Päivi Naskali Joan R. Harbison Shahnaj Begum Editors a Critical

International Perspectives on Aging 22 Series Editors: Jason L. Powell, Sheying Chen

Päivi Naskali Joan R. Harbison Shahnaj Begum Editors New Challenges to Ageing in the Rural North A Critical Interdisciplinary Perspective International Perspectives on Aging

Volume 22

Series Editors: Jason L. Powell Department of Social and Political Science, University of Chester, Chester, UK

Sheying Chen Department of Public Administration, Pace University, New York, NY, USA The study of aging is continuing to increase rapidly across multiple disciplines. This wide-ranging series on International Perspectives on Aging provides readers with much-needed comprehensive texts and critical perspectives on the latest research, policy, and practical developments. Both aging and globalization have become a reality of our times, yet a systematic effort of a global magnitude to address aging is yet to be seen. The series bridges the gaps in the literature and provides cutting- edge debate on new and traditional areas of comparative aging, all from an international perspective. More specifically, this book series on International Perspectives on Aging puts the spotlight on international and comparative studies of aging.

More information about this series at http://www.springer.com/series/8818 Päivi Naskali • Joan R. Harbison Shahnaj Begum Editors

New Challenges to Ageing in the Rural North A Critical Interdisciplinary Perspective Editors Päivi Naskali Joan R. Harbison Unit for Gender Studies, School of Social Work Faculty of Education Dalhousie University University of Lapland Halifax, NS, Canada Rovaniemi, Finland

Shahnaj Begum Unit for Gender Studies, Faculty of Education University of Lapland Rovaniemi, Finland

ISSN 2197-5841 ISSN 2197-585X (electronic) International Perspectives on Aging ISBN 978-3-030-20602-4 ISBN 978-3-030-20603-1 (eBook) https://doi.org/10.1007/978-3-030-20603-1

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This Springer imprint is published by the registered company Springer Nature Switzerland AG. The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland Preface

This book is intended to illuminate the movement from state to markets in responses to the welfare needs in the rural north. It provides new knowledge about the needs of older people in the context of both changes in the Arctic and changes in Nordic welfare. We deliver close examinations of the effects of this transition on legal and human rights, policies, and services and on those older people who are affected by the changes being made. Through these, we demonstrate that there is a lack of political will to address both the negative consequences and the challenges of welfare change in the Arctic. This edited volume is not only envisioned for academics; it is motivated by the local populations of the Arctic. The group of researchers who contributed to this volume are either living in the Arctic region or working on issues related to the Arctic. Their work is closely informed by the experiences and needs of local populations. Thus, the book provides important information for social welfare policy development in addressing concerns about the well-being and inclusion of older people living in Nordic Arctic communities. The diverse views and subject matter of the contributions should both appeal to a broad audience of those interested in ageing in the Nordic Arctic and enrich their understanding of the issues involved. This book is the final output of the project AEPA-Wel (Advancing Elderly People’s Agency and Inclusion in the Changing Arctic and Nordic Welfare System), which has been generously funded by the Nordic Council of Ministers (NCM). The AEPA-Wel project has been hosted at the Unit for Gender Studies, Faculty of Education, University of Lapland. Cooperation from the University of Umeå, through Lena Wennberg as part of the TUARQ network (TUARQ denotes the first letters of the university cities to which the network researchers are now affiliated: Tromsö, Umeå, Arkhangelsk, Rovaniemi, and Quebec), was most helpful for this project. The contributing authors from the Arctic Change Network have engaged with each other’s work in developing the book. They began by commenting each other’s papers both in written reviews and in a live workshop. Later on, the external

v vi Preface reviewers provided significant comments and suggestions to improve the text further. We wish to thank our authors and reviewers for their many insightful comments. We are grateful to all of you for your kind cooperation.

Rovaniemi, Finland Päivi Naskali Halifax, NS, Canada Joan R. Harbison Rovaniemi, Finland Shahnaj Begum Contents

1 Introduction: Ageing in the Rural North �� 1 Päivi Naskali, Joan R. Harbison, and Shahnaj Begum

Part I Changing Politics and Welfare Policies in the North 2 Older Women, the Capabilities Approach and CEDAW: Normative Foundations and Instruments for Evaluation of the Governance of the Nordic Arctic �� 13 Eva-Maria Svensson 3 A Feminist Socio-Legal Approach to Ageing, Gender and Welfare in Northern Sweden �� 31 Lena Wennberg 4 The Aged People in the Transitional Elder Care Policy and Service System in Northern Finland �� 47 Heli Valokivi 5 Traditional Foundations of Novel Opportunities: Marketization in Finland’s Care Sector �� 65 Petra Merenheimo

Part II Challenges in Meeting Older People’s Needs in the Northern Rural Context 6 The Foster Family as a Means of Promoting Social Inclusion of Older People in the Russian North �� 85 Elena Golubeva and Anastasia Emelyanova

vii viii Contents

7 Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns and Care Preferences and Finnish Care Policy’s Emphasis on Care at Home �� 103 Marjo Outila, Marjaana Seppänen, Pilvikki Lantela, and Pekka Vasari 8 Exploring Age-Friendly Environments in Rural Settings: Case Study from Finnish Lapland �� 123 Shahnaj Begum 9 Hit by a Stroke: An Autoethnographic Analysis of Intergenerational Care Across Geographical Distances �� 141 Marit Aure 10 Continued Togetherness: Couples Preparing for Old Age �� 159 Olga Asrun Stefansdottir and Eydis Kristin Sveinbjarnardottir

Part III Age, Voice and Resistance 11 Are We Really Listening? Ageism, Voice, and Older People’s Diversity in Nordic Societies Undergoing Welfare Change �� 175 Joan R. Harbison 12 Voices from the North: Stories About Active Ageing, Everyday Life and Home-Based Care Among Older People in Northern Norway �� 193 Mai Camilla Munkejord, Walter Schönfelder, and Helga Eggebø 13 Old Women and Men as Political Actors in Finnish Lapland �� 207 Päivi Naskali 14 “We Do Not Eat Luxury Food”: A Story About Food and Health in an Old Sami Woman’s Everyday Life in Norway �� 225 Trine Kvitberg

Part IV The Transition to Second Modernity: Ageing in the Arctic 15 The Individualisation of Ageing �� 241 Chris Gilleard and Paul Higgs

Index �� 253 About the Contributors

Marit Aure is a professor in Gender Studies in Sociology at the UiT, The Arctic University of Norway. She has a PhD in Planning and Community studies. Her interests and recent publications nationally and internationally focus on national and international migration, mobility, migrants’ integration in urban and rural communities and labor markets, demography, place and community studies, elderly studies, and gender and management. The constructions of gender, age, class, and ethnicity are important aspects in her research, and recent publications have focused on fathering/masculinities and mobilities in the north. She has edited books and special issues in international journals. Moreover, she is the project leader of Sustainable diverse cities: innovation in integration funded by the Norwegian Research Council for 4 years.

Shahnaj Begum is working as a postdoctoral researcher at the Unit for Gender Studies in the Faculty of Education of the University of Lapland. She holds PhD in Philosophy. Her research focuses on Northern elderly well-being (including Sámi and migrant elderly) and gender issues in the context of Arctic change. She has coordinated two projects, named (a) Advancing Elderly People’s Agency and Inclusion in the Changing Arctic and Nordic Welfare System (AEPA-Wel) and (b) The Arctic Change and Elderly Exclusion: A gender-based perspective, funded by the Nordic Council of Ministers. She is a member of the University of the Arctic Thematic Network of Health and Wellbeing in the Arctic.

Helga Eggebø is a senior researcher at the Nordland Research Institute in Bodø, Norway. She holds a PhD in Sociology from the University of Bergen where she investigated the regulation of marriage migration to Norway. Her main areas of expertise are welfare, migration, gender equality, and discrimination. Between 2010 and 2012, she was a member of a governmental investigation on gender equality (Likestillingsutvalget). Her recent publications focus on social care in elderly care services and family migration and integration. She has several ongoing projects focusing on quality of life among the LGBT population in Norway.

ix x About the Contributors

Anastasia Emelyanova was given a PhD with her doctoral thesis “Cross-regional analysis of population ageing in the Arctic” at the University of Oulu (Finland) in 2015. She is a member of the University of the Arctic Thematic Network of Health and Wellbeing in the Arctic, focusing on collaboration within the Russian, Barents, and Nordic contexts in particular. Her main research interests include the Arctic demography, Arctic health and well-being, and social policy. Currently, she is a research scholar at the International Institute for Applied Systems Analysis (Austria), working under the umbrella of its World Population Program and the Arctic Futures Initiative.

Chris Gilleard trained as a clinical psychologist working in the field of mental health and later life. Early in his career, he carried out clinical research into methods of assessment, caregiving and family carers, and abuse of older people. His research interests now focus on cultural, historical, and social issues, particularly as they concern the changing nature of later life. He is author and coauthor of a number of articles, book chapters, and books, including, most recently, Old Age in Nineteenth-Century Ireland: Ageing Under the Union (Palgrave/Springer) and, with his colleague Paul Higgs, Personhood, Identity and Care in Advanced Old Age (Policy Press) and Rethinking Old Age: Theorising the Fourth Age (Palgrave Macmillan).

Elena Golubeva PhD in Gerontology and Geriatrics, is professor of the Department of Social Work and Social Security at the Northern (Arctic) Federal University (Arkhangelsk, Russia). Her research interests are active and healthy ageing, quality of life, and social services of elderly people in sparsely populated subarctic territories. Teaching activity work deals with master’s and postgraduate students concerning managing elderly care and ageing policy: national and regional dimensions. She is a member of the Russian Gerontological Society.

Joan R. Harbison is an adjunct professor at Dalhousie University, School of Social Work. Her work includes interdisciplinary approaches to teaching and research in the fields of ageing, health, and social service delivery. She has published in numerous national and international texts and journals and contributed to many scholarly international, interdisciplinary, development, and research projects. Most recently, she authored the text Contesting Elder Abuse and Neglect: Ageism, Risk and the Rhetoric of Rights in the Mistreatment of Older People, University of British Columbia Press, Fall, 2016, in collaboration with her interdisciplinary research team from law, sociology, and social work.

Paul Higgs is professor of the Sociology of Ageing at UCL. He has a degree in Sociology from the Polytechnic of North London and a PhD in Social Policy from the University of Kent. He has coauthored with Chris Gilleard a number of books: Cultures of Ageing: Self, Citizen and the Body (2000); Contexts of Ageing: Class, Cohort and Community (2005); Ageing, Corporeality and Embodiment (2013); Rethinking Old Age: Theorising the Fourth Age (2015); and Personhood, Identity and Care in Advanced Old Age (2016). In 2017, he was coeditor of the Sociology of About the Contributors xi

Health and Illness special issue on Ageing, Dementia and the Social Mind. He edits the journal Social Theory & Health and has published widely in social gerontology and medical sociology. He is currently involved in researching the social effects of dementia through two UK government-funded projects: MARQUE (Managing Agitation and Raising QUality of lifE in dementia) and PRIDE (Promoting Independence in Dementia). He is also a collaborator on the EU-funded INDUCT (Interdisciplinary Network for Dementia Using Current Technology) international training network and a fellow of both the UK Academy of Social Sciences and the Gerontological Society of America.

Trine Kvitberg holds master’s degrees in Health Science and Social Anthropology. She is currently working with health projects in a nationwide health service organization for woman’s health and minority health in the North. She is a doctoral candidate in Arctic health Science at the Department of Community Medicine, UiT, The Arctic University of Norway. The PhD thesis “Arctic food biographies: A critical medical anthropological approach to elder indigenous women’s health and everyday life experiences” is research conducted in the Circumpolar Arctic of Russia, Norway and Greenland. Her main research interests include Arctic health; minority, indigenous, women’s, and elderly health; health communication; ordinary everyday ethics; and critical medical anthropology and anthropology of the senses, food, and the body.

Pilvikki Lantela MTh, MSc, is a PhD candidate at the University of Lapland, Faculty of Social Sciences. Her research interests focus on questions of gender, noncapitalist organizations, and leadership. She took part in a project that examined the older adult population in Finnish Lapland in 2017–2018.

Petra Merenheimo holds PhD in Philosophy. Her research interest is the ongoing marketization in the Nordic care sectors and especially its impact on female care business owners and their opportunities to develop care innovations. In her doctoral thesis, she scrutinized what kind of business opportunities the marketization in Finland creates for care professionals. She has both economic (Diplom-Kauffrau) and social services (bachelor in social services) background. At the moment, she acts as visiting scholar in Germany Cologne University of Applied Sciences, Institute of Gender Studies.

Mai Camilla Munkejord PhD, is professor at the Department of Social Work and Child Welfare at the University of Tromsø, Norway, and research professor at NORCE Research Institute in Bergen, Norway. She is a social scientist who specialized in social anthropology. She has published nationally and internationally on elderly care and migrant care workers in rural Norway; rural counter-migration; (sense of) place, gender, masculinities, immigrant entrepreneurship in a rural context; masculinities/fathering; and work-life balance. She currently works with ageing at home-based care in rural areas, recruitment and inclusion of migrant care workers in Norwegian nursing homes, as well as work inclusion (supported employment) of users with special needs. She is particularly interested in issues related to gender, context, and culture sensitivity. xii About the Contributors

Päivi Naskali is working as a professor of Gender Studies at the University of Lapland. She has supervised approximately 200 master’s theses and 9 doctoral theses. She is the head of the Finnish University Network of Gender Studies, has worked actively in the National Doctoral School in Gender Studies, and edited the Journal of Women’s Studies. Her research interests include gender and ageing in the times of neoliberalism, educational gender politics, and feminist pedagogy and philosophy. She has lately been leading a research project The Arctic Change and Elderly Exclusion: A Gender-based Perspective.

Marjo Outila is a doctoral candidate in Sociology at the University of Lapland (Finland). She is working as a researcher in a project that develops home care in Northern Finnish municipalities. Her research interests include home care, interaction between home care worker and client, end-of-life care, and participation of older people in the use of gerontechnology.

Walter Schönfelder holds a master’s degree in Social Work and a PhD in Sociology. He works as an associate professor and head of the research group Professions and Welfare Society at the Institute for Child Welfare Services and Social Work at UiT, The Arctic University of Norway. Among others, his research interests include professional social work identity, interdisciplinary teamwork, and cooperation between health and social services. His current research is focused on the facilitation of social care for the elderly and on effective supported employment methodologies for work inclusion.

Marjaana Seppänen PhD, is professor of social work at the University of Helsinki, with a background in social sciences. During the last decades, she has studied different questions connected to ageing. Her teaching and current research work deal with social work and social gerontology with special focus on social relations, wellbeing, and exclusion of elderly people in different social and physical environments. The recent research publications focus on questions connected with well-being and social relations of older adults, gerontological social work, and older residents as members of local communities in segregated neighborhoods.

Olga Asrun Stefansdottir has a degree in Occupational Therapy and Family Therapy. She is now working as the head of Faculty in Occupational Therapy at the University of Akureyri, Iceland. Her master’s research was on the retirement of older couples. Her main research interest lies within the ageing population, focusing on empowerment and well-being. Before she started teaching and researching at the university, she was for 8 years the manager of the Social Communication and Day Center for the Elderly in the Municipality of Akureyri. Alongside teaching and managing the Faculty of Occupational Therapy, she also has been a self-employed family therapist.

Eydis Kristin Sveinbjarnardottir finished her MSN in Psychiatric and Mental Health Nursing from the University of Pittsburgh, USA, and her PhD from the University of Iceland, where her research emphasis was on implementing family About the Contributors xiii support in acute psychiatry. She is the dean of School of Health Sciences at the University of Akureyri, Iceland and is also an associate professor at the University of Akureyri which gives her the privilege to continue her research on families. She worked as an administrator at Landspitali National University Hospital for 20 years and held a clinical assistant professor position at the University of Iceland from 2011 to 2016 until she started her work in Akureyri.

Eva-Maria Svensson is a professor of Law at the Department of Law and the director for Centre for Interdisciplinary Gender Research at the University of Gothenburg. For 10 years (2005–2015), she worked as a professor at The Arctic University of Norway in Tromsø. Her research interests include legal philosophy, gender equality, and ageing. She is one of the founders of the research network on Gender Equality in the Arctic, TUARQ. She is also part of a multidisciplinary center at the University of Gothenburg on ageing and capability (AgeCap). She has supervised eight doctoral theses, and her teaching interests are legal theory and method, as well as gender and social equality and nondiscrimination. She has published extensively on a wide range of issues, in both national and international collaborations and individually.

Heli Valokivi PhD, is professor (temp.) and docent of Gerontological Social Work at the University of Lapland and university lecturer at the University of Tampere, with a background in social sciences and social work. During the last decades, she has studied different questions connected to ageing. Her teaching and current research work deals with social gerontology and gerontological social work with special focus on elder care policy, home care, end-of-life care, and participation of elderly people in their everyday life and care encounters. The recent research publications focus on user participation, care paths, civilized care, and social rehabilitation of the elderly people.

Pekka Vasari is a lecturer of Statistics in the Faculty of Social Sciences at the University of Lapland. He is also a member of the following project groups; CAPS: Children’s Knowing Agency in the Private, Multi-Professional and Societal Settings and The Case of Parental Stalking ProSoc: The Professions in Arctic Societies, in which he will start as a full-time worker for 6 months in the beginning of the year 2019.

Lena Wennberg is a senior lecturer at Forum for Studies on Law and Society, Umeå University, Sweden. She has a master in social work and is doctor of laws. Her main field of research has an interdisciplinary, feminist, and socio-legal approach and focuses on social exclusion of various groups of women and children in welfare state policy and law. Her current research is part of Nordic and international research collaboration on transformative action for filling the gender equality gap in the Arctic. Her focus here is on public discourses on ageing and gender in existing concepts in welfare state regulations and in human rights. Chapter 1 Introduction: Ageing in the Rural North

Päivi Naskali, Joan R. Harbison, and Shahnaj Begum

Abstract This book provides new knowledge about the wellbeing, rights, and policies of older people in the Arctic in the times of changing Nordic welfare. Demographic ageing is taking place in an increasingly globalized world. At the same time, governments are in the process of decreasing the state’s responsibility of peoples’ well-being, and promoting marketization. The book analyses the effects of the changing politics and welfare policies on legal and human rights, services, and on the wellbeing of older people who are affected by the changes being made. It also gives voice to the older people to better identifying their welfare needs. The book demonstrates that there is a lack of political will to address both the negative consequences, and the challenges, of welfare change in the Arctic.

Keywords Ageing · Arctic · Changing Nordic welfare · Legal and human rights · Policies and services · Gender

Demographic ageing is taking place in an increasingly globalized world in which corporate capitalism provides the direction for most developed economies, including those of the Nordic states (Wennberg 2008, see Chap. 3). Beliefs associated with corporate capitalism, in particular the neo-liberalism that places responsibility for their well-being on individuals, have influenced policy changes in what were once welfare states committed to universal programs. Namely, governments are in the process of transferring this responsibility from the state to individuals, and at the same time promoting marketization in responses to welfare needs. This transfer is

P. Naskali (*) · S. Begum Unit for Gender Studies, Faculty of Education, University of Lapland, Rovaniemi, Finland e-mail: [email protected]; [email protected] J. R. Harbison School of Social Work, Dalhousie University, Halifax, NS, Canada e-mail: [email protected]

© Springer Nature Switzerland AG 2019 1 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_1 2 P. Naskali et al. said to be intended to increase the individual’s choices about how to meet their needs while lowering costs to governments. In effect the focus on welfare politics has moved from social and political solutions to fiscal issues, and the debt of states dominates the economic discourse (see Bear 2015).

1.1 Welfare Change, Austerity Politics, and Gender

The shift away from universality was fueled by the economic crisis in 2008 after which many states began exercising “austerity politics” (Schui 2014). The purpose of austerity politics is to cut the state debt, and balance the state budget, by cutting government expenditure, and increasing competition and economic activity. This means cutting pensions, health and education expenses, and wages. Florian Schui (2014) describes the history of austerity as originating in an “ethical austerity” coming from the Aristotelian tradition, one whose intent was to decrease the consumption of the wealthy. Nowadays, austerity politics is doing just the contrary: cutting from those who already are in a bad economic and social situation. Schui (2014, p. 189) concludes that: “Austerity, in its current form, is simply a great failure.” This statement of failure is a position with which many critics agree: “This austere approach to public deficits and debt reflects neoliberal economic orthodoxy and is widely criticized by Keynesian, heterodox and feminist economists for being both economically ineffective in terms of restoring economic growth and reducing the deficit and because of its highly negative impact on those least able to withstand economic hardship” (Adkins 2015, p. 32). According to the critical research, austerity policies have increased inequality in the whole western world. With regard to the specific situation of older people some researchers have analyzed their risk of poverty in the EU countries. Radiskaw Abtczaj and Asghar Zaudu (2016) found that in 2014 close to 18% (16 million) of people 65+ were at risk of poverty. However, in historical perspective, the economic situation of those in late life had improved within the last 10 years, with the risk increasing only in three countries, including among the Nordic countries, Sweden. The authors say that the financial crisis seems to affect more in the working age population, especially young people, than those in receipt of pensions. Comparing incomes is not the whole picture because it does not involve the cuts to public benefits and services that indirectly have affected the living standard of older people who are often dependent on social and health services. Moreover, this does not include consideration of the difference in the situation of older women and older men. In 2014, 20% of older women were at risk of poverty, while the percentage of older men was 15. Further, in Finland and Sweden, the average poverty rate is low and therefore the difference between male and female pensioners is significant especially given that the gender gap in poverty changes slowly: it has remained the same since the beginning of the nineteenth century. Cuts to state pensions to 1 Introduction: Ageing in the Rural North 3 generate savings, the case in many European countries, also cause losses for women. This is because the pension is based on the average career-earnings rather than final salaries, and women have irregular working patterns due to their commitments to their families. The European Women’s Lobby (2012) has analyzed the consequences of austerity politics for women. According to its report, decreased benefits have increased the care responsibilities for women. They provide care to those family members whose services have decreased (see Elson 2012) especially for those who cannot afford to purchase services. It follows that the cuts in care services have affected the possibilities for women to concentrate on their careers. This re-imposition of responsibility for care has happened even as the “pursuit of gender equality has moved from the margins to mainstream policy-making in the last few decades partly because it is estimated to increase economic growth”. At the same time, “Less attention has been given to the ways in which the market economy reproduces gender inequality at both micro and macro levels…” (Perrons 2017, p. 33). Johanna Kantola and Emanuela Lombardo (2017) also point out how politics can lead to a competition between different underprivileged groups. The moralizing controlling discourse that emphasizes individual responsibility engenders feelings of guilt.

1.1.1 Voice and the Construction of a Welfare “Crisis”

Older people too are affected by this moralizing discourse. Governments claim that, central to the need to lower their costs of providing welfare, is the rising “burden” – in extreme terms characterized as a “tsunami” – of care needs for older people. It is said that this burden threatens the health and viability of state economies. In times of austerity the language of crisis – of the risks accompanying public debt and therefore of the need to cut benefits – dominates discussion. With repetition the language of crisis becomes accepted as fact. Whether or not this negative characterization of those in later life is true is, as we have seen in the discussion above, a matter of economic argument. Nevertheless, there is evidence that older people do accept their burdensomeness (see Harbison, Chap. 11). Lisa Adkins (2015) challenges researchers and especially feminist researchers to investigate “how economic inequality works” instead of focusing on redistribution of income. For instance, in Finland the state has given up subsidies similar to equal- ization payments and the money has been transferred to municipalities in relation to the age structures of their populations. Municipalities have received more freedom to organize the services but their financing has been cut. From the 2010s, the state has withdrawn from supervising the processes and guaranteeing the quality (Hoppania et al. 2016). These policy changes have led to serious deficits in service availability and delivery. This is especially the case in rural areas with small municipalities where the population is ageing fast, and working aged people, especially women, are moving away. 4 P. Naskali et al.

This important transformation in social policy has been on going in the Northern countries. The idea of universalism in social services is vanishing. In the past universalism was intended to guarantee gender and social equality by stressing the right to the same, good quality, tax financed, and publicly provided, services to all citizens. Now the move is to de-universalize social policy, especially in elder care, with the trends of re-familization, strengthening the responsibility of family, and privatization by giving space to marketization (Szebehly and Meagher 2018). In the Arctic areas services have been moved far away to the bigger communities and old people are expected to live in their homes as long as possible. This increases loneliness and the mental and social vulnerability of older people. Notwithstanding these economic and social policies surrounding services, generations of ageism, mostly hidden within governments and their institutions, but highly visible in other groups including the media, have led to the public conviction, that not only are older people’s needs unaffordable but that those in late life are unworthy of having them met. This conviction is frequently true among older people themselves (Harbison et al. 2016, pp. 139–140). This state of affairs allows governments to proceed with welfare cuts. These we have seen are euphemistically characterized as greater freedom of choice through privatization and commercialization of services.

1.1.2 A Lack of Political Will to Address the Negative Consequences of Welfare Change

Cuts in welfare have negative consequences for individuals and these consequences are sometimes placed before the public. Most often demands for accountability come from families distraught at the lack of adequate services available for their older members. Sometimes they follow from investigative media reports. Less frequently they result from government responses to the failure of regulatory oversight in institutions and services (Harbison et al. 2016, p. 209). Whatever their source, stories and visual representations of the mistreatment and neglect of older people, at least briefly, lead to calls for change from the general public as well as those directly involved. Yet repeated and similar instances of failures to provide adequate care and services do not seem to lead to change in the overall direction of their provision. These failures may be seen as in part a lack of knowledge and preparedness in those delivering services, in part as a “devaluing of both the carer and the cared for” (Higgs and Gilleard 2015, p. 110), and finally as the undermining of care by cost cutting to maximize profits (Armstrong and Braedley 2013). More broadly they may also be attributed to a lack of political will for positive change within ageist societies (Struthers 2013). This lack of will reflects the dominance of the tenets of austerity politics as a whole. 1 Introduction: Ageing in the Rural North 5

1.2 Elements of the Book

Our text is intended to illuminate the transition from state to markets in responses to welfare needs in the rural north. We provide close examinations of the effects of this transition on legal and human rights, policies, and services, and on those who are affected by the changes being made. The authors of the chapters in Part I Changing Politics and Welfare Policies in the North examine the current global context for policy developments on ageing in Nordic welfare states. They reflect on international social justice norms that influence the legal right to services, legal theory, and social policy implementation. Eva- Maria Svensson in her chapter Older Women, the Capabilities Approach and CEDAW – Normative Foundations and Instruments for Evaluation of the Governance of the Nordic Arctic points out that the United Nations Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) includes references to the specific interests of all women including those who are older. It could therefore be used in conjunction with the capabilities approach as articulated by Nussbaum (2013) to promote social justice through normative arguments that focus on enhancing human dignity, including in specific regions such as the Nordic Arctic: “whether they act as sovereign states or when they collaborate within inter- governmental bodies”. At the same time Svensson acknowledges that the sovereig- nity of nation states is under threat and that they “risk losing their power to multinational companies and global financial networks with minimal, if any, accountability (see also Joan Harbison, Chap. 11; Lena Wennberg, Chap. 3). Moreover, the CEDAW Committee shows little evidence of considering the situation of older women. Lena Wennberg argues for an approach to law that considers the context in which law exists and in particular how it “fail[s] to recognize the realities of gender difference and women’s lives…”. In the chapter A Feminist Socio-Legal Approach to Ageing, Gender and Welfare in Northern Sweden she seeks to “recognize the ‘socio; in the intersecting legal political and economic discourses that could have constraining effects on women’s lives in the rural and multicultural context of the northernmost part of Sweden”. Wennberg notes how the globalization of human rights’ concerns has made “the debate about the relationship between law and society even more intense …” so that the diversity in culture, interests, and abilities are acknowledged, and coercive expectations are restrained. She takes up a theme reiterated in many of the chapters: that Sweden exemplifies the trend in Western [welfare] states of a move from a collective responsibility for welfare to an approach that is described in terms of enhanced choice for the individual but which in fact promotes privatization and in formalization and transfers responsibility for their welfare to individuals. Heli Valokivi’s chapter Older People in The Aged People in the Transitional Elder Care Policy and Service System in Northern Finland focuses on changes in service policy leading away from universalism. “The primary goals and principles of the current Finnish elder care policy are ageing in place, user involvement and 6 P. Naskali et al. responsibility, and reducing costs”. Over a 30 year period institutional care for those 75 years and older was reduced from 15% to 2% by alternative forms of care in the home or service housing. However, the right to that care is not secured by legislation. The “elder care law” only provides the right to “service needs assessment”. In effect the state no longer takes responsibility for care, while those who provide service are a mix of “public, private and third sector organizations and participants”. Implementation of these new goals and principles in policy-making is under way through a national strategy of reform involving regional government and the agencies responsible for health and social care. The author examines data from the political and reform discussions in order to consider how older people are perceived and the extent of their participation in the development of these reforms. The political steering group articulated older people as a “hypothetical homogenous group” that constitutes a burden. Thus they leave aside differences in individual situations, abilities and strengths so that older people are seen [in a] quite passive and objectified way. Petra Merenheimo provides a critical social policy analysis in the chapter Traditional Foundations of Novel Opportunities: Marketization in Finland’s Care Sector employing Bourdieu’s concept of capital. Her examination of the marketization methods of outsourcing, investment grant schemes, and vouchers, demonstrates that these economic processes contain a gender bias which relegates the notion of care to that of a societal burden. Thus productivity is seen only in terms of the means by which economic costs can be reduced. The author argues that instead care professionalism can, and should, be identified as “a valued form of (embodied) cultural capital”, an investment which can produce other types of productivity in education, employment, female entrepreneurism and societal well-being. In Part II Challenges in Meeting Older People’s Needs in the Northern Rural Context the authors present the findings of their inquiries into some of the positive and innovative ways in which individuals, families, and communities attempt to respond to changes and to mitigate unmet needs for service. In their chapter The Foster Family as a Means of Promoting Social Inclusion of Older People in the Russian North, Elena Golubeva and Anastasia Emelyanova state that the 10-year strategy on ageing introduced in Russia in 2016 has similar aspirations to those throughout Europe. That is “to empower older people to live healthily and actively as long as possible” (a theme also taken up by Shahnaj Begum with reference to Finnish Lapland in Chap. 8). However, health and social services in depopulating rural areas of Russia are limited and there is a lack of assistance for older people without family members able to provide care. The authors note that when service needs are “met” this may not be in ways that meet the felt needs of the specific older people – rather what is provided is the “guaranteed minimum” available. They indicate that there is evidence that informal community care networks can assist in meeting a range of otherwise unmet needs from the bottom up. One such manifestation of community care is the increasing number of foster families paid to provide individual care and regulated by local social service departments. Although concerns have been expressed that some families might take in 1 Introduction: Ageing in the Rural North 7 older people for monetary rather than social philanthropic reasons there is as yet no evidence of this. The authors conclude that though new methods of monitoring and supervision of foster situations as well as research are indicated, so far the fostering response to the care of isolated older people is a promising development. Marjo Outila, Marjaana Seppänen, Pilvikki Lantela, and Pekka Vasari for the chapter Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns and Care Preferences and Finnish Care Policy’s Emphasis on Care at Home, conducted an extensive review of the literature on end-of-life preparations, concerns, and care preferences as well as their own empirical study of these matters carried out in two urban/rural communities in Northern Finland. Although not definitive, due to limitations in the response rate and sample, the results do have implications for changes in Finnish political governance and service delivery policies relating to death. Although the direction of service delivery is towards dying at home the evidence suggests that for some people institutional care is more desirable, especially if they live alone. In addition, those who do want to die at home view formal care as central to that care as they do not wish to impose on their families and communities. There is also a perceived need for more people to engage in Advanced Care Planning in general, and specifically to complete Advanced Directives that express their wishes about end-of life care. The small proportion of people who presently do so suggests a need for measures that enhance these numbers. Shahnaj Begum’s chapter Exploring Age-Friendly Environments in Rural Settings: Case Study from Finnish Lapland takes the position of agencies in the European Union (EU) and World Health Organization (WHO) in arguing that age-friendly environments are key in “supporting longer and healthier independent lives for elderly people … including [those in] rural areas”. Her interviews with older villagers in Finnish Lapland are intended to elicit their thoughts on what is required for an age-friendly environment and what they see as missing within the Finnish north. The older people told of various challenges to their ability to live the lives that they desired. The built environment was lacking because of the loss of the village shops and post offices and of public transportation to go shopping. Further, the inadequacy of pension income especially for women meant that they were unable to buy the services that they wanted. The absence of a critical mass of older people, as well as the limited availability of transportation meant that religious and social activities had become rare rather than regular. Finally, their strong feelings about nature, and their desire to maintain a connection to it through activities as berry picking and mushroom gathering were often frustrated because physical assistance was not available. The author concludes that maintaining a good quality of life for older people in isolated northern communities appears vulnerable. Age-friendly policies should be an important consideration in policy development. One of the key elements of ageing and ageing care in our globalizing world is geographic distance between younger family members and those older members requiring care. So far this has not been a focus of scholarly attention. Marit Aure’s auto-ethnographic account in her chapter Hit by a Stroke—An Autoethnographic Analysis of Intergenerational Care Across Geographical Distances of her family’s 8 P. Naskali et al. response to her father’s illness, and need for care, at a geographic distance illuminates the complexities and difficulties in providing a family response. At the same time it demonstrates the possibilities and potential for social, emotional, and practical care, through a combination of distance technology, formal local services, and informal community responses and opportunities. Olga Asrun Stefansdottir and Eydis Kristin Sveinbjarnardottir take the position that in the Icelandic context of an aging population, including many long-married couples, “a systems approach is a prerequisite for sound policy decisions, service delivery and research regarding older couples and families” in Iceland. In the chapter Continued Togetherness: Couples Preparing for Old Age they illustrate their argument through a discussion of the stresses inherent in the separation of couples when one member enters a nursing home and the other is ineligible to do so. They comment on the failure of a pilot program whereby spouses who did not physically need nursing care were allowed to accompany their spouse to the long term care facility. They state that it appears that the views of the service users were not the cause of this failure but administrative and financial concerns about the use and cost of the program. The authors argue instead in favour of the rights of older couples to be together. In the section Part III Age, Voice and Resistance the work turns its attention to the voices of older people in response to their particular circumstances. In some instances they strive to make their voices heard, remaining part of the mainstream of society. In others their voices are constrained by external circumstances. In yet others it appears that older persons intentionally constrain their voices because in doing so they can retain control over a positive sense of self. Alternatively their lack of voice may represent their belief that the needs and wishes of younger generations should be given precedent. In the chapter Are We Really Listening? Ageism, Voice and Older People’s Diversity in Northern Societies Undergoing Welfare Change, Joan Harbison argues that despite claims that older people’s views are central to developing policies on ageing these views are constrained by the manner in which they are sought. Namely the participation takes place within predetermined frameworks that serve to limit the nature of participant responses. In effect older people’s participation advances the agendas of governments and researchers. As a consequence older people experience a silencing and loss of voice that undermines their confidence in others interest in their welfare. At the same time they experience being “othered” in that they are patronized by being set apart from the mainstream – a point also discussed by Päivi Naskali in Chap. 13. The conclusion is that governments and researchers should understand that taking measures in support of older people’s agency will in turn release their potential to contribute to the benefit of all society. Governmental policies throughout Europe and indeed globally refer frequently to “active ageing” as a goal for older people. In the chapter Voices from the North: Stories About Active Ageing, Everyday Life and Home-Based Care Among Older People in Northern Norway, Mai Camilla Munkejord, Walter Schonfelder and Helga Eggebo point out that although the term usually refers to participation in “physical, social and cultural activities” some older people demonstrate a different type of active ageing that involves engaging in routine or recreational activities 1 Introduction: Ageing in the Rural North 9 within their homes that meet their personal criteria for “active ageing”. Further, when they do wish to participate in activities outside of their homes the necessary municipal support services may not be available. Päivi Naskali’s chapter Old Women and Men as Political Actors in Finnish Lapland examines how gender and age relate to positions of power in municipal politics and the possibilities for, as well as restrictions on, older people’s political agency at the intersections of socio-economic status and gender. While gender equality is said to exist in Finland, a downturn in the economy has re-masculinized national politics as “the government has focused on a few overarching priorities, all of which relate to male-dominated ‘hard’ sectors like the economy and technological innovation”. This is a theme also present in Petra Mereheimo’s chapter on care marketization and innovation. It seems that while legislation establishing quotas for women on municipal has produced results power is still predominantly masculine with a large proportion of men chairing municipal organizations (75%), and in particular executive boards (81%), and municipal managers remaining mostly male. This is attributed to the acceptability of the male image as active, objective, and rational. The older couple interviewed demonstrated traditional gender roles and attitudes and “a busy ethic”. The man was concerned that older people should take on responsibility for themselves “taking on a moral tone” about his peers. However, in the end his own commitments seemed to be too much for Matti and he bowed out in favour of the younger generation. His wife was more careful in not taking on more than she could comfortably handle. Trine Kvitberg’s chapter “We Do Not Eat Luxury Food” A Story About Food and Health in an Old Sami Woman’s Everyday Life in Norway records the experiences of an old Sami woman and reindeer herder in Finnmark. Through her own voice Inga tells how eating the food of her culture, including reindeer meat, dried fish, and berries, helped her to regain her sense of self, and alleviated the pain caused by the assimilation policies of the Norwegian government. Those policies meant that as a child she was placed in a government boarding school where the children were forced to eat unfamiliar foods such as carrots and potatoes that were claimed to be healthy. Inga was removed from what she refers to as their struggle with nature. Inga is proud that she and her husband Peter were eventually able to return to their previous lives. Through the hard work of reindeer herding and through eating traditional foods they overcame the results of cultural oppression and happily re-entered their struggle with nature. Chris Gilleard and Paul Higgs are scholars well-known for their innovative theoretical contributions in the field of ageing. In the final chapter, for our forward looking Conclusion to the book, we invited them to reflect on how current theoretical ideas can be applied to its contributions. In The Individualisation of Ageing they discuss ageing from the perspective of individualization, a cultural and political change that in many ways has affected the life course in Western societies. They argue that individualization is a major constituent of second modernity. As such it presents some opportunities for those in their third age but also “risks losing the collective solidarity associated with old age” at the same time raising the potential 10 P. Naskali et al. for social inequalities. In the context of the rural Arctic, studied in the chapters of the book, they conclude that research in the Arctic area, from the viewpoint of geographical and social locations, “poses an array of questions and research agendas that can be informed by and that can inform and enrich existing theoretical debates in social gerontology and ageing studies”.

