name: Betsy? Miss Betsy? Honey? Mrs Walker? How were they to take telephone messages? (Duff et al., 2000, add a number of other areas in which colloquial language is often needed.) While the aides understood on a theoretical level that conventions for showing respect would vary between different countries, it nonetheless was a shock to receive what some of them considered blunt, rude directives from supervisors: ‘Clean up room 45’; ‘Take Ms Betts to the lounge after the activity session.’ Accordingly, we prepared file cards with examples of asking questions, giving directions and offering compliments or apologies, passed them round, and role-played ‘How I … How they’ as adult ESP activities, emphasizing the appropriate colloquial forms to use. Here, we found ourselves doubling back to the work we had done on lexis for the community college classes, and began creating flashcards for key verbs, nouns and -ing forms for the international workers. We reviewed the words on key forms being used for health records, and practised phone messages. Overall, the international healthcare workers found the appropriate use of colloquial language challenging. Their automatic reaction was to be relatively formal with the residents and to expect staff to be formal with them, even when formality was not appropriate for the particular workplace or the situation. They expressed greater comfort after the sessions on colloquial

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language but it was not possible for us to make detailed assessments of any changes in their practice.

Conclusions In this chapter we have touched lightly on some of the issues that surround the use of multilingual, multi-ethnic migrant direct care workers for older PWD when the language of either or both may not match that of the host country. Preferences for the location of care vary between different countries. In some countries PWD are cared for at home. In the United States it is usually recognized that such home care places too great a burden on families where both partners are usually working. Accordingly, older people often move into memory care residences where a large number of the carers are immigrants into the local community (de Bot & Makoni, 2005). They may have little opportunity to maintain and present their multilingual life stories (Divita, 2014). The training programmes we have offered for international as well as local caregivers emphasize the importance of learning to initiate and sustain casual conversation with those they care for. Many programmes offer information and training in the mechanics of care such as how to lift or feed a resident. Few emphasize how important it is to speak to the resident while you feed, bathe or move them, clean their room, help them dress and walk them to an activity. Direct care workers need to be empowered to open simple, casual conversations with those they care for – conversations about topics as mundane as the weather or the pictures on the wall of the resident’s room. The tiny chunks of everyday talk can expand into real conversation and, even when the languages are mismatched, can index warmth and caring for residents who are searching for a less-lonely language concordance.

Key Points • • • • • • •

Direct care workers provide essential care for PWD. As the numbers of PWD increase, more direct care workers will be required. Cultural attitudes about dementia play a large role in the expectations of international aides as to the nature of dementia. Communication with a PWD is an essential part of every aspect of dementia care. PWD should not be talked over, talked across or talked for. Direct care workers often have the greatest contact with the PWD within continuing care residences. Carers need training to see everyday routines as opportunities for communication with PWD.

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Carers need training in communication as well as in the practicalities of dementia care. When culturally appropriate collaborative conversational techniques are used, PWD are more willing to participate in the activities of daily living.

References Berg, A., Sadowski, K., Beyrodt, M., et al. (2010) Snoezelen, structured reminiscence therapy and 10-minutes activation in long term care residents with dementia (WISDE): Study protocol of a cluster randomized controlled trial. BMC Geriatrics 10 (5). See http://bmcgeriatr.biomedcentral.com/articles/10.1186/1471-2318-10-5. Bourgeois, M. (2007) Memory Books and Other Graphic Cuing Systems. Towson, MD: Health Professions Press. Bourgeois, M., Burgio, L., Schulz, R., Beach, S. and Palmer, B. (1997) Modifying repetitive verbalizations of community-dwelling patients with AD. The Gerontologist 37, 30–39. Chen, C. (2016) Insiders and outsiders: Policy and care workers in Taiwan’s long-term care system. Ageing & Society 36 (10), 2090–2116. Chen, P., Auerbach, D., Muench, U., Curry, L. and Bradley, E. (2013) Policy solutions to address the foreign-educated and foreign-born health care workforce in the United States. Health Affairs 32, 1906–1913. Davis, B. and Pope, C. (2010) Institutionalized ghosting: Policy contexts and language use in erasing the person with Alzheimer’s. Language Policy 9, 29–44. Davis, B. and Shenk, D. (2015) Beyond reminiscence: Using generic video to elicit conversational language. American Journal of Alzheimer’s Disease and Other Dementias 30, 61–68. Davis, B. and Smith, M. (2012) Cultural challenges in supervision and training in dementia care for direct care workers. Journal of Continuing Education for Nurses 44, 22–30. Davis, B., Russell-Pinson, L. and Smith, M. (2008) Collaboration in ESP: Towards a multilingual, multicultural nursing assistant workforce. ESP Across Cultures 5, 7–22. Davis, B., Maclagan, M., Karakostas, T., Liang, S. and Shenk, D. (2011) Watching what you say: Walking and talking in dementia. Topics in Geriatric Rehabilitation 27 (4), 268–277. Davis, B., Maclagan, M. and Shenk, D. (2016) Exploring questions and answers between residents and caregivers. In H. Hamilton and W. Chou (eds) The Routledge Handbook of Language and Health Communication. New York: Routledge. Davis, B., Maclagan, M. and Shenk, D (in press) The silent violence of marginalization and teasing in dementia care residences. Journal of Language Aggression & Conflict. de Bot, K. and Makoni. S. (2005) Language and Aging in Multilingual Contexts. Clevedon: Multilingual Matters. Divita, D. (2014) Multilingualism and later life: A sociolinguistic perspective on age and aging. Journal of Aging Studies 20, 94–143. Dong, X.-Q. and Chang, E.-S. (2014) Lost in translation: To our Chinese patient, Alzheimer’s meant ‘crazy and catatonic’. Health Affairs 33 (4), 712–715. Duff, P., Wong, P. and Early, M. (2000) Learning language for work and life: The linguistic socialization of immigrant Canadians seeking careers in healthcare. Modern Language Journal 86, 397–422. Hancock, C., Shenk, D. and Davis, B. (2008) Integrating gerontology service-learning students as members of a research team. In P. Lan Lim (ed.) Service Learning and Gerontology Education. New York: Hampton Press.