References

Abtczaj, R., & Zaudu, A. (2016). Risk of poverty among older people in EU countries (CESifo DICE Report 1). Southampton: University of Southampton. Adkins, L. (2015). What can money do? Feminist theory in austere times. Feminist Review, 109, 33–48. Armstrong, P., & Braedley, S. (Eds.). (2013). Troubling care: Critical perspectives on research and practices. Toronto: Canadian Scholars’ Press. Bear, L. (2015). Navigating austerity. Stanford: Stanford University Press. Elson, D. (2012). Austerity policies increase unemployment and inequality – But don’t reduce budget deficits and government borrowing. Journal of Australian Political Economy, 71, 130–133. European Women’s Lobby. (2012). The price of austerity. The impact on women’s rights and equality in Europe. Brussel: European Women’s Lobby. Harbison, J. R., Coughlan, S., Karabanow, J., Vander Plaat, M., Wildeman, S., & Wexler, E. (2016). Contesting elder abuse and neglect: Ageism, risk, and the rhetoric of rights in the mistreatment of older people. Vancouver: University of British Columbia Press. Higgs, P., & Gilleard, C. (2015). Rethinking old age: Theorizing the fourth age. London: Palgrave Macmillan. Hoppania, H.-K., Karsio, O., Näre, L., Olakivi, A., Sointu, L., Vaittinen, T., & Zehner, M. (2016). Hoivan arvoiset: vaiva yhteiskunnan ytimessä. Helsinki: Gaudeamus. Kantola, J., & Lombardo, E. (2017). Gender and the politics of economic crisis in Europe. In J. Kantola & E. Lombardo (Eds.), Gender and the economic crisis in Europe. Politics, institutions and intersectionality (pp. 1–25). Basingstoke: Palgrave Macmillan. Perrons, D. (2017). Gender and inequality: Austerity and alternatives. Intereconomics, 52(1), 28–33. https://doi.org/10.1007/s10272-017-0639-x. Schui, F. (2014). Austerity. The great failure. New Haven/London: Yale University Press. Struthers, J. (2012/2013). Framing aging through the state: Canada’s two Senate Committees on aging, 1963–1966 and 2006–2009. Canadian Review of Social Policy, 68/69, 1–9. Szebehly, M., & Meagher, G. (2018). Nordic eldercare – Weak universalism becoming weaker? Journal of European Social Policy, 28(3), 294–308. Part I Changing Politics and Welfare Policies in the North Chapter 2 Older Women, the Capabilities Approach and CEDAW: Normative Foundations and Instruments for Evaluation of the Governance of the Nordic Arctic

Eva-Maria Svensson

Abstract International law and politics are important aspects of the geopolitics of the Nordic Arctic, as is the historical, political, cultural and socio-economic context, and, they have an impact on the individual’s capabilities to live a life of dignity. Law and politics are democratic instruments for societal changes and for the full realisation of people’s rights and capabilities. In this chapter, the capabilities approach is used as a reference frame for considerations of the implementation of the obligations towards older women in the Nordic Arctic that come with the ratification of The Convention on the Elimination of All Forms of Discrimination against Women.

Keywords Older women · CEDAW · The capabilities approach · Governance of the Nordic Arctic region

2.1 Introduction

Global agenda-setting actors and international legislative bodies are increasingly addressing the challenges of an ageing population. This includes the gendered aspect of ageing with experiences of inequalities and discriminatory practices for older women all over the world. Political and legal agreements oblige nation-states to acknowledge and promote the ambitions of the agreements and govern in a direction which is in line with the agreed commitments. The political and legal instruments form the normative bases for today’s political institutions and for public governance. According to The World Bank “(a) central element of good governance is the responsiveness of policies and public institutions to the needs of all citizens.

E.-M. Svensson (*) Department of Law, School of Business, Economics and Law, University of Gothenburg, Göteborg, Sweden e-mail: [email protected]

© Springer Nature Switzerland AG 2019 13 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_2 14 E.-M. Svensson

Policies and institutions must represent the interests of women and men and promote equal access to resources, rights, and voice” (The World Bank 2006). The international legal instruments and the global agendas can be and are also used as evaluative instruments in national and regional contexts, together with global comparisons of levels of human development, such as the Human Development Index (HDI) and the Gender Development Index (GDI). Through processes of global bench-marking, the nation-states are challenged and encouraged to improve the situation in their own country and for their own population. The instruments can also form the basis for research on the specific situation in countries and regions such as the Nordic Arctic, and for normative argumentation on improvements of the shortcomings in public governance. In the international agenda-setting and benchmarking of levels of human development, expressed in legal documents, global agendas and indexes and the like, a ‘new paradigm’ has emerged, a model for human development or the capabilities approach (Nussbaum 2013). This new paradigm for human development gains an increasingly influential position in international organisations working with welfare, and with human dignity as the central concept, such as UNDP and The World Bank. The paradigm has emerged as an alternative to the narrower paradigm with a focus on the Gross National Product (GNP). The GNP is used to measure a country’s development based on the total value of all economic activity in the country during a certain period. In this chapter, the ‘new paradigm’ based on the capabilities approach as an account of social justice, will be used as a normative reference frame for considerations of the implementation of the obligations that lies on public governing bodies. These accompany adherence to the global normative framework of political and legal obligations. More specifically, with the ratification of The Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), they encompass older women in the Nordic Arctic.

2.2 A Global Normative Framework

In 2015, the United Nations General Assembly formally adopted the universal, integrated and transformative 2030 Agenda for Sustainable Development (Transforming our world), along with a set of 17 Sustainable Development Goals and 169 associated targets. The reach of sustainable development governance has expanded con- siderably at local, national, regional and international levels during the years since the UN Conference on the Human Environment in 1972. The 2030 agenda is a plan for action for people, planet and prosperity. It is highly ambitious and very clear when recognising the eradication of poverty as the greatest global challenge and an indispensable requirement for sustainable development. Gender equality and the empowerment of all women are integrated and indivisible and balance the three dimensions of sustainable development: the economic, the social and the 2 Older Women, the Capabilities Approach and CEDAW: Normative Foundations… 15 environmental. In article 23 of the Agenda, older persons are identified as vulnera- ble1 and as people who must be empowered together with other vulnerable groups, such as the indigenous. And, the third sustainable goal is to “ensure healthy lives and promote well-being for all at all ages”. The goals and targets are expected to stimu- late action over the next 15 years in areas of critical importance for humanity and the planet. As such, the Agenda is part of the global normative foundation referenced at the beginning of this chapter, and it is clearly based on a development concept that is comprehensive and has much in common with the capabilities approach. The most important international human rights legal instrument when it comes to ensuring women their human rights is CEDAW. The Convention is a gender-specific instrument, based on an acknowledgement of the shortcomings of other human rights regimes and the indivisibility of all human rights. It is applicable to all spheres of life, both the private and public domains, and is considered to have the greatest potential to ensure substantive gender equality (equality in results) for women (Hellum and Aasen 2013). CEDAW has, moreover, a transformative approach, it combines an equal rights element, a social support element and a socio-cultural element, which makes it better equipped than other treaties to address existing legal, social and cultural barriers to substantive equality (Cook and Cusack 2009; Holtmaat and Naber 2010). Recognition of the interdependence and indivisibility of civil, political, social and economic rights, gives the instrument the greatest potential to address the close relationship between women’s marginalisation, social rights and inequality, according to Hellum and Aasen (2013, p. 3). All of the Nordic Arctic States2 have ratified CEDAW and therefore it should be expected that the states follow the obligations coming with the ratification. However, the Committee has directed some critique towards the situation of older, indigenous and rural women, intersections that can be expected to occur in the Nordic Arctic (see the Sect. 2.5.3 below). To monitor the convention, a specialised treaty body is established (the CEDAW Committee). State Parties are obliged to report to the Committee on a regular basis and, and when doing so, they are urged to include non-governmental organisations and other groups outside government in the reporting work (CEDAW/C/2009/II/4, II, 3). Irrespective of domestic legislation on the nation-state level (which ensures women human rights), the supervising function of the Committee takes as its benchmark the obligations of the convention. In their work, the CEDAW Committee has several tools. Besides the state parties reports and the shadow reports that NGOs have the possibility to submit, the Committee also has among its members interna-

1 The Agenda use the word ‘vulnerable’ to identify groups of people who must be empowered. The identified groups are all children, youth, persons with disabilities (of whom more than 80% live in poverty), people living with HIV/AIDS, older persons, indigenous peoples, refugees and internally displaced persons and migrants (para 23). However, these groups are also considered to be in vulnerable situations (para 25 and 39). Additionally, countries are considered to be vulnerable (para 22 and 69). Vulnerability has come into focus as a specific approach and as a basis for justice and equality, also in the Nordic context, not the least via the influence of Martha Albertson Fineman, see Bjørnholt (2013). 2 Finland, Norway and Sweden. 16 E.-M. Svensson tional experts on women’s human rights, special rapporteurs addressing specific issues and the possibility to visit countries. For example, the special rapporteur on violence visited Sweden 2006 and mentioned older women as one group that should be paid special attention when recognising the important role of a non-governmental women’s shelter (A/HCR/4/34/Add.3, p. 23). And in 2010, the special rapporteur on the rights of indigenous peoples, visited the Sápmi region, and pointed at the difficulties of complying with their obligations to offer care for older people in the Sami language (A/HRC/18/35/Add.2, para 65). The Committee does consult with civil society, and there is also an individual complaints model based on the Optional Protocol to the Convention on the Elimination of All Forms of Discrimination against Women. The possibility for individual complaints and the important role given to NGOs strengthens the capacity of individual women and women’s organisations to make state parties accountable for their obligation to respect, protect and fulfil the commitment to human rights for women (Knop 1995). The CEDAW Committee has specifically addressed the situation for older and rural women. The General Recommendation No. 27 from 2010 addresses the rights of older women and protection of their human rights, and the General Recommendation No. 34 from 2016 addresses the rights of rural women. Moreover, the Committee had a general discussion on rural women in October 2013 (OHCHR 2013).

2.2.1 The Responsibility to Implement Political and Legal Obligations

The responsibility for implementing legal and political obligations and the full realisation of people’s rights and capabilities lies upon the nation-states and its governing bodies. The Nordic states with land in the Arctic have all committed themselves to follow the intentions of the 2030 Agenda for Sustainable Development and they are all part of the Voluntary National Review process coming with the Agenda. Sweden has, as an example, explicitly said that it “wants to be a leader in the implementation of the 2030 Agenda – both nationally and globally” (Sustainable Development Knowledge Platform). The parties in the international collaboration on human (and sustainable) development are the nation-states. They are also the one’s that can be made accountable for their failures. The responsibility for the situation in the Nordic Arctic lies upon the nation-states, no matter whether they act as sovereign states or when they collaborate within inter-governmental bodies. The Arctic region, a territory that is not equivalent to the borders of nation-states, is exposed to such governing bodies. In this inter-governmental forum, as well as in other collaborations, not only the governments take part but also other actors, such as non-governmental organisations and private business actors. For example, in The Arctic Council there are indigenous groups included as permanent participants, and in The International Forest Forum 2 Older Women, the Capabilities Approach and CEDAW: Normative Foundations… 17 of the Barents Euro-Arctic Council are private business actors taking part. However, when it comes to the political and legal obligations, it is the states that are responsible.

2.3 Some Specific Characteristics for the Nordic Arctic Region

The increasing interest from the whole world in the Arctic geopolitical region as an area with immense natural resources of great economic value, is a reason why there are so many actors involved in the governing of the Arctic today (Lahey et al. 2014; Nord 2016a, b; Svensson 2017). This is also of specific importance when it comes to the situation for those who are identified as vulnerable. The agenda-setting for the activities and priorities for the Arctic is not always sensitive to the normative framework of sustainable human development and human rights for all. Also, the demographic situation can make vulnerable groups even more vulnerable. The population density is relatively low. The low population density is related to why the region is perceived as remote and rural, characteristics which expose women to situations of vulnerability. In addition, the ‘ageing population’, one of today’s repeatedly addressed urgent challenges in most parts of the world, is of specific urgency in the Arctic region. And ageing is gendered. It is known that women tend to live longer than men and that more older women than men live alone (General Recommendation No. 27 2010, 5). There is however a need for more knowledge about this and the CEDAW Committee has identified the need for sex- and age-disaggregated statistical data as a way to better assess the information on older women (General Recommendation No. 27 2010, 2). Generally speaking, the number of people in the EU over age 65 will have grown by 70% by 2050 (Horizon 2020). And, for example in Sweden, the population over 80 years of age will have doubled in the late 2040s, from half a million in 2014 to one million (Statistics Sweden 2014). According to the Global AgeWatch Index 2015 Norway and Sweden score as the second and third best countries to get old in.3 Finland score as number 14 (Global AgeWatch Index). These states with territories within the Arctic region rank among the highest in the world, however it is also in this region that the predicted increase of an older population is among the highest (Population Ageing Maps, Global AgeWatch Index 2015).

3 The Global AgeWatch Index is a global network of organisations working with and for older persons, for as said on the webpage “informed debate on ageing. Policy makers broadly agree that we can and should do better in measuring social and economic progress as a means to promote improvements. (… It) makes international comparisons of quality of life in older age possible. The Index is a tool to measure progress and aims to improve the impact of policy and practice on ageing populations. The Index brings together a unique set of internationally comparable data based on older people’s income status, health status, capability (education and employment), and enabling environment. These domains have been selected because they were identified by older people and policy makers alike as key enablers of older people’s wellbeing.” (Global AgeWatch Index 2015) 18 E.-M. Svensson

The changed age structure is said to have an impact on the organisation of society and on the (Nordic) welfare state. The Long-Term Survey of the Swedish Economy 2015 declares that the demographic changes will challenge the publicly financed welfare systems and the possibilities of reaching political goals of redistribution. The costs for elderly care will rise, put additional stress on the public budget and make the political and financial systems more vulnerable. Even though the demographic changes with an ageing population generally can be mitigated by migration, which is the case in Sweden as a whole (SOU 2015, p. 95), the situation in the Arctic region seems to be a bit different. The demographic changes, as Lena Wennberg has shown in her chapter, lead to a shrinking, ageing and gender-skewed population. This situation “implies sparse tax revenues and that the geographically extended and financially ‘poor’ municipalities lack the financial and human/personnel resources needed to meet the statutory local responsibility to provide welfare services and care for older people in need” (Wennberg 2017). Even though there is some in-migration of foreign women who come to live with local men (Burman 2012), the most addressed problem is out-migration from the Arctic of young women (see, e.g., Arctic Human Development Report 2004, pp. 191–195; Wennberg 2017, p. 180). Some reasons for this out-migration are the lack of education and work opportunities. Labour markets in the northern part of the Nordic countries have been characterised as gender segregated and offering few employment opportunities, particularly for women (Overud 2013 cited in Wennberg 2017, p. 179). Out-migration can also have other reasons, such as climate changes. The term ‘climigration’ coined by Robin Bronen in 2009 captures the “forced permanent migration of communities due to climate change”. Even though Bronen’s specific examples were communities in Alaska, The Arctic as a whole is considered to be vulnerable to climate change, and forced out-migration can of course be a consequence. Moreover, the northern region is the region which is the traditional land of indigenous groups. In Norway, Sweden and Finland the Sami population has a certain degree of self-determination and its own political institution, the Sami Parliament (established, respectively, from the 1970s to the 1990s). As an indigenous people, the Sami have a different standing than other ethnic minorities in Sweden. A voluntary organisation, The Saami (sic) Council, with member organisations in Finland, Norway, the Russian Federation and Sweden, is a permanent participant in the Arctic Council. Indigenous populations are identified as vulnerable and have a rightful expectation to be of special concern of the nation-states governing the Arctic in order to be guaranteed the full enjoyment of their human rights. The interplay between the specific geopolitical context and older women’s capabilities to live a life in dignity in the Nordic Arctic in times of changing politics and welfare policies, is related to the international agenda declared in and monitored by multi-level governance. In these declarations and conventions, certain groups are identified as vulnerable and as such in need of being empowered. Women in general and, more specifically, women who are either older, indigenous or rural, are identified as being part of groups for which the state parties are accountable for their obligation to respect, protect and fulfil their human rights. 2 Older Women, the Capabilities Approach and CEDAW: Normative Foundations… 19

2.4 The Capabilities Approach as the Normative Benchmark for Older Women in the Nordic Arctic

The capabilities approach, developed by Amartya Sen and further elaborated by Martha Nussbaum and others, is more sensitive towards inequalities and lack of resources for a part of the population than the GNP paradigm is considered to be, and the former is considered to better meet the need for acknowledging distribution, and additionally, raising the levels of life quality (Nussbaum 2013). The capabilities approach, a model for human development formulated by Amartya Sen and further elaborated by Martha C. Nussbaum (who extended the concept of capability to plural) and others, is used here to analyse the impact of legal and political obligations for the nation-states for a specific group, older women, in a specific geopolitical context, the Arctic. The main reasons for using Nussbaum’s capabilities approach are, that it is and has been influential in the global human development agenda for measuring levels of life quality, and it has resonance to the responsibilities of the Nordic welfare state. The capability/ies approach is an economic theory conceived in the 1980s as an alternative approach to welfare economics. A range of ideas that were previously excluded from (or inadequately formulated in) traditional approaches to the economics of welfare for instance those measured by GDP were brought together in this approach. The core focus of the capability/ies approach is on what individuals are able to do (i.e., are capable of). The approach has been predominant as a paradigm for policy debate in human development and has been influential in the evolu- tion of several human development indexes. These include the Human Development Index (HDI), the Inequality-adjusted Human Development Index (IHDI), the Gender Development Index (GDI) and the Gender Empowerment Measure (GEM), all of which were produced within the United Nations Development Program (UNDP). For instance, HDI encompasses the dimensions long and healthy life, knowledge and a decent standard of living. These dimensions are measured by the indicators life expectancy at birth, expected years of schooling and mean years of schooling, as well as GNI per capita (PPP $). Together these indicators, shown in life expectancy index, education index and GNI index, are brought together in an HDI (United Nations Development Programme, Human Development Reports). Other indexes, like the above mentioned Global AgeWatch Index, developed and constructed by HelpAge International, are also based on the concept capability with reference to Amartya Sen (1999). It has furthermore been much discussed in philosophy, and is increasingly influential in a range of social sciences. The most important aspects in Nussbaum’s approach that differs from Sen’s, and are relevant here, are the focus on human dignity instead of enhancing individual freedom, the normativity (a set of fundamental capabilities are identified), and the central role of the nation-state (as the responsible political subject for the achievement of a minimum thresholds of all capabilities). These three aspects are of specific relevance here. 20 E.-M. Svensson

The approach’s centre around the notion of individual human dignity corresponds to the internationally agreed upon wellbeing objective of value for older persons implemented for instance in the Swedish Social Services Act in 2010. This was formulated as living in dignity and having a feeling of wellbeing. To live in dignity and have a feeling of wellbeing were in the Swedish context explicitly meant to clarify the fundamental, normative and ethical values for elderly care and were construed as a means of steering the management of care services (Wennberg 2017, p. 185). To normatively identify and adhere to a set of fundamental capabilities and not only, as Sen does, rely only upon individual freedom, corresponds to the Nordic welfare state context according to which certain aspects of life are identified as parts of a decent life. Nussbaum points out ten core capabilities, essential for people to do and to be what they like. According to Nussbaum, a political order can only be considered decent if the order secures at least a threshold level of every one of these capabilities to all inhabitants. The fundamental capabilities are: (1) life, (2) bodily health, (3) bodily integrity, (4) senses, imagination and thought, (5) emotions, (6) practical reason, (7) affiliation, (8) other species, (9) play and (10) control over one’s environment (politics and the material; Nussbaum 2000).4 The core capabilities should be supported by all democracies. To give the nation- state this central role is, according to Nussbaum, not only a handy starting-point, it has a moral meaning. The nation-state is a system of principles and laws which rely upon the people to the utmost extent. They are important expressions of the autonomy of the people, i.e., their right to live under laws they have chosen themselves. The capabilities approach, especially its respect for practical reason(ing) and political self-determination, assigns the nation-state a central role and aspires to a world in which nation-states with an acceptable democratic level enjoy protection for the national sovereignty. Nation-states would not, in such a world, risk losing their power to multinational companies and global financial networks with minimal, if any, accountability. This is, according to Nussbaum, a veritable risk today. Whether the nation-state is the only unit that has the right accountability is an empirical question, she adds, but so far, no other unit takes sufficient responsibility to guarantee the minimum level of the core capabilities to all inhabitants. How do these capabilities relate to the obligations put on the state parties through the CEDAW and what are the possibilities to fulfil the capabilities for older women in a Northern context? A question of specific relevance for the Nordic Arctic region is the performance of the nation-states when collaborating in inter- governmental bodies such as The Arctic Council. How accountable is the Council, established by the eight Arctic States, for guaranteeing a threshold level of the capabilities?

4 The list is not intended to be definitive, other capabilities can be argued for, however, the list so far is the same as it was in 2000. 2 Older Women, the Capabilities Approach and CEDAW: Normative Foundations… 21

2.5 How Do These Capabilities Relate to the Obligations Put on the State Parties Through the CEDAW?

Nussbaum’s capabilities approach as a normative theory, pointing at some fundamental capabilities that ought to be guaranteed to a certain level by the nation-states in order to promote human dignity, is closely connected to legislation and nation- building. The capabilities start from a set of political principles (Nussbaum 2013, p. 78). According to Nussbaum the approach is also closely related to a variant of the human rights movement (Nussbaum 2013, p. 107). It is evident that the list of fundamental capabilities has similarities with the rights identified and given status as human rights in human rights documents, among others, the CEDAW. CEDAW is comprehensive when it comes to the spheres of society in which women are to be guaranteed not to be discriminated against. Compared to other human rights instruments CEDAW is, as mentioned above, applicable to all spheres of life, both the private and public domains, and is considered to have the greatest potential to ensure substantive gender equality (equality in results) for women. What is more, it also has a transformative aspect that obliges the state parties to transform the society in order to, e.g., eliminate traditions that are gender stereotypical. This provides a certain challenge to the Arctic region in which traditional values and gender roles within indigenous groups are sometimes considered to be in conflict with the guarantee of women’s human rights (Arctic Human Development Report 2004, p. 189; Svensson 2017, pp. 42–43). Also, CEDAW’s presumption on individual choice as a self-obvious quality (which is in accordance with the capabilities approach), may also be a challenge when it comes to indigenous law systems (see, e.g., General Recommendation No. 33 in 2015 on women’s access to justice, [GR 33], 46c). CEDAW covers the human rights for all women and does only exceptionally mention specific groups in the text (e.g., Article 11 mentions ‘old age’ and Article 14 mentions rural women). However, the CEDAW Committee has, over time, adopted general recommendations on specific groups of women considered vulnerable, based on general conclusions drawn upon shortcomings in the state parties’ reports (the obligation of which comes with ratifying the convention). During its 47th session in 2010, the Committee adopted the general recommendation on older women and protection of their human rights (General Recommendation No. 27 2010 [GR 27]) and in 2016 the recommendation on the rights of rural women (GR 34). Intersections of vulnerable characteristics, such as older, rural, and indigenous, are addressed in both documents. In GR 34, it is stated that many indigenous women live in rural settings and experience discrimination based on their ethnicity, language and traditional ways of life. Therefore, States Parties shall ensure, for instance, access to health care, and social services as well as economic resources and the empowerment to live a life in dignity (GR 34, para 14–15). The specific situation in the northern parts of the world is not mentioned, but the specific focus in these general recommendations is relevant for the Nordic Arctic. Intersections between old age, rurality and indigeneity are of high relevance for the region. 22 E.-M. Svensson

2.5.1 General Recommendation on Older Women (GR 27)

In the general recommendation on older women (GR 27), the Committee recognises age as one of the grounds on which women suffer multiple forms of discrimination. The Committee notes that older women’s rights are not systematically addressed in the state parties’ reports (GR 27, para 1–2). Several specific areas of concern are identified, among them the following. The discrimination that older women experience is, according to the Committee, often a result of unfair resource allocation, maltreatment, neglect and limited access to basic services (GR 27, para 11). Older women in rural areas often suffer from a severe lack of basic resources for subsistence, income security, access to healthcare and information on and enjoyment of their entitlements and rights (GR 27, para 12, 24). The discrimination experienced by older women is often multidimensional, with the age factor compounding other forms of discrimination, and older women belonging to indigenous groups often experiencing a disproportionate degree of discrimination (GR 27, para 13). Age discrimination, or ageism, is still tolerated and accepted at the individual, institutional and policy levels (GR 27, para 15; the Nordic countries have legislation pro- hibiting age discrimination, even though age discrimination occurs, see DO statistics). Gender stereotyping, traditional and customary practices can have a harmful impact on all areas of the lives of older women (GR 27, para 16), and older women’s participation in political and decision-making processes might be restricted (GR 27. para 17). There are fewer women than men in the formal employment sector (GR 27, para 20) and this may be even more true for older women in the Nordic Arctic than for younger women. Consequences are, less economic resources and lower pensions. Additionally, women have often been the primary caregivers, however, the financial and emotional cost of this unpaid care is rarely recognised (GR 27, para 20). Older women’s rights to self-determination and consent with regard to health care are not always respected. According to the Committee social services for older women, including long-term care, might be disproportionately reduced when public expenditure is cut (GR 27, para 1). The recommendations to the State parties are extensive and concern all aspects of life. State parties must recognise that older women are an important resource to society, and have the obligation to take all appropriate measures, including legislation, to eliminate discrimination against older women (GR 27, para 29). One important thing that is also emphasised by the capabilities approach, is that in order to support legal reform and policy formulation, state parties are urged to collect, analyse and disseminate data disaggregated by age and sex, so as to have information on the situation of older women, including those living in rural areas and belonging to minority groups. According to the Committee, such data should especially focus on poverty, unpaid work, access to health care, housing, social and economic benefits and employment (GR 27, para 32). According to the capabilities approach, the responsibility that lies on the nation-states to improve the situation for all human beings, requires knowledge about the specific situation (Nussbaum 2 Older Women, the Capabilities Approach and CEDAW: Normative Foundations… 23

2013). The state parties’ responsibility to create and continuously improve statistical databases and the analysis of all forms of discrimination against women in general, and against women belonging to specific vulnerable groups in particular, is also raised in the General Recommendation No. 28 on the core obligations of state parties under article 2 of the Convention on the Elimination of All Forms of Discrimination against Women 2010 (GR 28, para 10). Other aspects of life that the recommendations include are: the elimination of gender stereotypes and modification of social and cultural patterns of conduct that are prejudicial and harmful to older women (GR 27, para 36), violence (GR 27, para 38) participation in public life (GR 27, para 39), education (GR 27, para 40), work and pension benefits (GR 27, para 41–44), health (GR 27, para 45–46), economic empowerment (GR 27, para 47), social benefits (GR 27, para 48), and rural and other vulnerable older women. Further the recommendations state that State parties shall ensure that older women are included and represented in rural and urban development planning processes. State parties should also ensure the provision of affordable water, electricity and other utilities to older women, GR 27, para 49–50), marriage and family life (GR 27, para 51–53).

2.5.2 General Recommendation on Rural Women (GR 34)

Article 14 of the CEDAW, is the only provision in an international human rights treaty which specifically pertains to rural women, and must be interpreted in the context of the convention as a whole. Rural women represent a quarter of the world’s population and they play a crucial role in agriculture, rural development, food and nutrition and poverty reduction. Article 14 recognises the unique situation of rural women and highlights specific obligations of state parties in recognising, promoting and protecting their rights. The CEDAW Committee has, through its concluding observations, identified various ways in which rural women continue to face discrimination. In the General Recommendation discussion of rural women (GR 34) the Committee clarifies state obligations to ensure the rights of rural women. Rural women continue to face systematic and persistent barriers to the full enjoyment of their human rights. According to the Committee in many cases, conditions have deteriorated. In many States, rural women’s rights and needs remain insuffi- ciently addressed or ignored in laws, national and local policies, budgets, and investment strategies at all levels. Even where laws and policies consider rural women’s situation and foresee special measures to address them, they are often not implemented” (GR 34, para 4). And, there is a failure of acknowledging women’s work (often in the form of unpaid work) and their contribution to the gross domestic product and sustainable development (GR 34, para 10). On every gender and development indicator for which data are available, the Committee continues, rural women fare worse than rural men and urban women and men, and rural women experience poverty and exclusion disproportionately, globally, and with few exceptions. They also face systemic discrimination in accessing 24 E.-M. Svensson land and natural resources (GR 34, para 5), a condition that could be expected to be of special concern for the inter-governmental bodies governing the Arctic, such as the Arctic Council. Rural women carry most of the unpaid work burden due to ste- reotyped gender roles, intra-household inequality, and lack of infrastructure and services, including with respect to food production and care work. The lack of infrastructure and care service is something that is highlighted within the research network (see, for instance Lena Wennberg’s chapter in this volume). Even when formally employed, they are more often engaged in work that is insecure, hazard- ous, poorly paid and not covered by social protection. They are less likely to be educated and are at higher risk of being trafficked and forced into labour, as well as into child and/or forced marriage and other harmful practices (see Burman 2017). They are more likely to become ill, suffer from malnutrition or die from preventable causes, and are particularly disadvantaged with respect to access to health care. The risk for women to be harmed by contaminants is also pointed at in the Arctic Human Development Report from 2004 (AHDR, 2004, p. 199). Rural women are also more likely to be excluded from leadership and decision- making positions at all levels, according to the Committee. They are disproportionately affected by gender-based violence, and lack access to justice and effective legal remedies (GR 34, 6). This is confirmed in the AHDR report (2004, p. 198). According to the Committee the state parties jeopardise their own progress when the importance of rural women’s empowerment, self-determination, and position in decision-making and governance is ignored (GR 34, para 6). The Committee’s statement is strengthened by the quotation from the World Bank on good governance at the beginning of this chapter. Older women and/or widows may, according to the Committee, suffer from stig- matisation and isolation in rural areas, exposing them to greater risks of ill-treatment, as also recognised in GR 27 (2010) on older women and protection of their human rights (GR 34, para 14). The obligations of the state parties are far-reaching: state parties should ensure that legal frameworks are non-discriminatory and guarantee access to justice to rural women, in line with General Recommendation No. 33 2015 (GR 33) on women’s access to justice (GR 34, para 9). Among other things, a gender impact analysis of current laws to assess their impact on rural women should be conducted. State parties should similarly ensure that older rural women have access to social services, and adequate social protection, as well as economic resources and empowerment to live life with dignity, including through access to financial services and social security (GR 34, para 15). According to the Committee access to health care is often extremely limited for rural women, due to prevailing social norms and patriarchal attitudes, insufficient budget allocations to rural health services, lack of infrastructure and trained personnel, remoteness, and lack of transport (GR 34, para 37). Therefore, state parties should safeguard rural women’s and girls’ right to adequate health care, ensure that quality health care services and facilities are physically accessible and affordable to rural women, are culturally acceptable to them and are staffed with trained medical personnel (GR 34, para 39). 2 Older Women, the Capabilities Approach and CEDAW: Normative Foundations… 25

2.5.3 Country Reports

Based on the country reports that states parties are obliged to submit regularly, the Committee has directed only some critique towards the Nordic Arctic States addressing the situation of older, indigenous and rural women. In the concluding observation on Sweden’s latest reports, the Committee explicitly addresses older women to a very limited degree (CEDAW/C/SWE/CO/8-9). No recommendations are made for the improvement of older women’s situation, in fact, the only specific mention of older women is that the Committee welcomes the extensive system of public old age care (CEDAW/C/SWE/CO/8-9, para 34).5 This can be compared with the statement from Global AgeWatch Index 2015, mentioned above, that names Sweden as the third best country to grow old in. Women living in remote areas (rural is not a word used) are, together with for example Sami women, identified as belonging to disadvantaged groups in relation to access to justice, and more specifically when it comes to effective use of the Discrimination Act to claim their rights. The State Party Sweden is recommended to ensure that the Equality Ombudsman is provided with adequate resources to effectively fulfil its broad mandate (CEDAW/C/SWE/CO/8-9, para 17).6 In the concluding observation of the latest periodic Finnish report, the Committee recommends that the state party consider establishing a high-level coordination mechanism within the government, with adequate resources, and with the responsibility and authority to ensure effective gender mainstreaming in all government policies, comprehensively monitor the situation of women, formulate new policies and effectively carry out strategies and measures to eliminate discrimination against women (CEDAW/C/FIN/CO/7, para 13). The Committee is moreover concerned about the high unemployment rate and low wages among groups of women (CEDAW/C/FIN/CO/7, para 26) and they rec- ommend that the state party adopt temporary special measures to accelerate the equal participation of women from disadvantaged groups, including older women, in the labour market, and undertake comprehensive studies on the employment and working conditions of those groups of women, with recommendations for enhancing their effective participation in the labour market (CEDAW/C/FIN/CO/7, para 27). Under the section disadvantaged groups of women, specific concerns are not directed towards older women, but do refer to Sami women. The Committee, it says, is concerned about the low representation of Sami women in the Sami parliament and in other political decision-making bodies. It also notes that maternity clinics, hospitals and day-care and educational institutions rarely provide services in Sami languages. The Committee is further concerned about the lack of shelters in north-

5 Old age care is the expression used by the Committee. 6 Age as grounds for discrimination is, relatively speaking, quite common in Sweden; out of 2382 complaints filed at the Discrimination Ombudsman in 2015, 280 concerned age (12%). However, most of them concerned working life and goods and services, which the means housing market and visits to shops and restaurants. Some concerned social insurance and health services (DO, Annual Report 2016). It is not possible to see where (in geographical space) the complaints are from. 26 E.-M. Svensson ern Finland for Sami women who are victims of domestic violence (CEDAW/C/ FIN/CO/7, para 36). The Committee recommends that the state party ensures that a gender perspective is mainstreamed in all policies and programmes regarding the Sami people, adopts specific measures with the aim of increasing the representation of Sami women in the political and public life of both their community and thestate party’s society at large. The state party should also take steps to ensure that all Sami women are provided with adequate social and health services, including maternal health care, and ensure that Sami women who are victims of domestic violence have access to shelters and services that address their needs (CEDAW/C/FIN/CO/7, para 37). Norway has, in contrast to Sweden and Finland, incorporated the Convention and the Optional Protocol into the Human Rights Act, which is welcomed by the Committee in its concluding observations of the latest Norwegian report in 2012 (CEDAW/C/NOR/CO/8, para 5). At the same time, there is similar lack of awareness in Norway as exists in Finland and Sweden (CEDAW/C/NOR/CO/8, para 11). Older women are not addressed in the concluding observations by the Committee. It might be related to the high scoring for Norway in the Global AgeWatch Index 2015. Nor are rural women addressed. Sami women are discussed in one paragraph. It is noticed that they continue to face multiple forms of discrimination, including difficulty accessing adequate health care due to the unavailability of adequate services for Sami women living outside the defined Sami area (CEDAW/C/NOR/ CO/8, para 31). The Committee calls upon the state party to ensure that all Sami women are provided with adequate social and health services, including mental health services, and that gender perspectives are mainstreamed in all policies and programmes regarding the Sami people (CEDAW/C/NOR/CO/8, para 32). In the Committees’ concluding observations on the reports from both Finland and Sweden, concerns are expressed about multiple and intersecting forms of discrimination against women that are neither adequately addressed nor provided protection (CEDAW/C/FIN/CO/7, para 10), (CEDAW/C/SWE/CO/8-9, para 14). A similar concern in the observations on the Norwegian report is the lack of attention, in some laws and policies, to the specific needs of minority groups of women, including women with ethnic minority background, often leading to intersectional discrimination (CEDAW/C/NOR/CO/8, para 9). The lack “of awareness of the convention in general and its limited invocation or application in court proceedings” is also addressed: (CEDAW/C/FIN/CO/7, para 8), “…that the provisions of the convention, the optional protocol thereto and the Committee’s general recommendations are not sufficiently known in the state party, including by women themselves. The Committee is further concerned at the continued lack of references to the convention in court decisions in the state party” (CEDAW/C/SWE/CO/8-9, para 12). The Committee states that the implementation of the convention, the optional protocol and the concluding observations requires awareness among a variety of stakeholders. That goes not only for the government, the ministries, the parliament and the judiciary and other relevant state institutions at all levels (national, regional and local), but also for employers’ associations, trade unions, human rights and women’s organisations, universities, research insti- 2 Older Women, the Capabilities Approach and CEDAW: Normative Foundations… 27 tutions and media, local community (CEDAW/C/FIN/CO/7, para 42). The same message is directed to Sweden and Norway. Sweden is also encouraged to enhance efforts to raise awareness among all stakeholders, among women belonging to disadvantaged groups, including Sami women (CEDAW/C/SWE/CO/8-9, para 13) and the same goes for Norway (CEDAW/C/NOR/CO/8, para 11). To sum up, what is most striking considering the situation in the three countries regarding older women in the North, is the fact that there are so few considerations by the Committee. It could be interpreted that the situation is quite acceptable, or, that the situation for older women is based on the situation in the countries as a whole and not considering the specific region. And, additionally, the concluding observations are based on the country reports, and they are dependent on what issues have been brought up earlier. The Committee does not do any empirical studies of their own. So even though the Convention and its procedural setting are important in bringing the situation of women to the fore, there are some blind spots and problems.

2.6 Conclusions: What Are the Possibilities to Fulfil the Capabilities for Older Women in a Northern Context? Can the Capabilities Approach Help Us?

Nussbaum’s capabilities approach has some elements that are useful when analysing the situation for older women in the Nordic Arctic. As stated above, the most important aspects in Nussbaum’s approach are the focus on human dignity instead of enhancing individual freedom, the normativity (a set of fundamental capabilities are identified), and the central role of the nation-state (as the responsible political subject for the achievement of a minimum threshold of all capabilities). In order to promote human dignity some fundamental capabilities ought to be guaranteed to a certain level. And, according to Nussbaum it is the nation-state that is responsible to guarantee these. Nation-building starts from a set of political principles, and tools to achieve the fundamental capabilities are legislation and welfare state measures. (Nussbaum 2013, p. 78). These expectations on the nation-state, to be active in guaranteeing a certain level of welfare (or fundamental capabilities), present in the approach, are what the Nordic welfare states are characterized by. And as mentioned above, the approach is moreover close to human rights instruments. It is apparent, when studying the CEDAW Committee’s concluding observations, what the similarities are between the ten capabilities and the concerns of the Committee. The aspects raised by the Committee; the situation when it comes to health, political representation, access to resources and the ability to have power over your own life and society (which is also the primary goal for the Swedish gender equality policy), access to care and social service, etc., corresponds well with Nussbaum’s capabilities. 28 E.-M. Svensson

Even though the nation-state is the political subject, Nussbaum points out the responsibility to ensure every individual a certain level of dignity. The state is therefore also responsible for the search for knowledge about the situation in specific areas of the state’s territory. What is more, the relationship between nation-states is also emphasised, as a way to promote or force a nation-state which does not guarantee a certain level of dignity to all its citizens, to make improvements. The new paradigm, the model for human development or the capabilities approach, can be used as a normative tool for the claim for improvement of the situation for older women in the Nordic Arctic. What is further needed is available empirical data on the situation. Also needed are public governing bodies and institutions that do not outsource the governance to other subjects or to inter-governmental bodies whose agendas overshadow the assurance of fundamental capabilities for all citizens. The marketisation of publicly financed service, addressed in the chapters by Petra Merenheimo and Heli Valokivi, can be examined through a capabilities approach as a relational theory addressing society’s responsibility to carry out redistribution (Nielsen 2014).

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The International Forest Forum of the Barents Euro-Arctic Council. http://www.barentsco- operation.org/events/The-International-Forest-Forum-of-the-Barents-Euro-Arctic-Council- /3cn33qja/d8ba4e0c-2385-4eb9-8ab3-24d3b601e0d8. Accessed 16 Oct 2017. The Long-Term Survey of the Swedish Economy. (2015). SOU 2015:104 (Långtidsutredningen 2015 Huvudbetänkande, 247). The World Bank. (2006, April). Governance & gender equality, gender and development group. http://www.capwip.org/readingroom/TopotheShelf.Newsfeeds/2006/ GovernanceandGenderEquality%282006%29.pdf. Accessed 2017-02-08. The World Bank. Population density. https://data.worldbank.org/indicator/EN.POP.DNST. Accessed 11 Oct 2017. Transforming our world: The 2030 agenda for sustainable development. Resolution adopted by the General Assembly on 25 September 2015. United Nations A/RES/70/1. https://sustainabledevelopment.un.org/post2015/transformingourworld. Accessed 12 Oct 2017. United Nations Development Programme. Human development reports. http://hdr.undp.org/en/ content/human-development-index-hdi. Accessed 11 Oct 2017. Wennberg, L. (2017). Wellbeing and gender equality for the elderly in the context of Arctic Sweden. Special issue: Gender equality in the Arctic and the North. Nordic Journal of Law and Society, 1(1–2), 176–193. Chapter 3 A Feminist Socio-Legal Approach to Ageing, Gender and Welfare in Northern Sweden

Lena Wennberg

Abstract A feminist socio-legal approach, understood as the “interface with the context within which law exists” is in this chapter elaborated and used to identify, think through and discuss the intersecting legal, political and economic discourses that could have constraining effects on the welfare of women in the rural and multicultural northernmost part of Sweden. The recognition of the gendered ‘socio’ and the identification of power imbalances in policy and law, underline the importance of a framework for further comparative analyses of welfare services and care in context. In an optimistic view on human rights, the strength of the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), with its holistic and transformative approach, could provide a space for more grounded empirical research – on whether and with what outcome the CEDAW has been invoked, adopted or resisted in specific contexts – and jurisprudence that could promote social change and a life in dignity for women of any age, culture, ethnicity, or minority group.

Keywords Socio-legal studies · Ageing · Gender · Welfare · New governance · Human rights · Elder services and care · Swedish welfare state

3.1 Introduction

Many relationships and corresponding rights and duties, which are regulated traditionally by the nation-state, are undermined by the intensification and expansion of economic, political and cultural relationships across the globe (Banakar 2010) and by political and legal agreements (Svensson in this edition). A feminist socio-legal approach, understood as the “interface with the context within which law exists” (Wheeler and Thomas 2002, 271), is elaborated and used in this chapter as tool to

L. Wennberg (*) Department of Political Science, Umeå University, Umeå, Sweden e-mail: [email protected]

© Springer Nature Switzerland AG 2019 31 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_3 32 L. Wennberg identify, think through and discuss the intersecting legal, political and economic discourses that could have constraining effects on the welfare of women in the rural and multicultural context of the northernmost part of Sweden. The point taken here, drawn on my own recent work on women’s wellbeing and gender equality in the Swedish Arctic (Wennberg 2017), is that elder services and care provided in the intersection of public and private providers – by the family, the state and the market – mainly seem to be constructed politically, legally and economically for urban contexts and based in the notion of ageing as autonomous, active and participatory. Therefore, politics and law on multiple levels – national, regional and international – need to be socio-legally confronted against one of the various, divers and specific contexts in which people age and probably, at some points of their lives, will become in need of welfare services and care. The northernmost part of Sweden in focus here, is part of the Barents Euro- Arctic region. Historically, this part of Sweden could be characterized by mobility, in ancient times and still often in the east-west direction (Hederyd and Hansson 1982), and by various cultures, minority languages, national minorities and indigenous people (Länsstyrelsen Stockholm n.d.). What is common for the minority groups is that they have populated Sweden over a long period of time and that they constitute groups with a distinct affinity. They also have their own religious, linguis- tic or cultural affinity and a desire to retain their identity (Länsstyrelsen Stockholm no date). During the last century the extraction of natural resources in the form of forestry and mining has played a crucial role in job-creation and economic wealth in north Sweden, at the same time as the exploitation has led to the deterioration of the environment and living conditions. Major structural and demographic changes have taken place, especially during the last 50 years. This has led to a shrinking and ageing population in the northern parts of Sweden as the younger people, in particular the young women, have left the region to earn a living (Statistics Sweden 2014). Projected growth is dependent entirely on net in-migration, which however is shown to be insufficient to counter natural population decline (Andrew 2014). The ageing, shrinking and gender-skewed balance in the population implies sparse tax revenues and that the geographically extended and financially “poor” municipalities lack the financial and human resources needed to meet the statutory local responsibility to provide welfare services and care for old people in need (Wennberg 2017). A socio-legal approach in discussing ageing, gender and welfare in context departs from and is meant to broaden earlier policy-related research on ageing (Andrews et al. 2013, Higgs and Gilleard 2015, Naskali et al. 2016). It also departs from elder law as a field of study that more recently has developed in Sweden (Numhauser Henning 2013; Albertson Fineman et al. 2017), mostly with national and European points of reference, but without addressing ageing, gender and welfare in specific and local contexts. 3 A Feminist Socio-Legal Approach to Ageing, Gender and Welfare in Northern Sweden 33

3.2 A Feminist Socio-Legal Approach to Ageing, Gender and Welfare

Socio-legal studies is now sufficiently well-established internationally as a field of enquiry. The focus on the ‘socio’ in socio-legal studies, reflects a wide-spread and growing sense that rapid change such as globalization and neoliberalism pose fresh challenges and that diverse and contested understandings of the social require attention where the legal is also an issue (Feenan 2013, 3). Early socio-legal studies continued a reaction, first established in the US, against legal formalism. Much of the early work adopted an instrumental view of law or the legal with a concern to find facts deriving from scientific empirical research about the social effects of law. Law was primarily seen in functionalist terms, focusing on the rules and what they do rather than understanding law in structural terms, i.e. how law is structured conceptually and interacts as a system (Nelken 1981). Socio-legal studies, however, does not admit a singular and unitary concept of the social, but eludes traditional legal scholarship, and includes various empirical methods to study what is legal about legal processes, legal institutions and legal behaviour. It also analyses legal documents in a sociological way. The ‘law in action’ and ‘law in context’ approaches that initially were developed in socio-legal studies were, as concluded by Feenan, increasingly challenged throughout the 1980s and 1990s by scholars who saw the co-constitutive relation between law and society, and by poststructuralist critiques drawing from Foucault (Feenan 2013, 3–8). More recently, forms of discourse analysis, cultural studies, feminism and post-modern schools of thought have also gained ground within socio-legal research (see Banakar and Travers 2005, xiii). In Europe, socio-legal research has grown mainly out of law schools’ interest in promoting interdisciplinary studies of law, and has provided an alternative and challenge to doctrinal studies of law which are mostly occupied with rule-oriented legal research. Socio-legal jurisprudence is understood to go beyond law in books and the so called black-letter legal research, i.e. the more rule-oriented approaches in legal science, which at least in a Swedish context has been predominant. The sociology of law, yet another scientific approach to law and society, receives its intellectual impetus mainly from mainstream sociology and aims to transcend the lawyers’ focus on legal rules and legal doctrine by remaining” exogenous” to the legal system to construct a theoretical understanding of the existing legal system in terms of the wider social structures (Campbell and Wiles 1975). In this view the law, legal prescriptions and legal definitions are not assumed or accepted, but their emergence, articulations and purpose are themselves treated as problematic and worthy of study. Sociology of law is nevertheless not only seen as a tool for data collection but is also meant to reveal critically the impact of jurisprudence on the social world, for example Johnson’s (2014) sociological analysis of the jurisprudence of the European Court of Human Rights (ECtHR). 34 L. Wennberg

The ‘socio’ in socio-legal research, in Wheeler’s and Thomas’ view, however, does not refer to sociology or social sciences, but represents ‘an interface with a context within which law exists, be that a sociological, historical, economic, geographical or other context’ (Wheeler and Thomas 2002, 271). Cotterrell has sought to ‘tilt’ socio-legal study towards a focus on power and verify links between law and morality. Of power Cotterrell writes: “Most socio-legal work explores the power of the law: how it is structured and organized, its consequences and sources, and the way people and organizations seek to harness it, have differential access to it or find themselves differentially affected by it” (Cotterrell 2002, 632). In feminist legal studies, there is a long tradition of viewing the legal system as pluralistic, multi- layered, contradictory and constructed, and an expression of power relations. Feminist critique has often taken on the role of making visible the impact of the system in a specific context, which include both philosophical and sociological concerns. The boundaries of legal scholarship are no longer seen as being determined by the inner logics of law, but by a social context (Svensson 2007). A changed perception of the limits of law and legal scholarship is also reliant on new methods in legal scholarship. In recent decades, discourse analysis has been used methodologically and theoretically to reveal how legal texts, understood as discourses, contribute to and take part in the construction of social phenomena and power relations in society (e.g Niemi-Kiesiläinen et al. 2007; Wennberg 2008; Burman 2010). Law, understood to be social and contextual, invokes ‘external’ political and ideological discourses extending the field of study beyond a narrow perception of law (Wennberg 2008). Feminist theory has also recognized that women do not necessarily share the same experiences at any given time and place. Rather the realities of women’s lives are complex and shaped by other social posi- tioning in conjunction with gender, for example age, ethnicity, sexuality and disability, often expressed in terms of the concept of intersectionality (see Crenshaw 1991; Grabham et al. 2008). For feminist legal scholars, socio-legal studies has had an appeal precisely because it avoids a conception of law as autonomous and decontextualized. In her writings on the gendered ‘socio’ in socio-legal studies, Hunter has elaborated the two strands of feminist socio-legal critique of law and illustrated several of the ways in which the socio is gendered (Hunter 2013, 205–227). The first of these strands critiques laws that fail to recognize the realities of gender difference and women’s lives and argues that these need to be considered in legal policy and decision- making. In this strand, which seeks to confront law with gendered ‘sociological realism’, law is seen as an institution which excludes women. The second strand, drawing on poststructuralist scholarship, critiques the ways in which law’s constructions of gender produce constraining effects on women’s lives. This strand sees law as a discourse which contributes to the production of disciplined subjects, cri- tiquing law’s role in the constitution of the gendered socio. Armed with the insight that gender persists as a key organizing principle of the socio, feminist socio-legal studies interrogates the interaction between the socio and the legal, what crosses or is blocked at the boundary between law’s inside and outside. (Hunter 2013, 205). 3 A Feminist Socio-Legal Approach to Ageing, Gender and Welfare in Northern Sweden 35

A significant body of socio-legal work, as shown by Hunter, continuously ignores or refuses to speak about the gendered nature of the ‘socio’. In her view, this failure limits the ability of socio-legal research to describe and critique the world as it is (Hunter 2013, 218). In this chapter, the feminist socio-legal approach provide a scope for attention to the ways in which intersecting legal, political and economic discourses fail to reflect women’s experiences of gendered lives.

3.3 Legal, Political and Economic Discourses on Ageing, Gender and Welfare

The welfare state in general is understood to play an important role in the solidarity between generations, but the notion of generational solidarity is increasingly challenged (Powell and Hendricks 2009). Contemporary changes in welfare legislation are now subject to internationally agreed treaty norms and obligations, but economic globalization constrains the political will to meet such obligations by stressing fiscal austerities and welfare efficiencies (Wennberg 2008). Institutions classified as promoting “new governance” values have come to extend deeply into national policy standards (ibid. 134.). Alexander Somek has concluded that new governance is really a way to rationalize the implementation of permanent policy adjustments that shift programme standards from legally-based norms to concepts of efficient management (Somek 2011, 56–57). In his view, new governance strategies differ from legal regimes designed to protect concrete rights by replacing legally-defined standards with innovative and cost-cutting management practices. This impacts on legal regulation and on the discursive ways of representing social reality (Wennberg 2008). “New governance” extends deep into nation states, not necessarily through social policies as is conventionally understood, but rather in terms of shaping discourses and processes through subtle patterns of influence on, and the insinuation of, values, ways of thinking and agency (Wennberg 2008, 134; 2017). Rights and duties which are regulated traditionally by the nation-state are undermined by the intensification and expansion of economic, political and cultural interrelationships across the globe (Banakar 2010). Today, states no longer hold the monopoly on regulating many of the social relationships that traditionally fell within their jurisdiction. This has implications for how we can define and study the relationship between law, in terms of the sovereign state, and society, in terms of locally constructed relationships, practices, cultures and institutions. (ibid. p. 20). Moreover, the ascent of human rights in national, international, legal and political orders in recent years appears to have made the debate about the relationship between law and society even more intense. Interfacing with context, therefore also means that legal and political discourses on ageing, gender and welfare need to be culturally contextualized. 36 L. Wennberg

3.3.1 Active Ageing in Regional and International Governance

In the restructuring of the welfare state, including the Nordic welfare states, competition over resources and the resource allocation between age groups have gendered social consequences of importance for the ageing population. How services and care for old people should be provided in the intersection of public and private spheres – by the state, local communities, the family and the market – are legally, politically (and economically) contested. The ageing post-war generation, low fertility rates, and rising life expectancies challenge government attempts to restructure the welfare state while allocating revenues to meet the needs of all age groups. The welfare state model of social organization is often understood to strengthen solidarity between generations (Powell and Hendricks 2009, 42). Attempts to restructure the welfare state model to meet the needs of people of old age has given rise to perceptions that they have become burdens on domestic economies. These tensions have placed pressure on many governments, particularly on low-revenue local governments, to meet the needs of all generations adequately (ibid). Overall, regional measures to meet the needs of people of old age taken by the European Union (EU) mostly have the character of non-binding soft law. Nevertheless, these measures impact on the social construction of old age and the provision of services and care in national welfare regimes. According to the EU Treaty (TEU), and its Article 3, solidarity between generations is one of the Union’s goals. Moreover, Article 25 in the European Union Charter of Fundamental Rights (OJ C 83, 30.3.2010: 389–403), that is binding for the EU institutions and the Member States, declares that “the Union recognizes and respects the rights of the elderly to lead a life of dignity and independence and to participate in social and cultural life”. The EU includes the commonly agreed objectives of combating social exclusion and discrimination, of promoting social justice and social protection, and of gender equality (Art. 3 (3) TEU). The strategy of mainstreaming gender that is laid down in Article 8 Treaty on the Functioning of the European Union (TEUF) is an important mechanism for promoting these objectives. Internationally, the United Nations’ Second World Assembly on Ageing adopted, as a main development objective, the Madrid International Plan on Ageing (United Nations 2002) which includes the recognition that persons, as they age, should enjoy active participation in the economic, social, cultural and political life of their societies. The objective of “active ageing” has also become part of the EU agenda. The concept of active ageing is expressed by the European Commission as “helping people stay in charge of their own lives for as long as possible as they age and, where possible, to contribute to the economy and society” (http://ec.europa.eu/ social/main.jsp?catId=1062). Active ageing was firmly established by the European Parliament’s decision regarding the European Year for Active Ageing and Solidarity between Generations 2012 (Decision No 940/2011/EU). The Decision had as its main objective to “facilitate the creation of an active ageing culture in Europe based on a society for all ages”. Within this framework, the European Year had as its objective to “support the 3 A Feminist Socio-Legal Approach to Ageing, Gender and Welfare in Northern Sweden 37 efforts of Member States, their regional and local authorities, social partners, civil society and the business community, including small and medium-sized enterprises, to promote active ageing and to do more to mobilise the potential of the rapidly growing population in their late 50s and over. In doing so, it should “foster solidarity and cooperation between generations, taking into account diversity and gender equality”. Promoting active ageing was meant to create “better opportunities so that older women and men can play their part in the labour market, combating poverty, particularly that of women, and social exclusion, fostering volunteering and active participation in family life and society and encouraging healthy ageing in dignity.” This involved, inter alia, adapting working conditions, combating negative age stereotypes and age discrimination, improving health and safety at work, adapting lifelong learning systems to the needs of an ageing workforce and ensuring that social protection systems are adequate and provide the right incentives. On the basis of these overarching objectives, the European Year had the main objective to raise awareness of the value of active ageing and to highlight the useful contribution that older people make to society and the economy, and to promote active ageing, solidarity between generations and the vitality and dignity of all people and enable them to lead an independent life (Decision No 940/2011/EU, Art. 2). The designation of 2012 as the European Year of Active Ageing offered a potential focus for renewed policy action in the EU and a paradigmatic change for ageing policy across the EU (Walker and Maltby 2012: 21: 117–130). Having regard to earlier actions on active ageing taken in the EU, a European Parliament resolution on the European Innovation Partnership on Active and Healthy Ageing (2012/2258 (INI), followed in 2013 (European Parliament Resolution OJ C 24 22.1.2016, 11–19). The resolution welcomed the Commission’s proposal for a European Innovation Partnership which promotes a new paradigm viewing ageing as an opportunity for the future rather than a burden on society. Furthermore, it emphasizes that this opportunity should not be limited to technical (ICT) innovations and their potential for the internal market, for EU industries and enterprises, since ICT solutions should be user-friendly as well as end-user-oriented, particularly towards older persons It should also include a clear and unambiguous strategy with social objectives which promote and formally recognise the role of older people, and the value of their experience and of their contribution to society and the economy, free from stigmas and discrimination (ibid). Ageing, conceptualized to be active, accordingly has become a topic given increasing attention in international and regional policy, although there seems to be no consensus about its actual meaning, and the topic is subjected to critical investigation (Boudiny 2013, 1077–98). The emergence of a dominant discourse and its effects on a policy-based understanding of ageing in international and European policy represents, as argued by Moulaert and Biggs (2012, 23–43), a new orthodoxy of ageing subjectivity, restricting the social contribution of older adults to work and work-like activities. This ageing subjectivity, seemingly is coloured by ideological notions of autonomy and participation, is, as shown above, also reflected by the European Parliament resolution on healthy and active ageing, in which older people’s contribution to society and the economy is underlined as one of the main goals. 38 L. Wennberg

Subjective “wellbeing”, or “quality of life”, are other frequently used policy concepts that seem to be closely linked to the active ageing paradigm. As a research concept it has also been marked by persisting problems of definition and measurement and by uncertainties about its changing pattern over the life course. Instead, “resilience” has been proposed to constitute an important concept for research on well-being in relation to age (Kahn 2002). In view of the various innovative and cost-cutting management practices and the active ageing policy objective on international and regional levels now identified, governance of the Arctic Council also needs to be considered. The geopolitics of the Arctic Council also partake in discursive constructions of ageing, gender and welfare in the rural and multi-cultural Arctic part of Sweden. Gender equality, including women’s human rights law and policies, however, are claimed to be blind spots in the geopolitics of the Arctic (Lahey et al. 2014). In the scientific reports of the Arctic Council (ADHR), as shown by Einarsson et al. 2004, the intersections of different power structures, such as gender and indigeneity or gender and rurality, however, have been left out (see Gunnarsson and Svensson 2017: 6–15; Svensson 2017: 16–64). The Arctic Council, as key actor, forms the politics but is also a producer of discourses and representations of the Arctic, thus exercising power in forming the Arctic, gender and gendered structures (Gunnarsson and Svensson 2017). Finland holds the 2017–2019 Chairmanship of the Arctic Council. In their programme, sustainable economic development is explained to constitute the key to resil- ient communities. During their Chairmanship, Finland prioritizes environmental protection; the development of digital health and social services connectivity; that is, well-functioning communication networks and services for economic development; meteorological cooperation; and education (Arctic Council, Finland’s Chairmanship Program 2017–2019). Finland proposes to explore how the goals and framework of the 2030 Agenda for Sustainable Development, adopted by the United Nations in 2015 (United Nations, A/RES/70/1), can be used in Arctic cooperation for the benefit of humans and nature. The sparsely populated communities, cultural diversity, a wealth of minority languages, differing socio-economic conditions, and long distances in the Arctic are mentioned and fair educational opportunities in remote areas are expressed as key for creating sustainable development and building resilience in Arctic communities. As to gender equality, it is supported but restricted to mean raising awareness of the contribution of women and men to sustainable development (ibid).

3.3.2 Elder Services and Care in the Swedish Welfare State

Even though responsibility for welfare provision remains primarily in the hands of nation-states, international and regional governance and law nevertheless may have a significant impact upon domestic welfare systems (Wennberg 2008, 131). To understand the impact of the multi-level governance identified above, we need to turn to the features of elder services and care policy and law in the Swedish welfare state and how these are currently put to the test. 3 A Feminist Socio-Legal Approach to Ageing, Gender and Welfare in Northern Sweden 39

The Swedish welfare model is residence-based and gender-neutrally constructed. The system was originally based in the Social Democrat values of “positive freedom” and equality and is founded on general principles of solidarity and public responsibility, rather than individual rights and individual interests. In Sweden, extensive welfare policies have projected the impression of overall equality and social citizenship. Gender equality and the notion of social citizenship in the Swedish and the other Nordic welfare models have, as argued by Nousiainen (2001, 25–77), been strongly linked to the consideration of care as a collective public responsibility rather than an individual and private one, expressed in terms of a caring state liberated from conservative and neoliberal hegemony. Nordic welfare states have an extremely high level of social service provision compared to most other countries. Accordingly, the “Nordic welfare state” is not only a ‘caring state’ and ‘social insurance state’ but also a ‘service state’ (Sipilä et al. 2009, 181–99). These characteristics have led to the vision of a woman-friendly welfare state (Gunnarsson 2013). In Sweden, public elder care is regulated in the Social Services Act (2001:453). The Act has a framework construction, which means that the local Social Service Board in each municipality is responsible for fulfilling the stated social objectives of the law, that is ensuring that all older persons are living safely, independently, actively, and meaningfully in solidarity with others. In addition, local social service agencies are responsible for promoting good quality housing for people of age and assisting with domestic services if needed. The municipality is responsible for establishing special housing for elders in need of special support, and, to the greatest extent possible, give them choices as to when and how housing and other easily accessible services will be provided. According to the National Audit Office, the government has not done enough to tackle the housing problem for older people, shown to be particularly striking for those living in depopulated parts of northern Sweden. Old people end up in a situation where moving is not an option as there is no alternative housing available. (Riksrevisionen [National Audit Office] 2014). Elderly people, especially women who live longer than men (Statistics Sweden 2017), are therefore at risk of having difficulties accessing services important for their well-being and quality of life, since there may be no transport to the places where commercial and social services of various kinds could be provided (Wennberg 2017). Regardless of stated social objectives, the assessment of whether a person is entitled to services in the home or special housing is made according to Sect. 4:1 of the Social Services Act. This section establishes the rights of individuals to claim rights to specific forms of support and assistance whenever they cannot be provided by themselves or by other means. In 2010, these rights were strengthened by adding a statement of new national values of wellbeing and dignity for old people. These new statements of values were meant to clarify the fundamental, normative, and ethical standards for elder care and provide a means of steering management of care services in the direction of improved quality of care. In the preparatory work to the new legislation, the government indicated there will still be disparities in how municipalities choose to organize, prioritize, and perform welfare services. However, based on these new statutory values, the national government had taken 40 L. Wennberg steps to ensure that old people ought to have equal chances to live in dignity wherever they might reside in the country (Prop. 2009/10:116, 25). These values, however, do not provide any concrete legal basis in the assessment of whether an individual is entitled to specific forms or amounts of services or assistance in order to experience a reasonable standard of living. Municipal autonomy, different economic/financial conditions, and the political priorities of each municipality mean that all elder persons in need continue to face the risks of unequal treatment in terms of the results of the application of the law (Wennberg 2017). To date, court cases applying these principles show little consistency in defining “reasonable standard of living” and are leaving the delineation of appropriate standards to local priorities, politics, and attitudes (ibid). From 1 January 2010 a law on national minorities and minority languages (2009:724) applies as part of the Swedish Government’s strategy to protect human rights. Municipalities in administrative areas where minority languages are used were made responsible for providing services and care by personnel with language skills in Finnish, Sami, and Meänkieli. However, the regulation does not constitute a claim of right for those speaking minority languages. Rather than imposing an immediate responsibility to employ staff with skills in minority languages, the new regulation merely suggests such skills should be a persuasive qualification in recruiting care workers (Prop. 2008/09, 135). In the 2009 Act on System of Choice (2008:962) in the public sector came into force within healthcare and social welfare services. As a result, to meet the political demands for free choice for elderly citizens, many of the Swedish municipalities have increased the scope of private alternatives in the provision of services and care. This new approach in Swedish social policy has also found expression in the introduction of choice in primary care, deregulation of the pharmacy market, freedom of choice in childcare and tax deductions for household services. Privatization in elderly care means out-sourcing, with different care companies competing for contracts, while care provision remains a public matter, financed through tax revenues (Andersson 2013, 170–89). Informalization and refamilialization of welfare services and care, especially shown in the field of elder services and care (Wennberg 2017), are examples of how the responsibility for the general welfare of citizens is passed on to the individual citizens themselves (Banakar 2010, 23). The responsibility for carrying out services which have primarily been a public responsibility is now shifted back to families and from the state to local communities (Wennberg 2017).

3.4 Human Rights for Rural Women of Old Age

Human rights for women, their potential and added value, how they interact with national social policies and law, their implementation and potential for transformative change (see Svensson in this edition), also need to be interfaced with the northern rural and ageing context in focus here. Could human rights have a potential and added value in the context of regional and international governance moving, as 3 A Feminist Socio-Legal Approach to Ageing, Gender and Welfare in Northern Sweden 41 argued by Somek above, from law to management, aimed at counteracting the political challenge and economic threat of an ageing population? The specificities of older persons as a distinct human group and the emergency of a relatively strong discourse on the rights of older persons within a broader phenomenon of the ‘frag- mentation of human rights’ represents, as argued by Mégret (2011), a growing challenge. Human right claims have begun to challenge, in ways quite reminiscent of the disability rights movement, the dominant welfare approach to old people, arguing that rights make better sense of the importance of the stakes and the need to mobilise normative resources vis-a-vis the state. Could human rights for women in a welfare state, increasingly put to the test, then be a tool to promote gender equality for ageing women in the context of sparsely populated northern Sweden? Considering recent developments in international social rights theory and practice, particularly the recognition of the indivisibility of civil, political, social and economic rights, the question is no longer whether international human rights law has something to offer women, but where in the human rights system women’s social and economic rights are best protected. In feminist legal enquiry, the CEDAW Convention’s transformative approach, linking equal rights, social support and socio-cultural elements; the holistic approach, linking civil, political, social and economic rights; and the gender-specific approach to equality and non-discrimination are perceived to be the human rights instruments with the greatest potential value to address and combat women’s socio-economic marginalization, dependency and inequality (Hellum and Aasen 2013, 5). In its decision 26/III, the Committee on the Elimination of Discrimination against Women, was concerned about the multiple forms of discrimination experienced by older women and that older women’s rights are not systematically addressed in State parties’ reports, pursuant to article 21 of the CEDAW. The general recommendation No. 27 on older women and protection of their human rights states: “both men and women experience discrimination based on old age, but older women experience ageing differently. The impact of gender inequalities throughout their lifespan is exacerbated in old age and is often based on deep rooted cultural and social norms. The discrimination that older women experience is often a result of unfair resource allocation, maltreatment, neglect and limited access to basic services” (CEDAW/C/2010/47/GC.1, p. 3). Moreover, the CEDAW Committee acknowledges the contributions of rural women, and the urgent need to improve recognition and protection of their human rights, (CEDAW/C/GC/34, p. 3). In the general recommendation the Committee recognizes that rural women in developed and developing countries often face similar challenges in terms of poverty and exclusion and may have similar needs in terms of accessible services, social protection and economic empowerment (ibid p. 22). Rural women continue to face systematic and persistent barriers to the full enjoyment of their human rights and that, in many cases, conditions have deteriorated. The safeguarding of rural women’s, including older women’s, right to adequate health care is one of the specific dimensions of rural women rights mentioned in the general recommendation (ibid, p. 11). 42 L. Wennberg

3.5 Conclusion

The particular strength of a feminist socio-legal approach in studying ageing, gender and welfare, in a specific context and in a changing welfare state, is that a broader perspective on the complexity of law and of the political is encouraged. Legal discourses on ageing, gender and welfare have material as well as symbolic effects: they contribute to the constitution of subjects and of the social, and as such limit the options available to women in the ways they live their lives. Economically and politically, globalization necessitates an even broader approach. Institutions classified as promoting “new governance” values have come to extend deeply into national welfare policy standards, which are also reflected in the Swedish welfare state. The notion of a demographic threat caused by an ageing population could be criticized as an ideological platform for a more neoliberal attack on the welfare state in favour of greater personal responsibility for our own and our family’s future. Speaking about the gendered nature of the ‘socio’, in late life especially, women will become in need of services and care in rural parts of northern Sweden. The legal, political and economic commonly agreed objectives and discourses on ageing, gender and welfare on multiple levels, and their implementation, therefore need further scrutiny, not separated but in intersection, to reveal the constraining effects, or the possibilities for social change these may result in on a local level. Are women of any age, culture, ethnicity, or minority group in the rural northern parts of Sweden guaranteed a life in dignity? The question is motivated by three things identified in this chapter: (1) the ideological (and neoliberal) notion of active aging that fails to reflect women’s experiences of gendered lives, (2) the lack of attention paid to local priorities, and (3) unequal socioeconomic conditions in the Swedish welfare state. These power imbalances in policy and law, and their effects on gender equality, underline the importance of a framework for comparative analyses of services and care in context. In an optimistic view on human rights, the strength of the CEDAW, with its holistic and transformative approach, could provide a space for more grounded empirical research – on whether and with what outcome the CEDAW has been invoked, adopted or resisted – and for jurisprudence that could promote social change. In light of international human rights, such as the CEDAW and its general recommendations on the rights of rural women of old age, national welfare systems should be subject to further socio-legal feminist analysis on resource allocation, and how services, social protection and adequate healthcare are, or could be, guaranteed in the various local and specific contexts in which women age.

Acknowledgments Thanks to Umeå University, Sweden, who co-sponsored the AEPA-Wel workshop hosted by Umeå Forum for Studies in Law and Society in Umeå, Oct 2017. 3 A Feminist Socio-Legal Approach to Ageing, Gender and Welfare in Northern Sweden 43

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Heli Valokivi

Abstract Finland is ageing rapidly and the challenges to meet the growing care needs of ageing population are evident. In Finland major health and social care reform is being planned. Previously the municipalities have been responsible for the health and social care services. In the near future there will be 18 counties in charge of health and social services instead of municipalities’. The services will be organized by the counties and produced by public, private and third sector service providers. The main ideas of current elder care policy are ageing in place, user involvement and responsibility and reducing costs. In this chapter, I will discuss the complex and intertwined issues of current elder care policy, changing elder care service system and experiences and opinions of municipal officials and professionals in charge of services. What is discussed about ageing and aged people and service users? How do politicians and officials evaluate the current elder care service system and the role of older people in it? The data consists of national policy documents and views of northern municipal politicians and health care and social service officials in the centre of the reform and change. The qualitative content analysis applies to the data evaluation. Older people, aged users and old age appear in the national and local political and reform discussion at multiple levels and with myriad implications.

Keywords Aged people · Elder care policy · Elder care service system · Policy documents · Qualitative content analysis · Service users

H. Valokivi (*) Faculty of Social Sciences, Tampere University, Tampere, Finland e-mail: [email protected]

© Springer Nature Switzerland AG 2019 47 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_4 48 H. Valokivi

4.1 Introduction

Finland is ageing rapidly, and with that change comes numerous challenges to meet the growing needs of the ageing population. The share of citizens over 65 years old in the 2018 population is 20%, and that number is expected to increase to 26% by 2030 and to 29% by 2060 (Age structure of population 2018). Within the last 40 years, the number of citizens over 80 years old has doubled, and the number of citizens over 90 years old has quadrupled. Rural Lapland is a region where a com- paratively high proportion of the population falls into older age groups (Keskitalo- Foley and Naskali 2016). The primary goals and principles of the current Finnish elder care policy are ageing in place, user involvement and responsibility and reducing costs (General description 2018). For nearly 20 years, there has been pressure and political discussion to reshape and amend the health care and social services system. Therefore, the Finnish government (2015–2019, PM Juha Sipilä) aims and intends to enforce a major regional government, health care and social services reform by 1 January 2020 (Timetable 2018). Currently, a number of different-sized municipalities are responsible for health care and social services. According to the reform planning, there will be 18 counties in charge of health care and social services instead of 311 municipalities (Kuntien lukumäärä 2018). The counties will organise health care and social services, which public, private and third sector service providers will produce. Health care and social services reform emphasises customers’ freedom of choice, citizen equality and versatile and cost-effective services (General description 2018). The context of this chapter lies in the complex and intertwined issues of the current Finnish elder care policy and changing elder care service system on a national and local level. I will discuss the views and opinions on ageing of the municipal politicians and officials in charge of the local change of the health care and social services in a transitional phase in northern Finland. What is discussed about ageing and aged people and health care and social service users at the local and national political and policy level? How do northern and national politicians and officials evaluate the current elder care service system and the role of older people in it? How does the period of change look from the perspective of northern Finland? The data consists of national and regional policy documents and views of northern municipal politicians and health care and social service officials in the centre of assessing, planning and enforcing of the reform and change. Qualitative content analysis is employed to evaluate the data. At first, to some extent as an independent part of the chapter, I will describe the Finnish elder care policy and the local government, health care and social service reform. 4 The Aged People in the Transitional Elder Care Policy and Service System… 49

4.1.1 Finnish Elder Care Policy and the Health Care and Social Service System

Finland constitutes one of the Nordic welfare states (Esping-Andersen 1990) or social care regimes (Anttonen and Sipilä 1996). The country emphasises the provision of health care and social services and universal care and services for all inhabitants. The idea of universalism consists of a high degree of equality, high taxes and a high level of public spending on welfare. Health care and social services are organised publicly and are typically produced publicly or purchased and subsidised by public money. Health care and social services are in principle uniform across the nation and available to all citizens. Constitutional law grants access to needed health care and social services as social rights (Suomen perustuslaki 1999). The state offers health care and social services free of charge or at a reasonable fee. The majority of citizens in need of care and services use publicly provided services in Finland, though the private service provision has risen during the last few decades (Kröger et al. 2003; Kröger and Bagnato 2017). Marketisation has increased in the health care and social service sector as a solution of dominant ideological ideas of care. Marketisation has been a policy option in public sector reform all across Europe over the last two decades (Burau et al. 2016; Szebehely and Meagher 2017). Finnish elder care policy is a part of the national welfare policy, regulated by Parliament legislation and guided by the Council of State and Ministries. Ageing policy in Finland is divided into three sectors: employment and retirement policy, pension policy and service policy (Seppänen and Koskinen 2010, p. 401). Here, the focus is on the service policy level, since it will change substantially in the forthcoming regional health care and social service reform. The ongoing reform will not change the other two ageing policy sectors. The elder care policy aims to facilitate older people’s continuing functional capacity, active involvement in society and independent living. Another aim is to diminish institutional care and reduce public expenditure. Finland has a long history of an institutionally driven elder care service system, changed within the last few decades to emphasise more open-care services and living at home (Kröger and Bagnato 2017). In 1986, 15% of 75-year-olds were living in institutional care (Vaarama and Lehto 1996). In 2015, 91% of 75-year-olds were living in their own homes, 2% in institutional care, and 7% in 24-hour-service housing. Of all 75-year-olds, 12% received regular home care, and 5% received compensated informal care (Older people services 2017). The principal objectives of developing older people’s services in Finland are to support living at home and prioritise home care. In addition, Finland has one of the highest rates of citizens age 65 or over living alone (Victor 2013). 50 H. Valokivi

The legislation sets the guidelines for policy implementation. The newest legislation in Finland follows the principle of guidance with information. The main laws steering the health care and social service system, besides the constitutional law, are the Health Care Act (2010) and the Social Welfare Act (2014). There was no specific legislation for old age services before 2013, upon enforcement of the Act on Supporting the Functional Capacity of the Older Population and on Social and Health Care Services for Older Persons (2012) (also referred to as the “Elder Care Law”). The goals of this Elder Care Law are to support the well-being, health, functional capability and independent coping of the aged population. The law guaran- tees an individual and multi-professional assessment, planning of services to guide the individual service entity and coordination of services by users and professionals jointly. Elder care law enforcement emphasises gerontological expertise in the assessment process and the quality of services. The law promotes municipal and local strategic plans and councils of older people. However, there is only one subjective right written in the Elder Care Law: service needs assessment. There are no subjective rights to receive services, and the service decisions are based on professional assessment and discretion (Kalliomaa-Puha et al. 2014). Due to the discretionary limitation on the rights to services, the idea of freedom of choice is somewhat controversial, as the service users do not have full freedom of choice in their rights to services. Otherwise, the Elder Care Law sets guidelines for the implementation of elder care services and the strategic planning of the services at the local level. Ageing policy emphasises living at home and ageing in place (Anttonen and Karsio 2016; see Andrews and Phillips 2005). Elder care services should guarantee that older people can live safely in their own homes and in familiar residential environments as long as possible. The assessed needs and individual service plan may bring services to home up to four or five service visits per day. Using assistive devices and new technology improves the possibility of this (Leikas 2014; Rasi and Kilpeläinen 2015). Older adults value ageing in place and often wish to live at home as long as possible; however, they see the limits of living at home according to individual capacity and available support and resources. At a certain point, they prefer institutional care (Puthenparambil et al. 2015; van Aerschot 2014; see Outila et al. in this book). Additionally, the costs of home care may overrun costs of institutional care (Lumio 2015). The Elder Care Law enhances living at home and rules that institutional care is possible only on medical or patient safety grounds (Act on Supporting 2012, 14§). Institutional care in nursing homes, care housing and health centre wards has diminished, and intensive care housing has expanded during the 2000s (Kotihoito ja sosiaalihuollon 2016). Several agencies from the national and regional levels to the local level implement and enforce elder care services. In Table 4.1 is the ensemble of the agencies responsible for health care and social services and their tasks in Finland. The above-mentioned agencies form a line from guidance and regulation to research, assessment and implementation of services from the national to the local level. The national legislation regulates health care and social services for the older 4 The Aged People in the Transitional Elder Care Policy and Service System… 51

Table 4.1 The agencies responsible for health care and social services and their tasks in Finland Organisation Tasks The Ministry of Social Affairs Legislation preparation, implementation and guidance and Health National agencies and institutes Research, development and supervision State provincial offices Development promotion, assessment of service availability and quality control Centres for expertise in social Regional development and research welfare Municipalities Implementation of services at the local and individual level Social welfare (2018) people in Finland. The municipalities enforce and implement services at the local level. The health care and social services for the older people in all parts of Finland consist of: 1. service needs assessment (right to every person age 75 and older); 2. prevention services (information, preventive home visits and day centres); 3. health services (health centres and specialised medical care); 4. services for war veterans (rehabilitation, care and income security); 5. home services, home nursing and support services (often combined as home care); 6. housing services (renovation and sheltered housing); 7. institutional care; 8. informal care support; 9. memory rehabilitation (Services and benefits for old people 2018). As of 2018, Finland has 311 municipalities of very different sizes (Finnish municipalities and regions 2018), in charge of arranging and implementing the required and needed health care and social services of their residents. At the end of 2016, the smallest municipality in the whole country was Sottunga in Ahvenanmaa with 96 inhabitants. The smallest mainland municipality was Luhanka with 756 inhabitants, and the largest municipality was Helsinki with 635,181 inhabitants (Väestötietoja kunnittain 2017). Thus, the implementation of health care and social services for older inhabitants in need of care varies greatly between municipalities and regions in Finland. Different service producers may provide the assessed and needed services, which consist of public, private and third sector organisations and participants. In addition, municipalities may cooperate in service provision. Health care and social services for older people comprise of mixture service organisers and providers. Elder care in Finland is characterised by a mix of elder care markets (Burau et al. 2016) and welfare mix or re-mix (Leibetseder et al. 2017). Within the last 10–20 years, pressures on the current welfare state have risen. Difficulties in financing and a change in the overall level of demand for welfare have increased due to changes in demographics, family patterns and the labour market. In addition, political and ideological ethos have changed the context and 52 H. Valokivi

objectives of welfare policy-making. (Hodge and Greve 2007). The variety of service implementations in numerous municipalities and localities sets citizens at a somewhat uneven position. The idea of universalism has weakened. Marta Szebehely and Gabrielle Meagher (2017) argue that the de-universalisation of health care and social services is happening in all Nordic countries, particularly in Finland and Sweden. There have been increases in for-profit provisions of publicly funded care services and increases in family care and services paid out-of-pocket allocated toward de-universalisation. The population is ageing faster in Finland than in other Western countries, and life expectancy has increased rapidly in Finland. Finland is facing several policy challenges. Pension schemes are under financial stress due to low fertility, a shrinking labour force and increasing longevity. The need to lengthen economically-active lifespans has risen, bringing actions to increase the retirement age to the forefront. Spending on health and long-term care is expanding, and the demand for social and health services is increasing due to demographical changes. The need for improved productivity of public services and the use of public expenditures is loud and clear. (See Karsio and Anttonen 2013; Hoppania 2015.) The national health and social policy strategy, Socially Sustainable Finland 2020 (2011), was published in January 2011. The primary values and goals in the document are that a socially sustainable society treats all citizens equally, reinforces participation and emphasises a sense of community, supports health and a disability- free life and provides for the security and services required by its members. This national strategy also guides ongoing regional government and health care and social service reform preparation.