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Kemper, S. and Harden, T. (1999) Experimentally disentangling what’s beneficial about Elderspeak from what’s not. Psychology & Aging 14, 656–670. Kim, H., Mentes, J. and Phillips, L. (2014a) The nursing assistants’ communication style and the behavioral symptoms of dementia in Korean-American nursing home residents. Geriatric Nursing 35, S11–S16 Kim, J., Woods, D., Phillips, L., Ruiz, M., Salem B., Jeffes-Skrine, K. and Salem, N. (2014b) Nursing assistants’ communication styles in Korean American older adults with dementia: A review of the literature. Journal of Transcultural Nursing 26, 185–192. Lan, P. (2006) Global Cinderellas: Migrant Domestics and Newly Rich Employers in Taiwan. Durham, NC: Duke University Press. Lowell, L. (2012) The foreign born in the American Healthcare Workforce: Trends in this century’s first decade and immigration policy. Paper prepared for presentation at Migration and Competitiveness: Japan and the United States Conference, March, University of California at Berkeley. McCabe, K. (2012) Foreign-born Health Care Workers in the United States. Washington, DC: Migration Policy Institute. See http://www.migrationpolicy.org/print/4254#. VbvDybeJNwY (accessed 17 August 2015). McLean, A. (2006) The Person in Dementia: A Study of Nursing Home Care in the U.S. Toronto: Broadview Press. Mentes, J., Salem, N. and Phillips, L. (2015) Ethnocultural gerontological nursing: An integrative literature review. Journal of Transcultural Nursing; doi:10.1177/ 1043659615601483. Moore, L. and Davis, B. (2002) Quilting narrative: Using a repetition technique to help elderly communicators. Geriatric Nursing 23, 262–266. PHI (2014) PolicyWorks Facts 1: Occupational projections for direct-care workers 2012–2022. Bronx, NY: Paraprofessional Healthcare Institute. See http://phinational.org/factsheets/facts-1-occupational-projections-direct-care-workers-2012%E2%80%932022. Pope, C. and Davis, B. (2011) Finding a balance: The CCC corpus. Corpus Linguistics and Linguistic Theory 7, 143–161. Queensland Health and Islamic Council of Queensland (2010) Health Care Providers’ Handbook on Muslim Patients (2nd edn). Brisbane: Division of the Chief Health Officer, Queensland Health. See https://www.health.qld.gov.au/multicultural/support_ tools/islamgde2ed.pdf. Roberts, C. (2010) Language socialization in the workplace. Annual Review of Applied Linguistics 30, 211–227. Savundranayagam, M., Sibalija, J. and Scotchmer, E. (2016) Resident reactions to personcentered communication by long-term care staff. American Journal of Alzheimer’s Disease and Other Dementias; doi:10.1177/1533317515622291. Schulz, R., O’Brien, A., Czaja, S. et al. (2002) Dementia caregiver intervention research: In search of clinical significance. The Gerontologist 42, 589–602. Small, J., Chan S., Drance, E. et al. (2015) Verbal and nonverbal indicators of quality of communication between care staff and residents in ethnoculturally and linguistically diverse long-term care settings. Journal of Cross-Cultural Gerontology 30, 285–304. Sorrentino, S. (2003) Mosby’s Textbook for Nursing Assistants (6th edn). New York: Elsevier. Spencer, S., Martin, S., Bourgeault, I. and O’Shea, E. (2010) The Role of Migrant Care Workers in Ageing Societies: Report on Research Findings in the United Kingdom, Ireland, Canada and the United States. Geneva: International Organization for Migration. See http://publications.iom.int/system/files/pdf/mrs41.pdf. Sprangers, S., Dijkstra, K. and Romijn-Luijten, A. (2015) Communication skills training in a nursing home: Effects of a brief intervention on residents and nursing aides. Clinical Interventions in Aging 10, 311–319.

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Stone, R. (2011) Foreign-born Direct Care Workers in the United States: Lessons for Japan. Global Health & Aging and Immigration Project Workshop. Washington, DC: Leading Age. See http://www.gpi-japan.net/media/pdf/project032503.pdf (accessed 12 August 2015). Williams, K., Herman, R., Gajewski, B. and Wilson, K. (2009) Elderspeak communication: Impact on dementia care. American Journal of Alzheimer’s Disease and Other Dementias 24, 11–20.

10 Multilingual Interaction and Dementia: Future Directions for Research and Practice Charlotta Plejert, Camilla Lindholm and Robert W. Schrauf

The name of this volume is ‘Multilingual Interaction and Dementia’. There are several reasons for this choice. The first is that, despite the fact that dementia is experienced by monolingual as well as multilingual persons, research on language and interaction in dementia has to a large extent dealt with monolinguals. There is therefore a great need for furthering our understanding of the particulars of dementia and its impact on interaction in multilingual settings – the everyday reality for very many people. Secondly, in order to shed light on this important and complex arena, this volume gathers contributions by scholars who all adhere to the idea that it is within and through interaction that the most vital aspects and functions of being human are formed, from motherhood until the day we come to an end. Importantly, interaction is not only verbal, but social actions are eminently embodied – what we say is intertwined with bodily conduct of all sorts. A baby’s kick in a mother’s womb yields a response – perhaps a gentle stroke of her hand on her belly, or a verbal response of some kind, a smile or laughter. The bullying of a child by peers in the schoolyard, often combining verbal and physical abuse, might not be overtly responded to by the victim of the mocking, but may result in internal wounds that last a lifetime, negatively impacting that person’s sense of self. A flirtatious glance at a bar may be met with an equally interested look – and who knows where that will end? The old lady who can no longer produce many words due to dementia might moan and point towards her leg when trying to rise from the bed and, as a result, an attentive caregiver might ask what is wrong, bend over and gently adjust the compression stocking. The moaning ends, and the lady smiles. In this way, initiatives are taken and responded to, continuously for a seemingly endless amount of purposes. Inter-action is about doing things (actions) together (inter), striving to establish and maintain mutual understanding, build social relations, 230

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position ourselves and others, form our identities and maintain our self. Thus, who we are and how we feel depend on what we say and how we act towards others, and on what others say and how they act towards us. In bringing a sustained focus on interaction and dementia in multilingual circumstances, we also seek to identify certain analytical and conceptual pitfalls that can be avoided or at least mitigated. The pitfalls that we have in mind concern the tendency to group people in unreflective and potentially harmful ways, both in research and in social life more generally. For example, in working with multilingual populations, there is the temptation to sort people, patients and research participants by ethnocultural background and to make unwarranted assumptions about them based on cultural stereotypes. Therefore, we have deliberately chosen not to highlight terms such as ethnicity or ethnocultural in the title of the book. Here, we highlight ethnicity and ethnocultural background only when participants themselves make it relevant, as demonstrated, for example, in the chapters by Lindholm and by Müller, when their informants show the importance of speaking Swedish (Chapter 2) or Irish (Chapter 3), or when being positioned by caregiving staff as a primarily Swedish-speaking or Finnish-speaking person (Chapter 2). One may of course argue that the use of the terms multilingual and dementia occasions the parallel risk of jumping to the conclusion that ‘person X is performing action Y because s/he has dementia’. However, as is demonstrated in these chapters, our approach relies specifically on the identification of interactional practices that participants make use of in cases where dementia symptoms play out in interaction in various ways (especially in the production and comprehension of verbal language), and we avoid drawing conclusions about people’s behaviour based on top-down, preformulated assumptions of the kind mentioned above. It should also be pointed out that we place considerable emphasis on the contexts and the activities in which multilingual persons with dementia and their communication partners find themselves, and on the role that multilingual practices play in terms of participants’ use of verbal and embodied resources in relation to those contexts and activities. As we will argue below, these practices and resources are not necessarily of importance only for multilingual persons with dementia, but may be relevant and applicable within a range of areas, particularly within residential care, whether a person has dementia or not or is multilingual or not, or in certain clinical settings, for example encounters where interpreters are used. It is evident that it is important to study the practices and processes involved when we communicate in order to enhance our understanding of human social life, and indeed this can be done in a vast range of ways. As described in the introductory chapter to this book, the approaches represented in the different chapters, by and large, rely on conversation analysis and related perspectives, often combined with ethnography. These perspectives, we argue, contribute to an in-depth understanding of what participants

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do when they interact, what actions are of relevance to them, what problems may arise – how they are resolved (or abandoned), and what outcomes interactional actions obtain. Needless to say, increased insights into the complexities of interaction are relevant in relation to conditions that directly affect a person’s communicative abilities, as is the case in the dementias. Surprisingly, however, studies that pay close attention to the intricate details of interaction in dementia are still rather scarce, both for monolingual and multilingual circumstances, though there is a growing body of work currently developing (see Chapter 1). By means of this book, we hope to have opened the door to the field of multilingual interaction and dementia somewhat wider, and to have inspired others to join us in future developments and endeavours. Clearly, many questions remain to be investigated, and the results need to be interpreted, implemented and turned into practice. Thus, what follows is an attempt to summarize the key findings of the studies compiled in this book, and explicate their meanings for future research and practice.