4.1.2 Ongoing Health Care, Social Services and Regional Government Reform

Regional government, health care and social services reform are the central objectives of the Council of State led by Prime Minister Juha Sipilä (2015–2019). At the time of writing, in the summer of 2018, Parliament is discussing and handling the drafts of proposed laws concerning the reforms. At this point, Parliament still has not made final decisions on regional government, health care and social services reform. It is possible that members of Parliament will postpone or cancel the reform. According to the Council of State’s proposal, health care, social services and regional government reform will establish 18 new counties and reform the structure, services and funding of the health care and social services sector. In the current proposal, the reform is due to come into force on 1 January 2020, but the government may postpone it to 1 January 2021 or further. The reform transfers various duties from municipalities to the new counties. In turn, it will transfer the health care and social services personnel and some support service employees currently employed by municipalities, joint municipal and state regional government authorities to the employment of the counties. As a result, 220,000 employees will have a new employer (Government reform packages 2018). 4 The Aged People in the Transitional Elder Care Policy and Service System… 53

In the future, the public administration of Finland will be organised into three tiers, as follows: central government, counties (autonomous regions) and local government (municipalities). In the reform, the existing regional divisions will serve as a basis for dividing the country into 18 counties. Counties will be responsible for health care and social welfare, rescue services, environmental health care, and regional development duties. They will also be responsible for tasks related to the promotion of business enterprise, planning and steering regarding the use of regions as well as promoting the identity and culture of the counties. The reform will transfer some other duties to the counties as well, including Centres for Economic Development, Regional State Administrative Agencies, Regional Councils and other joint municipal authorities. For example, counties will take on the responsibility of providing the services of the Employment and Economic Development Offices. After the transfer of these functions from the present 190 different designated authorities to just 18 counties, the number of joint statutory organisations, namely different local authorities and health care and social welfare service providers, will diminish markedly. The responsibility of education, culture and preventive services will remain in the municipalities. (Government reform packages 2018.) The reform aims to reduce health disparities, improve the equality and availability of services, and hold costs in check. The counties can manage services as a regional structure for larger groups of residents. On the other hand, again the sizes of counties vary from the county of Uusimaa with 1,655,624 people to the county of Keski-Pohjanmaa with 68,780. The county of Lapland is among one of the smallest counties in Finland with 179,223 inhabitants, as of 31 December 2017 (Väestö 2018). In Lapland, the reform concerns 9000 employees, about 1800 of which work in elder care services (Ikäihmisten palveluissa työskentelevät 2017). With the reform, the state shall have primary responsibility for financing the counties. Currently, the municipalities and the state jointly finance health care and social services, as well as requiring that service users pay service fees. The reform will make the existing multi-channelled financial resourcing simpler, giving users of health care and social services more freedom of choice by introducing several service providers to produce services within counties. In addition, the reform aims to bridge a large part of the sustainability gap in general government finances. The government aims to save €10 billion of growth for future predicted expenses with the reform’s ensemble. The reform in health care and social services are expected to cover approximately €3 billion of this sum by cutting down the expenditure growth from the current annual growth rate of 2.4% to 0.9% by 2029 (Government reform packages 2018).

4.1.3 The Research Setting

Above, I discussed the ongoing political and practical environment of the ageing policy in Finland in a time of transition. I am interested in how the concepts of aged people, aged service users and old age appear in the political and reform 54 H. Valokivi discussions, especially in northern Finland. How are the aged people and their participation and involvement discussed in the data? How do northern municipal politicians’ and health care and social service officials’ committees and reform law proposals and statements consider and include older citizens as individuals and as a group in the transitional period of health care and social services? The data (see Sect. 4.2.1) came from public documents from the Lapland reform web pages. The information for the first dataset consists of transcripts and other material from northern committees preparing and arranging the health care and social services reform. The second dataset is comprised of national law proposals connected with the reform and statements to the law proposals. The first dataset came from the Regional Council of Lapland’s four reform committees’ 23 meetings and 34 documents dating from 12 October 2016 to 13 June 2017. It contains the working process of the Health and Social Care Reform Site of Lapland (Lapin liitto 2017; Lapin Sote-Savotta 2017). The second dataset consists national data with law proposals, requests for comments and summaries of statements consists of documents on regional government, health care and social services reform and on service users’ freedom of choice in health care and social services (Sote- ja maakuntauudistuksen lausuntokierros 2016). The second dataset consists on nine documents dating from 31 August 2016 to 24 April 2017. There are 21 municipalities and 3 joint municipal authorities involved in the preparation of health care and social service reform in Lapland. Each municipality appointed two board members in positions of trust to the political reform preparation steering group. In addition, a group of leading professionals (including the regional council, mayors, health care district and municipal consortium managers) were able to attended and had the right to speak on all matters in the meetings. The political steering group defined the values, principles and goals for the health and social care reform preparation. The municipalities appointed members to the political steering group from five sub-regions’ mayors, health care and social services professionals and other experts to the executive committee and three working groups. These consisted of groups for: (1) health and social care arrangement, (2) health and social care production and (3) health and social care research and development. Besides professionals, there were representatives from the Same Thing and third sector organisations (Lapin liitto 2017). My study used qualitative content analysis to investigate the data. Content analysis is a group of systematic, rule-guided techniques used to analyse the informational contents of textual data (Mayring 2000). All types of content analysis share the central feature of systematically categorising textual data to make sense of it (Miles and Huberman 1994). All qualitative content analysis interprets meaning from the content of text data and, hence, adheres to the naturalistic paradigm (Hsieh and Shannon 2005). Here, I have used a type of qualitative content analysis that derives categories from the data, applying them to the data through close reading and analysing the data solely qualitatively (Forman and Damschroder 2007). This conventional content analysis derives coding categories directly from the text data (Hsieh and Shannon 2005). It then bonds categories based on the data to larger units 4 The Aged People in the Transitional Elder Care Policy and Service System… 55 and reflects the political and ideological elder care discussion. The first phase of the research analysed the data by looking for all mentions of old age, ageing, aged, aged or older people and aged service users,1 then the results were collected, and their content was analysed intimately. The focus of the study is mainly on the northern discussion on the reform since the research setting is the county of Lapland.

4.1.4 A Northern perspective on Ageing in Health Care and Social Service Reform

In this section, I report the results of the content analysis from northern committees and national law proposals. How are ageing and aged people present in the data? The concepts of aged people, aged service users and old age occur quite rarely in the data, in some documents, not at all and in some as an occasional mention or small- scale consideration and discussion. The qualitative results range from universal and national-level discussion of the terms to local and individual user-level discussion. 1. Universal concepts of a human being, inhabitant of a municipality or municipal citizen and resident, referring to all citizens. The data includes people in late life in the universal concepts of human beings, residents and inhabitants of a municipality as any other group of citizens. Here are two citations2 as illustrations of such concepts. Commonly local services refers to often-used services that most people need during their lifespans. (Political steering group) Services will be produced close to inhabitants of municipalities, even more than before. (Executive committee) The data also confronts issues like the proximity of services as common principles concerning all citizens and inhabitants. Anyone may need health care and social services in any phase of our lifespans, and so care and nearby services are and planned. Older people pose no exception. In addition to the right to receive care and services, the responsibilities of individuals are emphasised. Every resident’s own responsibility/own care is emphasised. (Political steering group) The current ideological and political atmosphere emphasises every citizen’s personal responsibility. No matter the age, all citizens must take responsibility for their health, functional capacity and well-being. Moreover, if needs arise, all citizens should care for themselves. Citizens are responsible for their own choices. Freedom of choice and individual responsibility go hand in hand. The Finnish primary care patients value choice, but they are critical of the availability of choice-relevant

1 Search in Finnish: “vanh∗”, “ikäänt∗” and “ikäihm∗” 2 The author translated all citations. 56 H. Valokivi information (Aalto et al. 2018). For some service users, the responsibility of citizens to make choices may be too great because one may not possess the strength, the knowledge and information to make such choices (Pohjola 2017; see also Julkunen 2008; Juhila et al. 2017). 2. Universal group-level concepts: aged, those in late life or old people, ageing population, 75 years and older or over 75 years. Concepts of universal group-level category are most common in the data. Law proposal data mentions older people and addresses them as a universal group or a segment of citizens as any other group of citizens. These categories may be based on age or other characteristics. County government has to nominate a youth council or other influencing group to secure participation and influence possibilities for young people, and a county senior council to guarantee participation and influence possibilities for an aged population, as well as a county council for people with disabilities to guarantee participation and opportunities for influence for citizens with disabilities. (Law proposal data, number 2) County governments nominate county senior councils to guarantee representation of inhabitants in late life in the county’s administration and political system, as well as doing the same for the representation of young people and people with disabilities. Councils provide the opportunity to participate in the planning, arranging, enforcing and follow-up of issues significant to them. The agenda of senior county councils consists of the issues affecting older inhabitants of the county. Another type of categorisation by age uses specific numbers, as shown in the following citation. Age-based costs for calculatory funding are decided separately as follows: 1) ages 0 to 5; 2) 6-year-olds; 3) ages 7 to 12; 4) ages 13 to 15; 5) ages 16 to 18; 6) ages 19 to 64; 7) ages 65 to 74; 8) ages 75 to 84; and 9) 85 years and over. (Law proposal data, number 2) The law proposal divides health care and social service funding principles into nine age groups from ages 0–5 all the way to 85 years and over. The sharpest division between age groups is in the beginning and at the end of a lifespan. The funding from the state to each county depends on the representatives of the nine age groups and the health care and social service requirements for each age group. In addition, regional data discusses the different age groups of the population. Supporting living at home and digitalisation concern all age groups, not only older people. (Health care and social services production group) Here, the county’s health care and social services production group create parallels between aged residents and other age groups. Any citizen, regardless of age, may need support in living and use digital devices to support living at home. Persons’ needs are based on their individual life situations, not on the category of their age. On the other hand, the regional data discusses universal groups in the frame of future challenges. 4 The Aged People in the Transitional Elder Care Policy and Service System… 57

The biggest challenges of health and social care reform in Lapland … [are] older people. (Political steering group) The political steering group of Lapland wrote in their memorandum that citizens in late life, as a universal group, are one of the biggest challenges of the health care and social services reform. A similar discussion is had in the law proposal data. The discussion does not consider individual life situations at all. Likewise, it does not consider the empowerment or strengths and perspectives of seniors. According to the memorandum, the older people are a burden to the forthcoming county health care and social service system. In the data, there are also solution proposals for the future health care and social service needs. One of them is personal budget, which is not in used in Finnish elder care so far. Statement givers [to law proposal] saw that the use of a properly scaled and well-supported personal budget may enable better implementation of the human rights and self- determination of older people and disabled people than is currently the case. (Law proposal data, number 9) The universal group-level concepts are used in the data to describe older people as a hypothetical homogeneous group, in which members have similar life situations and needs. In reality, each life situation is unique and people seldom fit into these general categorisations. The category of gender rarely exists in the data. This is interesting finding, considering the fact that in older age groups there are notably more women than men (Keskitalo-Foley and Naskali 2016). In a law proposal’s statement of reason, the question of gender among older population is brought up. This citation was the only one emphasizing the issue of gender in the data. On average, women live longer than men do, and the majority of seniors are women. Therefore, the gender gap increases according to the ageing of people. Consequently, the use of health and social services by women, and the share of women as service users increases according to age. As a result, the extension of freedom of choice affects more women than men. (law proposal data, number 7) 3. Universal individual-level concepts: an aged, ageing, older person, or old person In general, the universal individual-level category refers to an aged person as a generalised representative of the discussed group of citizens (Pohjola 1990). The political steering group uses the universal individual-level category when preparing the reform by discussing the future organisation and implementation of care and services, while the health and social care arrangement group outlines goals for future service producers: A professional, chosen based on suitability to a senior’s needs, is responsible for the process of needs assessment. (Political steering group) [The county] can set a goal for service producer so that aged person is capable of living at home. (Health and social care arrangement group) 58 H. Valokivi

Universal individual-level categories are quite rare in the data, which has more references to universal group-level and service system-level categories. 4. Service system-level concepts: client, service user Concepts of service system-level category attach citizens to the health care and social service system. As clients or patients, citizens are involved and encounter with service providers. Both in regional and national preparatory reports, different age groups are considered service users. Clients of primary health care: In 2014 about 3.7 million different clients used health clinic services. 2.75 million clients used clinics’ open care services (doctors’ and nurses’ appointments). Children used mostly services of child health clinics, working population used open care, occupational health care and maternity clinics, and with the oldest age groups, home nursing was the most important form of service. (Law proposal data, number 7) In this service system-level category, an aged person is inside or is part of the health care and social service system as a client, patient or service user. When care and service needs arise, the aged person enters the health care and social service system. The political steering group defines how the service application process should proceed. The assessment of service needs must be started immediately and completed without undue delay after an older person has applied for a service assessment as referred to in Section 36 of the Social Welfare Act (1301/2014). […] The client receives a service decision at the end of the application process. (Political steering group) The health care and social services reform widely discuss the issue of local services. The issue becomes more relevant when the care and remaining local services will be the responsibility of and organised by 18 counties instead of municipalities. The county of Lapland is a very large area, and politicians and citizens want to remain in the local services network. The goal of the health care and social service reform is that health care and social services remain close to the service users. (Political steering group) The public debate has been in maintaining of health care and social services near the residents. To respond to this worry the political steering group emphasises the maintenance of local services. The data emphasises age as a category of needs-based local services: A local service is a service a client needs often or repeatedly due to age, health, well-being and/or a life situation. (Political steering group) Old age is the only age group mentioned separately as a basis for needs-based local care and services. Other categories are general ones: health, well-being and life situations. These general categories may apply to older people, as well, though in the data, old age is independently considered a risk to becoming a client or service user. 4 The Aged People in the Transitional Elder Care Policy and Service System… 59

5. Participative-level concepts: developer clients, service users and senior councils Local Government Act (2015, 27§) regulates municipal senior councils, as previously discussed with the universal group-level category. The municipal executive board appoints senior councils to each municipality to guarantee participation and influence possibilities of the senior population. In the Elder Care Law (2012, 11§), municipal senior councils will take part in planning and accessing elder care services at the local level. The Lappish political steering group oversees the role and value of senior councils in the future health care and social service system of the county: Municipal senior councils form a forum for development and feedback. (Political steering group) Preparation work for the health care and social service reform in the county-level operational model envisions taking developer clients and service users along. Lapland’s operational model, which will steer production, will be created, and it shall take notice of private sector participants and in addition third sector, voluntary work and developer clients. (Health care and social services production group) In Lapland, several development projects have emphasised the participation of service users (Hokkanen et al. 2017; Pohjola et al. 2017; Pohjola et al. 2014). Due to long-lasting development work, the reform work encompasses cooperation with politicians, professionals and service users.

4.2 Conclusion: Future Northern Elder Care in a Transitional Phase

The regional government, health care and social service reform is in an ongoing phase and an unfinished decision-making process. At the earliest, the Parliament of Finland will discuss and vote on the reform law proposal in the autumn of 2018 (Yle news 2018). Therefore, at the national level, the principles and guidelines of the reform are still not decided. Regardless of the final decision on the reform, the regional planning and preparation work has been going on for a couple of years so far and is continuing. Local and county-level participants must make decisions and plans despite this national political uncertainty. In the county of Lapland, all municipalities and joint municipal authorities have been intensely working together in several regional committees on local government health and social care reform since autumn of 2016 (Lapin liitto 2017; Lappi maakuntauudistus 2018). Lapland faces several significant challenges in the future. The population in the county is diminishing, and the ageing population is growing (Väkiluvun kehitys Lapin kunnissa 2015). The acreage of the county is large, and the distances between municipality centres and services are already substantial. Northern Finland emphasises the foundational ideas of the reform: citizen equality, users’ freedom of choice and versatile and cost-effective services. In the process of reaching for these goals, 60 H. Valokivi it is important to consider people in late life as individuals, in their communities and individual life situations. Older people, aged users and old age appear in the national and local political and reform discussion at multiple levels and with myriad implications. The discussion includes older people in the universal concepts of human beings, municipal citizens and residents as any other age group representatives. Older people also appear at the universal level as a group or a segment of citizens, quite often in a negative and passive light. When discussing how to manage costs and face challenges, the data often categorises aged people as one monolithic group, viewing them as a societal burden. Meanwhile, the individual-level and service system-level categories appear mainly in situations resolving practical challenges. The roles of older people and individuals are quite passive. The participatory-level category is the most active category. Politicians and professionals invite and welcome seniors and older service users to take part in the strategic planning and assessment of health care and social services reform and future operation from the perspective of the aged population. The long-lasting period of political discussion regarding the regional government, health care and social service reform is a time of transition, ambivalence and austerity. Older people mostly constitute a burden and a generalised group of people, not individuals with unique lifespans and life situations. In addition, gender appears rarely in the preparatory political discussions (see Calasanti 2013; Keskitalo-Foley and Naskali 2016). The county of Lapland has a long tradition of development work to emphasise participation and active involvement of service users (Hokkanen et al. 2017; Pohjola et al. 2017; Pohjola et al. 2014). Older adults have significant potential to contribute to health care and social services reform development activities. It is of utmost importance to remember the primary goals of the health care and social service reform; to promote and maintain the health and well-being of the population and secure equal and cost-effective and quality health care and social services all over the country (Pohjola 2017). The aging population is a heterogeneous group of individuals who have diverse life situations, resources and everyday life needs. With senior councils and developer clients’ and service users’ activities, older people’s potential can be considered. Meanwhile in universal group, individual, and service system categories people in late life are seen quite passive and objectified way.

4.2.1 The Data

The Regional Council of Lapland’s four reform committees’ 23 meetings and 34 documents: 1. Political steering group (5 meetings; 12 documents) 2. Executive committee (6 meetings; 6 documents) 3. Health and social care arrangement (5 meetings; 6 documents) 4. Health care and social services production group (7 meetings; 7 documents) 4 The Aged People in the Transitional Elder Care Policy and Service System… 61

Law proposals, requests for comments and summaries of statements (9 documents): 1. Lausuntopyyntö hallituksen esitysluonnoksesta eduskunnalle maakuntauudistukseksi ja sosiaali- ja terveydenhuollon järjestämisuudistukseksi sekä niihin liittyviksi laeiksi. STM068:00/2015. 31.8.2016. 2. Hallituksen esitys eduskunnalle maakuntauudistukseksi ja sosiaali- ja terveydenhuollon järjestämisuudistukseksi sekä niihin liittyviksi laeiksi. Esityksen pääasiallinen sisältö 31.8.2018. 3. HE 31.8.2016 korjattu versio 1.9.2016. 4. Lausuntoyhteenveto Maakuntauudistukseksi ja sosiaali- ja terveydenhuollon järjestämisuudistukseksi laaditusta hallituksen esitysluonnoksesta. Sosiaali- ja terveysministeriön raportteja ja muistioita 2016:64. 5. Lausuntopyyntö luonnoksesta sosiaali- ja terveydenhuollon valinnanvapauslain- säädännöksi. STM068:00/2015. 31.1.2017. 6. Hallituksen esitysluonnos laiksi asiakkaan valinnanvapaudesta sosiaali- ja terveydenhuollossa. Lakiluonnos 31.1.2017. 7. Hallituksen esitysluonnos laiksi asiakkaan valinnanvapaudesta sosiaali- ja terveydenhuollossa. Yleisperustelut 31.1.2017. 8. Kuvaajat valinnanvapauslain lausunnoista. Sosiaali- ja terveysministeriö 3.4.2017. 9. Lausuntoyhteenveto Sosiaali- ja terveydenhuollon valinnanvapauslainsäädän- nöksi laaditusta hallituksen esitysluonnoksesta. Sosiaali- ja terveysministeriön raportteja ja muistioita 2017:22.

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Petra Merenheimo

Abstract This chapter explores societal understandings framing the marketization methods of outsourcing, public investment funding and customer choice. Drawing on Pierre Bourdieu’s concepts of capital, it demonstrates acknowledged capital forms and the relationships among them, particularly those related to technology and care. The chapter shows how innovations and related business opportunities are legitimized through their contribution to improved productivity and that care innovation can be conceptualized as a technological advancement. The study argues that such a conceptualization is rooted in the one-sided economic approach toward the female dominated care work, and elder care in particular, as a societal cost.

Keywords Care marketization · Innovation · Elderly care · Bourdieu · Investment funding

5.1 Introduction

In Finland, the public sector is the backbone of the care sector, although its position appears to be changing. In 2002, 76% of the social services work force was employed by the public sector (Kauppinen and Niskanen 2005) and by the end of 2013, this share was reduced to 66.5% (THL National Institute for health and welfare, 2015). With the ongoing marketization wave in Finland, care provisions are no longer specific to the public sector but a resource of private businesses. In other words, care as a public good is gradually becoming a commodity and this holds true for not only care services but also care providers. The consumers of such care are those in their late life, who are approached according to their purchasing power (e.g., Koskiaho 2008).

P. Merenheimo (*) Fakultät für Angewandte Sozialwissenschaften, Institut für Geschlechterstudien, Technische Hochschule Köln, Köln, Germany e-mail: [email protected]

© Springer Nature Switzerland AG 2019 65 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_5 66 P. Merenheimo

Women account for a majority of the care professionals and one of the strongest arguments in favor of care marketization is that it increases opportunities for care professionals to start and develop their own business. In 2005, Finland’s Ministry of Trade and Industry emphasized that entrepreneurship in the care sector creates employment and innovation opportunities for women (KTM 2005). The Ministry of Social Affairs and Health (2008) expected the increase in care entrepreneurship and innovation to develop the care sector and enhance its efficiency. Entrepreneurship, employment, innovation, and efficiency were expected to contribute to economic growth (KTM 2005) and as a result, the care sector was assigned high economic relevance. At the same time, economic terms replace social scientific ones, which Anttonen and Häikiö (2011, p. 16) term “the new market-friendly language of social policies”. Motivated by the opportunity to develop and design their own caring concepts, numerous women have set up their own care businesses (Österberg-Högstedt 2009) but found themselves in a marginal niche of “small-scale care production” or “self- employment”— ethically accepted but economically difficult modes of care business. This can be attributed to large-scale companies increasingly dominating the sector (Hartman 2012). The companies establish large-scale care entities and offer services at lower prices. This growing presence of large companies has triggered the demand for increased customer choices in social and health care (Brommels et al. 2016), acknowledged the need to act against subordination of small care companies (Tevameri 2017), and even alarmed the Constitutional Law Committee, which is concerned about the weakening position of small-scale care (PeVL 26/2017 vp). Considering that large-scale care entities typically are established in urban centers, scarcely populated rural regions face challenges both to organize affordable local services and to create decent employment opportunities for their (female) residents. The care sector reforms therefore are of high economic significance for the rural regions. This chapter explores innovation and business opportunities that are segregat- ing female care professionals rather than benefiting them. It investigates what are the types of innovation and business opportunities that emerge within the market- friendly language of the social policy. The chapter is a critical analysis on the marketization methods of outsourcing, investment grant schemes, and vouchers. It claims that they rest on a gender bias in economic thinking according to which care is conceived as a societal burden. The chapter suggests reconceptualizing the productivity calculations and acknowledging the investive character of the care work in monetary terms, in order to create alternative innovation opportunities. 5 Traditional Foundations of Novel Opportunities: Marketization in Finland’s Care… 67

5.2 The Approach and Data

The chapter explores innovation opportunities in the care sector and accordingly, offers alternatives for them while referencing my earlier analyses (Merenheimo 2010, 2013, 2015, 2016). The analysis conducts three separate investigations for the three marketization reforms: outsourcing, public investment grants, and customer choice. The outsourcing analysis is based on existing research on care marketization in Finland (Anttonen and Häikiö 2011; Karsio and Anttonen 2013; Anttonen and Meagher 2013; Hirvonen 2014; Koskiaho 2008; Kovalainen and Österberg-Högstedt 2013; Österberg-Högstedt 2009; Åkerblad 2009). I identify and categorize relevant resources in the care sector using Bourdieu’s (1972, 1990) concepts of capital. In terms of public investment schemes for small- and medium-sized enterprises, this chapter references earlier studies (Merenheimo 2013, 2015, 2016) based on legislations (1336/2006) and guidelines for its implementation (TEM/414/00.35.05.01/2010; TEM/2431/03.01.04/2017; TEM 2012). According to Bourdieu (1987, p. 819–820), “Although legislation typically is written neutrally, impersonally and in the in-temporal present, and thereby signals objectivity and omni-temporality, it expresses the values of the society and presupposes the existence of ethical consensus.” Therefore, legislations can be considered to reflect societal understandings in Finland. By conducting a text analysis, I analyze public investment schemes and particularly, the types of investments worth funding. Since the collection and transformation of capital forms can be characterized by investment, I categorize resources using Bourdieu’s concept of capital and identify principles and criteria to determine economically relevant capital forms. I then scrutinize the symbolic character of the expected economic contributions. The study on customer choice (Merenheimo 2010) is based on the memorandum of the “voucher working group” (STM 2008), which aims to increase innovative solutions in the Finnish social and health care sector. The memorandum is a document supporting the planned amendments in the legislation and therefore, includes more nuances than the final legislation texts. Members of the voucher group are representatives of various organizations, including ministries; communities; and associations of physicians, employers, and entrepreneurs. Using Michel Foucault’s (2005) principles, I explore how discursive practices organize the speech of care and the resultant hierarchies, inclusions, and exclusions: I organize the text by theme and discuss the applied economic terminology, I identify values, assumptions and hierarchies expressed by the text and describe the pathos in ageing-based discourses such as emphases on an urgent threat in the context of demographic changes. Finally, emerging innovative opportunities are conceptualized as relationships among cultural, social, symbolic, and economic capital. This study concludes with alternatives to innovation opportunities by challenging underlying societal understandings that reinforce existing gender biased capital relationships. 68 P. Merenheimo

5.3 The Results

5.3.1 Outsourcing: Rising Visibility of Economic Capital

The care marketization started with outsourcing in the 1990s during the economic crisis. More effective methods were needed to decrease tax payers’ financial burden. Outsourcing was and still is often performed through competitive tendering, where “local authorities choose among providers, who compete on price and/or quality for the opportunity to offer services” (Anttonen and Meagher 2013, p. 17). In the context of this study, tendering is a type of auction in which a local authority announces its interest to buy care services that meet certain quality recommendations. Because competitive tendering is a regular practice, care providers are required to constantly convince local authorities so that they remain competitive against other providers; moreover, losing these contracts could result in bankruptcy. The outsourcing wave resulted in business creation in the Finnish care sector. Business owners are known as female care professionals (Österberg-Högstedt 2009), with a focus on physical care duties (Åkerblad 2009) and typically pursue high quality with high amount of unpaid personal input (Hartman 2012). They can therefore be regarded non-profit oriented, similar to public and third sector providers. Owners are largely identified as care professionals and their education and work experience contributes to the construction of their “entrepreneurial identity” (Kovalainen and Österberg-Högstedt 2013; Österberg-Högstedt 2009). To this effect, care business owners do not differ from their employees in the context of occupational competence (see Hirvonen [2014] for a discussion on care sector employees). Care professionalism within outsourcing can be identified as a valued form of (embodied) cultural capital, which denotes culture and education. The acquisition of cultural capital is an investment that requires time and often occurs through hereditary transmissions under socially disguised conditions, making it difficult to recognize. In its embodied form, cultural capital is often perceived as the “personal character” of an individual. At the individual level, cultural capital is “external wealth converted into an integral part of the person” (Bourdieu 1986, p. 244). Outsourcing has several forms in the care sector. Local authorities are legally obligated to care for citizens, but Karsio and Anttonen (2013, p. 98) list six ways local authorities can negotiate contract terms with care providers or make providers compete for a contract. However, across these procedures, local authorities remain the only client. Local authorities also enjoy complete autonomy in organizing care service supply (Koskiaho 2008): it can end contracts or decide to not outsource services. Finally, since the legislation only offers non-binding recommendations, local authorities can independently determine care quality criteria (Karsio and Anttonen 2013). Thus, the concept of outsourcing is built on a specific relationship in which the care provider is highly dependent on local authorities, mainly civil servants negoti- ating individual contracts. Nevertheless, because of its obligation to organize care, 5 Traditional Foundations of Novel Opportunities: Marketization in Finland’s Care… 69 local authorities are also dependent on care providers and must establish a relationship of trust (e.g., Karsio and Anttonen 2013; Lith 2006). Business owners adjust to the needs of the public sector by providing complementary, flexible, and cheap products (e.g., Österberg-Högstedt 2009). In doing so, they fulfill the criterion of being a trustworthy care provider and business owners who develop such a reputa- tion enjoy economic benefits (i.e., contracts). In other words, a good, long-term relationship with a local authority is a form of social capital. In Bourdieusian terms, social capital is a resource comprising a network of relationships and accumulated capital (i.e., economic, cultural, social, and symbolic) of the positions to which the agent is connected. According to Bourdieu, social capital is mutually accumulated through long-term cultural, symbolic, or economic investments by agents and not the sum of interactions. Further, networks equip agents not with mutual trust but with the potential for field-specific resources that can be mobi- lized by agents for their actions (Bourdieu 1986). The Bourdieusian concept is, therefore, more “cynical” than concepts highlighting mutual approaches and investments. In other words, the non-profit aspect of the care sector has clear monetary motivations. Competitive tendering controls the relationship between a local authority and care provider. Contracts are valid until the next round of tendering and care providers are unaware of whether their organizations will cease to exist within two years, which also have detrimental implications for their employees and customers. Thus, the “long-term” relationships between care provider and local authority are, in fact, short termed and outsourcing contributes to this insecurity among care providers, employees, and customers. The private business is characterized by a high amount of unpaid labor input of the business owners (Kettunen 2006) and until 2009, third-sector care providers were subsidized by RAY, Finland’s Slot Machine Association for their projects such as creating of networks and trainings of volunteers. Because the pricing hid the actual costs, it allowed providers to offer prices in conditions that were otherwise not possible. Suppose a local authority buys subsidized care services: it appears if it saves tax-payers’ money. However, it ignores the subsidies, unpaid work carried through by business owners or by RAY funded projects and volunteers, and so conceals the actual costs. A growing number of large-scale international companies are participating in competitive tendering with low prices (Koskiaho 2008). Karsio and Anttonen (2013) report a price competition within the tendering practice in Finland. Capital investment and insurance companies increasingly invest in the large private business, and the market concentration increases (Hartman 2012; Tevameri 2017). To remain competitive and ensure continuity, care providers are forced to lower their prices, which, in turn, results in seemingly improved cost-effectiveness. As a result, large- scale companies that are clearly profit-orientated openly challenge non-profit care provision. That is, the successful creation of low-cost care in Finland exposes the silenced monetary character of non-profit and role of economic capital in care. Bourdieu (2005) does not consider economic character as a separate category but suggests that it is rooted in all capital forms; here, Bourdieu refers to the law of 70 P. Merenheimo physics, where no wastage exists. In the present case, cost savings through large scale care replaces cost savings through non-profit care. Economic capital enables newcomers the acquisition of social capital, which is the trust a local authority places in a provider’s capacity to deliver affordable care. Outsourcing replaces non- profit care providers with profit-oriented ones and emphasizes care as a societal cost.