Recapitulating the Findings of the Chapters In the introductory chapter to this book, we provided a brief overview of three main areas in which attention has been paid to issues of multilingualism and dementia: codeswitching, neurocognitive assessments and the use of interpreters, and social encounters in residential care. The first of these areas concerned codeswitching patterns, that is, the interlocutors’ switching between different languages while speaking to one another. To a great extent, earlier work on codeswitching and dementia had neurocognitive and psycholinguistic aims, for example to determine how the choice of language could potentially be related to cognitive decline – and more specifically how codeswitching, and other language choice patterns would provide insights about L1 and L2 attrition and reversion processes in the brain (among other things). Findings also indicated that for a bilingual (e.g. Swedish/Finnish) speaker to be unable to adequately adapt to the language spoken by a monolingual (e.g. Swedish) speaker was an effect of the dementia. However, the studies conducted were rather few, and did not comprise a large numbers of informants. Further, as has been pointed out by critical voices, this research suffered from the absence of baseline data concerning informants’ codeswitching patterns before the onset of dementia. Such details would have been particularly valuable for investigations of codeswitching and language choice in settings where all participants were multilingual and where codeswitching might be considered a very normal phenomenon. This would have enhanced assessments of what codeswitching patterns were pathological and what patterns were not. In many of the chapters of this volume, the participants depicted are heard to mix languages in different ways and to varying extents. This is not

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only the case for the persons with dementia, but also for people around them, such as formal caregivers. As with most prior studies of codeswitching in dementia, the investigations – performed here within the interaction analytical paradigm – also involve rather small numbers of participants. However, given that the scientific goals of this line of research are rather different from neurocognitive and psycholinguistic perspectives, we dare to claim that these smaller samples of informants are potentially less of a problem for us (and quite relevant also from more quantitative perspectives). The interaction analytical approach is concerned with capturing phenomena (such as codeswitching) as these occur at a particular moment of talk, and relating them to the immediate actions, activities and orientations of the participants at hand. A focus on the interaction itself shifts the emphasis from numbers of participants to the density and complexity of moment-bymoment, social and verbal involvement and the ways in which the participants co-construct that interaction. Thus, for example, it may be the case that some interactions will be treated by the participants themselves as related to cognitive decline but, as examples from many of the chapters show, it is also often the case that interlocutors in a complex multilingual landscape draw on different languages and other interactional resources to enhance their mutual understanding. As an illustrative example, there is the Farsi-speaking resident Rasol (Chapter 7), who switched to English using the phrase ‘no good’, which contributed to the Swedish-speaking caregiver’s understanding of Rasol’s complaint about another caregiver’s removal of the footplate of his wheelchair. This phrase was then productively used with variation (recycling with différance) between the two interlocutors, enhancing their mutual agreement and alignment during the complaint, and their eventual common laughter about the uselessness of the other caregiver – all achieved despite great limitations in a shared verbal language. Another illuminating case concerns the brokering practices discussed in Chapter 5, where bilingual caregivers, by adapting their on-the-spot translations and their embodied actions to make them culturally and recipient friendly, succeeded in engaging residents with different languages in interacting with one another, for example concerning their health (a ‘how-are-you-sequence’), or in collaborative singing and dancing. Similarly, by codeswitching, Rona, a Swedish- and Kurdish-speaking caregiver, brokered the interaction between a resident and another caregiver during a reminiscence task in a way that facilitated the social exchange between all participants involved, leading (as it seemed) to increased engagement in the task by the resident. Rona’s lively enactment of the resident’s story in the brokering also foregrounded the resident’s competence, highlighting her skill in relation to the exercise at hand, which added to the other caregiver’s knowledge. Rona’s action also made salient the competence of the resident and brought to light an interesting glimpse into the resident’s past (which may be of use and relevance in their future interactions). These examples (as do many others in the book)

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illustrate how participants continuously strive towards achieving a level of mutual understanding that is sufficient, or at least helpful, in order to do things together, achieve certain goals, and to establish and maintain social relations in their everyday lives. Two of the chapters (Chapters 2 and 3) are more focused on codeswitching and language choice per se than the others. Interestingly, both these chapters integrate ethnography as a way of highlighting the interweaving of settings, situations and residents (or other participants). Again, however, the studies emphasize and document participants’ actual language practices during mundane social encounters in the residential units, including those of interacting with a researcher. These practices are subsequently viewed and discussed in relation to macro-level factors, such as the prevailing language and cultural profiles of the care units, as, for instance, the minority-language Swedish participants in Finnish residential settings, or the Irish-minority speakers in Müller’s chapter (see Müller’s comment on speaker numbers and language use of Irish on Ireland in Chapter 3). Both these chapters, in inspirational ways, illustrate that language matters, and that choice of language might reveal something about who you are and/or of who you want to be perceived and treated as in relation to language and culture. This is, indeed, quite relevant in relation to prior work on the identity and self that has been concerned with monolingual persons with dementia. For example, in Chapter 2, Georgina’s continuous concern with the importance of language, expressed in interactions with others, and Emma’s recurrent mentioning of language matters in her ‘monologues’ reveal how strongly intertwined language and identity are, also, and perhaps not least, for people with dementia. Similarly, in Chapter 3, Theresa is perceived as a ‘language expert’, whose viewpoints about language (correctness) are taken seriously by staff as well as by other residents. This potentially also preserves Theresa’s identity as a teacher in her prior working life. Both these chapters track how staff and residents orient toward one another in ways that seem organized in patterned ways – for example, always speaking in Irish with certain persons, in English with others, or either English or Irish in some cases. However, apart from demonstrating that language matters in terms of identity and intersubjectivity, these data also show that a fairly liberal and flexible approach towards language use is a fruitful way to frame environments that to a great extent are perceived as bilingual by their inhabitants. Again, for example, in the Irish-profiled residential home, staff gave testimony of performing certain activities (such as playing Bingo) bilingually, in order to include as many persons as possible. This kind of bilingual ‘fluidity’ (see Chapter 3, p. 63) appeared to downplay language choice, making people take not too much notice, as social inclusion was foregrounded. Switching between languages, is, as mentioned, a common practice in all residential care environments that have been described in different chapters of this volume. An important difference however, between Chapters 2 and 3,

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both on codeswitching, and Chapters 5, 6, 7 and 9, concerned with residential care, is that, whereas the former focus on care in communities that have been publicly bilingual for lengthy periods of time, the latter focus on settings that primarily involve immigrant persons with dementia or dementia symptoms and/or a multi-ethnic workforce who speak the community’s majority language as an L2 (note, however, that Chapter 6 deals with Canada, but the environment described primarily includes multi-ethnic residents and multi-ethnic staff). The levels of language competence and degrees of access to a mutual verbal language of the interlocutors are therefore likely to vary more widely in comparison to residential care in more formally established bilingual communities. As mentioned in the introductory chapter, as well as in many of the other contributions, most studies conducted in this area are in favour of matching residents and staff language-wise, and in many respects this seems to make sense, since a shared language is most likely also accompanied by certain levels of cultural knowledge (including elements of faith). Indeed, such matching does facilitate certain activities, for example, managing difficult or ‘sensitive’ situations which are not uncommon in dementia care. Examples might include dealing with residents’ complaints, signs of distress or resistance to specific tasks of daily living (for example, taking a shower). Nevertheless, there are certain obstacles to language matching in residential care that need to be discussed. As some of the chapters show, residential care is provided in countries that have been fairly ethnoculturally and linguistically homogeneous, such as Sweden, Finland, but also Canada (despite different degrees of bilingualism in all of them). For demographic reasons, it may be very difficult to find enough caregiving staff who speak a specific mother tongue, and even more desirable to have 24-hour access to staff with this skill. In a country with a small population such as Sweden, despite a rather large proportion of immigrants, it is very difficult to optimize care provision in different languages and multiple dialects, and it may well be the case that even speakers of the same language, but different dialects, are unable to understand one another. The interplay between dialects and standard language in dementia care, for example code-switching between varieties, and possible comprehension problems caused by the use of different varieties, is still a topic for future research. In sum, based on complexities such as those explicated above, for residential care facilities in many countries, matching staff and residents is simply not possible, and it is necessary to find practical and promising ways of providing individualized and person-centred care, and a care that promotes the wellbeing and dignity of residents. One take-home message here is that dementia care in monolingual and ethnoculturally homogeneous settings is not free from challenges, and it is clearly not the case that all challenges can be resolved or problems avoided if only a common language is spoken. Rather, if one tries to zoom in on how effective and interpersonally satisfying monoas well as multilingual interaction in residential care is achieved, it appears

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that a key issue is to pay close attention to how people are received, both in terms of spoken language, but also by means of other interactional resources, such as intonation, body positioning, gestures, facial expressions, movement, touch and gaze, etc. In addition, turn-taking per se is a critical issue; as demonstrated in Chapter 6, too uneven a division of, for example, initiatives between interlocutors may foster an asymmetrical and staff-controlled environment/atmosphere (see Chapter 6, on staff positioning themselves as ‘being in charge’). A closer look at the different kinds of initiatives by staff also revealed that they were primarily concerned with directions and questions related to some instrumental goal (like accomplishing a mealtime ‘task’), an issue that has been problematized in earlier literature as well, particularly in relation to monolingual residential care. Of course, and perhaps unfortunately, residential care is heavily laden with these practical ‘musts’, and also governed by matters of policies, politics and costs (time is costly, and time is needed for social exchanges). Nevertheless, the positive impact of everyday talk on quality of life, should never be underestimated. For a successful outcome of interaction, it is critical that communication and daily care are treated as intertwined processes. What can be achieved by an interaction-oriented manner of accomplishing routine caregiving tasks is increased wellbeing of the residents as well as increased job satisfaction for the caregivers, who come to view their work as meaningful, valuable, appreciated, and a lot more than simply sequences of unchanging tasks. Fortunately, there are programmes that aim to integrate more ‘everyday talk’ into settings that might otherwise run the risk of becoming too task oriented. A sample of such programmes is showcased in Chapter 9, which offers ample examples of training first- and second-language direct care workers in the United States to provide ‘culturally competent care’ for multiethnic persons with dementia. Not only did these staff receive training in the practicalities in dementia care more generally, but they also received training with a particular focus on ‘colloquial use of language, specific technical vocabulary, and cultural and sociopragmatic issues such as ways of issuing directions or showing respect nonverbally as well as verbally’ (Chapter 9, p. 209). In addition to the strong focus on interactional resources of prior chapters, the training programmes described in Chapter 9 also included training more closely related to cultural habits and preferences, with reference to both caregivers and residents, as, for example, concerning gender preferences, politeness, and conceptualizations of dementia and of space and time. The training thus emphasized that, even if tasks had to be carried out, it was of tremendous importance for staff to promote mundane, social talk. Importantly, the training modules exemplified how such social talk could be achieved while carrying out a task. Chapters 4 and 8 both deal with settings outside residential care, and with various aspects of clinical dementia assessments. Using a metapragmatic and discourse constructivist approach, Chapter 8 discusses how