5.3.2 Investment Grant Scheme: Symbolic Contribution and Rising Value of Technology

As a result of the increasing competition in the care market, companies with weak economic performance are replaced by stronger ones. To a certain extent, such development is seen beneficial for sectoral innovativeness, in the economic literature (Lith 2006). The created uncertainty in outsourcing is expected to boost supply of innovative and new care concepts. According to Stiglitz (1997), innovation refers to new products, services, markets, production methods, or organizations. Innovations can contribute to economic growth in two ways. First, innovations enable the creation and commercialization of new products and services. This, in turn, increases employment and the nation prospers. Second, innovations can contribute to productivity growth through new resource-saving production solutions. But innovations must be developed and tested and thus, require financial capital. This means that companies must invest in innovation development and their commercialization. In the economic thinking, investments are understood as expenditures that increase future income and revenue. An innovation is determined as investment worthy depending on how companies estimate their long-term economic prospects (Stiglitz 1997, p. 673). Economic thinking, thus, relies on expectations, forecasts, and estimates. The public grant program offers companies investment funding. The overall aim of the SME grant is to promote growth, employment, and other economic goals by supporting companies and their competitiveness (1336/2006). Until 2006, all private businesses were excluded from RAY subsidies and the care sector as a whole, from public investment grants. Following the reform, large amount of care providers was corporatized and entitled to SMEs’ public investment grant, thus seemingly promoting equal access to SME finance. The law divides investments into tangible and intangible assets. Tangible assets include “land, buildings, machines and fixtures, and machinery and equipment on long-term lease” (1336/2006, 4§), whereas intangible assets are “patent rights, licenses, know-how and non-patented technical knowledge acquired for technology transfer.” All other intangible assets are either considered “business development- enhancing activities” (1336/2006, 4§), which is a minor funding category, or excluded from all funding. Grants also apply to other development measures that are separate from investments, for example, “salaries, travel, raw materials, semi-manufactured products and machinery,” which interestingly, are termed material investments. 5 Traditional Foundations of Novel Opportunities: Marketization in Finland’s Care… 71

This division of investments into tangible and intangible assets shapes investment into physical or technological constructs, leaving other forms either unclear or relegating them to the “others” categories. For instance, there are no provisions mentioned for personal and beauty services. This all suggest that non-technological improvements are excluded from the definition of investment. According to economic thinking, investments promise an increase in future incomes and revenues (e.g. Stiglitz 1997). The grant application form (ELY Application form, Sect. 19.2) measures the economic relevance of an investment on the basis of the estimated growth in a company’s turnover, exports, and employment. It is noteworthy that the law, application form, or related guidelines (TEM/414/00.35.05.01/2010; TEM/2431/03.01.04/2017; TEM 2012) do not explain why turnover, exports, and employment serve as indicators of tangible and technological investments and not intangible non-technological ones. This highlights the symbolic characteristic of the relationship between privileged investments and their economic relevance. Symbolic capital is a “denied” form of capital and can be one of the other three capital forms, but in a misrecognized state. The symbolic character denotes recognition in advance: a “power in the form of credit, it presupposes the trust or belief of those upon whom it bears because they are dis- posed to grant it credence” (Bourdieu 2005, p. 195). Although symbolic capital is constituted by the other capital forms, given its veiled characteristics, it is treated as an independent category. Economic relevance also refers to the growth in a company’s output, which is expected to enhance “the well-being of society and its citizens” (Koski and Ylä- Anttila 2011, p. 3). In the care sector, however, a company’s output, turnover, exports, and even employment do not play any role, at all. The guidelines (TEM 2012, p. 165–167, emphasis added) state that “grants should be given for information and security technology investments, which improve the low productivity of the sector.” An increase in labor productivity results in national economic growth. According to the National Statistics of Finland (stat.fi), “The productivity of work is measured with the ratio of generated gross value added to hours worked in an industry”. Alarm and telecommunication systems reduce labor costs and this makes technology appear more cost effective than human labor and there is a resultant rise in productivity of the entire care sector. However, this type of reasoning rests on the premise that improved productivity will be solely achieved through savings in caring work hours and ignores that need for technology work hours can increase with a rise in demand for new technology. In turn, the value of a technology as a form of cultural capital increases. I claim that this indicates a trend in which high tech replaces “high touch,” where possible (Naisbitt et al. 1999). Figure 5.1 demonstrates the relationship between cultural and symbolic capital forms. Theoretically, there is a possible relationship between non-technological care professionalism and productivity growth. However, in this case, investments must be made without public grants. In turn, the relationship between non- technological care professionalism and economic growth in the form of company turnover, export, or employment growth does not exist. Technology, on the other hand, has an explicitly acknowledged relationship with both capital forms. 72 P. Merenheimo

Investments possible without public SME funding CONTRIBUTION TO COST CARE REDUCTION PROFESSIONALISM (INCREASED PRODUCTIVITY)

Investments with public CONTRIBUTION TO ECONOMIC TECHNOLOGY SME funding GROWTH: INCREASE IN PROFESSIONALISM COMPANY GROWTH, EXPORTS, AND EMPLOYMENT

Fig. 5.1 Relationship between cultural and symbolic capital forms in SME funding scheme

In most cases, care-related human labor cannot be made more effective and replaced by technology. Hirvonen and Husso (2012) note that most caring duties cannot be performed simultaneously, in a revised order, or faster. A distinctive feature of care work is the difficulty in increasing productivity without impacting quality (Razavi 2010). The approach to labor-intensive care work depends on the productivity of the sector to which it is compared (Himmelweit and Perrons 2006). Productivity rise in other sectors creates pressure on the care sector, which is called a “cost disease” (Baumol and Bowen 1965) and opportunities with a clear symbolic character: that is, provided calculations evidence (manifested in low prices) reduced labor costs at the same output level with the help of technology, it is not necessary to account for change in output quality. This allows for an increase in productivity in line with industrial production sectors. However, Brüker et al. (2017) note that concerning social services, in a preventive sense, an economically more productive solution is not always the more rational one. They argue that, for example, savings in labor costs can burnout the work force. I note that this may increase future costs, and therefore, argues that the restricted and symbolic conception of productivity rise creates a hierarchy among the two cultural capital forms: technology and care professionalism. Investive social work, in turn, includes measures that contribute to sinking social costs (Brüker et al. 2017). We can conclude that the investment grant scheme reform creates investment opportunities in the care sector, but in doing so, it reproduces the logic according to which an input in labor-intensive care work does not result in future monetary revenues. 5 Traditional Foundations of Novel Opportunities: Marketization in Finland’s Care… 73

5.3.3 Customer Choice: Segmentation of Care Professionalism

The so called third wave marketization focuses not only reforming the supply side but also the demand side in the care market. The innovation platform shall be wid- ened to include all thinkable actors and actions (see STM 2008; TEM 2012). With voucher then, customers shall be able to make individual choices among the new innovative services, according to their individual needs and preferences. The voucher reform began with a memorandum by the voucher working group, whose members were appointed by the Ministry of Social Affairs and Health (STM 2008) and recommendations were implemented in the legislation. In a voucher system, clients can independently choose a care provider and pay it using vouchers issued by local authorities (STM 2008, p. 18). The local authority then monitors the care providers but does not refer clients to them. The memorandum contains a discourse mix I have identified (Merenheimo 2010) which will be introduced in this section. The growing demand for services and the rising need for workforce in the care sector threaten to disrupt the financial equilibrium of the public sector. (STM 2008, p. 15). The change in the dependency ratio will be significant, and has to be reckoned with (STM 2008, p. 13). Change in population structure; the decreasing number of children and working population and the increasing number of old people means that the service structure has to be reformed and present practices have to be reassessed (STM 2008, p. 13). These excerpts highlight a threat caused by demographic change and a distinction made among the large numbers needing care services; the elderly; and those who will pay for the care, that is, the working population. Interestingly, the last group is seen at risk. The survival of the working population and its children are threatened by the growing elderly population. The threat discourse appears enduring. Although scholars try to argue against it (e.g. Kautto 2004), still in 2014, the Finnish Association for the Welfare of Older People emphasized its implications in a public discussion (Lehto 2014, p. 10). Competition increases productivity and restrains costs. In small localities functioning markets do not exist, and thus no true opportunity to make full use of this benefit is available (STM 2008, p.16). Freedom of choice increases competition among producers and offers an incentive to create new innovations (STM 2008, p.16). It is not the purpose of the law to increase production supply and demand (STM 2008, p.31). The quotations underline supply and demand, productivity, competition, opportunities, and innovations. The concept of functioning markets refers to ones financed by the public sector and regulated by a ban on demand and supply. Such a conception of markets is in sharp contrast to that of liberal markets, where an increase in supply and demand is considered positive in the context of economic growth. 74 P. Merenheimo

Therefore, this can be identified as the regulated market discourse (e.g., Hallipelto 2008; Salminen 2008). Similar to investment grants, this market is built on the assumption that the supply and demand of care services must be restricted, and that the present care provision is ineffective. Therefore, the expected benefits in this market are contributions to productivity growth. However, the contributions remain vague given that assumed cost savings are based on strictly positive conceptions of new innovations and competition among producers. Furthermore, verification of the productivity growth remains unclear. I assume this to happen merely through lower prices. The benefits derived from vouchers rest on the ability to raise expectations and make promises, which are the symbolic forms of capital. Productization will grow in importance after the introduction of vouchers and more attention must be given to it (STM 2008, p.30). Not all social services producers are required to register as private social services producers. Cleaning service producers may also be accepted as social service producers (STM 2008, p. 30). The local authority shall define the uniform criteria for the care providers, when accepting them into the register, and treat them equally (STM 2008, 30). To ensure that the regime implementation is functional, both the local authority and the care providers shall have a realistic understanding about the production costs of the services. The local authority shall monitor the price development and enhance its own cost awareness (STM 2008, p. 30). Here, the quotations suggest that the desired productivity growth will be achieved through the segmentation of care work and services. Improved productivity can then be calculated in monetary terms. For example, some care duties can even be transferred to cleaning professionals, whose salaries are less than those of care workers. For the same amount of services then, fewer care professional working hours are needed, and this means savings in labor costs. In addition, doing so gives the impression of more efficient and organized care provisions: that is, services are segmented and educated care professionals do not spend time on tasks that can be performed by the less educated. I identify this as the efficiency discourse (e.g., Maroto and Rubalcaba 2008; van Slyke 2003). At the same time, the quotations emphasize list- ings, uniform listing criteria, equal treatment, and price and cost awareness. From this, it can be forecasted that if one provider is able to produce cheaper care through the segmentation of duties, the same will be expected from others, thus fostering price competition—an observation also made by Karsio and Anttonen (2013) in the case of tendering processes. This indicates an increasing standardization of care provider comparison and evaluation according to some “realistic understanding” of costs. Segmentation mainly results in all-inclusive care concepts appearing costly. For example, in an all-inclusive home-help, professional caregivers cater to all needs of a limited number of clients. In segmented home-help, however, a care professional commits to specific personal care tasks for many clients, while the so- called “supportive tasks,” such as companionship or home helper services are performed by different and less-paid employees. Thus, segmentation restricts the level of interaction between individual clients and care givers. This study, therefore, argues that care professionalism in its institutionalized form, which is characterized by qualifications and certificates and not individual experiences, has more value. 5 Traditional Foundations of Novel Opportunities: Marketization in Finland’s Care… 75

The institutionalized form of cultural capital presents a relatively autonomous state of capital vis-à-vis its bearer and even renders agents exchangeable (Bourdieu Bourdieu 1986). Clients are always able to buy services beyond those covered by vouchers (STM 2008, p. 27). The opinions of clients shall be taken into account when services are provided against vouchers (STM 2008, p.27). The value of the voucher should be set at a level reasonable for the clients (STM 2008, p. 31). As per the above excerpts, the elderly are conceptualized as clients who are free to purchase services, thus rendering them customers. However, all costs above the voucher value are incurred by the client. In other words, “free choice” is possible only when the client is able to incur certain costs. Wide-ranging care sector reforms are said to enhance clients’ freedom of choice (see e.g., Brommels et al. [2016] and HE 16/2018, for the latest plans). However, the “client discourse” unveils aspects overlooked by the efficiency discourse: a rise in productivity shifts part of the financial risk to the elderly, particularly if the value of the voucher is fixed at a certain “reasonable” level. This discourse enhances a new form of social capital, that is, direct relationships and contracts between care providers and clients, which entail the economic characteristic of clients wanting affordable care and care provider seeking clients. In accordance with the goals of the government’s programme, the equality of citizens shall be guaranteed by, e.g., raising the degree to which the service quality recommendations are binding (STM 2008, p.16). The starting point was that the responsibility for organizing remains with the local authorities and that clients are capable to obtain services at reasonable cost (STM 2008, p. 9). The legislation on client payments ensures that the payment level is no barrier for applying for social and health care services (STM 2008, p. 17). The quotations highlight the equality of citizens and care quality, which are the focus of the “sociopolitical discourse.” The discourse assigns the responsibility of monitoring the equality of citizens and care quality to local authorities. However, the legislation on client payments (1992/912) limits these responsibilities. Achieving minimum care standards at reasonable costs is an optimizing function that is defined and calculated in advance. There is an active and ongoing public debate on the monitoring of care quality and particularly, private business care providers. Even the Constitutional Law Committee has offered its comments on the reform plans, where it emphasizes monitoring by local authorities to ensure “sufficiency, quality and trustworthiness of the care services” (PeVL 26/2017vp, 3.7.). Similar to the provider register, binding quality recommendations replace trustful personal relationships. In fact, the five discourses remind us of manufacturing engineering, in which both the problem (ageing) and outcome (affordable care) are predefined, quality control is centralized, and deviations are minimized. An interesting result of marketization measures that get applied so far is that they create two separate markets: a large regulated market and a new, unclear supplementary market. In the regulated market, new opportunities are strictly limited to the goal of increased productivity. However, the monetary value of growing 76 P. Merenheimo

productivity can only be verified through reduced working hours, salaries and prices, a calculation practice which neglects aspects of quality and variety of service and work and has therefore been questioned and criticized by scholars (e.g. Beckmann and Oerder 2017; Evers et al. 2013; Koskiaho 2008). The contribution must, therefore, be conceived as symbolic. In other words, such contributions can be achieved merely through large-scale segmented services and technological innovations, thus neglecting innovations based on labor-intensive care professionalism. The supplementary market, particularly care professionalism, is female dominated, and thus, I term it as a “women’s market.” The market follows the economic theoretical conception of free markets, where new innovative services are freely supplied and demanded. While the definition of innovations is not restricted in this market, innovation and investment opportunities remain unclear and uncertain. There is simply no demand for innovations in care professionalism since their contribution to the sector’s productivity growth is unrecognized.

5.4 Conclusions and Alternatives

This study conceptualizes cultural, social, and economic capital as investments, which together contribute to economic growth as symbolic capital. Table 5.1 sum- marizes the capital forms and shows that technology has a cumulative effect on economic growth. Pettersson (2007) offers similar findings for the Finnish government’s innovation policy, where technology is associated with high potential for exports and productivity growth in the industrial sectors. Given these experiences it is understandable that technology appears a promising measure to increase

Table 5.1 Emerging capital relationships (opportunities) along marketization Investments (cultural, social and Contribution to Economic Growth (promise, economic capital forms) symbolic capital) Embodied care professionalism Losing value, not significant/not recognized Institutionalized care professionalism Gaining value for cost savings: segmented staff can be exchanged or replaced according to changing needs Technology Contributing to growth: exports, employment, turnover Contribution to cost savings: replacing more expensive labor Financial assets (own funds or public Increasing relevance for cost savings: economies of investment grant) scale and rise in productivity Good relations with municipality: Sinking relevance to cost savings: replaced by long-term cooperation and special listing, registers, and binding recommendations conditions Direct relations and contracts with New and rising relevance for cost savings: reduces potential clients: marketization the financial risk of a municipality knowledge 5 Traditional Foundations of Novel Opportunities: Marketization in Finland’s Care… 77 productivity in the care sector as well. For non-technological care innovations, there have been no efforts to set up any funding scheme, except for separate funding instruments that are tested by foundations for a fixed period (by the Finnish Funding Agency for Innovation and the Finnish Innovation Fund). I therefore argue that since technology offers the best opportunities, it is less likely to fail in achieving increased turnover, employment, and even exports, in future. I further claim that technological professions in Finland are hence config- ured as economically more important than care professions and that this hierarchy is rooted in their expected, believed and imagined contribution to economic growth through improved productivity. Quite recently, the Ministry of economic affairs and employment identified concentration of the market as a weakness. Stronger participation of small local care companies in innovation platforms as equal partners with large companies is therefore desirable (Tevameri 2017). The ministry further calls for combinations of human intuition, experience and ‘technological innovations’, and expects that new opportunities for small care companies will emerge through the increasing use of voucher, which is planned with the next reform (see HE 16/2018). But the upcom- ing reform does not foresee amendments of the SME investment funding legislation or the principles of productivity calculation. This creates a contradiction between the optimistic speech of increased opportunities and the simultaneous application of restricting monitoring principles. The contradiction arises because the public sector is responsible for organizing social services for its residents which it finances with the tax-payers’ money. This double responsibility of the public sector means that it has to monitor the sufficiency of the service production. It simply cannot outsource this task to the market (see e.g. PeVL 26/2017vp, 3.7.). Instead, it creates partnerships with the private sector for productivity improving innovations and infrastructure. But in doing so, it is bound to existing rules, and the opportunities still emerge within the conditions discussed in this chapter. Within the existing rules, care concepts provided by economies of scale and technology appear cheaper than labor intensive care concepts such as home-based services. Feminist economists argue that economic policies continuously neglect the general role of social infrastructure (i.e., care, health, education and training services, social security, and housing). Internationally applied calculation practices for national wealth are based on the principle that categorizes public care as public current “spending” rather than “investment,” which according to Himmelweit and Perrons (2006) implies consumption. Following this reasoning, it can be stated that even though both consumption and investment mean expenditure, savings (decline) in consumption but expenditure (rise) in the context of investments are necessary. Indeed, de Henau et al. (2016, p. 11) note that many states limit the permissible levels of debt and deficit but allow these limits to be exceeded if the expenditure is for capital investment rather than current expenditure. So are the construction costs for a new care unit (including wages of the construction workers) included in capital investment. Wages for the care workers who are mainly women, however, are excluded from this exception, indicating a clear gender bias in economic thinking (De Henau et al. 2016). The Finnish act on employment-based investment act 78 P. Merenheimo

(1345/2002) enables grants for general employment-enhancing purposes but restricts eligibility to construction related investments only (Merenheimo 2013). The European Union nowadays allows the national debt and deficit limits to exceed only if expenditures contribute to ‘durable strengthening of growth and sustainable development and so benefit future generations” without defining such expenditures in detail, anymore (German Federal Ministry of Finance 2015, p. 8). It remains unclear, however, whether expenditures that count as current spending in the National System of Accounts can be conceived ‘benefiting future generations’, within these EU regulations. According to Elson (2016), investments in social infrastructure would improve both well-being and productivity, benefiting people not only today but in the years to come. Furthermore, de Henau et al. (2016) show that investing in social infrastructure has significantly positive employment effects, which result in increased tax revenues. The Finnish Ministry of Social Affairs and Health (2008), by contrast, expects care sector innovations to increase efficiency through improved productivity rather than employment, whereby efficiency contributes to a decline in current spending (care professional wages) through investments in technology (technology professional wages). I therefore claim that marketization efforts reinforce the conception of care as a burden and gender bias in economic thinking. It is possible to create alternative opportunities by challenging the hierarchic relationship between care professionalism and technology: by doing away with the privileged position of technology in the SME investment funding legislation and acknowledging all measures as eligible for funding. In concrete terms this means coupling the investive care work with investments in economic terms. However, this seemingly simple suggestion requires new principles for the estimation of productivity growth. Care professionalism-based productivity can be improved through increased manpower and salaries, which are not consistent with the present calculations principles. I argue that the sector could benefit from a long-term perspective on how related investments can contribute for example to long-term special healthcare costs. Several methods have been developed to calculate the monetary value of such ‘social return on investments’ (see e.g. Handrich 2013, for an overview). The new calculations principles should also fully account for the conception of care professionalism and the widening division between “lower” and “higher” skilled professionals. This is particularly important because the trend to separate low- (i.e., practical nurses, nursing aides, and cleaners) and high-skilled care (e.g., registered nurses and social workers) only transfers low-paid care work to immigrant women, as Duffy (2011) warns us. I note, further, that although investments in care workers’ education would enable to them progress from menial physical tasks toward more conceptual ones, this separation does not change the position of care professionalism from reproductive to innovative. Moreover, as Duffy (2011) highlights, separat- ing conceptual care from routine can be complicated. Adding to this finding, I suggest that for innovative purposes, such a separation and hierarchy can even be harmful as they could disrupt the fact that the roots of innovativeness lie in recognizing the value of routines as well as in breaking in it. 5 Traditional Foundations of Novel Opportunities: Marketization in Finland’s Care… 79

Another alternative is applying a cross-sectoral perspective. The care sector could generate not only costs of care but also developments in the other sectors, such as increased unemployment, illnesses, or poverty. A more specific example is digitalization, which could result in employment in some sectors but unemployment in some others (Beckmann and Oerder 2017). On the other hand, social work activities can result in monetary benefits in other sectors such as rising real estate prices (Handrich 2013). Scholars have also questioned the low productivity growth of care. Perrons (2010) points out that production sectors achieve higher productivity through the greater use of technology such as digitalization. A superficial comparison between the production and labor-intensive care sector would highlight evident deficiencies in productivity. Nevertheless, the comparison seems unfair given the stark contrast between sectors. Alternative conceptions for productivity could include the co-creative role of the customer in the service production process (Beckmann and Oerder 2017) and acknowledge that the care sector can contribute to productivity improvements in other sectors (De Henau et al. 2016). According to Duffy (2011), care-based human infrastructure is the cornerstone of the economy with benefits beyond the individual care receiver. She argues that an individual “child, who receives high-quality child care and education may grow up to be a more productive worker, a better spouse, and a stronger community leader and the parents of that child are able to contribute to the labor force because the child is being cared for” (Duffy 2011, p. 144). However, while childcare can easily be accepted as a societal investment, such a perspective is still missing in elder care investments. I attribute this to the lack of imagination regarding societal benefits and the strong focus on costs effectiveness in the form of increased productivity through greater technology use and low prices. This in turn, neglects innovative opportunities based on female-dominated care work. The present approach is blind to the monetary value derived from the societal benefits of the care work.

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TEM/414/00.35.05.01/2010 Guidelines for SME investment funding. www.update.te-keskus.fi/ public/downloads, downloaded 31.3.2011. Tevameri, T. (2017). Terveys- ja sosiaalipalvelut. Toimalaraportit: Ministry of Employment and the Economy. ISBN: 978-952-327-253-8. THL National Institute for Health and Welfare. (10.12.2015) Health care and social welfare personnel 2013, https://www.thl.fi/en/tilastot/tilastot-aiheittain/sosiaali-ja-terveydenhuollon-henkilosto/sosiaali-ja-terveyspalvelujen-henkilosto. Accessed 15 Jan 2018. van Slyke, D. (2003). The mythology of privatization in contracting for social services. Public Administration Review, 63, 296–315. Part II Challenges in Meeting Older People’s Needs in the Northern Rural Context Chapter 6 The Foster Family as a Means of Promoting Social Inclusion of Older People in the Russian North

Elena Golubeva and Anastasia Emelyanova

Abstract The ageing population of the Arctic is changing demand for health and social care systems. In Russia, the growing number of older people risk social isolation, particularly in rural northern areas characterised by a remote location and out- migration of younger people and care professionals to larger cities, resulting in lower availability and quality of care services for older people. Remaining community contacts have become a good resource in meeting the needs of older people sin rural areas of Arctic Russia lacking institutional forms of support. In this chapter, we introduce the innovative foster family programme, which pairs lonely old people with foster families, as an alternative form of care provision. The main case study is Arkhangelsk in the Russian Arctic, which is characterised by geographical remoteness, rurality and “northerness”.

Keywords Foster family · Older people · Russian Arctic · Arkhangelsk · Remote location · Rural area · Loneliness

6.1 Introduction

The population of the world and of the Arctic region is ageing (Emelyanova 2015; Lutz et al. 2008). This is changing the demand for health and social care, requiring increasing attention to the needs of the older people. For societal and individual welfare, one of the most burdensome effects of ageing is increasing dependency on other people and the state. In the Russian Arctic exclusion of older people is com- pounded by remoteness, low density (<2 people/km2), and highly dispersed rural communities. The significant lack of transportation infrastructure (roads, bridges,

E. Golubeva (*) Northern Arctic Federal University, Arkhangelsk, Russia e-mail: [email protected] A. Emelyanova Thule Institute, University of Oulu, Oulu, Finland e-mail: [email protected]

© Springer Nature Switzerland AG 2019 85 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_6 86 E. Golubeva and A. Emelyanova car service centres), limited mobile phone service, and decreased availability and quality of both health and social care services increase the risk of social exclusion for the older people (Dwyer and Hardill 2011; Golubeva et al. 2017). ‘Foster families for older persons’1 is an innovative programme in several regions of Russia to promote family-type or “ageing-in-place” support for lonely older people within the community. Little to no research among the English language scholarly publications has examined the older people foster care application in the Russian Federation. This chapter uses the Russian language academic literature and governmental documents, where the term ‘Foster families for lonely older people’ has been used in regional legislation and in the national strategy on ageing, to address several different questions about the phenomenon of transitioning from lonely life in old age to the foster care system. What is the definition of foster families for lonely older people? Who pairs older people with adoptive foster families within their communities? Who in the family is responsible for providing senior care? Why do families opt to become such carers? What are the circumstances around such union? What are the complications in practice? Are there cases where older adults want to exit the agreement and if so, for what reason? What type of support do family carers receive from the authorities? In the Russian regional legislation and the national strategy on ageing, the term’Foster families for lonely older people’ is defined as a “form of providing social services to older and disabled people by organizing joint living and joint household between the person who organized the foster family and the person (s) in need of social services” (Government of Arkhangelsk Region 2015). It is a social service different from a synonymous child care foster family. It has different tasks in pairing older people with families in their communities, where older people become full members of the family household and the families become responsible for providing the care i.e. cooking, hygiene, shopping, everyday household and family activities. In the example of Arkhangelsk region, such older person shall be aged 55+ (women) or 60+ years old (men) whereas the carer in family shall be a legally capable citizen older than 18 years old (Government of Arkhangelsk Region 2015). There are several types of foster family for an older person practiced in Russia: • A family adopts a lonely older persons to cohabit and be taken care of under the terms of the agreement; • A lonely older owner of a housing property signs the agreement to provide his foster family with an apartment for living and a joint household in exchange for care;

1 Equivalent to the term in the Russian language “Приемная семья для граждан пожилого возраста и инвалидов” according to the Government of Arkhangelsk region (2015). Amendments on Law of Arkhangelsk region from 21.11.2011 №382–26-ОЗ on Foster families for older and disabled persons in Arkhangelsk region (amendments in effect from 24.02.2015). http://docs.cntd. ru/document/962031246. Accessed 5 October 2017. In Russian. 6 The Foster Family as a Means of Promoting Social Inclusion of Older People… 87

The agreement is obligatorily tripartite, signed by the person performing services (carer), the older person, and the local social services office. The older person’s carer assists with basic living needs. The social services office oversees the terms of the agreement and pays remuneration to the carer, the amount of which varies significantly from region to region (Appendix 6.1). In most cases, a foster family for lonely older persons is provided for persons with disability(-ies) and limited or lost capacity to keep a household, who need supervision and long-term care and can benefit from a family environment physically, mentally, and household-wise, allowing them to age in place. This practice is particularly prevalent in rural areas of central and northern Russia characterised by heavy depopulation, ageing, and difficulties in accessing institutional care services. In northern Russia, family, close friends, and community contacts are a historically well-established source of assistance for older people when formal forms of institutional support are lacking. Recent research on quality of life for residents in rural areas of the Arkhangelsk region has shown that cohabiting with family members and good social connections add meaning and improve the quality of life for older adults, despite poor health and financial strains (Golubeva 2016; Troshina 2016). Community projects create new, locally appropriate forms of social services in remote areas, provide additional employment in the care sector for local people, and promote state-driven ageing strategies. We use the descriptive approach, critical analysis of existing legislation and social welfare policy, document analyses, and case studies to research the following: 1. National policy documents dealing with population ageing in Russia and main sources of data on ageing at national and regional (northern) level. 2. Scientific concepts on providing social services for the older persons described in the Russian academic literature. We examine good practice examples on addressing the needs of the older people at sub-national level and shortcomings in the formal social support system and the types of changes needed. 3. Cases in regions of Russia displaying geographical patterns of remoteness, rurality and “northerness”, undergoing rapid ageing and depopulation, and characterised by a difficult climate and long distances that limit people’s access to health, social, economic, leisure and education opportunities. We then examine benefits and drawbacks with arranging and implementing care provision via foster families for the older persons as an alternative to state institutions. Overall, the main purpose of the chapter is to introduce a new practice of social inclusion for lonely older people in the Russian Federation, such as the foster family for lonely older persons. We describe this practice as one that promotes partnership between state social services and family care, within the frameworks of the national and sub-national policy on ageing, as well as the World Health Organization’s concept of active and healthy ageing, with consideration of all available to date sources published in Russian scientific journals and authority documents. 88 E. Golubeva and A. Emelyanova

6.2 National Policy on Ageing in Russia

Demographic indices confirm continuous ageing of the world’s population through the past century. According to Scherbov et al. (2018), the median age of the world’s population will increase from 29.6 years in 2015 to 36.1 years in 2050. Using an alternative measurement approach that takes into account increases in life expectancy (prospective median age), the adjusted global median age will rise to 32.8 years in 2050 (Scherbov et al. 2018). In Russia, median age is predicted to increase from 38.7 years in 2015 to 41.4 years in 2050 and prospective median age to 37.2 years in 2050, while in Northern Europe median age will increase from 40.4 years in 2015 to 43.9 years in 2050 and prospective median age to 39.5 years in 2050 (Scherbov et al. 2018). The ageing trend in the Russian Federation is similar to that in Northern Europe. Russia has introduced specific policy documents in response to the demographic ageing (UNECE 2016). Detailed data and estimates on ageing in the country are now available in the databases of the state statistics agency (Federal State Statistics Services of the Russian Federation 2017). Data from a collaborative assessment of population ageing at sub-regional level in 2016 are also available (RANEPA et al. 2016). According to the latter source, many remote northern areas of Russia are demographically worse off than the Russian Federation as a whole. The population of Sakha Yakutia republic in Siberia currently has a median age of 32.5 years, but it is projected to reach 34.3 by 2035, 10 years earlier than Russia as a whole (RANEPA et al. 2016). A study addressing population ageing in the Arctic concluded that the Russian Arctic, in particular its north-west European areas, also demonstrates faster dynamics of ageing among its populations than nation-wide (Emelyanova 2015). In response to ageing, Russia has introduced a 10-year strategy of action on ageing and plan of action for the initial period, 2016–2020 (Government of the Russian Federation, 2016a, b). This legislation complements a number of federal and regional laws already in force with regard to old age policies. According to the strategy and the plan, the main direction for present and future Russia is to improve the current system of social and health services for the older generation. The main target is to empower older people to live healthily and actively as long as possible. The strategy supports development of geriatric medicine and addresses service shortages by training care personnel in services specifically required by the older people. Access to such services is of crucial importance in rapidly depopulating and ageing rural and peripheral areas of the Russian Arctic. In fact, rural remote areas occupy up to 70% of the total Russian Federation territory and 86% of 80 +-year- old residents in rural settlements of Russia need personal care assistance (Golubeva 2016). Below, we summarise theoretical and practical solutions for providing care and social services for old people residing in rural areas across northern Russia, in particular programmes targeting lonely old people who are at risk of social isolation and lack of care. 6 The Foster Family as a Means of Promoting Social Inclusion of Older People… 89

6.3 Theory and Practice of Social Services in Russia to Address the Needs of the Older Persons

Institution-based social service is sufficient if it serves public and individual needs and fully meets client’s expectations. In reality, social care services for old people in Russia are facing great shortages of economic, normative and institutional capacity. Lonely old people are often left without the social services they sorely need in the absence of immediate family. Romanychev (2010) defined the primary needs of older people in Russia as seven composite needs that should be catered for by the state. These are: economic, regulatory, self-preserving, reproductive, communication, cognitive and unlocking potential needs (Romanychev 2010). According to this concept, economic (material) needs are violated in cases of limited financial and material resources, and this is normally addressed by placing the person involved in an institution (residential home) for the older adults. Regulatory needs support the functioning of the ageing body, primarily with the help of healthcare. The self-preserving component supports living in physical safety. By reproductive needs Romanychev means older people supporting younger family members. The communication element involves strengthening the capacity of old people to communicate with relatives, friends and neighbours. Finally, cognitive needs manifest themselves in life-long learning and in providing the conditions for people to unlock their personal and creative potential in the ‘third’ and ‘fourth’ ages. The foreign expression ‘unmet (social) service needs’ also appears in the Russian research literature, for example when referring to the fact that service providers who are in charge of assessing an old person’s needs often overlook, neglect or underes- timate some vital needs, whereas ‘met service needs’ are those effectively addressed with sufficient services and resources (Krasnova 2012). One important aspect is that older consumers of social services are also a highly heterogeneous group. The combination of needs varies in each individual according to age, health, capacity for self-service, financial status, opportunity to obtain support from the close network etc. According to Bakharev and Svischev (2008), this heterogeneity aspect is rarely captured in planning and implementing policy on services in Russia. There is no targeted client-orientated support of older adults or structured and dynamically updated feedback on the provisioning of basic services, or on how well old people adjust to changes in service provision (Bakharev and Svischev 2008). Bashkireva et al. (2015) concluded that the main shortcoming of the current Russian system of social support is the highly formalised structure. Only services from the official state inventory can be provided, whereas an innovative approach would be to follow individual client-based needs and be flexible in offering services outside the guaranteed minimum. Despite the new strategy and plan of action on ageing in Russia outlined above, the number of social and healthcare-providing institutions and assisted living facilities is decreasing, including nursing homes, hostels for the older persons and personnel involved in care in Russia. Therefore the 90 E. Golubeva and A. Emelyanova number of old people receiving social and care services in their home and in specialist institutions has declined in recent years (Bashkireva et al. 2015). National statistics indicate that the number of visits by older patients to the local doctor (out-patient care) decreased by 26.3% in the past year. At the same time, the number of older adults admitted to hospitals grew by 7.5% (in-patient care) (Newdaynews 2017). This situation stems from the so-called ‘optimisation’ of healthcare services by closing many polyclinics within local communities. Accessing a wider range of healthcare services also generates unaffordable costs for the older persons. Thus, old people, especially in rural areas, decrease their visits to the doctor but ultimately end up in hospital with advanced disease and, consequently, more expensive treatment. The rural older adults have decreasing access to services and activities and their situation may be exacerbated by their poorer socio-economic conditions (UNECE 2017). Suggested strategies to respond to this challenging context are stronger collaboration between all public and private parties and encouragement of bottom-up, community-led solutions to make services more cost-effective and accessible to old people in rural areas. In fact, many rural areas are better at integrating old people than urban areas, providing a good level of support from the community. The Russian literature agrees that creating a rather informal network of community caregivers helps meet demand in social care (REFS). It works to counteract isolation and loneliness, partly compensating for care that is normally provided by the family but may not always be available if an old person does not have family or if younger family members have moved away. This is helpful in light of the lack of formal care services in rural areas (Walsh et al. 2012; Golubeva 2014). Volunteering in later life is a good practice to support inclusion of old people in societal life in rural remote communities. However, according to Emelyanova and Rautio (2015), little attention has been paid to inclusive ageing policies in the Arctic countries, including Russia. The potential benefits of volunteering in Russia are poorly recognised and the share of older volunteers is very small. Only 1% of people aged 55–69 (in both urban and rural populations) take part in events organised by the Union of Pensioners of Russia and the Society for People with Disabilities, while 1–4% attend cultural meetings (Presniakova 2005; Emelyanova and Rautio 2015). A distinction between factors affecting quality of life in old age in Russia is made for northern areas (Golubeva 2016), connected to demographics and population structure (age and sex) in the Russian Arctic (Emelyanova 2015). Institutions and out-patient settings are often prioritised in the Nordic countries to respond to the growing care demand from old people (Vaarama et al. 2007). However, Arctic communities in Russia maintain strong ties with family and relatives and this is important to consider when devising effective strategies to promote social inclusion of old people in these areas. From cultural, and also ethical, emotional and economic viewpoints, it might be best to support the ‘ageing-in-place’ approach (Fausset et al. 2011; Wiles et al. 2012). In Arctic Russia, the great remoteness of many rural settlements, harsh climate conditions, disjointed transport system, age-unfriendly housing and extra-low 6 The Foster Family as a Means of Promoting Social Inclusion of Older People… 91

population density are all major challenges. They require policies to be flexible and sensitive to local variations in cultural realities when planning and implementing new forms of social service and care in old age. A system of social support should take into account the location and the interests and needs of the older persons, to facilitate new types of social support. In this vein, novel approaches have already started achieving wider usage, e.g. those that target individual needs, enhance inclusion of lonely older people into social life and reinforce intergenerational communication. Below, we describe services designed to reach out to lonely old people residing in rural areas of Russia, in particular the benefits and challenges of the foster family innovation.

6.4 New Approaches to Care in the Northern Regions of Russia: Foster Families for Lonely Old People

Combatting the loneliness and isolation of older people in rural areas can be facilitated through early identification of persons at risk. This involves mapping exercises or ‘first contact schemes’ whereby local support agencies collaborate to help particularly vulnerable people (Goodman et al. 2015). This context is similar across rural, sparsely populated and remote areas in northern Russia. However, these areas also have their own cultural and physical realities. Thus it is highly important to design policies on ageing and inclusion that adopt a bottom-up approach at local level, supported by sub-national and national authorities. A novel social service approach is foster families for lonely old people. Initially, foster families for old people were not official, but were rather experimental and informal (Bondarenko 2011). The first act of a lonely older woman moving into the home of her carer (social worker) was registered in 2000, in the Kirillov district of the Vologda region. By 2004, more than 280 families in the Novosibirsk and Perm regions of Russia has fostered lonely old people. The aim in creating the foster family approach was to withdraw an older individual from unsuitable living conditions, provide family-type care and thus prevent social loneliness, strengthening the traditions of intergenerational assistance and the opportunity for older people to live their usual way of life, instead of being placed in a care institution. By 2014, there were about 4000 foster families for old people already functioning in different regions of the Russian Federation (Ministry of Labour of the Russian Federation 2014). In many cases, the regional practice of creating foster families for the older persons emerged due to absence of a federal state policy in this regard (Vasilchikov and Chikarina 2013). The practice of creating and maintaining foster families for older people has become most widespread in distant and remote areas of the Russian Federation, e.g. Russian north-west European regions, northern Siberia and the Russian Far East (Butyeva 2015). Different types of foster families for old people have been created. One type derives from the practice whereby a social allowance is paid to a family 92 E. Golubeva and A. Emelyanova member who is forced to stay at home and take care of a sick relative. In that case, the carer can also commit to assist an outsider (older adult outside the family) by taking them into the family. Alternatively, a lonely old person who has their own house can invite a prospective carer and their family to move in, based on a corresponding agreement on cohabitation (Vasilchikov and Chikarina 2013). Both ways of organising a foster family aim at improving the quality of life of older people, maximising their stay in their familiar home environment and strengthening the traditions of intergenerational support, preventing loneliness. At present, the foster family is understood as a joint residence and common household of a person who needs social services and a person who wishes to provide those services to an older person who is not a relative. A tripartite agreement on the foster family is signed by the person performing services (carer), the older person and the local social services office. The carer for an old person assists in basic living needs (cooking and serving food, hygiene, shopping, accessing healthcare etc.). The social services office oversees the terms of the agreement and pays remuneration to the carer, the amount of which varies significantly from region to region (Appendix 6.1). The Tomsk region of north-west Siberia has adopted a regional law on the organisation of social services for its citizens (Government of Tomsk region 2015). Foster families for old people have been officially introduced, based on families of social workers in the region. Providing services in the home of carers is a new type of social services activity in the Tomsk region, which regional law defines as joint cohabitation and house-keeping for an older person by a social worker who is not a relative. This arrangement is intended for older and disabled people who need temporary or permanent external help because of health problems. The carer is responsible for caring for the older or disabled person in their home. Families are selected on an individual basis, with a preliminary examination of living conditions on both sides, as families in rural areas usually live in houses with no modern conveniences. The service users are single old people whose average age is 78 years. This practice is aimed at keeping old people in their usual social and family-type environment (Government of Tomsk region 2015). The Sakha (Yakutia) region is located north-east of Tomsk. This vast region is similar in size to India, but has an overall population of less than one million. Fifteen administrative districts in Yakutia started to employ foster families for the older persons when a new law came into force in 2013 (Government of Sakha (Yakutia) republic 2016). Districts where residential social institutions had already closed were used as pilot cases. At the moment, Yakutia has 96 older individuals living in 94 foster families. These families receive a monthly payment of 16,743 roubles from the local Ministry of Labour for the care services they provide. In 2018, funding for 50 more lonely old people to join a foster family will be provided by the local authority (YakutiaMedia 2017) According to the agreement, the older person gives 75% of their pension to the carer to be spent on general needs - food, clothing, rent etc. This programme works best in rural areas, with many foster families taking care of their late-age neighbours. 6 The Foster Family as a Means of Promoting Social Inclusion of Older People… 93

Table 6.1 Population (pop) aged above 65 and aged above 85 years in Russia and in the Arkhangelsk region, in total numbers (mln) and as a percentage of total population by sex and urban/rural setting, 2017 Sex Both sexes Male Female Area Urban Rural Urban Rural Urban Rural Russian Federation Total pop, mln 109.0 37.8 49.9 18.2 59.2 19.6 Total pop, % 74.3 25.7 73.3 26.7 75.1 24.9 % 65+ 14.1 14.4 10.0 10.2 17.7 18.3 % 85+ 1.4 1.6 0.7 0.7 2.0 2.4 Arkhangelsk regiona Total pop, mln 0.9 0.3 0.4 0.1 0.5 0.1 Total pop, % 78.0 22.0 76.6 23.4 79.2 20.8 % 65+ 13.6 17.0 8.9 11.4 17.6 22.5 % 85+ 1.3 1.7 0.5 0.7 1.9 2.6 aWithout Nenets autonomous area

With some modifications, the foster family for old people approach has started to be supported by another Arctic region, Arkhangelsk, which is situated in the north- west European part of Russia. According to recent statistics, the population in the Arkhangelsk region has been steadily ageing and shrinking, so that by 1 January 2017 the population comprised 1.22 million people, of whom 56% were of working age, with 296,344 of non-working age and 13.3% aged 65+, (Federal State Statistics Services of the Russian Federation 2017). Table 6.1 compares the shares of population aged 65+ and 85+ for urban and rural territories of Russia and Arkhangelsk in 2017. Population ageing is more pronounced in the region’s rural areas, especially for females in older ages. Like the majority of other Arctic regions of Russia, Arkhangelsk shows a stronger ageing trend in rural areas than the national average (Emelyanova 2015). The capacity of the region to provide institutional care for the older population shown in Table 6.1 is: 14 nursing homes for persons in all ages, with 2175 beds (eight in psychoneurological institutions); six nursing homes for the older and disabled people, with 484 beds; and 12 departments in local social services centres with 398 additional beds. This capacity is not enough and there are queues for places in these institutions. In response, the Arkhangelsk region’s authorities have recently put more emphasis on replacing in-patient care with family-based care for lonely old people. Guidance on foster families for the older and disabled people has been developed (Government of Arkhangelsk Region 2015) and has shown positive results. In 2012, 10 foster families were established; in 2013 there were 23 such new families, in 2014 59, in 2015 75 and in 2016 64. A certain percentage of foster families recruited tend to drop out, e.g. of the 64 families created in 2016, eight terminated the agreement in the same year. The majority of older recipients are aged 76–85 years (36%) and most are females (72%). The majority of care providers (within the foster family) are also females (96%) (Government of Arkhangelsk region 2016). 94 E. Golubeva and A. Emelyanova

The foster family form is most prevalent in rural areas of Arkhangelsk (63% of all foster families). This is logical, as quality of life in villages in the Russian north is more dependent on the presence of family than on the state institutions for health and welfare. A foster family can increase affordability and cover variations in official care provision in remote and sparsely populated northern areas, and should help attain higher satisfaction and quality of life (Golubeva 2016). The legal basis for the creation of a foster family in Arkhangelsk is the foster family contract, as everywhere else in Russia, which is signed by the social services department for the Arkhangelsk region, the person who has volunteered to organise a foster family and the person in need of social services (Government of Arkhangelsk Region 2015). The activities of foster families in the Arkhangelsk region are organised and implemented in accordance with the following principles: 1. Identify old persons in need of social services. 2. Ensure the rights of the person in need of social services. This is the responsibility of the regional authority for the Arkhangelsk region and the central social services department responsible for Arkhangelsk (hereinafter ‘state social services department’), and other relevant officials; 3. Ensure equal opportunities in receiving social services and accessibility for people in need of social services. 4. Focus on the individual needs of people in need of social services and plan to provide them with these social services. 5. Obtain the voluntary agreement of the person in the foster family to provide the necessary social care duties. 6. Obtain the voluntary consent of the person in need of social services to live and receive social services in a foster family. A foster family can be created by any adult legal citizen who has a place of residence in the Arkhangelsk region and who agrees to commit to living with and running a joint household with a person(s) who needs social services, in order to provide that specified person(s) with social services in accordance with the foster family contract. The person who provides social services in accordance with the foster family contract receives remuneration from the regional budget. A foster family arrangement may not involve close relatives (relatives in a direct ascending and descending line (parents and children, grandfather, grandmother and grandchildren), full siblings and half-siblings (having common father or mother) brothers and sisters), or adoptive parents and adopted children. The foster family contract between the state social services department, the foster family and the old person in need of social services takes the form of a passport prepared by the state social services department and approved by a resolution of the regional authority. The state social services department in the Arkhangelsk region agrees compensa- tion to the foster family on the basis of the contract and social services provided. The social services rendered are compiled monthly and signed off by the host family, the state social service department and the person receiving the social services. (Golubeva and Kushnarenko 2017). The concrete algorithm used for creating a 6 The Foster Family as a Means of Promoting Social Inclusion of Older People… 95

foster family for senior citizens in the Arkhangelsk region is presented in Appendix 6.1. Provision of household and personal care needs in the home of a lonely older person is not comparable with the services provided in foster families. The family is an independent form, which is characterised by the presence of its own characteristics, and the multiplicity, quantity and nature of services are comparable to those provided by an institution (Osokheeva 2013). Comparing the approximate costs for one older person in a permanent or temporary residential home and in a foster family for 12 months, the second option is cheaper. Osokheeva (2013) concludes that the foster family costs much more than home-based services, but provides a much higher overall quality of services. According to Ghiga and Golubeva (2018), the programme can also present a more cost-effective way of providing care to older persons than residential care, although more research is needed to establish value for money and cost-effectiveness. There have been public discussions about foster homes for the older persons, with citizens and social activists expressing doubts that the older or disabled person can actually get fully fledged care in a stranger’s family, when they sometimes do not get such care even within their own family circle. There are also doubts about the disinterested motives of those who create such foster families and a suspicion that they take older people into their families only for the sake of the monthly cash payments and other material benefits. Through the foster family system, a lonely older person gets a chance to spend the rest of their life in a family circle, in a com- fortable moral and psychological setting, and can possibly be useful (even if this utility is reading books for children). On the other hand, people who accept an older person into their family get the opportunity to realise their capacity to help the needy, brighten someone’s life and maybe even their own, extend and improve someone’s life and give a good example to their family members and others. For some, this can be a great opportunity to make up for “incomplete” families – to gain a parent, or grandparents for their children. In addition, in caring for an older person people give their children a good example of a traditional family way of life, in which younger members of the family provide decent care for the older generation, which is important for maintaining intergenerational solidarity. Sociological surveys of 50 foster families with at least one year of joint cohabitation in the Arkhangelsk region’s foster family for the older persons programme have shown that the programme has increased the availability of social assistance and is a means of meeting the most vital social needs in a family microenvironment in remote rural areas (Golubeva et al. 2017). The main motive for the foster family is the desire to help the older person (75.9%). Older respondents reported the importance of the microclimate in the foster family and, communication with the environment as an important socio-psychological support. This is the backbone of decent ageing in the community and maintaining self-service skills, which affects the functional state and, in general, the quality of life of older people (Golubeva et al. 2017). Experience shows that in implementation of the foster family approach in regional practice, there are difficulties associated with the selection of candidate foster families. Establishment of a databank of candidate foster carers for the older 96 E. Golubeva and A. Emelyanova persons can be a solution for this issue. However, this requires additional research. The data from the studies cited above showed that all older people had previously been in close contact with their foster family members, and knew each other well. One solution to recruiting new foster families could probably be better promoting and informing the local population about the practice and opportunities associated with “ageing in place”. This can be routinely done by social workers and heads of local settlements (communities) in remote areas. In this case, informal assistants and an older person could make a voluntary decision to create a foster family based on the support of state social services. There is still very little experience of supervision (professional accompaniment) of foster families among the official social services for the older people. According to pilot data, additional training of social services specialists in knowledge and skills in the field of conflictology and psychiatry is required. The absence of special programmes for working with foster family organisers in all regions of the Russian Federation requires continued research and development on this innovative practice. Official monitoring of the effectiveness and quality of services provided by foster families to older people is not yet in place, since the law does not place any such obligation on government agencies. From the point of view of ethical interference in the family, in our opinion this lack of direct monitoring is justified. The family is a self-regulating system that solves its problems. If there are objective difficulties, one can always seek advice from the local social worker. The tripartite account signed monthly (by an older person, an organiser of a foster family and a representative of the social services centre) on the amount and type of services rendered represents a form of monitoring of the foster family. Observation and support by a social worker caring for the family is one of the methods for monitoring the situation.