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various discursive practices (proxying, voice-over/dubbing and translation) serve to construct the clinical discourse of Alzheimer’s disease in an online training module for the clinical instrument ROSA, available in four different languages. For example, in the video-based role-play part of the training module, trainees viewed the interaction of a clinician and a proxy (a collateral to a patient), and how the proxy’s report on her father’s behaviour in collaboration with the clinician constructed a hypothetical case of dementia on a specific level of the disease. As part of the online training module, this role-play construction was subsequently to be interpreted and graded by the trainee. In the case of translations and voice-over, it was highlighted how the ‘language of medicine’ was reconstructed and maintained across natural languages, speaking to a uniform audience of clinicians rather than adhering to the worlds of patients and their relatives. An important implication of the analysis of different discursive practices lies in how such practices contribute to stabilizing ‘versions of the world’ (Chapter 8, p. 177), thus also influencing how different groups of people perceive and think of a condition such as dementia. As Chapter 8 displays, this is not a process that only takes place in interaction, but also in text and across languages. Chapter 4 addresses the role of collaborative actions of participants in a clinical context, highlighting the particular complexities and challenges involved in multi-party dementia evaluations mediated by an interpreter. In this particular case, the presence of the patient’s granddaughter was primarily facilitative, critically during the parts of the evaluation where relatives are generally not supposed to be present (portions of neurocognitive testing), in contrast to the medical interview, where accounts by relatives are ordinarily viewed as complementary to patients’ own statements. (Recall, for instance, the training module described in Chapter 8, where the video depicts an interview between a clinician and collateral only, for the purpose of determining the level of dementia over time.) The chapter particularly emphasizes how ‘knowledge’ is negotiated and shaped, and to a great extent is a collaborative achievement, and this collaboration may have bearings on the kind of information to be evaluated as relevant in relation to dementia. The chapter also highlights the need for increased interpreter training in relation to formal clinical tasks, such as tests of cognitive functioning. As with language matching in residential care (discussed above), in clinical assessment it can be very difficult to address and accommodate certain language competences by providing certified interpreters in all languages (and dialects) needed in order to carry out a safe and reliable evaluation. In addition, it is also still the case that many tests of cognitive functioning are ‘biased’ by inadequate or inept adaptation for patients who have limitations in education and/or literacy, and this also makes the assessment challenging for clinicians as well as interpreters. Even if some such tests exist and are used, it still remains to be evaluated how they work when mediated by an interpreter.

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Future Directions for Research and Practice Below, we have listed the main findings that most of the chapters have in common, in bullet points, using key expressions that are followed by a brief statement of their potential relevance and bearings for further research and practice. •

•

Language matters. The use of a specific language in multilingual encounters in residential care is of importance, not only for facilitating mutual understanding and building good relations, but also in terms of establishing and maintaining a person’s self and identity. In practice, therefore, it may be important to pay careful attention to language use and the language preferences of residents, and to be observant of how language assists in the positioning of different persons, particularly in terms of their expertise as agents, or about the preservation and communication of their life story and identity. Language is also clearly a vehicle for negotiations of knowledge, and for the discursive construction of the dementias among different groups, who may have different agendas and different experiences of the disease. Constructions and conceptualizations of the dementias do have an impact on how people are received, for example in residential care and in the society at large. Language practices in relation to dementia, therefore, are an endless source for further research to explore, particularly with a focus on multilingualism. Flexibility in language use. In all of the chapters it is evident that a flexible attitude towards language mixing was beneficial, not only in bilingual settings, but also in settings with greater disproportions of shared verbal language. Even subtle means, such as using short, mutually established phrases, or using a few words in the resident’s language to sing together, may contribute to building a good social relationship. Similarly, wellexecuted practices of brokering facilitated social inclusion, not only between staff and residents, but also by promoting social interchange between residents with diverse backgrounds. In sum, switching languages to facilitate mutual understanding and foreground social inclusion should be further encouraged. This is concordant with training programmes that advocate more mundane talk, simultaneous with, and additional to, primarily task-oriented actions. However, more research is still needed in order to fully understand and capture the many complexities involved in multilingual interaction in residential care. A lot of the research conducted in the field, with only a few exceptions, consists of case studies or studies with rather few informants. In order to get a fuller overview of language practices, and particularly beneficial interactional practices and language patterns, case studies need to be complemented by studies that comprise larger number of participants.

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•

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Embodied actions. Most chapters demonstrate the benefits of participants’ making use of a range of interactional resources beyond the semiotic affordances of purely verbal language. Initiative taking as well as responsive moves by the person with dementia may very well be performed nonverbally and, as was shown in this volume, it is fairly uncommon that persons with dementia do not respond at all to staff initiatives. This indicates that persons with dementia commonly exercise agency — in terms of being able to socially engage in turn-exchanges — not only in linguistically and culturally diverse care settings, but also in later stages of the disease when their use of verbal language is no longer evident (or perhaps possible). This robustness of turn-taking as a fundamental feature of human sociality has been demonstrated in other conditions that affect communication abilities (aphasia, for example), but clearly turntaking is preserved well into later stages of dementia as well. Staff in residential care are often effective at acknowledging nonverbal signals as initiatives or responses in people with dementia, but this is a skill that is not shared by everyone and often varies according to staff perceptions of, and ideas about, people with dementia. Stereotypically negative views of people with dementia, captured in the phraseology of ‘loss’ and ‘deficiency’, need to be fought, and again these very framings are in fact constructed through language and discursive practices. A person who considers someone as ‘empty’ is likely also to miss out on demonstrations of agency. Importantly, to orient to turn-taking, even where there are no visible signs of response, is also a way of supporting the agency of the other and to be inclusive. Thus, to acknowledge different ways in which turn-taking can be supported and developed, for example by means of communication aids (low- and high-tech), is clearly of relevance for research as well as practice. In many countries, communication intervention is not systematically offered to persons with dementia and their next of kin, presumably because dementia is viewed as irreversible, and also because there are images of people with dementia as unable to learn new things. Recent research, particularly of the kind provided in this volume, however, challenges such views. Since many people will also receive an early diagnosis, it will be important to develop interventions and communication aids for people with dementia to support their communication over lengthy periods of time. Already today, certain applications (e.g. for iPads) are available or under development for monolinguals as well as multilinguals, but this is indeed an area of great potential. A lot of work, both basic research on how technological devices like iPads function as a ‘third party’ in conversation, and more applied research with the aim of studying the effects of these devices, is still in the cradle. For example, to the best of our knowledge, there is to date no interactionoriented research on the interplay between persons with dementia and social commitment robots used in dementia care.