6.5 Conclusions

In this chapter, we reviewed national and regional policies on ageing in the Russian Federation and research aspects and social work practices dealing with the older people care. In particular, we examined use of a foster family for lonely older persons as an alternative to standard institutional forms of support and social services. This practice is novel and mostly applied within the context of rural remote settings in northern Russia, with their vast geographical spread and sparse population. It respects the regional historical tradition where older people living in communities in northern regions seek help from family and community, rather than using the formal system of care and social services. The foster family concept helps to maintain traditions and also enhances intergenerational solidarity, which is requested in most international literature on the policy of ageing. 6 The Foster Family as a Means of Promoting Social Inclusion of Older People… 97

We reviewed the main Russian academic literature in the field as regards the foster family context, but also the wider theoretical framework of social inclusion of older people living in remote communities in Russia. As cases, we described the realities in the Tomsk and Yakutia regions and particularly in the Arkhangelsk region in north-west Russia. It has established around 150 foster families to date, to run their daily life together with a lonely old person from outside the family. The agreement is recognised in regional laws and formalised in a contract and monthly services account monitored by the local social services department. We identified shortcomings in the formal system of social support in Russia and the kind of changes needed, in particular family-orientated types of care. A legally binding system of foster families can respond more quickly to the changing needs for different types of services and increase the number of services provided for an older person in the family. The foster family thus performs a special function, which is to cover gaps in the activities of health and social protection agencies, but has very limited capacity in those cases where professional knowledge and skills are needed. Establishing collaborations and mutual assistance between different social structures could allow the foster family to play an even more effective role in caring for the older people. Our analysis of the system of foster families for the older and disabled people also revealed existing difficulties and unresolved issues. However, we believe that this new form of social service for older adults can decrease the risk of social exclusion, in particular among older residents of remote, sparsely settled areas of the Russian North, where the availability of formal social services is limited.

Appendix 6.1 Algorithm for Creating a Foster Family for the Older People in the Arkhangelsk Region

Who can create a An adoptive family can be organised by an adult legal citizen who is an family for the Arkhangelsk region resident, wishes to take the obligations of living older person? together and managing a joint household with a person(s) in need of social services, and agrees to provide the mentioned person with social services in accordance with the foster family contract. Who can be taken A lonely resident in old age (women over 55, men 60) or a disabled person to the foster who is an Arkhangelsk region resident and in need of social services in family for the connection with a partial or complete loss of the ability to fulfil their needs older person? independently, due to limitation of the ability to self-service and movement. Where to apply to An adult citizen who has expressed a desire to create a foster family should organise a foster apply to the social services centre at their place of residence. family for an older person? (continued) 98 E. Golubeva and A. Emelyanova

What documents (1) Written application; need to be (2) Copies of the passport of a citizen of the Russian Federation or other provided to create identity document confirming residence in the Arkhangelsk region. a foster family for (3) Copies of documents confirming the family composition (birth an older person? certificate, marriage certificate, court decision on recognition as a family member etc. (4) A copy of the financial account from the place of residence. (5) Information on family income for the last three calendar months preceding the month of application; medical certificate of the absence of chronic alcoholism, drug addiction, substance abuse, quarantine infectious diseases, active forms of tuberculosis, severe psychiatric disorders, venereal and other diseases requiring treatment in specialist medical organisations; and a certificate that the person who has expressed a desire to organise a foster family is not a bacteria or virus carrier. (6) Documents on the right of ownership or use of a dwelling in which the person who has expressed the desire to organise a foster family lives and information on the total area of the dwelling. (7) Written consent of all adult family members, including temporarily absent family members, to live together with a person in need of social services. If needed, the workplace of the person who wishes to organise a foster family can be asked about their characteristics. Interaction with All documents are registered by a specialist at the local social services the social services centre. The specialist examines and verifies the completeness and reliability centre of the required documents. Then the specialist carries out a survey of social and living conditions for people in need of social services and those who have expressed a desire to organise a foster family. The employees of the centre, together with the psychologist, provide psychological training for those who have expressed a desire to organise a foster family. Documents A decision is made on creating a foster family agreement after receiving regulating the written consent from an older person and a person who has expressed a creation of a desire to organise a foster family. The parties to such an agreement shall be foster family for notified of the decision taken within five working days from the date of the an older person decision. The foster family agreement is concluded between social services centre, the person who has expressed a desire to organise a foster family and a person in need of social services no later than 5 days from the decision on the possibility of concluding a foster family contract. The foster family contract can be terminated on the grounds provided for by civil law or foster family contracts. Payment of social The social services centre makes payment for social services provided by services the person who organised the foster family on the basis of the foster family agreement and the social services specified in the agreement. The amount of payment to the person who organised the foster family is 4358 roubles per month (2017) in the Arkhangelsk region). It varies in the regions: 2500 rubles in Voronezh region in 2016 to 9868 roubles in Khanty-Mansu autonomous area, and 16,743 roubles in Sakha Yakutia. There may be increments if the older person has a disability or if more than one person is fostered per family. Modified in Ghiga and Golubeva (2018) 6 The Foster Family as a Means of Promoting Social Inclusion of Older People… 99

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Marjo Outila, Marjaana Seppänen, Pilvikki Lantela, and Pekka Vasari

Abstract In recent years, Finnish care policy has emphasised that older people should remain at home for as long as possible. Since the final stages of life and death will theoretically happen more often in the home, it is important to identify people’s experiences and needs regarding end-of-life care and dying. The aim of this article is to provide knowledge on these questions from the perspective of the Northern Finnish people (N = 294). Statistical analysis was used with data gathered from a survey of a random sample. People’s wishes for their end-of-life place and carers and their end-of-life plans and concerns, are analysed as part of a social and cultural construction of dying and end-of-life care. The results show that people do have end-of-life concerns and that they consider end-of-life planning important but that few preparations are actually made. In many instances, home is regarded as the best place for end-of-life care and dying, but care institutions are also regarded positively. Reliance on professional care is very strong, even though people hope to

This study is part of a comparative end-of-life care research initiated by Sapporo City University (Kazuyo Sooudi and Midori Mimaya) and Hokkaido University (Reiko Takeu and Azusa Shikanai) and carried out by the aforementioned together with the University of Lapland. Supplementary questions were added to the Finnish questionnaire (e.g. concerning end-of-life preparations) by the Finnish research team (Marjaana Seppänen, Marjo Outila, Eeva Rossi, Heli Valokivi, Satu Peteri). The analysis of the data was conducted as part of ‘A well-functioning home care to Lapland – Diverse forms of support to living at home’ project funded by the Finnish Ministry of Social Affairs and Health. At an early phase of the analysis, help was received from statistics teacher Marianne Silen (University of Lapland).

M. Outila (*) · P. Lantela · P. Vasari Faculty of Social Sciences, University of Lapland, Rovaniemi, Finland e-mail: [email protected]; [email protected]; [email protected] M. Seppänen Faculty of Social Sciences, University of Helsinki, Helsinki, Finland e-mail: [email protected]

© Springer Nature Switzerland AG 2019 103 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_7 104 M. Outila et al. receive care from family members as well. The results are discussed in the light of Finnish care policy and end-of-life culture.

Keywords Advance care planning · End-of-life care · Dying

7.1 Introduction

In traditional societies, death was part of everyday life. People prepared for it in the midst of their everyday lives and died in the places where they had spent their lives (Elias 1985). However, as societies started to modernize and the service sector began to grow, the last stages of life were transferred from homes to institutions such as hospitals and care homes. Death became isolated from everyday life and medicalized (Miettinen 2006). In recent decades, the orientation of care for older people has changed from institutionalised care to care given at home. To enable people to live at home for as long as possible is currently the organizing principle of services in Finland. This became particularly clear in 2013 with a new ‘Act on Supporting the Functional Capacity of the Older Population and on Social and Health Services for Older Persons’ (980/2012). From the beginning of 2015, the law was changed to promote a larger proportion of older adults residing in private homes. As an outcome of these reforms, it can be anticipated that the final stages of life will more often be spent at home—and due to the reduction in child mortality and improvements in medical care, death is most likely to be encountered after a long life in which illness has been part of life (Luptak 2004; Lloyd 2010). Dying has mostly been approached as a medical and nursing issue, both in professional practice and in research (Brown and Walter 2014). As part of this tradition, death has been studied from the perspectives of the psychological processes experienced (e.g. Kübler-Ross 1969) and the care needed. The care of older persons has been examined from the perspective of both caregivers and care receivers in both informal and formal care contexts (e.g. Genet et al. 2011). As having older people in poor physical health and dying at home becomes a more regular part of the everyday life of families and home care services, the significance of the subject becomes greater. Providing information about psychosocial and cultural issues in the context of end-of-life care and death is a rare but important and growing research area (Donovan et al. 2011; Carr 2012; Bullock 2011; Ko et al. 2013). The understanding of death is culturally bound (Leishman 2009a), and the structures of society and the organization of responsibilities and practices relating to care define how the last stages of life and death are encountered (Gomes et al. 2011). Especially important are those practices that relate to the social and health services (Luptak 2004). 7 Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns… 105

7.2 Theoretical Point of View, Research Questions, Data and Method

The aim of this study was to provide knowledge about the end-of-life wishes, concerns, and preparations of the people of Northern Finland as part of their socio- cultural construction of death and end-of-life care. We analysed our findings in the light of current thinking that Western culture is in a place where old age, especially the fourth age in which care and end-of-life issues are central, is culturally rejected and pushed away from normal social life (Higgs and Gilleard 2015; Elias 1985). Elias (1985) suggests that we have been distanced from the aging process and from dying. He writes about the ‘repression’ of death, as one aspect of a more comprehensive movement in civilisations in which death is pushed more and more behind the scenes of everyday social life. Many people have difficulty in identifying with aging and death. For the dying, this means isolation and those close to the dying person often have difficulty in facing the prospect of death. Death and dying are spoken of less openly and less frequently. Elias writes that people are forced back onto their own resources, and into their own individual powers of invention, in dealing with, for example, emotions relating to dying. There are insufficient common expressions or standardized forms of behaviour to make it easy for people to confront emotionally challenging situations like dying. (Elias 1985.) Included in the socio-cultural constructions of old age and dying are perceptions of how we should act in relation to our own death; how we should prepare for it, and how we wish for or can rely on the help and care of others when our own death is near. Death as a social construction means that it is defined using words, concepts and ways of thinking that are available in the individual’s culture; included are ideas of change through time and the differences, for example, between individuals and social groups (Leishman 2009b; Kastenbaum 1998). Our research questions are: • What kind of end-of-life preparations, concerns and care preferences do people have? • What can be said about the social exclusion of dying when thinking about people’s end-of-life preparations, concerns and care preferences, and what implications may this have for care policy and practices? Our research data consisted of responses from 294 people to a postal survey with a random sample. The aim of the survey was to gather information related to end- of-life care and dying.1 The survey was sent to 1000 adults older than 20 years living in two cities in northern Finland, and the data was collected in December 2015. The selection of Rovaniemi and Sodankylä as the research areas was based on a

1 There were 46 questions in the questionnaire, one of which was an open question. Examples of questions: Have you experienced someone close to you dying? Does thinking about the end-of-life worry you? If it does, what kind of worries do you have? Where would you like to spend the final stages of your life? From whom would you like to receive care at the end of life? 106 M. Outila et al.

Japanese-Finnish comparative study design: in both countries, two northern urban regions that are surrounded by a sparsely populated area were selected for study. The response rate was 29%. (See Table 7.2 for detailed information.) Demographic variables in the survey were age, gender, household size, education, annual income, self-reported financial security and self-reported health. Probably due to the theme of the survey, over half of the respondents were 63 years of age or older. As compared to the general population of the area, respondents were more likely to be older, women, less likely to be living alone, and having a low income (19,999 euros or less, per household, per year). The aim of the study was to form an overview of the respondents’ thoughts and opinions; therefore the data were analysed by using descriptive statistics. The differences among variables were analysed by bivariate cross-tabulation, and the significance of differences between groups was evaluated using a chi-square test. Reported p-values were exact (2-sided). Most research in the area of advanced care planning and end-of-life care is qualitative, using focus groups and interviews for gathering data (e.g. Bito et al. 2007; Ko and Berkman 2012; Piers et al. 2013). This study contributes to the literature by using quantitative methods and targeting a wider age range. Unlike many other studies, this survey did not target the older generations only, but all adult residents (20 years or older, with a mean of 62 years), and information was collected ran- domly rather than recruiting people from clinics or senior centres (versus Malcomson and Bisbee 2009; Lynn et al. 2016; Brinkman-Stoppelenburg et al. 2014). At the end of the survey, respondents were asked to share their thoughts and experiences of home care, end-of-life care and dying. Eighty-three (28%) shared their thoughts on these topics. Extracts from these data are used in this article to reveal respondents’ thoughts and feelings.

7.2.1 Ethical Issues

The questionnaire and research plan were approved by the University of Lapland research ethics committee.

7.3 Results

7.3.1 End-of-Life Concerns

More than death, I fear ending up in a breathing machine, or the like, lying and withering with the pain. Death causes worries and fears in people’s lives, although the causes of their concerns may change over time (Elias 1985). In our study, more than half of the respondents had some kind of end-of-life concerns (Table 7.1). Respondents were most 7 Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns… 107 (continued) (1) = 0.106 (1) = 0.525 (1) = 0.145 (1) = 0.857 2 2 2 2 9.4 11.1 12.9 10.8 9 p:.568 p:.938 p:.488 11.9 9.2 p:.848 9.9 11.1 10.9 Other concerns % χ χ χ χ ∗ ∗ ∗ (1) = 0.620 (1) = 5.741 (2) = 7.866 (1) = 4.663 2 2 2 2 p:.024 p:.020 18.8 6.9 17.1 7.2 8 χ χ χ χ p:.040 5.6 13.8 p:.552 11.6 8.8 9.9 Regret over unfinished over Regret things % ∗∗∗ (1) = 0.993 (1) = 2.060 (2) = 3.453 (1) = 26.122 2 2 2 2 p:<.001 p:.157 p:.176 χ χ χ χ 23.4 13.2 35.7 15.7 9.5 19.4 13.1 p:.339 19 14.6 16.7 Financial concerns % ∗∗∗ ∗ (1) = 0.186 (1) = 6.685 (2) = 24.990 (1) = 3.825 2 2 2 2 p:<.001 p:.062 χ χ χ χ 59.4 36.8 47.1 19.3 34 30.6 45.4 p:.713 p:.011 35.5 38 37.1 Concern over Concern over % family (1) = 1.526 (1) = 0.014 (2) = 0.430 (1) = 1.004 2 2 2 2 χ χ χ χ p:.825 p:.398 25 22.9 25.7 20.5 20 22.5 23.1 p:.256 p:1.000 19 25.1 22.4 Concern about death itself % ∗∗ ∗∗ (1) = 0.237 (1) = 1.916 (2) = 10.879 (1) = 11.494 2 2 2 2 73 56.3 75.4 χ 45.8 52 χ 53.1 61.2 χ p:.633 p:.189 p:.004 p:.001 55.4 58.2 χ 57 Thinking of end-of-life causes concerns % Respondents’ end-of-life concerns 3–6 persons 2 persons Insecure Household 1 person Financially Secure ≥63 years <63 years Male Female % of all respondents Table 7.1 Table 108 M. Outila et al. (2) = 0.757 2 p:.704 11.9 10.1 13.9 Other concerns % χ (2) = 0.325 2 p:.891 χ 11.9 10.8 8.9 Regret over unfinished over Regret things % (2) = 4.990 2 p:.086 χ 7.1 15.8 22.8 Financial concerns % ∗∗ (2) = 10.781 2 χ p:.004 33.3 45.6 24.1 Concern over Concern over % family (2) = 0.988 2 χ p:.638 23.8 24.7 19 Concern about death itself % (2) = 2.719 2 p:.255 59.5 61.8 χ 50.6 Thinking of end-of-life causes concerns % 70,000− 20–69,999 Annual income per household −19,999 ∗ p < .05 ∗∗ p < .01 ∗∗∗ p < .001 Table 7.1 (continued) Table 7 Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns… 109 worried about the family that would be left behind. The possibility of pain, illnesses and suffering at the end-of-life also caused concerns. The qualitative study of Fleming et al. (2016) echoes these themes: the participants were not worried about death itself, but about the dying process and its impact on the persons who would be left behind. As in our study, the respondents hoped to die quickly and peacefully. Concerns about family left behind and regret about unfinished issues are less common among older than younger adults. Younger respondents (under 63, and henceforth referred to as younger adults) are generally more worried than the older adults (63 or older, and henceforth referred as older adults), although the difference is not statistically significant.2 Most existing research suggests that concerns lessen as people age. Fear of death or death anxiety is less common among older adults than among younger adults (Cicirelli 2006; Chopik 2017; Fortner and Neimeyer 1999; Russac et al. 2007). Our study did not confirm the connection between health problems and end-of- life concerns, which was contrary to other studies that have stressed that poor health and mental health problems are related to end-of-life concerns (Fortner and Neimeyer 1999; Hofer et al. 2017; Krause and Hayward 2015). One possible explanation for this is the low number of respondents who reported ill health. Social support and being married can buffer fear of death (Chopik 2017; Hofer et al. 2017; Azeem and Naz 2015), but in our data, there was no significant difference regarding fear of death and dying between those who lived alone and those who lived with a partner or family members. However, respondents from bigger households were generally more worried than those living alone. Age mediated this result: 82.8% of people living in 3–6 person households were under 63. Unsurprisingly, respondents from bigger households were also more worried about family members than those living alone, and they had more regrets over unfinished issues. Additionally, our research suggests that financial insecurity has an impact on people’s end-of-life concerns. People who reported themselves to be financially insecure had more concerns generally, both financial and regrets about unfinished issues. There was no difference in end-of-life concerns between the women and men in our study. Previous studies show contradictory results regarding the effect of gender on death anxiety (French et al. 2017; Azeem and Naz 2015; Hofer et al. 2017; Fortner and Neimeyer 1999; Neimeyer et al. 2011; Russac et al. 2007).

7.3.2 End-of-Life Preparations

I have made a living will. They are not going to keep me alive by force with tubes and with heavy pain medication. In the light of end-of-life preparations, Elias’ concept of people pushing death away seems accurate. In our study, only 29% of the respondents had made some

2 The age groups were divided (<63 years and ≥63 years) based on the fact that 63 is a common retirement age in Finland. 110 M. Outila et al. preparations, and similar low numbers have been reported elsewhere (Clarke et al. 2012). Financial arrangements seem to be the most common preparation made in both our and previous studies (Kelly et al. 2013; Samsi and Manthorpe 2011). Fourteen percent of our respondents had made a will, which was the most common single arrangement, and 8% had made burial or funeral arrangements. When looking at more care-related preparations, the proportions were not much bigger: 9.5% had completed an advance directive, 3% had a continuing power of attorney (which did not necessarily focus on care arrangements), and 2% of the respondents had made other care arrangements or had care-related discussions. Our analysis focused on the completion of an advance directive (AD), a document giving information about your wishes concerning end-of-life care, for example, medical treatment (e.g. resuscitation) and other care preferences. ADs are one aspect of advance care planning (ACP), which includes, for example, discussions with family and healthcare providers about future health-care. The aim of ACP is to clarify people’s thoughts, hopes and values so that health and medical care decisions will reflect the person’s views. In our study, there was an inconsistency between attitude towards AD and the actual completion of it. Most respondents (79.4%) viewed an AD as necessary, but only 9.5% had completed it. Only 2.7% of the respondents viewed AD as unneces- sary and 17.9% could not express an opinion on the subject. A larger proportion of older adults as compared to younger adults had completed an AD. Also, living alone, having faced the death of a close person, having provided care at home and having cared for a dying person all increased the likelihood of having made an AD (Table 7.2). End-of-life issues may seem somewhat redundant for younger people in a society where death is far from everyday life. One of the respondents wrote: ‘At the age of 27 it is difficult to think about the end of life period’. When people get older, the probability of facing the death of a family member or a friend increases, thus the probability of facing end-of-life care issues increases as well. As a result of this, it is more likely that people will come to think about their own end-of-life and perhaps make some arrangements for that. Our study reinforces the results of earlier studies on the effect of age: older adults’ ACP exceeds the arrangements of younger adults. The statistical significance is stronger in other arrangements than in AD. Usually, ACP increases with age, but there are exceptions (Ke et al. 2017; Kelly et al. 2013; Lynn et al. 2016; Shapiro 2015). In the light of our study, living alone affects ACP. People who live in one-person households, especially older people, have more often made an AD and other end-of- life arrangements. This result parallels that of other studies. People who live alone with no relatives have a tendency to plan more than others. They may have no one who is eligible to act as their surrogates so they feel the need to plan ahead for themselves. (Samsi and Manthorpe 2011; Carr and Khodyakov 2007; Piers et al. 2013.) These results were scrutinised with logistic regression analysis, which confirmed that both old age and living alone predicted making end-of-life preparations and 7 Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns… 111

Table 7.2 Characteristics of respondents and preparations for end-of-life Of all Demographic respondents variables % AD % Other preparations % Significance Chi-square -test All respondents 9.5 29.3 N = 294 <63 years 44.8 4.6 18.5 AD χ 2(1) = 6.151, p:.014∗ ≥63 years 55.2 13.1 37.5 OP χ2(1) = 12.635, p:< .001∗∗∗ Female 59 11.1 31 AD χ2(1) = 1.103, p:.321 Male 41 7.4 27.3 OP χ2(1) = 0.472, p:.517 Household 1 person 28.5 19.3 39.8 AD χ2(2) = 13.191, p:.001∗∗ 2 persons 49.5 6.9 28.5 OP χ2(2) = 7.821, p:.020∗ 3–6 persons 22 3.1 18.8 Financially Secure 68 9.5 32.5 AD χ2(1) = 0.015, p:1.000 Insecure 23.8 10 20 OP χ2(1) = 3.914, p:.066 Annual income per household −19,999 28.3 10.1 26.6 AD χ2(2) = 5.181, p:.074 20,000–69,999 56.6 11.4 32.3 OP χ2(2) = 2.217, p:.340 70,000− 15.1 – 21.4 Education Basic 25.8 10.8 32.4 AD χ2(2) = 0.819, p:.691 Vocational/ 36.6 10.5 19 OP χ2(2) = 8.139, p:.018∗ secondary Higher/ 37.6 7.4 36.1 university Self-rated health Good 82.1 7.6 28 AD χ2(1) = 2.280, p:.160 Bad 17.9 14.3 32.7 OP χ2(1) = 0.425, p:.602 Experience of death of a loved one Experience 92.9 9.5 30 AD χ2(1) = 0.000, p:1.000 No experience 7.1 9.5 19 OP χ2(1) = 1.138, p:.332 Child 5.8 (17) 17.6 (3) 47.1 (8) AD χ2(1) = 1.382, p:.386 OP χ2(1) = 2.765, p:.106 Sibling 22.1 (65) 16.9 (11) 36.9 (24) AD χ2(1) = 5.302, p:.030∗ OP χ2(1) = 2.373, p:.164 Spouse 14.3 (42) 19 (8) 42.9 (18) AD χ2(1) = 5.158, p:.041∗ OP χ2(1) = 4.383, p:.044∗ 18.4 (54) 16.7 (9) 29.6 (16) AD χ2(1) = 3.917, p:.069 OP χ2(1) = 0.005, p:1.000 (continued) 112 M. Outila et al.

Table 7.2 (continued) Of all Demographic respondents variables % AD % Other preparations % Significance Chi-square -test Experience in providing care at home Experience 45.2 13.5 30.8 AD χ2(1) = 4.532, p:.045∗ No experience 54.8 6.2 28 OP χ2(1) = 0.291, p:.608 Providing care for a dying person Experience 34.8 15 35 AD χ2(1) = 5.632, p:.021∗ No experience 65.2 6.4 26.2 Professional 11.5 18.2 24.2 OP χ2(1) = 2.436, p:.135 experience Informal 20.2 13.8 39.7 experience Numbers in brackets in the second column refer to the number of persons AD an advance directive, OP other preparations ∗p < .05 ∗∗p < .01 ∗∗∗p < .001 completing AD (Table 7.3). A small percentage of respondents had made ACP and completed AD, which hindered the reliability of the analysis; however, along with cross-tabulation, the results confirmed the importance of age and household size in relation to ACP and AD. Our analysis points in the direction that experiencing the loss of spouse, friend, child or sibling increases the likelihood of making an AD. Also, experience in providing care at home or for a dying person, especially in a professional setting, seems to increase the likelihood of making an AD. It seems that close encounters with death prompt people to plan their own end-of-life. More research is needed to confirm these results, but according to existing research, facing the death of a close person increases the likelihood of making an AD (Carr and Khodyakov 2007; Piers et al. 2013; Kelly et al. 2013). Prior studies have pointed out that people’s health, education (contra Khosla et al. 2016) and socioeconomic status also affect ACP. People with a poorer health status (Ke et al. 2017; Ko et al. 2016; Lovell and Yates 2014), recent hospitalizations (Carr and Khodyakov 2007; Ke et al. 2017), or living in a care institution (Lynn et al. 2016) are more likely to complete ADs. Analysis of our data indicated similar results, but because of the small proportion of people in our study who reported having trouble with their health, the analysis is only tentative. Contrary to other findings, our study did not affirm the impact of female gender (Ke et al. 2017; Lynn et al. 2016), higher income level (Lynn et al. 2016; Shapiro 2015; Khosla et al. 2016) or higher educational level (Kelly et al. 2013; Lynn et al. 2016) on greater engagement with ACP. Higher education seems to have some effect on other arrangements, but not on AD. However, economic security had some effect on making arrangements other than completing an AD. Those who felt financially secure 7 Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns… 113

Table 7.3 Logistic Regression Models of end-of-life preparations Variable OR CI for OR Sig AD Age 2.810 (1.084, 7.282) .033 <63 years ≥63 years Household 3.443 (1.520, 7.800) .003∗∗ 1 person 2–6 persons Other preparations Age 2.510 (1.447, 4.354) .001∗∗ <63 years ≥63 years Household 1.681 (0.962, 2.937) .068 1 person 2–6 persons ∗p < .05 ∗∗p < .01 ∗∗∗p <.001 had more often made end-of-life arrangements than those who felt financially insecure, although the difference was not statistically significant.3 Despite the generally positive attitude towards AD (Table 7.2), advance care planning is still quite rare (see also Ko and Berkman 2012). Prior research has found several reasons for this that seem to be in line with Elias’ (1985) concepts involving the absence and subsequent rejection of death and old age in everyday life. ACP is seen as unpleasant and hostile (Jeong et al. 2011), fearsome or upsetting (Malcomson and Bisbee 2009), a thing that has not even come into one’s mind, a thing for which the time has not yet come (Simon et al. 2015), something that does not need to be done or else is ineffective (Brinkman-Stoppelenburg et al. 2014; Ke et al. 2017). There is research evidence that questions the effectiveness of ADs (Shapiro 2015) but there is also evidence for the positive effects of ACP, even though not actualized as planned (Sudore and Fried 2010). It has been said that ACP leads to a different level of appreciation of one’s personal entity and transcendence (Jeong et al. 2011), while also giving doctors an increased level of knowledge regarding their patients’ wishes. Existing research suggests that people usually need support in order to make an ACP (Simon et al. 2015; Malcomson and Bisbee 2009; Lovell and Yates 2014). It seems that some older people are ready to discuss end-of-life issues and make end-of-life plans but that the opportunities to do so are lacking (Malcomson and Bisbee 2009; Ko et al. 2016; Sharp et al. 2013). In order for the support to be effective, it must consist of information with concerted action, or interactive and informative interventions (Jeong et al. 2011; Ko et al. 2016; Freytag and Rauscher 2017).

3 According to previous studies (e.g. Bullock 2011; Ko and Berkman 2012) religion and cultural or ethnic background also impact ACP. Our survey did not cover those aspects. 114 M. Outila et al.

In our study, the overall proportion of people that had made end-of-life preparations (Table 7.2) seemed small compared to the concerns that people reported (Table 7.1). People do have end-of-life concerns, they feel the need to plan their care, but few preparations are made.

7.3.3 Preferences for Place of End-of Life Care

If I were in my right mind and could move about relatively well, I would absolutely live at home the final stage. But if I had dementia, were paralyzed, all drugged up, or otherwise a so-called “difficult” case, there’s no way I would like to be in home care – the family would probably suffer too. Some of the most central issues in end-of-life care are wishes regarding end-of-life place and carers. More than half of the respondents in our study preferred to spend their end-of-life period at home (Table 7.4). Prior research shows that home is usually the place where people prefer to receive end-of-life care (Choi et al. 2010) and die (Beccaro et al. 2006; Choi et al. 2010). The proportion of people choosing home

Table 7.4 Respondents’ preferences for place at the end-of-life Home % Hospital % Care home % Hospice % Significance % All 57 4 24.2 14.8 Female 53.5 4.4 22.6 19.5 χ2(3) = 6.643 Male 61.2 3.4 26.7 8.6 p:.083 <63 years 73.2 – 17.1 9.8 χ2(3) = 27.417 ≥63 years 44 7.3 30 18.7 p:<.001∗∗∗ Household 1 person 44 6.7 29.3 20 χ2(6) = 19.207 2 persons 53.7 4.4 25 16.9 p:.004∗∗ 3–6 persons 77.8 – 17.5 4.8 Self-reported health Good 62.6 3.3 19.4 14.7 χ2(3) = 9.347 Bad 40.8 6.1 36.7 16.3 p:.024∗ Annual income per household −19,999 48.6 7.1 30 14.3 χ2(6) = 12.051 20–69,999 58.4 2.6 24 14.9 p:.059 70,000− 75.6 2.4 7.3 14.6 Education Basic 41.8 7.5 40.3 10.4 χ2(6) = 18.404 Vocational/secondary 61.4 4 16.8 17.8 p:.005∗∗ Higher/university 63.1 1.9 20.4 14.6 ∗p < 0.05 ∗∗p < 0.01 ∗∗∗p < 0.001 7 Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns… 115 over an institution varies, but commonly it is well over 50% (Hunt et al. 2014a, b; Gott et al. 2004; Hoare et al. 2015; Gomes et al. 2013). In our study, the biggest difference in place preference was between the age groups. Older adults preferred an institution more often than younger adults. Prior research has shown diverse results for the effect of age. Sometimes, older age groups prefer home as the place of death more than younger people (Gomes and Higginson 2008; Sanjo et al. 2007), but sometimes it is the other way around (Foreman et al. 2006). Previous research also points out that the preferred place for end-of-life care might differ from the preferred place for dying. Even though people may not prefer to have care at home, they may prefer to die at home (Aoun and Skett 2013). Another significant variable was household size: people living alone preferred an institution over home more often than people living with others (see also Iecovich et al. 2009). Aoun and Skett’s study (2013) with terminally-ill people who lived alone reveals that home may not always be the preferred location for end-of-life care or death. It may be that people who live alone prefer care institutions because they do not believe that in the absence of informal caregivers it is possible to rely on professional home care. In accordance with Aoun and Skett’s research (2013), health also affected respondents’ preferences: less than half of the respondents who reported ill health chose home for their end-of-life place. Of the healthy respondents, over 60% chose home. Some expressed firmly their desire to stay in an institution if the circumstances were rough: ‘If I get a memory sickness, I, at least, hope to get to a place where there is around-the-clock surveillance. In the final stage of cancer, [I would choose] terminal care in a hospital or in hospice if there is one.’ Cross-tabulation of age, size of household and preferred end-of-life place confirmed that age is a stronger predictor of preference for an institution than household size: among all the household categories, over half of the older adults preferred institutions. Among younger adults, it was the other way around: regardless of the household size, over half preferred home. Educational background and economic situation are, to some extent, also connected with preference: a larger percentage of respondents with a lower annual income and lower education preferred an institution over the home. The difference was significant only for educational background. It is to be noted that 81.9% of the respondents with basic education only were older adults. Self-reported financial security did not affect preferences. In our study, there were no differences between genders, in contrast to, for example, the studies of Choi et al. (2010) and Foreman et al. (2006) in which men preferred end-of-life care and dying at home more often than women did. The issues that respondents raised in their responses dealt with the challenges of living at home, such as loneliness and lack of safety, but also the possibility of making one’s own choices in one’s own home. In spite of the general desire to spend the end-of-life at home, being at home raised mixed thoughts and feelings. Over 80% of the respondents would, to some extent, be happy if their family took care of them. At the same time, over 60% felt that they would be a burden on their families. A theme frequently commented on in the responses was the state of professional care. People were worried that the resources for home care were insufficient and 116 M. Outila et al. that there was a lack of psychosocial support and pain relief. Comments on the care received in hospitals, care homes and hospices were twofold: on one hand, people were very pleased, for example, with the care their family members had received, but on the other hand, they were very critical of the way that people were treated and left alone. It is worth noting that the perception of providing care at home was related to the wish to remain at home until the end of life. A bigger proportion (76.8%) of those who wanted to remain at home had a good picture of home care than those people who wished to spend their end-of-life in a care institution (60.9%) (χ2(1) = 7.952, p:0.005). Researchers have pointed out the inconsistency between the wish to die at home and the actual number of deaths occurring in institutions (Hunt et al. 2014a; Bell et al. 2009). The percentage of people dying in institutional settings is still high in Finland (according to Aaltonen 2015, 85.5% died in institutions in 2008) and in Europe, but there does seem to be a decreasing trend towards choosing a hospital death in Western societies (Houttekier et al. 2011; Gomes et al. 2011; Flory et al. 2004). However, despite the growing trend towards the support of home care, the relatively large proportion of people still preferring formal care in an institutional setting should not be dismissed. People have different preferences for their end-of-life place, thus the heterogeneity of individual wishes should be acknowledged. Existing research stresses that there is a general lack of knowledge regarding people’s preferences. This confirms Elias’ (1985) notion of the exclusion of death and end-of-life issues: end-of-life and dying are difficult topics to discuss. This causes problems in achieving a good quality ACP, for people’s well-being and for the actualization of their preferences (Badrakalimuthu and Barclay 2014; Raz et al. 2011; Hunt et al. 2014a). Therefore, the starting point for a good ACP should be an awareness of the person’s wishes and the way that they feel about care, for example the sharing of care responsibilities between family members.

7.3.4 Preferences for End-of-Life Carers

What scares me most in aging is that I don’t have any children. Who will truly attend to my interests when I am dependent on others’ help? In addition to end-of-life place preferences, respondents were asked about their carer preferences. The carers most preferred were health care professionals; the next most preferred carers were spouse and children (Table 7.5). The responses reflect a strong reliance on professional care and a mindset in which the roles of family members and formal caregivers are clearly separated: ‘I think that I would feel safer in the care of professionals who have familiarized themselves with palliative care, in a home-like environment; loved ones and family members by my side as friends, not as my carers.’ It seems that people expect society to take care of its members: ‘Society cannot expect family or friends to accept taking care of the end-of-life care. They have their own life.’ Even though the major- 7 Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns… 117

Table 7.5 Respondents’ preferences for end-of life carers Health care Demographic professionals variables % Spouse % Daughter % Son % Friend % All 77.6 54.8 38.1 35.4 9.9 respondents Female 78.9 48.5 40.4 39.2 14 Male 75.2 63.6 34.7 29.8 4.1 χ2(1) = 0.567 χ2(1) = 6.521 χ2(1) = 0.957 χ2(1) = 2.759 χ2(1) = 7.768 p:.480 p:.012∗ p:.392 p:.107 p:.005∗∗ <63 years 80.8 63.8 39.2 36.9 16.2 ≥63 years 75.6 48.1 36.9 33.8 4.4 χ2(1) = 1.104 χ2(1) = 7.167 χ2(1) = 0.169 χ2(1) = 0.317 χ2(1) = 11.408 p:.321 p:.009∗∗ p:.716 p:.621 p:.001∗∗ Household 1 person 72.3 21.7 36.1 36.1 10.8 2 persons 78.5 66 34 27.8 6.3 3–6 persons 84.4 70.3 50 51.6 17.2 χ2(2) = 3.113 χ2(2) = 50.093 χ2(2) = 4.988 χ2(2) = 10.990 χ2(2) = 6.007 p:.210 p:<.001∗∗∗ p:.082 p:.004∗∗ p:.054 Annual income per household −19,999 20–69,999 68.4 38 32.9 26.6 10.1 70,000− 80.4 62 38.6 38 10.1 85.7 71.4 38.1 35.7 11.9 χ2(2) = 6.208 χ2(2) = 16.812 χ2(2) = 0.763 χ2(2) = 3.066 χ2(2) = 0.121 p:.044∗ p:<.001∗∗∗ p:.699 p:.208 p:.962 ∗p < 0.05 ∗∗p < 0.01 ∗∗∗p < 0.001 ity of the respondents preferred to have health care professionals as their carers, there was also distrust towards them. For example one of the respondents wrote: ‘The alternative [to staying at home] is the current lying drugged up and abandoned in a hospital ward or lying in your own waste in a commercial elderly home.’ Despite the preference for professional care, over half also preferred a spouse and about one-third a child as a caregiver. Men, more often than women, wished to receive care from their spouse. This was an exception to our otherwise fairly gender neutral results. In addition to a bigger proportion of males, younger adults, people living in bigger households and people with a higher income wished for their spouse to be their caregiver. The preferences and comments of respondents can be interpreted as part of the institutionalization and medicalization of end-of-life care: dying in hospitals and care homes in the care of health care professionals is familiar. This is accompanied by individualization and an emphasis on individuals’ independence: receiving care from family members is not an obvious preference (Elias 1985). 118 M. Outila et al.

7.4 Discussion

Kastenbaum (1995) (cited in Cicirelli 2006, p.39) refers to the death system of each culture, meaning the people, places, objects, symbols and times that are related to death and dying. In the light of this study, the northern Finnish death system is strongly linked to health care professionals and formal institutions. There is a strong reliance on formal care, and death is hidden away in institutions such as hospitals and care homes. On the other hand, death-related issues are connected to the closest family members. People worry about and to some extent hope for care from their family members, but there is lack of discussion in families involving planning for end-of-life care and dying. Preparing for the end-of-life is viewed as an appropriate thing in itself, but in reality few make tangible preparations, despite their concerns related to death and end-of-life care. These results reflect Elias’ (1985) notion of ageing and dying being pushed behind the social scene and away from everyday life, with an absence of readily used expressions and practices that would help people deal with end-of-life issues. Changes in the political governance of end-of-life care are about to introduce change into the system for dealing with death in Finland. What kind of cultural change will they bring? Will they take into account the fears and concerns that people have towards dying and end-of-life care? Will they support people in vulnerable situations who have different concerns, poor health or financial struggles, all of which can make facing death harder, and who feel more need for support than the average person? The implications of our study are twofold for care policy: First, the concerns that people have in relation to end-of-life suggest that there is a need for support in completing ACPs. People feel the need to plan but the lack of readily accessible practices to complete an ACP leads to the situation where for many people it is left undone. The suggestion that there should be increased ACP planning is supported by existing research which provides evidence for its usefulness. ACP planning increases the probability of making people’s end-of-life preferences known and respected (although this is not always possible), and the ACP has the potential to increase the well-being of people who engage with it (Hunt et al. 2014a). From the perspective of social and health care development, it should be noted that the support people have in their end-of-life planning comes, most frequently, from lawyers and financial planners (Simon et al. 2015; Malcomson and Bisbee 2009). However, people have other concerns in addition to financial ones, and for these it may be that social and health care professionals are the natural source of support. The development of Western societies has led to a situation where people face death relatively alone, and in places where they are unable to avoid the experience (Elias 1985). The need for support may continue to grow if the direction of social development continues as it is. In Finland, there are signs of change: for example, there is a growing interest in integrating ACP into older adults’ care services. 7 Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns… 119

Our second suggestion relates to the fairly large consensus that home is the best place to live, to receive care and to die (see e.g. Sepperd et al. 2011; Jeppson- Grassman and Whitaker 2007). Our analysis suggests that there is a need to investigate more closely the risks of pushing this idea further. Even though many people want to spend their end-of-life at home, according to our study, this wish is not entirely evident. In some life situations, people clearly prefer institutional settings for their end-of-life care, while those people who do wish to stay at home as long as possible still have a strong need for and reliance on formal care. These results suggest that people’s preferences may differ significantly from political care guidelines that are increasingly stressing informal care (Heikkinen 2017). The risks of isolation, loneliness, insecurity and excessive pressure on families must be noted. This study has several limitations. Because the data were collected from two rather small cities in northern Finland, the results represent only the opinions of residents in this restricted area. The response rate was only 29%, which might reflect the difficulty of the subject at hand: The topic of end-of-life and death might have seemed distant, overwhelming or too sensitive to the respondents. Due to the low number of respondents, a more sophisticated statistical analysis was not possible. However, the results have ramifications for political decision-making and offer an interesting perspective on the thoughts and preferences of people in northern Finland.

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Shahnaj Begum

Abstract The environment plays a vital role in ensuring quality of life for older people in the rural north. In this chapter, I examine how older people identify the characteristics of age-friendly environments in rural settings. “Age-friendly environment” can be understood in different ways: as a natural, human-built or social environment. Analysing interviews conducted in the Enontekiö region of northern Finland, I ascertain older people’s perceptions and understanding of what constitutes an age-friendly environment. In addition, I investigate the changes and challenges which older persons encounter in their daily lives that affect the potential of their environment to be age-friendly. The analysis reveals that the key elements of such an environment are good forest, land, fresh water, good connections with family, neighbours, and the community, and an accommodating built environment.

Keywords Finnish Lapland · Wellbeing · Age-friendly environment · Rural setting · Northern perspective · Older people

8.1 Introduction

Because of increased life expectancies and a growing population of older people, the policy and practices relating to older people’s needs have taken on heightened importance (Chan et al. 2016; Lui et al. 2009, p.116). The concept of an age-friendly environment (AFE) has achieved widespread and growing acceptance in the discourse of ageing (Scharlach and Lehning 2016; Lui et al. 2009). The current thinking is that creating a friendly environment in a community can help older persons lead healthy and active lives; such an environment optimizes opportunities for health, active participation and security, which in turn contribute to quality of life and wellbeing. It is important for older people to live at home in their own community safely,

S. Begum (*) Unit for Gender Studies, Faculty of Education, University of Lapland, Rovaniemi, Finland e-mail: [email protected]

© Springer Nature Switzerland AG 2019 123 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_8 124 S. Begum independently and comfortably as well as to remain physically and socially active with as few constraints as possible due to age, income or functionality (Janine et al. 2012; Chan et al. 2016; O’Hehir 2014). It is anticipated that age-friendly environments will play an important role in supporting longer and healthier independent lives for older people in different settings, including rural areas (European Commission 2009; OECD 2014; Leis and Gijsbers 2011). It is essential for the wellbeing of older persons in rural areas that they have access to a community environment that ensures dignity and a healthy life. The population at large is ageing and the environment has a considerable impact on older persons in determining the extent to which they are included in society. Accordingly, older people require living conditions which accommodate their needs and preferences (WHO 2016, p. 2–3). The expectation is that in an age-friendly environment in rural communities all services and policies, as well as the physical and social environment as a whole, should be structured in such a way that older people can live safely, securely and actively and enjoy life in good health (WHO 2007, p.1; Eales et al., p. 109). My research undertakes to identify what older informants identify as important indicators of an age-friendly environment and what problems they face in finding such environments in the Finnish north. For this purpose, I have conducted interviews of older men and women in the villages of Hetta and Peltovuoma in the municipality of Enontekiö. My analysis of the interviews reveals how older women and men describe and experience the changes and challenges in their daily lives that affect the age-friendliness of their environment. Although there is no universally accepted definition or set of indicators for an age-friendly environment (Lui et al. 2009, pp. 116–121), different features and requirements have been identified. In the next section, I describe those components which might be considered important in creating an AFE in the Finnish north.

8.2 Age-Friendly Environments in Rural Settings

The last few decades have seen an ongoing discussion on the importance of an environment that is supportive of ageing (Phillips et al. 2005, pp. 147–163; Wahl et al. 2003, pp. 195–222). On the initiative of the United Nations, the World Health Organization (WHO) established the concept of an AFE, which is described in terms of eight important indicators (Sidorenko and Walker 2004, pp. 147–165). In the year 2006, the WHO developed the Global Age-Friendly Cities project, which has since been used as a benchmark to plan AFEs in several countries. The eight indicators for an AFE are outdoor spaces and buildings; transportation; housing; social participation; respect and social inclusion; civic participation and employment; communication and information; and community support and health services (WHO 2007, p. 7; Plouffe and Kalache 2010). More than 35 countries are trying to collect information for new policies and programmes for AFEs in accordance with these features. The countries have also undertaken to modify and 8 Exploring Age-Friendly Environments in Rural Settings: Case Study from Finnish… 125 restructure existing policies to promote such environments (Lai et al. 2016). Policy makers today in several countries emphasize the diverse features of such environments by citing the diverse needs of older populations (Gilroy 2008, pp. 145–163; Lui et al. 2009, p.116; Chan et al. 2016). In Finland, the Ministry of Social Affairs and Health (MSAH) is responsible for providing services for older people. The ministry monitors standards through the National Supervisory Authority for Welfare and Health and the regional state administrative agencies. The needs of older people have been considered in the care sector (Seong 2016; Kutsar and Kuronen 2015, p.79). Presently, policy makers consider private-sector services to be the standard solution for meeting older people’s demand for services (Puthenparambil and Kröger 2016; Karsio and Anttonen 2013). Since my focus is on AFEs in rural Finnish Lapland, it is important and essential to identify important indicators for rural communities. There is no specific definition of “rural area”. It is a concept that continues to change and develop (Chapman and Peace 2008, p.22; Hughes 1997). There are, however, some criteria that can be cited, such as distance from an urban centre and size of population (OECD 2017; Balestrieri 2016). A common feature of rural areas in the north is a declining population (Aarsæther and Jørgen 2001, pp. 15–17; Begum 2016; AHDR-II 2014). Young people have moved to places “where national policies have created universities, administrative staffs, specialized medical services and other advanced service and job opportunities” (Aarsæther and Jørgen 2001, p. 16). Today urbanization has reshaped rural areas into places where there are not only fewer younger people but also a higher proportion of older persons. Thus, urbanization has increasingly impacted rural areas, and Finnish Lapland is no exception. There is a general belief that the northern regions of the Nordic countries are highly developed and that their citizens enjoy a corresponding quality of life. Yet, several field studies in rural settings in Finland have documented a reduction in public services in the north, a trend matched by the introduction of a range of private services (Begum 2016). Finland features a diverse volunteer sector comprising associations, religious organizations, small-scale co-operatives and foundations (yhdistykset, järjestöt, osuuskunnat, säätiöt) (Harju 2006) whose purpose is to benefit and enrich society, often without profit as a motive and with little or no governmental intervention. Similar observations have been made in rural communities in Canada and New Zealand (Joseph and Cloutier-Fisher 2005, pp. 133–146). Other similarities that have been found between Canada and the Nordic countries include increasing numbers of young people moving to urban areas and few return- ing to rural areas after retirement (Naskali et al. 2016; Chapman and Peace 2008, p. 21; Rothwell et al. 2002). Similar studies on elder-friendly community development have been carried out in New York (AARP 2005; Feldman and Oberlink 2003) and Calgary (Austin et al. 2001). Aging well is connected to how individuals manage their lives and their environment physically, socially and psychologically (Lawton and Nahemow 1973). As part of this ecological view, Lawton and Nahemow cite an interactive relationship between people and their environment as the main factor contributing to aging well. They define what they call the person-environment 126 S. Begum

(P-E) fit to describe the balance between a person’s functional competence and his or her surrounding environment (Lawton and Nahemow 1973). Lawton and Nahemow’s ecological perspective has contributed significantly to designing several age-friendly service plans, ageing services and liveable communities (Alley et al. 2007, pp.1–18; Keller and Kalache 1997, pp. 287–298; Smith 2009, p.11). For an older person, being able to move independently in a barrier-free environment gives great independence and satisfaction, which enhances his or her sense of self- worth and overall wellbeing. Several studies have shown that the majority of older people wish to stay in their home environment or own homes as long they are able (AARP 2010; Judd et al. 2010). Menec et al. (2011) have pointed out that older people’s environment may render them vulnerable because they are often physically frail. Common concerns are limitations on mobility that hamper activities such as shopping, going to the health centre and visiting neighbours and friends. The design of buildings is also an important consideration, as this may restrict wheelchair access. Recently, in academic research and in planning and policy relating to age-friendly communities, an emphasis has been placed on creating an environment where older people can thrive (Eales et al. 2008, p. 109). In its International Plan of Action on Ageing, the United Nations (UN 2003) stated that it is important to have communities where older people live “in locations that are familiar to them, where their involvement in the community may be longstanding and where they will have the opportunity to lead a rich, normal and secure life” (UN 2003, p.12; Eales et al. 2008, p. 109). Lawton (Lawton 1977, p. 277) has noted that older persons need to live in an environment where resources are available within an accessible distance. It is only recently that one has seen research on age-friendliness in different settings (Menec et al. 2015, 203–223). In previous research, it has been claimed that environmental settings reveal inequality among older people in different geographical locations. The literature has emphasized that the physical environment, that is, the relation between the built environment and physical activity among older people living in it, is a key factor in their wellbeing (Lui et al. 2009, p.116; Cunningham and Michael 2004, pp. 435–443; Phillipson 2004, pp.963–972). Studies have also concluded that nature in a given region or community has great influence on the overall quality of life for older persons (Lui et al. 2009, p.116; Abbott and Sapsford 2005, pp. 29–46; Scharf et al. 2007, pp. 153–173: Phillipson 2007, pp. 321–342). The physical and social environments play an important role in supporting older people to stay healthy and independent in their community as long as possible. Favourable environments can be designed by implementing multiprofessional approaches that inform collaborative community planning and development (O’Hehir 2014, p.11; Clark and Glicksman 2012; Keyes et al. 2014; Lui et al. 2009). I am inspired by, and agree with, the Age-Friendly Rural/Remote Communities Initiative (AFRRCI 2006), which suggests that in an age-friendly environment or community in a rural setting the policies, services and facilities should be supportive of older people so that they can live actively in their community. My understanding of an AFE is that it should support people to live with full satisfaction in their own home and community securely, independently, and happily regardless of age, 8 Exploring Age-Friendly Environments in Rural Settings: Case Study from Finnish… 127 income and level of physical or cognitive functionality. An AFE should promote older people’s health and wellbeing and should ensure active participation in the community. For purposes of the present study, I would summarize the important components of AFEs in terms of three domains: (i) the natural environment, ii) the built environment and iii) the social environment. These distinctions are based on research conducted by Eales et al. (2008). The natural environment includes components such as favourable climatic conditions and the availability of fresh air, clean water and adequate waste removal systems. These are important in maintaining a healthy life (Eales et al. 2008, p. 110; Short 2006, pp. 18–21; Bubolz and Sontag 1993, pp. 419–448; Plouffe and Kalache 2010, p.734). As pointed out by Eales et al., a community can be regarded as age- friendly when older people’s surroundings “are clean, quiet and naturally beautiful” (Eales et al. 2008, p. 113). For older people in Lapland, nature has great significance throughout their lives (Begum 2016). The built environment “refers to the alterations and transformations people make to the natural physical-biological environment for survival, sustenance and the attainment of other ends” (Eales et al. 2008, p. 111). Accordingly, it includes local infrastructure such as housing, roads, shopping facilities, health services and accessible public and private transportations (Keating and Phillips 2008, p. 4). The social environment encompasses availability of sufficient opportunities to maintain relationships with family members, friends and neighbours, to take advantage of opportunities to engage in cultural, educational and voluntary activities locally and to avail oneself of programmes and information to promote health, social and spiritual activities (Eales et al. 2008, p. 111; Bubolz and Sontag 1993, pp. 422–448).

8.3 Research Processes

8.3.1 Participants and Setting

The qualitative interviews for the present study were conducted in 2017 in the municipality of Enontekiö, Finnish Lapland. In what follows, I first describe the geographical context and physical environment and go on to present the data collection processes. The municipality of Enontekiö is the fourth largest municipality in area in Finland (Statistics Finland 2016). Its location and relative size are depicted on the map below (Fig. 8.1): The region is sparsely populated and its population has declined since the 1980s. According to Statistics Finland, the average population in the 1980s was 2286; in the 1990s, 2472; in the 2000s, 2145; and in the 2010s, 1876. In 2016, the population was 1872 (Statistics Finland 2017). From 2008 to 2017 the proportion of the population above 65 years of age increased from 19 per cent to 25 per cent (Statistics Finland, 8 & 2017). Hetta, the principal village in Enontekiö, is the administrative 128 S. Begum

Fig. 8.1 Location of Enontekiö, Finland

centre of the municipality. The village is a popular tourist destination and generally there are flights from Helsinki to the local airport (9 kilometres from Hetta) in the spring months. Otherwise, the nearest Finnish airport is in Kittilä. The village of Peltovuoma is located in the eastern part of the municipality. It is some 30 kilometres to the east of Hetta. The village is surrounded by extensive wetlands. People from Peltovuoma go to Hetta to work, for health check-ups, shopping, cultural events and other business. There is an older people’s care home called Luppokoti in Hetta, which has 20 residents in single rooms. The facility offers residents assistance in washing, dressing, eating and taking medication as their health may require. The home also arranges a variety of weekly activities, such as a sauna and a visit from a local minister, who speaks about God, life and similar topics (Fig. 8.2). I have interviewed people from two different settings: a care home (Luppokoti) in the village of Hetta and older people living in their own homes in Peltovuoma. In the case of Peltovuoma, I obtained my first contact through a friend in Rovaniemi. Thereafter, using the snowball technique (Kumar 1996), I contacted other informants from the same village. I sent a sample of the research questions via e-mail to 8 Exploring Age-Friendly Environments in Rural Settings: Case Study from Finnish… 129

Fig. 8.2 Luppokoti – an older people’s care home in Hetta. (Source: Shahnaj Begum) residents of the care home and to individuals from Peltovuoma. I received permission for the study by e-mail from the head of the care home before starting the interviews and the informants gave their consent voluntarily. In planning the interviews, I gave particular consideration to two important features suggested by Dörnyei (2007): “(a) it flows naturally, and (b) it is rich in detail” (Dörnyei 2007, p. 140). In my interviews, I used both semi-structured and open-ended questions. The atmosphere during the interviews was very welcoming and my being a foreigner did not introduce any complications. Quite the contrary, I received special care and attention. At both sites (the care home and informants’ homes) informants talked freely with me, which is very important (Alshenqeeti 2014, p.41). They served cake and coffee. Although Finnish is not my native language, I conducted the interviews in Finnish. Informants talked slowly so that I could understand them. I first explained the aim of the interviews and the social benefits that the research could bring, such as knowledge on AFEs from the viewpoint of older people and dissemination of this knowledge to policy makers and other stakeholders. I interviewed a total of 19 people between the ages of 61 and 85 years. Thirteen of my informants live in the care home, where they have moved from the villages of Karesuvanto (64 km), Nunnanen (42 km) and Peltovuoma (30 km). I interviewed four people from Peltovuoma who are still living in the village. In addition, I interviewed the director of Luppokoti and a relative of one of the informants, a woman who had taken care of her mother for 10 years. Of the 19 informants, 15 were women and 4 were men, with the female interviewees including the director of the care home and the older woman’s daughter mentioned above. All the interviewees were physically and mentally competent to express their opinion. The consent processes and issues of anonymity and confidentiality were fully clarified from the outset. Each participant was given opportunities to ask questions before replying. The duration of the interviews varied 130 S. Begum from 30 to 90 min. I found that the discussions with men were shortest and they tended to give brief replies. All the interviews and discussions were tape recorded and transcribed verbatim. To protect the confidentiality of the informants, I do not use their real names. I kept a diary in which I made notes summarizing important points. To understand what constitutes an AFE, I asked all the participants questions such as the following: What things are important in the community if you want to have a good life? What kinds of changes and challenges have you experienced? Why have you chosen to live in the care home? What are your expectations with regard to an age-friendly environment?

8.3.2 Data Analysis

I have used qualitative analysis to address my research objectives. In qualitative research, the researcher decides on the research framework based on his or her own understanding of relevant theory (Kyngäs and Vanhanen 1999; Tuomi and Sarajärvi 2004). The themes of the analysis have emerged from the interviews and the ideas developed by Eales et al. (2008) concerning the components of an AFE. The transcripts of the interviews were read several times before and during the writing process to ensure that the questions I asked covered all the themes relevant to AFEs, that is, the natural, human-built and social environments, and that the conclusions were based on what the informants had said. I proceeded to distinguish the changes and challenges that informants mentioned and correlated these with the components of AFEs. Lastly, I noted some suggestions and expectations which informants had regarding the development of AFEs in their own setting. Analysing the individual interviews with a focus on age-friendly features of the environment enabled me to determine the informants’ views on the salient characteristics of a community for older persons.

8.4 Nature, Living at Home and Neighbours: What Is a Good Place for Growing Old?

8.4.1 Natural Environment

The climate, nature, water and forest are parts of the natural environment closely connected to older people’s life style in the north. The informants talked about these elements, which are important for their communities and relevant to their wellbeing. All 19 informants stated that being able to live near nature and drink fresh water are the most important features of their environment, things that are still intact in their community. 8 Exploring Age-Friendly Environments in Rural Settings: Case Study from Finnish… 131

One informant, Hanna, who is 90 years old and living in the care home, stated: “Nature reminds us of who we are and it gives us freedom”. A similar view was expressed by the informant Mikko, 75 and also living in the care home. He pointed out that living near forest is the daily inspiration in his everyday life, noting, “it is part of our way of life”. It allows older people to not only live in a natural environment but also collect food from the forest. The residents of the home find inspiration in and enjoy such surroundings. For example, all the women informants from Peltovuoma mentioned that they collect berries and mushrooms during the summer and save them for the whole year. In this regard, Ella said: “Nature plays a very important role in our life. I am still taking part in berry picking with members of my family and neighbours. It reminds me of my childhood stories. It gives me unlimited joy”. Living near nature creates a strong bond with the community at large, in particular in the case of the indigenous Sámi people. Inga, an 82-year-old Sámi, stated: I was raised in a farming family. From childhood I took part in reindeer herding, which used to be our family’s livelihood. The land and forest have always been strong elements: I was fishing on the lake and berry picking in the forests. In fact, the natural environment represents an important backdrop to our lives. It is intertwined with my cultural identity. Picking berries and mushrooms in the forest, hunting, farming, reindeer herding, fishing and skiing are important activities, all of which are connected to the natural environment. Therefore, the natural environment is crucial in providing activities for older people who are living in the north. For example, in Luppokoti the health of some informants is not particularly good or stable. It is not always possible for them to go out into nature and their own forest. Nowadays, with the lack of human and financial resources, visiting these places is mostly an unrealistic desire on the residents’ part. With the help of the responsible authorities and relatives it could be possible to take these people out into the nearby nature so that getting out is more than wishful thinking. Nature is also associated with social activity for older people. We may distinguish three components of an AFE on the theoretical level (natural, built and social environments) but in real life these are interconnected. All 19 informants mentioned that fresh water, different kinds of wild berries and fishing are still part of their daily lives. They also mentioned that changes in the climatic conditions, often unpredictable, caused frustration. In addition, they were afraid of certain developments in nearby areas that have the potential to pollute their unspoiled environment. The natural environment was found to be a resource for all older men and women as it is connected directly or indirectly to their social identity.

8.4.2 Built Environment

In a rural area, transportation plays a vital role in enabling older people to live in a community. All 13 older informants from the care home highlighted the importance of the availability of public transportation; they found it hard to live in outlying villages without transportation providing access to services in Hetta. They noted that, 132 S. Begum on the one hand, they were not able to drive because of their reduced physical ability and, on the other, they had become vulnerable and hence felt insecure because of the lack of local transport. This was one of the main reasons why many of the informants had moved into the care home. Commenting on public transportation, Eva, who is 85 and still lives in her own home in Peltovuoma, stated: The population has declined; many houses are empty; the public bus does not run anymore. We had a small shop, post office and small medicine store, none of which are available any longer. The medicine store had basic medicines which we could buy. Citing a somewhat different trend, she mentioned that health services have improved since 1972. Nurses now visit their village every Tuesday and go to three or four neighbouring villages as well. According to the informants from Peltovuoma, people seem to be happy that they have facilities for a minimum health check-up if they need one. Older informants appreciated living close to services and facilities, such as a supermarket, hair salon, post office and pharmacy. These are the places where they could meet their friends and neighbours often and could choose themselves what to buy. Lawton and Nahemow’s P-E fit is reflected here in the informants’ expectations and desires. Living an active and independent life requires having all necessary services within an accessible distance. Virpi, a 61-year-old woman living in Peltovuoma who had been taking care of her mother, who passed away at age 89 in 2017, made the following observations while explaining her mother’s situation: We had a small shop ‘Reino Keskitalo’, which closed in 2009. Neighbours are very important to us. When we go shopping in Hetta, we ask each other for shopping lists so that we can buy things for each other when needed. The human-built environment can be considered age-friendly when older people can readily obtain goods and services (World Health Organization 2007; Plouffe and Kalache 2011). In relation to the built environment, informants noted how important the “small shop”, now closed, had been in their daily life. It was a great opportunity to go shopping in the neighbourhood and meet other people. This case, in which the built environment lost part of its age-friendliness, exemplifies the changes and challenges that may impact efforts to create AFEs. All informants pointed to the importance of the human-built and social environments coming together, that is, to their being interconnected. Indeed, it is not possible to distinguish them. Housing quality is a key aspect of the built environment. All informants said that houses had been modified to meet the needs of older people. One example was a good-looking house in Peltovuoma owned by a couple who worked in southern Finland and then moved there after retirement. They are still very active and happy with their natural environment and involved in different activities. They are still physically strong enough to live in their own home and engage in all winter activities Not all older people have enough money to repair their houses but some have received support from the municipality for repairs and improvements. The houses are in good repair and have good heating systems (Sirviö and Illikainen 2015). In Nordic rural communities, older people enjoy living in homes 8 Exploring Age-Friendly Environments in Rural Settings: Case Study from Finnish… 133 of their own and would like to live at home as long as possible (Bäck and Calltorp 2015; Moberg et al. 2016). In remarking on the importance of public transportation and the presence of neighbours, Eva from Peltovuoma, made the following comment: Even though public bus service has not been available since 2009, a small bus that seats eight comes once a week to take us to Hetta to go shopping. Our village is almost empty but a few families with children have increased recently, which brings some hope that the village will not die out soon. Earlier, neighbours came to visit very often. In this regard, Virpi cited a case of unequal treatment in receiving transportation services. She mentioned that her mother had not received taxi services to go to the health centre, while one other older person from next door had. When I asked why, Virpi mentioned that the responsible authority could not provide a satisfactory reason.

8.4.3 Social Environment

It is very important for older people to maintain links with family, friends, neighbours and the community at large. Connections to family, neighbours and the community foster intergenerational interaction, which all informants valued highly. When asked about cultural events and social activities, they all highlighted that religious events are arranged at the church in Hetta and other events also take place there. Most of the time it is difficult to get out of the village to attend those activities. In this regard, Maria, 76, now in the care home, said: I was happy to go to the church and take part in the activities arranged by the community. But nowadays such activities are arranged very rarely. I was also happy to spend time with my family on different important occasions. Eva also made a comment in this vein: I was and am still involved in women’s activities, the ompeluseura (lit. “sewing circle”), which is no longer a regular event. Nowadays seven to eight women participate in these activities. The participants are mostly 50 to 70 years old. I am the oldest one at 85. Earlier, we met once every two weeks but now the number of people involved has declined. This activity, called a “rural women’s sewing evening”, is now an 80-year-old tradition. I have been involved for 62 years. Earlier, participants also came from neighbouring villages. Venla, 72, from the care home, also highlighted the importance of social participation in old age: Through different activities, we (older people) can practice our skills and enjoy respect and self-esteem. It also helps to build and maintain relationships with family and community. It is important to for older people to have opportunities to participate in social, cultural, and spiritual activities in the community as well as within the family. Even though people in the Finnish north have vast natural areas – essentially an unspoiled environment - those older persons who are unable to participate in activities outside 134 S. Begum of their homes watching television remains essentially the only source of entertain- ment. In relation to respect and social inclusion, all male and female informants mentioned that they would like to live a meaningful life. They felt that the younger generation should be more patient with and show more respect for them so that conflicting attitudes do not arise and they might better understand each other. In this regard, all informants from Peltovuoma suggested that there should be opportunities for intergenerational activities so that older people would be attached to other generations and not feel isolated. Social support is important for older people’s wellbeing. Through different kind of social funding, older people may obtain different forms of support according to their needs. Virpi, one of the informants from Peltovuoma, made the following observation: A decade ago we received some services from the ‘KOTO’ project, which were very good. The services included house cleaning, as well as someone to talk with, help us in the sauna, heat food and make coffee. Virpi and Ella also mentioned that they had to pay only five or six euros for an hour of service and the “KOTO” project’s activities were very good for their wellbeing. Mentioning the importance of community performance, Ella pointed out the following: [If there is a] lack of activities and lack of initiatives, people often become upset and passive. Many families have left the village because of the lack of jobs and facilities. To keep active, we still try to support each other. For example, if somebody’s lights are not on at home at the regular time, we try to call him or her to make sure everything is ok, or we go to check. We have still strong social bonds that motivate us to continue to live in this community. In a small village, it is important to say “hello” to one’s neighbours at the post box or small supermarket. Neighbours are very important in the rural north, because they know each other well. A rural community can be age-friendly when it enables one to maintain a network of friends and family members. A survey assessing the age-friendliness of different municipalities highlighted that if a community is to be age-friendly it is very important for older people to have regular contact with family and friends (Plouffe et al. 2016, p. 22). Menec et al. have voiced the criticism that economic and social inequality lead to social exclusion; these forms of inequality were cited by informants as threats that should be taken into account in considering the social environment (Menec et al. 2011).

8.4.4 Changes and Challenges to AFEs: Some Reflections on the Informants’ Views

In answering my questions about their expectations regarding AFEs and the challenges of creating such environments, all female informants highlighted the importance of active involvement in different activities, including social, cultural and 8 Exploring Age-Friendly Environments in Rural Settings: Case Study from Finnish… 135 spiritual events in the community. They also emphasized that maintaining close relationships with their families contributed greatly to their wellbeing and health. These kinds of opportunities allow older people to maintain their functional capacity and self-esteem and to sustain and establish supportive and caring relationships. I found that male informants tended to give very brief responses. I do not know why men did not speak that much. Perhaps they did not know what to say because they were more accustomed to going into the forest, to going hunting for instance. All 19 informants noted changes in the physical and social environment. They all mentioned out-migration of young persons and women, a trend which makes them feel insecure. Informants highlighted that a lack of jobs and a desire for higher education make people leave their villages. Most of them do not come back. Because the population is small, the municipality has reduced many services, such as local transportation, postal services and small medicine stores. The cutbacks negatively affect people’s physical and mental wellbeing. Generally, in remote regions people are less involved in the cash economy because of the limited scope of formal jobs (Copus et al. 2017). Rural populations have traditionally made their living in subsistence livelihoods. As a result, the labour market in regional settings is not well equipped with opportunities for formal employment, which would provide an old-age pension. In general, the social security network in the Nordic Arctic provides social support for older people, providing some measure of protection even in rural settings. However, some informants expressed pessimistic views concerning the maintenance of an age-friendly environment. They cited the inadequacy of economic resources and the support provided to them. Income from pensions or other sources of support (i.e., their family) does not necessarily allow them to maintain a sufficient quality of life. It thus appears that older people in the region today, especially those in remote communities and those who have been engaged in non-formal employment, are not likely to have a sufficient level of income. Female informants mentioned that pensions are so small that it is difficult or impossible to live with dignity in one’s own home. Not only informants living at home but also those in the care home made similar comments. For example, Hannele said: The pensions are not big enough to live a normal life in one’s own home. However, people who held regular jobs receive better pensions. A small pension sometimes limits involvement in social activities and opportunities to meet or fulfil one’s needs, especially for older persons who live alone in their own home. Women were mostly taking care of their children, running the household and helping their partners. In old age they then receive the minimum pension, which is not enough to fulfil most of their wishes and expectations. Most of the older informants have received and still receive financial support from their children. Consequently, the size of one’s pension has great influence on how age-friendly an environment is. By contrast, informants from the care home noted that they all receive the same services regardless of the size of their pension. This is possible because of how the system of welfare services is structured in Finland. 136 S. Begum

The above analysis indicates that supportive physical, social and natural environments are important in the wellbeing of older in the Finnish north. The Finnish Ministry of Social Welfare and Health (Sosiaali- ja terveysministeriö, Helsinki 2017) published a report containing recommendations that the needs of older people should be taken into account in promoting the renovation of the housing stock and in planning and maintaining residential environments. Living environments should be developed to be made safer and more accessible. Overall, an age-friendly community should provide an inclusive and accessible physical and social environment fostering health, social participation and security.

8.5 Conclusion and Suggestions

The findings of this chapter provide some insights into the experience of older people from the Finnish north in relation to the features of an age-friendly environment. The salient characteristics identified through the research are good forest, a supportive neighbourhood and good connections to family, neighbours and the community at large. The different domains in an AFE are in practice connected to each other. The discussions with informants cited above indicate that nature, the availability of local transportation and health services, as well as community support to keep older people active and make them feel secure, are the most important factors in creating an age-friendly environment. The informants also noted that certain elements of the built environment and the social environment are very important in building an age-friendly environment. The former include readily available public transportation as well as affordable and accessible health care and social services, the latter facilities to meet neighbours, friends and family and to take part in different social activities and cultural events. As noted, informants pointed out that climate change, a declining population - neighbours moving out of the village and out-migration of young people - and a limited pension are among the obstacles to sustaining an AFE. Older people feel insecure in many cases because they have few neighbours. Older people themselves feel active and valuable, which needs to be recognized by the municipality and responsible authorities. With the population declining, different kinds of social activities are waning. Services and facilities should be available as close as possible to where older people live. They feel com- fortable in their own environment, but may not feel safe in that environment with too few people around them. Hence, there is a need for extensive measures to keep the younger generations in the community and to deliver a range of older support services there as well. The director of Luppokoti and the informants indicate there are far too few places in the care home compared to the demand. There should be more places in the care home for older people whose health is frail. Replies given my informants indicate that here is a scarcity of financial and human resources in rural settings. They also suggest that authorities could take more initiative in responding to ageing-related needs and preferences that will reduce social inequalities in the environments where older people live. 8 Exploring Age-Friendly Environments in Rural Settings: Case Study from Finnish… 137

Acknowledgement I acknowledge and thank the participants from Luppokoti and participants from Peltovuoma village who shared their experiences. I thank Satu Marja, the director of Luppokoti and Sirpa Helena Seppälä from Peltovuoma village for their cooperations.

References

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Marit Aure

Abstract Increased geographical mobility, improved medical treatment, and prolonged life expectancy have changed the way of life for older persons and their next of kin. This chapter discusses intergenerational care, mainly from the next of kin’s point of view, when an older family member and the next of kin live far from each other. The study is based on my—the author’s—autoethnographic account of the experience after my father suffered a stroke a few years ago. Inspired by Ellis et al. (2011, p. 392), who stated that autoethnography may ‘analyse personal experience in order to understand cultural experience’, I use my father’s and my own experiences to analyse how geographical distance and serious illness impact intergenerational care and kinship. While I argue that intergenerational care across geographical distance creates certain vulnerabilities, this specific situation also enables and enacts kinship relations. The study focused on practical support, emotional relations, and communication technologies, and their limitations when illness hits and life changes. It also adds to our understanding of aging, illness, and care across vast geographical distances. I claim that the autoethnographic approach accommodates the subjectivity, emotions and first-hand experiences between the older person and the next of kin. This geography of intergenerational care provides new knowledge about an experience, influencing the later years, for an increasing number of individuals and service-providing municipalities, especially in regions marked by outmigration and high youth mobility.