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•

•

Interaction is collaboration. This fresh, designedly interactional approach to research on dementia is relevant beyond the multilingual settings taken up in these chapters, and this volume represents another step in the promotion of this line of work which is clearly beneficial for caregiving and clinical practice as well as research. For instance, the interactional view of interpersonal collaboration and communication speaks to research on distributed cognition, a point which is itself not uncomplicated, for example in relation to multi-party, interpreter-mediated dementia evaluations, where the skills to be measured are not the product of one single individual, but that of many. Stress capacities rather than focusing on losses. All contributions to this book in one way or another take an interest in the abilities of multilingual persons with dementia, and how their agency and wellbeing can be promoted by means of interaction with others. This is in line with the research paradigm that the contributors to this volume belong to, and it does not mean that we ignore the symptoms and negative effects of the dementias. However, to us, it appears more productive to investigate how phenomena in interaction may enhance everyday life for people with dementia in different settings, finding and promoting ways for people to meaningfully do things together.

Index

accommodation 63, 150, 152, 171 practices 148–149, 154–169 theory; see also communication accommodation theory xv, 149 accounting practices 186–187, 199 adjacency pair 134–145 affective/affect 53, 142, 144, 160 agency 142–143, 239–240 aide 207, 209, 213–214, 220–222, 224–225, 228 home healthcare 209 international 210, 213, 220–222, 224–226 local 221, 225 nurse aide 210, 213, 220–222, 224–226 Alzheimer’s Association 176, 210, 222 Alzheimer’s disease brief history 176 definition and symtoms 52–53, 148, 176 AMALGAM tagger 213 Arabic-speaking 106–107 Assisted living 214, 219, 220–222

codeswitching 4–6, 35, 40, 53–54, 59, 65, 126, 232–235 colloquial comments 224 conversation 212–213 English 211, 220 language 225, 236 common ground 30, 118, 149, 154, 162, 170 communication as care 219 relational aspects 130 communication accommodation theory (CAT) 149 communicative challenges 104, 106, 117, 127 conditional relevance 135 Conversation Analysis (CA) definition 11–13, 109, 134, 149, 231 cultural issues 210, 213, 219, 221–222 culturally and linguistically congruent care 144

bilingual brokering 105, 122 bilingualsim/bilingual 52–53, 55, 232, 235, 238 bodily quoting 119 brokerees 105 brokering definition 105

deictic adverb 30, 32 de-centring 185 reference 178 deictics 178 dementia care mapping (DCM) 145 dementia evaluation 7, 74–79, 95, 237, 240 dependent/dependency 142 dialogical theory 79 dignity promoting care 144 direct care workers 206–209, 220, 226 directives 137–138, 142, 145, 225 discursive constructionism definition 11–13, 177–178, 199, 201

caregiver ’s phrasebook 215–216, 218–219, 221 Carolina Conversation Collection 221 category entitlements 186–187 Chinese-speaking 144 citizenship 142 CNA 207, 209–211, 214–216, 221, 224 code-mixing 53, 61 241

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discursive devices 186–188 see script formulations; dispositions, category entitlements, hypothetical event, accounting practices discursive practices 177, 182–185 see proxying, translation, voice-over or dubbing dispositions 187–188 dubbing see voice-over elderspeak 18, 149, 214, 221–222 embodied account 119 achievement 118 action/s 3, 42, 121, 152, 169, 230, 233, 239 behaviour/conduct 11, 81 directive 121 practices 11, 105, 126, 149, 152, 154–162 stance 152 emotional stance 125, 127 emotion-oriented approach 122 English for specific purposes (ESP) 210–211 English-speaking 9, 150 epistemic brokering 76 ecology 75, 79–80 negotiations 75, 95, 97–98 order 79 position 84 epistemics 81, 85, 88, 98 ethnocultural diversity/identity 136 ethnographic research 56, 106 ethnography definition 11–14, 26, 56, 231–232, 234 ethnomethodology 11, 187–188 everyday conversation 1, 219 everyday interaction 6, 12 expertise 54, 63–64, 68, 71, 187, 238 face-threatening 112, 127 familismo 207, 210, 224 formulaic politeness 225 gesture/s 2, 76, 105, 121, 142, 148, 150, 152, 236 Global Deterioration Scale 180 go-ahead 212, 215, 219, 221 hypothetical event description 187

imperative 214 indexicality 178, 194 in-service 209, 219–221, 224 international assistant 214 interpreter/s 6–8, 74–79, 95–98, 105, 117, 231, 237 interpreter-mediated dementia evaluation 74–78, 240 interpreters coordinator 84, 95 role 77–78 intersubjectivity 48, 75, 128, 171, 234 interviews 5, 13, 56–57, 106, 145, 177 Irish language 55–57, 61 L1 speakers 57, 59, 62, 68 Irish-speaking 57–58, 63, 69 Kurdish-speaking 107, 233 language choice 4–6, 23–24, 27–28, 36–37, 39–43, 47, 56, 59, 63, 122, 232, 234 language shift 54, 70–71 language switching 43, 53, 56, 60, 63–69, 71 laughter 113, 117 unilateral 111 learned helplessness 142 lexis 212, 225 life history 88, 121–122, 127 long-term care 4, 11, 107, 133–135, 145, 207–208, 222 matching 150 language 10, 235, 237 prosodic/pitch/intensity 152, 162–164, 167 memory book 222 care residence 209, 213–214, 219, 226 conversation 220 problem/s 53, 71, 208, 228 support 222 wallet 222 video 223 meta-linguistic evaluations 67–70 metapragmatics 175, 178–179, 182, 184–185, 197, 200–201 minority language 23, 36, 53–55, 70, 234 monolingual 24–25, 54–55 encounters 2 residential care 104–105, 236 settings 79, 230, 235 monolingual mindset xv

Inde x

monolingualism xvi monologue/s 33–35, 234 Montreal Cognitive Assessment (MoCA) 90 moodle 211 multilingual encounters 4, 9, 148–149, 150, 170–171, 238 interaction 1–14, 230 multilingual/multilingualism definition xv–xvii, 1–3, 24, 48, 175 multimodal aspects 12 interaction analysis 12 resources 127 transcription 155, 173 neurocognitive assessment 6–8, 16, 232 non-addressed party 95 nonverbal 9, 11, 27, 133–145, 208–209, 216, 219, 239 nursing assistant 206, 208, 220 home 8, 23, 26–28, 31–32, 35–37, 39–41, 46–48, 52, 57, 207 open repair initiator 37–38 overaccommodation 149 paraprofessional 208–210, 219 participant observation 56–57, 106 participation framework 96–97, 111, 116–117, 120–121, 127 patient-centred care 220 person-centred care 103, 128, 130, 219, 222, 235 person-environment 145 plural monolingualism xvi plural singularity xvi politeness formula/s 214, 218 theory 111 positioning 15, 23–24, 27–28, 30, 33, 35, 41, 47, 79–80, 82, 96, 142, 144, 238 professional caregiver 24, 27–28, 33, 35–37, 40–43 proxying 184–193, 199–200 see Relevant Outcomes Scale for Alzheimer’s psychosocial 144, 150 quality of life 1, 3, 10, 54, 70, 103–104, 171, 179, 211, 236

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questions 137–138, 142, 145, 211, 217, 222 quilting 212, 215–216, 219, 221 recipient design 105, 122–123, 190, 196 recycling 149–153 of embodied actions 169 with différance/variation 151, 160, 163 reflexivity of language 178, 185, 194, 197 Relevant Outcomes Scale for Alzheimer’s (ROSA) 75, 179–181 reminiscence 106, 122, 126, 212, 219, 222–223, 233 life-review 122, 126 repair 6, 67, 85, 96, 113 initiation/initiator 38, 40 operator 115 other-initiated 151 self-repair 69 sequence/s 8 strategy 61, 150 preface 115 repetition 63, 150–151 of a turn 151, 163 of utterances/elements 151, 167 repetitious verbal behaviour 10 repetitive questioning 221–222 reported speech 126, 177–178, 184–186, 193, 198 resident care aides 136 resident/s 10–11, 233–234, 236–238 long-term 24, 27–28, 33, 35, 37, 40–43, 59, 222 short-term 24, 26–28, 33, 36–37, 41, 43, 45, 47 residential care 1–6, 8–11, 14, 53–54, 103, 145, 148, 207, 209, 220–222, 231–232, 235–239 role-play 175, 179, 182, 188, 190, 192–193, 198, 211, 213–214, 219, 221, 223, 225, 237 ROSA see Relevant Outcomes Scale for Alzheimer’s script formulations 186–187 selfhood 143 shared focus of attention 105, 118, 127 shared social activity 107 singing 68, 104, 106–108, 121, 126, 233 situtated communicative activity 105

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social exchange 103, 105, 109, 117, 128, 233, 236 isolation 2, 71, 103, 105 sociolinguistics xv–xvii staff-resident encounter 106 interactions 103, 134, 137, 142, 144 Stanford Ethnogeriatric Competencies 214 sun-downing 216–217 Swedish-speaking 9, 23–27, 80, 107, 128, 231 task-driven long-term care 220 task-oriented actions 238 instrumentally oriented 134, 142, 145

interactional approach 142 nature of communication 145 Test of Adult Basic Education 217 test of cognitive functioning 74, 82, 97–98 tradition/s 13, 150–151, 154–155, 158, 169, 170–171, 176 transcription conventions 14 transcription/s 14 translating as a discursive practice 194–197, 200 translational turn 109, 112 turkish-speaking 80, 91 turns at talk 134–135 video-recording/s 80, 105, 153 voice-over 197–199, 200–201