Keywords Autoethnography · Stroke · Geographical distance · Intergenerational care · Next of kin · Mobility · Men · Lonely · Digital divide · Face-to- face · Health

Vignette A week before our three-generation family group should leave for the long-planned pilgrimage hike in Spain, I received the alarming phone call. My father, the ‘caring

M. Aure (*) Department of Social Sciences, UiT The Arctic University of Norway, Tromsø, Norway e-mail: [email protected]

© Springer Nature Switzerland AG 2019 141 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_9 142 M. Aure hub’ of the family, was hit by a sudden and severe stroke. I went cold and numb, hurried into my office, called my husband, booked my flights, called for a taxi, left work, picked up some luggage at home, and went to the airport. During the two flights, my mind was racing with questions: How was he, would we lose him now, how would he become, who would visit and take responsibility for my chronically disabled mother now? A few hours later, my sister, who had arrived on an earlier plane, picked me up from the airport in our hometown and with tears in our eyes, we hugged and drove directly to the hospital. During the 10-min drive, she updated me: he was conscious. He was not paralysed but had only said a few words. Through tears, we laughed: all the thoughts he tried to formulate transformed into the same words: ‘the company’. He obviously experienced aphasia. Arriving at the familiar small-town hospital, we went straight to the four-bed room. Dad looked tiny in the bed, as if he had shrunk. He was pale, and there was an ‘emptiness’ on his face. His features were childlike in the way he was sitting on the edge of the bed in the hospital pyjamas, his feet not reaching the floor. Yet, despite lacking words and experiencing aphasia, he was also clearly himself. He was vulnerable, ill, and insecure like we were, but still with us. My sister and I walked to his apartment and talked about practicalities, our anxiety, and his where- abouts and what had happened this morning when the stroke hit him. What would happen now, how long could we stay? We were acutely aware that we were both visiting from distant places, as we had our lives, jobs, families, and friends miles away. Nevertheless, we were also aware that our father’s economic situation, and the flexibility of our jobs placed us in a privileged position. However, we still had to deal with the fact that there were no relatives in the geographical proximity. Our lives changed.

9.1 Introduction

Geographical distance and limited possibilities to obtain help from family members are sources of great concern and low subjective well-being among older persons (Slagsvold et al. 2012, p. 101). The increasing number of older persons living alone is of particular concern, ‘because the availability of kin support largely depends on geographical accessibility and social contact’ (Hank 2007, p. 158). Demographic changes, such as long life expectancy, long shared lives between adult children and parents, and increasing societal complexity thus shape the life and well-being of older persons (Bengtson 2001). Furthermore, this has made multigenerational ties increasingly more important in the twenty-first century and requires the understanding of diverse forms of care beyond the nuclear family (Bengtson 2001). According to Connidis (2010), this underlines the importance of exploring the qualitative aspects older persons’ family relations. While paid care services may compensate for diminished intergenerational care, care is also a question of family obligations and moral expectations (Svašek 2008). Even in Scandinavian countries, where the welfare state plays an important role in care for older people, data suggests that the 9 Hit by a Stroke: An Autoethnographic Analysis of Intergenerational Care Across… 143 family-welfare state balance in elder care is around 50–50 (Slagsvold et al. 2012, p. 100). Intergenerational care is thus highly important. The significance of geographical distance and intergenerational care becomes particularly visible when severe illness occurs, and the older family member and the next of kin live far from each other. Intergenerational care across distances is common in rural and peripheral communities that experience young persons’ out migration but may influence the lives of older people and their next of kin in many communities. Thus far, however, scholars have paid little attention to the geography of informal intergenerational care. This chapter deals with severe illness of an aging parent across vast geographical distances and focuses on the production and provision of kinship and informal care, emotions, communication technologies (ICT) and practicalities in everyday life, and their limitations. I ask how geographical distance affects my practice and experiences as a next of kin, and how this impacts my father and my relationship with him.

9.2 Intergenerational Care—Concepts and Approach

Intergenerational care and aging across geographical distances intersect in several ways. Already Parson in 1943 (as cited in Hank 2007, p. 158) suggested that increased geographical distance could reduce the interaction between children and older parents. Others have acknowledged the adaptability of kin networks and argued that kinship interaction will occur despite geographical distance, while also recognising the negative effect of geographical distance on the possibilities for intimate and affective intergenerational interaction (Hank 2007). In this approach, geography and social contact constitute a basic opportunity structure for intergenerational interaction (Bengtson 2001, p. 8). However, intergenerational care is also performed between persons who see themselves as belonging to each other through kinship (Drotbohm and Alber 2015, p. 7). This perspective argues that kinship is not given, but is mutually created through care, social interaction, and subjective interpretation. Therefore, kinship constitutes, but is also constituted by care. Furthermore, intergenerational care is often described as an exchange, which may shift during the life course, of providing and receiving care (e.g. Silverstein and Giarrusso 2010). A performative perspective on care challenges the one-directional relationship of giving or receiving (Drotbohm and Alber 2015) and highlights that caregiving is also care-receiving, (Weicht 2015) as it holds both costs and rewards (Raschick and Ingersoll-Dayton 2004). Kinship is hence dynamic, produced through intergenerational care; care maintains and affirms kinship, but also strain and challenge kinship ties and the content of care (Drotbohm and Alber 2015). Social care covers a broad range of activities such as ‘providing personal care, doing household chores, preparing meals, shopping, taking care of finances, providing companionship, checking up regularly, arranging and supervising activities and outside services, and coordinating medical care’ (Silverstein and Giarrusso 2010, 144 M. Aure p. 1047). Distinguishing between formal (obtained in a private or public market) and informal care, Rosenthal et al. (2007, p. 755) includes managerial care, referring to ‘care-related discussions […] about the arrangements for formal services and financial matters, doing relevant paperwork, and seeking information’, as an aspect of informal care. Rosenthal et al.’s (2007) survey describes the prevalence of such an arrangement, and how it may create stress for caregivers, but provide limited information about the practice, recipients’ experience, rewards, and emotions, and how this is tied together in individuals’ lives. While these studies specify and discuss the content of diverse care practices, the social support framework (House 1981) categorises care based on its functions: (a) Emotional support based on shared experiences offers love, concern, trust, empathy, etc. and shows value; (b) Tangible or instrumental support provides financial or physical assistance, material goods and services, and encompasses direct assistance; (c) Informational support provides advice, guidance, and information; and (d) Companionship supports social belonging through shared activities. These categories may overlap and involve several functions as well as representing an analytical tool. Later studies have criticised the distinction between providing, perceiving, and receiving, and between intentions and results among the various actors (e.g. Thoits 2011). I have reformulated the social support framework to focus on practices and experiences and to align it with the ‘doing’ of care and the performative perspective that underlies this study. Care is hence seen as the emotional interaction, assistance, guidance and information sharing, which make care become a shared activity. However, neither of these perspectives discuss the geography of care and support, and geographical proximity seems to be rather taken for granted. Before turning to a short discussion of age, I will briefly present a relational approach to the intersection of care, and geographical distance and ICT. A relational approach to place sees geographical distance and space as resulting from and co-constituting practices and interrelations (Massey 2005). This approach to the production of space (Lefebvre 1991) conceptualises space as a dimension of social practice, rather than a condition or an opportunity structure. Within such perspective care is spatial. Adding a mobility perspective further highlights spatial diversity, makes mobility visible, and ‘normalises’ the existence and variety of mobile lives (Sheller and Urry 2006; Walsh et al. 2013).The emerging literature on the geographical circulation of care has also discussed care across generations and life courses (Assmuth 2013; Assmuth and Lulle 2013; Baldassar and Merla 2013; Siim 2016; Svašek 2008). The strain of generational care has highlighted emotions in mobile lives (Aure 2018; Hondagneu-Sotelo and Avila 1997; Parreñas 2001). In line with a performative perspective, ICT also has an effect on the webs of relations and is produced by these webs (Law 2009). Older persons, next of kin, care, and their interconnections are produced by ICT, while they also ‘produce’ ICT through care, kinship, situations, and networks. This perspective is not only concerned with the digital divide among older persons, which is observed between pre- and post-Second World War cohorts (Gilleard and Higgs 2008), but also 9 Hit by a Stroke: An Autoethnographic Analysis of Intergenerational Care Across… 145

highlights the role of ICT in ageing. ICT inevitably produces both age and age- related disabilities, has certain age-related effects, compensates for age-related problems (e.g. hearing aids, audio-books), and obtains new meaning (becomes something else) when being used by older persons and kin in specific situations. Similarly, ICT may overcome geographical distance, but also creates the need for face-to-face interaction and help (e.g. to maintain internet services, understand new program updates.). Performative perspectives shift the focus from understanding aging in terms of specified categories to understanding the processes of aging through intergenerational care, and intergenerational care through the dynamics of aging. Age is core to intergenerational care, and as more individuals are living longer, aging becomes more heterogeneous, and the anticipated chronological coherence in later life is questioned (Gilleard and Higgs 2013). In trying to understand this heterogeneity, the concept of ‘third age’ divides between an active and healthy old age and the‘fourth age’s ‘old old’, characterised by increasing medicalisation, ill-health, and corporal inability (Gilleard and Higgs 2017). However, while Gilleard and Higgs (2017) connect the third age to a cultural generation rather than an age cohort, the distinction between ‘ages’ serves to make these ‘ages’ mutually exclusive and additive—the unhealthy fourth age follows the healthy third age. This hides the asymmetrical and blurred transitions between ‘ages’. According to Gilleard and Higgs (2017), the division between the fit and the frail is a major source of social division among older persons, rather than solely resulting from differences in class, gender, and sexuality. They have argued for a focus on corporeality: the disabled and able body, and illness are important in understanding diversity, exclusion, and civic engagement in later life. However, their distinction between ‘ages’ draws the focus away from the intersection between the cultural generational lifestyle of the third age and the frailty that may also affect individuals in the third age. Moreover, this perspective pays limited attention to cognitive functions, whether these result from physical inabilities or are subsumed in the concepts of corporality or frailty. The ‘moral imperative of care’ prevents exclusion from the relations of the wider society and tie the elder to the social world, as Higgs and Gilleard (2015, p. x) rightly point out in the case of the ‘old old’. Gilleard and Higgs (2017, p. 1682) connect this with becoming ‘too old’. I suggest seeing illness as an inevitable part of aging and distinguishing ‘ages’ even more from chronological ages. This requires an analytical use of the concept of the third and fourth ages, rather than connecting it to ‘too old’ and ‘old old’, which are concepts basically based on chronological age, with the third age thus being followed by the ‘too old’ fourth age. The performative perspectives on kinship, care/support, geography, ICT, and age and illness suggested here make it possible to discuss a wide variety of intergenerational care practices in order to obtain a better understanding of the geography of intergenerational care through a first-hand account of the experiences of an older parent’s severe and sudden illness. The aphasia that my father developed as a result of his stroke was a central part of this experience. The chapter proceeds with a brief presentation of autoethnography, a controversial method (Langdridge 2016) due to its subjectivity, accusations of being anecdotal, 146 M. Aure and its occasionally unconventional forms. I then present a narrative of our experiences from the period when the stroke occurred until today, and discuss themes that have become vital in our experiences, including the important role of ICT in modern societies and in relationships across geographical distances.

9.3 Methods

I apply autoethnography to tell this story from my, the next of kin’s, point of view. Further, I include my father’s experiences, as he expresses them in our frequent talks and reflections about this experience. Autoethnography may ‘describe and systematically analyse personal experience in order to understand cultural experience’ (Ellis et al. 2011, p. 392), and hence through ‘displaying multiple layers of consciousness, connecting the personal to [the] cultural’ (Ettorre 2005, p. 536). Autoethnography encompasses a variety of forms, including fictional tales, bio- graphical or autobiographical narratives, poetry, and reflections. Even if there is a tradition of presenting a distinction between evocative and analytical practices (Anderson 2006), I emphasise how they may be simultaneously personal and scholarly, evocative and analytical, descriptive and theoretical (Denshire 2013). The main idea of autoethnography is that personal narratives can address key theoretical debates in sociology, as they may provide access to the individual and the social, making it possible to see connections between them (Laslett 1999, p. 392). This method can accommodate the subjectivity, emotions, and relationship between the older person and next of kin, which are useful for understanding experiences of serious illness (Ellis et al. 2011). According to Anderson (2006), autoethnography offers access to rich data on specific themes. Access to insiders’ views, is a personal dimension adding a vantage point that otherwise can be missed and may evoke emotional resonance. However, one main critique is that autoethnographic accounts leave it to the reader to analyse the data and add the conclusions to a broader understanding: ‘to gain insight into some broader set of social phenomena than those provided by the data themselves’ (Anderson 2006, p. 387). Another critique is that such narratives only present personal experience and fail to actually ‘transform given personal experiences (…) into ethnographic writing’ (Archetti 1998, p. 215, my italics). Autoethnography challenges the subject-object distinction in research. Some researchers find this problematic, because they value a sense of objectivity (Denshire 2013). Anderson (2006) argues that an analytic autoethnography has to (1) be conducted by a researcher who is a full member of a research group; (2) include analytic reflexivity; (3) include narrative visibility of the researcher’s self; (4) involve a dialogue with informants beyond the self; and (5) be committed to theoretical analysis. He adds that these key features make analytic autoethnography ‘simply a specialised subgenre of analytic ethnography’ (Anderson 2006, p. 388). Contrary to this, evocative and emotional autoethnographies may be based solely on the writ- 9 Hit by a Stroke: An Autoethnographic Analysis of Intergenerational Care Across… 147 er’s experiences with no explicit theoretical references or analytical perspectives, such as Ellis (1996) and Kelley and Betsalel (2004). I am a full member of the research community and will reflect analytically on my own and my father’s experiences. I am visible in these narratives, include dialogs with my father as data, and frame my discussions within current theories. I acknowledge that my father’s voice is ‘filtered through the writer’s voice’ (Davies and Ellis 2008, p. 287), but refrain from a traditional explicit discussion that relate our experiences to the theoretical framework and findings from other studies to keep emotional and evocative elements in the text. Even if I align with most of Anderson’s (2006) requirements, I value the challenge of the object-subject distinction and the focus on lived experience that evocative autoethnography represents. Conversely, I find evocative contributions (e.g. Ellis 1996; Kelley and Betsalel 2004) that escape all of Anderson’s (2006) points, highly analytical in their approach and effect. After discussing intergenerational care with people around me, I believed I could obtain similar data through qualitative interviews. It is nevertheless my first-hand experiences and the emotional relationship with my father that steered this research project, the process of discovery and hence the knowledge production. Applying an autoethnographic method makes this visible and accounts for the actual research process. My aim is hence to provide an analytic and evocative autoethnographic account (Williams and Jauhari bin Zaini 2016). My father fully consented to this project, and knows, understands and explicitly stated that he is aware that he can withdraw from this any time. Moreover, my mother, sister, and brother have given their consent to me writing this chapter. This account is based on my experiences and conversations primarily with my father as I have remembered them. I have drawn upon notes taken during and after conversations (e.g., face-to-face, phone, Skype, FaceTime, chats, e-mail, and Messenger communications) with my father. I also video-recorded one of my own reflections on my mobile phone for the purpose of this chapter. The implicit analysis, shown partly in the framework and contextualization and partly in the course and content of the narrative is based on what I and my father discussed and considered to be important. Thus, the performative approach to care and kinship, geographic distance and ICT, the social support framework, my special attention to geographical distance represent part of the analysis. When first discussing writing about my father’s illness and caring at a distance, he stated that he found the project interesting and this became a recurrent theme in our conversations. He and I both suggest themes and experiences that we found to be vital, and this endeav- our made us reflect more explicitly on our experiences together. Following the social support framework, I started with care as emotional interactions, followed by tangible care as assistance, care as informative guidance, and care as shared experiences. ICT is a theme throughout the chapter, not only under the information section, because it permeates many aspects of communication across geographical distances. 148 M. Aure

9.4 Emotions—Being Together Apart

My father’s and my first shared experience regarding his illness, which, still more than 3 years later, generated the strongest emotions, was the shock of my father suffering a stroke. It was a shock that lasted for days, and a shared experience only insofar it followed from the same incident and much of our later talk gravitates around it. Otherwise it was hardly a shared experience; he suffered the stroke—he was in pain, dizzy, lost some of his right eyesight, could not coordinate his body’s movements. He lost his ability to speak and understanding to an unknown degree, was afraid, and totally lacked knowledge about his future. My sister and I cried, laughed, and were angry when we were not with our father. However, when we were with him, we pulled ourselves together: we knew it was our responsibility now; we shared the frightening experience and the shock, and we were there to comfort him, be hopeful, and make sure he felt as secure as possible. We experienced relief when we found it was going to work out: he got to the hospital immediately and was on his feet again the same day. We were together and would manage. In one of the first planned meetings with his team of physicians and caregivers,I suddenly started to cry and could not stop. I realised that I was an orphan— with both my parents alive. Our family’s experiences with my mother’s disabling stroke 15 years before made it clear that my father, the caring hub in the family, who visited our mother at the institution where she lived several times a day, was now in more need of our care. These days my sister and I were in charge of both of them. I was happy to have him, still I had lost my dad and was afraid he would never return. I was lost. None of us lived there. My brother was the last to arrive and stayed for a couple of days. In the first meeting, the physicians asked about the next of kin and were sur- prised to learn that we were three siblings who all lived between 600 and 1350 km away. In the region where my father lived this meant no trains, days by bus or car, or more expensive air travel. It became evident, on that first trip, when my brother needed to help my father pack his suitcase for the stay in a rehabilitation centre: Nobody would be there to see him off. It was as if he had no next of kin to care for him. I was helpless. I value the welfare system that would care for him, but felt guilty for having moved away, for not being nearby and able to help. It felt like he was a person without people that loved him. The siblings talked, justified our livelihood and the choices that had led us away from our childhood town: our parents always wanted us to enter higher education and find our own way. They had themselves moved from their homeplaces. While my parents lived approximately an hour and a half by car from their parents, none of their own children would be nearby to care for them. 9 Hit by a Stroke: An Autoethnographic Analysis of Intergenerational Care Across… 149

9.4.1 Caring at a Distance

The following days revolved around the calls to my father’s mobile phone. Would I reach him today, would he pick up, and when he did not, was it because he had trouble with his phone, had forgotten the pin code, fell ill, or, what I feared most, was too depressed and did not want to talk? Trying to read his mood through the calls, be supportive, share his worries, be empathic but also balance his criticisms and negativity towards the rehabilitation drained me. I wanted to visit. It was a relief to go there, to see him by myself and be able to help in person, and to hug and cry with him. We installed Skype, brought an iPad the speech therapist had required for his speech training, shared the login details with the family via e-mail, and practiced how to use FaceTime and Facebook chat—applications that made it possible to reach each other with a camera and in various ways. The iPad gave him access to his newspapers, and even though he could not really read them, the surf- ing gave him some comfort in terms of getting an idea about what was going on, something to do, obtain a sense of normality, as well as shortening the time. The iPad meant freedom and allowed my sister to help him pick out the right shirt for a special occasion. This visit was by far the most expensive part of his sudden illness. It required a hotel, a rental car, and long and complicated air travel. I spent far more than when taking my own nuclear family on a holiday to another continent. It felt grateful and a sense of relief to know that my parents were able and willing to contribute financially to this travel. I experienced further strong feelings of gratitude regards my family situation—adult children, a caring husband, and favourable economic conditions. These conditions made it possible for me to spend time and energy with my dad. I appreciate our relationship, which involves few tensions, and makes me more patient with him than any other person. I feel thankful that our emotionally close and continuous contact was possible due to the freedom I experience at work, which allows me to work remotely, stay with my dad, visit my mom, and coordinate and organise numerous practicalities. I am suddenly vulnerable and dependant and have so much to be grateful about. The presence, often on Skype, being together on camera, are probably the most important experiences we shared in this period: I spent hours on the phone and Skype with him, going through what happened when the stroke occurred: How was my mother, did we (the siblings) manage to take care of all the arrangements she was entangled in? How was he, how would he manage, what about the language, the driving license that he lost because of the stroke? Mainly through ICT, I could share his worries, was hopeful, recalled the progress, and assured him that things would settle and become ok. These exchanges, which we both recognised and talked about were valuable and necessary, sometimes overly affirmative, spanned a fabric of love and concern that tied us together. 150 M. Aure

9.4.2 Embodied Emotions

The short video I recorded about 4 months after his stroke, reminded me that the strongest emotions are maybe also the easiest memories to forget: Listening to my own voice, I remembered feelings I had totally forgotten, I said: ‘Today is the first day I feel the sting in my chest. My lungs hurt and prickle and tingle in my thorax. Then, I think, this is to immerse myself too much in my father’s life’. Did I choose to forget this? About a year later, talking on Skype about this project and the progress with my writing, he said that the most difficult thing for him was the loneliness and the invis- ibility of his illness. With his ICT-device laying on the table, I could see only the top of his head, sitting in his living room. I knew that he does this familiar gesture, mas- saging his eyes and patting his eyebrow. His loneliness hit me, my guilt felt cold. I was not there. He was alone. The aphasia has taken away his long hours of reading and TV-watching, and made him afraid that his speech doesn’t make sense. He has become restless and anguished, and when walking on the street, the people he met do not know. It does not show, but when he stopped and talked to acquaintances, he felt that when they heard the words fail him, they thought he has ‘lost it’. He has become insecure. Even though he has learned to talk about the stroke and the aphasia, most people have forgotten, and he found it shameful not to be able to understand them, to miss information, and not be able to respond adequately. My heart bled for him. I have told him how sorry I am: for him being alone; for me being far away, and he has comforted me and we shared a moment of sorrow and of thankful companionship, for sharing this. Another set of bodily emotions brought us down new paths and amusing experiences. I felt creative when his chest pain, atrial fibrillation and anxiety about his heart made me suggest trying to do yoga together—apart. After some time, he was willing to try ‘just to test it’, as I assured him. We started using yoga instructional videos on the iPad. When visiting him, I would find videos and create shortcuts, and we would practice yoga/stress release exercises. This was a totally new experience for him, and an intimate experience for me to do yoga with my dad. We joked about how we almost went to extremes to deal with the new situation. A few days later, he could not find the videos, but I could guide him using my voice and the cameras on several devices until we found the programs. The open mindedness of this former self-made businessman and accountant from a rural non-academic background made me proud. However, the technology also made us share some frustrations. For instance, the many login usernames and passwords, the various problems regarding changing internet connections, installing new programs on his PC, mobile phone, and iPad, and new drivers for the printer caused swearing and anger, and required assistance from children, children in law, grandchildren, and professional help. 9 Hit by a Stroke: An Autoethnographic Analysis of Intergenerational Care Across… 151

9.5 Tangible Practices, Geographical Proximities and Digital Strategies

The tangible and instrumental care practices dealt with my father’s financial help towards us, how we assisted him physically, and the exchanges of services and material goods. Help with the technology, the software, and the access and function of the software has been necessary to be able to receive private and public documents and instructions. Extra problems have occurred when information arrived in long formal letters, or in English, when the aphasia and lack of English knowledge has made him helpless. Digital communication with most private and public services requires writing, reading, and login procedures with ‘tons’ of passwords. The digitalization and aphasia has made him disabled while ICT also has become a tool for remote assistance. It has enabled the family to share information, keep an electronic e-mail diary with the information necessary to assist in practical day to day activities, and show daily concerns. This engagement produced a feeling of master- ing and care, but for him, as he said, also an experience of being left behind, dependent on others. Living in the centre of a small town with most services at walking distance made my dad able-bodied even though he felt restricted when his driving license was cancelled. ‘The problem is here’, he would say and point to his head. Physical concrete support was not his main need, and his financial position made him used to and able to buy cleaning services and eat out. Luckily, even if he sometimes was unable to recall the pin codes for his different cards, his fingers remember them and ensures his ability to withdraw cash and pay in the stores. New ATMs or other services could contribute to stress and fatigue, which would make him embarrassed and both of us aware of his vulnerability in new situations. The aphasia required him to develop new strategies. Talking on the phone with strangers has become out of the question, this forces him to show up at the counter to set up doctor’s appointments. Furthermore, the aphasia also made the visits at the doctor’s office difficult. He would be worried about his medical results and the consequences for the coordination of the medication that were administered by the public home health service. He found himself unable to articulate to the doctor how he feels and tell about problems and pains. He could not convey the doctor’s information and retell it to me. The tangible assistance of calling the doctor after his appointments to obtain information, became problematic since it required formal written consent. We hence scheduled appointments when a family member is present, or dad would call up and bring me into the conversation using the loudspeaker on his phone during the session. He would do the same when he needs help in shops, or making travel arrangements. This remotely facilitated practical direct assistance, almost as if I were physically present, and thus enabled us to later talk about the results and the particularities of his daily doings. Certain incidents or sudden health problems are hardly manageable remotely. When father falls ill and needs help to get to the hospital, we are unable to assist him. He has been forced to make agreements with friends. We all know that this is 152 M. Aure a second-best solution for him, who actually has a family. This is the weight of practical and moral expectations and discomfort inherent in intergenerational care. Some digital services also require physical presence, although the camera on his devices has made it possible to assist him on some practical issues remotely. In order to compensate for the loss of reading and to help with his feelings of loneliness and restlessness, we wanted to install an audiobook application. Going through the installation procedure on his devices while communicating using sound and camera, the procedure asked him to print a form, take it to the audio therapist for a confirmation and signature, and then mail it to a national service, stopped us. At the time, he was unable to print from his iPad and would have problems writing the right address on an envelope. After some time and visits, as well as phone calls to the national service, and ultimately installation of the application, ‘reading’ has once again become a dear leisure activity. Who can help with these small daily problems?

9.6 Informational Support and Guidance

Paradoxically, living in a digital information society requires literacy. Even audio support is often based on written language and requires high levels of information processing, which are cognitive abilities typically damaged in patients with aphasia. Dad is able to use his computer, iPhone, and new software, but has experienced problems although he is accustomed to these gadgets from his professional life. The new digital services increasingly require personal logins, which may be hard to circumscribe. Conversely, information about changes in the charging system for his plug-in car and important medical information have arrived in the post, and in order to read this information, he needed to be able to install and update applications on his phone and send the scanned document to family members to read. We have spent many calls repeatedly going through the activities of the week, because he was worried that important information has escaped him in a letter or digitally. We have reviewed my parents’ medical appointments, discussed news of interest, information about local health administration and provision, bank accounts, life and property insurance, new internet providers, changes in electricity systems, and welfare support—living in modern societies is complicated. Right after the stroke, the primary contact person in the municipal health care service was supposed to coordinate and help. However, this person and the function changed several times during the first months following the stroke, and I was unable to follow and had to take notes to keep track of names and responsibilities in the municipality. The number of nursing assistants who provided medicines and care in periods of illness was uncountable. Double that when I included my mother’s more complicated health condition and divided the responsibilities a little to account for the help between the siblings which was coordinated and divided between us through Facebook groups, and family chats during visits to make it manageable. This management need has stabilised on a lower lever as time goes by. It feels, 9 Hit by a Stroke: An Autoethnographic Analysis of Intergenerational Care Across… 153

however, as if it has been replaced by the need for companionship and social belonging.

9.7 Companionship and Shared Activities

Looking through my notes from our conversations, I found that dad has problems finding words maybe 10–20 times during a 20-min chat. This exceeded my expectations, perhaps because I need to feel hopeful, my familiarity with his language, the themes, and that the context has helped me understand. I believe him when he talks about how this being a social problem. It has however not prevented him from meeting people and seeking out new activities. Bravely he joined a Tuesday afternoon exercise class, and the weekly technology class for older persons after he became ill; however, he shared that he gets tired of concentrating and becomes aware of the mistakes and blunders he has made in front of acquaintances and strangers. He knows that he needs these activities in order to meet people, as he has said “I cannot be alone the whole day”. Moreover, while, he explained, older women pay each other visits for coffee and chats, older men are not that good at socializing. He, however, still sees his former network of businessmen for lunch every day and has dined at the municipality health care centre. These issues turn up when he is stressed and are recurrent themes in the chats between us—How I wish I were there to be together and share his life! My frustrations sometimes come out as irritation and hurt, and I am glad to know that I can share them with the family and that we are able to laugh and let steam out. I could join him for his daily walk, we could go to the cinema or concerts, do errands, have a quick cup of coffee, share with him details of his grandchildren’s performances. These are activities that are beyond everyday contact and messages, mails, calls, and pictures on all kinds of digital platforms. We have planned for hours and days the next holidays and family gatherings, and since he does not trust himself to go on longer trips alone, the family must coordinate to travel with him and help plan group travels. Father and I have talked these things through, we have discussed common experiences and experiences at our own ends. This has allowed him to practice talking, share, and make time go by—we both know it and talk about it. We value the camaraderie, but both also feel lonely. Some months after the stroke I introduced the issue of applying for a municipal service assistant. After getting used to the idea, we applied, and he was assigned a young man to keep him company. 154 M. Aure

9.8 Concluding Words

Concluding this chapter poses challenges. As I decided not to make the analysis explicit, I sum up this study by highlighting results that are demonstrated rather than analysed in a traditional way. Drotbohm and Alber (2015) have argued that kinship is shaped by interaction and care. I find that the closeness and broad register of contact in the varied caring practises have intensified my relationship with my father. Kinship means more and the relationship redefines. Despite the fact that my active, healthy dad continues to help me economically, practically and in many ways through his intellectual capacity and broad knowledge gained through a long life in business and politics, his stroke did disturb the adult child-superior parent relationship. His need for help and care has made our relationship more equal, but also reminded us, that in this phase of life, he has become needier, and the parent-child relationship is under revision. Role reversals typically involve strong and contrasting emotions. This became obvious in my feeling of being orphan, and in the childlike features the illness imposed on him. My father, I think, lost his independency and pride through the increased loneliness. We both have tried to secure his independence, but we also know and have talked about how this balance is changing. The thankfulness for our relationship is part of this check and balance, and I would suggest that keeping the idea of a superior parent status is an important element in the third age. This may be a defining and valued part in third-agers’ self-esteem. Needing their children for more than companionship is thus a sign of getting old: part of the frailty that illness inflicts. This acceptance of becoming older and needy of your children’s help is perhaps the hard part. The problem is not to ask for help, nor that he think we cannot help, but the burden of recognizing that he needs more help than he is currently able to provide to others. He is definitely still part of the culturally defined third age (Gilleard and Higgs 2017), and he currently attends seniors’ choir, senior university, swimming and gymnastics, and travels. However, he has also been marked by the life-changing illness and becoming a fourth ager. This challenges the distinctions between the third and the fourth age, and the transition between these groups may seem blurred with illness, which is an inevitable part of aging. I suggest that aging should be understood as intersections of fit and frail, the corporal and the cognitive, and health and illness. This intersection requires distinguishing the third and fourth ‘ages’ even more from chronology. The increased use of and reliance on ICT is integral in understanding intergenerational care at geographical distance. The increased administration and management of life expressed in the digitalized services, the numerous usernames, passwords and pin codes, and data support needed when there is no employer or professionals to keep you up to date, is vital in understanding aging. The account also shows the interaction of a multitude of variables including, the importance of companionship, the emotions involved in living with aphasia, gender and loneliness, 9 Hit by a Stroke: An Autoethnographic Analysis of Intergenerational Care Across… 155 the vulnerability involved when your main health problems are invisible but attack the speech centre, and new cognitive challenges related to reading and writing. I have explored the entanglement of intergenerational care, aging, and ICT across geographical distances, but more than in traditional analytical texts, it is left to the reader to decide if this has been done adequately. The narrative demonstrates the first-hand experiences, the process of discovery and knowledge production, and how an autoethnographic approach may accommodate the subjectivity and emotions between the older person and their next of kin. The autoethnographic approach also challenges the content of the narrative: The focus on the relationship between me and my dad suggested that there are few other people around, which is not the case. However, keeping it my story implies a limitation. This account may, therefore, prioritize the personal and individual at the cost of shared experiences. Furthermore, I found it difficult to switch between evocative descriptions that required meticulous empirical proximity and a more distanced analytical writing, and created a not-too-evocative text with a rather implicit analysis. This tension between emotional proximity and a detailed account on the one hand, and the need for analytical distance, contextualization and structural accounts on the other may explain the choices made in the more evocative autoethnography (Ellis 1996; Ellis et al. 2011; Kelley and Betsalel 2004). These studies are meticulously personal and evocative accounts without any explicit ‘disturbing’ analysis. Maybe the combination of analytical and evocative autoethnography is hard to achieve, and what gets lost in a combined approach, is the closeness, emotions, and experiences, which is the very rationale for using this approach? What is gained is first-hand knowledge of everyday aging in situations that is becoming widespread and influencing an increasing number of individuals. Based on a personal account this brings knowledge useful for municipality and private services, especially in regions marked by outmigration and high mobility.

Acknowledgement Thanks to Dr Sharon Rosemand, Dr. Adam Perry and Kathy Fitzpatrick for their comments on an early draft and thanks for comments from the editors.

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Olga Asrun Stefansdottir and Eydis Kristin Sveinbjarnardottir

Abstract In this chapter, we take the position that the individualistic view or perspective of the Icelandic health care system creates challenges to the well-being, agency and human rights of elderly couples. We argue that taking a systems approach is a prerequisite for sound policy decisions, service delivery and research regarding older couples and families. It is important to highlight that older couples are a diverse group of people with different needs and expectations in relation to services. Our research question is: “What challenges are elderly couples in Iceland facing?” We explored the possible answer to our question by reviewing demographic change of the elderly in Iceland, articles and policy documents on elderly couples in the last 5 years. Following the review of the challenges on aging we decided to focus on one of the most current and controversial issue of cohabitation of couples in nursing homes. The results indicated that the service users requested continued togetherness when the partner needed institutional care. The issue of forced separation needs further discussion especially with health professionals themselves. It also needs a greater political will to implement and hence to make changes to accommodate the needs of an aging population in Iceland.

Keywords Cohabitation · Continued togetherness · Family · Forced separation · Challenges · Health professionals · Iceland · New challenge · Nursing homes · Older couples

O. A. Stefansdottir (*) E. K. Sveinbjarnardottir School of Health Sciences, University of Akureyri, Akureyri, Iceland e-mail: [email protected]; [email protected]

© Springer Nature Switzerland AG 2019 159 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_10 160 O. A. Stefansdottir and E. K. Sveinbjarnardottir

10.1 Introduction: Demographic Transition and the Changing Policy Context

Research about older adults in Iceland is rare but some current researchers have turned their attention to the importance of knowing more about getting old and preparing for it. The aging service has been considered repetitious and more flexibility is needed where older adults’ wishes are respected (Arnason 2004). The population of Iceland is around 338 thousand and is getting older but is still younger than in most European countries. In 2060 third of all people in Europe will be over 65 years old but in Iceland in the same year only quarter of the nation will be 65 and older. Life expectancy in Iceland has always been one of the highest in the world for both males 80.7 and females 83.7 (Statistics Iceland 2017). These demographic transitions will call for more research on the health and well-being of older adults to plan for appropriate health care service. In Iceland, 73% of people over 67 years of age consider their health rather good or very good, two out of three are never lonely but 17% are often or sometimes lonely (Social Science Research Institute 2017). Although, various statistics on the health and well-being of the elderly in Iceland is available it is important to get more diverse and detailed information about the elderly population, especially elderly couples. There is a need for more demographic information about these couples to be able to plan for more, comprehensive family oriented social and health care services in the country. Research literature from the older adults’ perspective about their needs and transitional challenges in life is rare (Harrefors et al. 2009). The splitting of the geriatric welfare and health service in Iceland between state and municipal responsibility makes it often difficult for the elderly to be informed and aware on their health care options, which may affect how they think about the quality of the services. That said, around 45% of the elderly in Iceland claim that health care services have wors- ened during the last few years, but at the same time 74% of the elderly think that they have rather good access to welfare and health services (Social Science Research Institute 2017). Acts on the affairs of the elderly 125/1999 are special laws securing welfare services for older adults in Iceland that offer either by the state or municipal service providers. The main goal of the law is to secure services for the elderly according to their needs in line with the service level considered normal for their health and social condition (Acts on the affairs of the elderly 125/1999). Services for the elderly are divided into two categories i.e., formal and informal care. The formal service is provided according to laws and regulations and reflects in the annual budget for the state and municipalities. However, the family, spouse, children or others, provide services defined as informal. Informal services are usually unpaid work of informal caregivers and not always provided in a structured or organized manner (Sigurdardottir and Kåreholt 2014). The Welfare Ministry in Iceland published a report in 2016 titled “The development of strategy in the services for the elderly for the coming years”. The report 10 Continued Togetherness: Couples Preparing for Old Age 161 emphasised the human rights of the growing population of the elderly, empowering and increasing their functioning, increasing their agency and independent living to improve their quality of life. The report emphasises the need for increased innovation and technology in providing services to the elderly, pointing out a new generation of elderly which have the ability to use electronic welfare services. It is necessary to have more individualised service and needs to implement quality standards evaluations and methods to assess priority levels. The report emphasises better education and skills of service providers (Ministry of Welfare 2016). The report mentioned the challenge of retirement in relation to pension payments and finances but not at all in relation to the psychological and cognitive processes of preparing for old age. Furthermore, the report emphasises that relatives should be consulted and informed, especially when spouses are separated from each other when one partner is moved to a nursing facility and the other lives in the community. Few studies conducted on older couples in Iceland do exist, although 63% of elderly people are married or cohabiting couples (Social Research Institute 2017). The labour force participation of the elderly is higher in Iceland than in other Western nations (Petursson 2007; OECD 2006). The pension system in Iceland rests on three pillars; the mandatory occupational funds, voluntary additional pensions, and the social security system. According to the Acts on the social security 100/2000, people can start to draw a pension at the age of 67. Statutory retirement age in state and municipal employment is 70 years. There is however no universal law about retirement and in general, no such rules pertain to the private labour market, yet many companies also retire employees at the age of 70 years old. The age group 67 and over is now about 12% of the population and in the next 50 years, the forecast is that the ratio will reach 24% (Acts on the social security 100/2000; Statistics Iceland 2017). In a report about flexible retirement, concluded that it would be important to increase flexibility regarding how and when people can retire (Prime Minister’s Office 2002). Yet research on joint retirement of married couples is rare. Information about the marital expectation of retirement is often missing in the literature and in Icelandic statistics. Long-term marriages seem to be a relatively new social phenomenon that needs further investigation, given the increasing number of older adults and the amount of informal support and care provided by spouses. Older couples spend most of their time with their partner and receive social support from each other; often this increases the quality and importance of the marriage when they grow older (Lifdu nuna 2015; Stefansdottir 2015; Trudel et al. 2010). The relationship between behaviour and expectations is complicated, especially when spouses have different expectations and plan. Couples who are expecting joint retirement are three times more likely to retire at the same time than couples who have no expectations to do so. Couples who discuss retirement, retirement age, health and their relative earnings are more likely of realising joint retirement expectations (Ho and Raymo 2009; Syse et al. 2014). Trudel et al. (2010) consider how difficult it is to predict whether retirement has a positive or negative effect on marriage. The relationship between good marital status and retirement needs an investigation how the couple adjusts to retirement together. Retirement is considered a stressful transition 162 O. A. Stefansdottir and E. K. Sveinbjarnardottir period with new challenges for the couple that can compromise the quality of their marriage, especially in consideration to declining health. The partners often need to redefine their respective roles, face various physical health problems that can influence their well-being, the quality of their conjugal and sex life and learn to manage common activity (Trudel et al. 2010). In light of the information in this section on elderly people, we want to explore further the challenges facing elderly couples in Iceland.

10.2 Research Question and Methodology

We explored and reviewed data from 2013–2017, i.e., five-year period (Andrason 2013; Isaac and Michael 1995). We systematically reviewed and collected information on challenges facing elderly couples (from the age 67 and older) in trying to answer the research question: “What challenges are elderly couples in Iceland facing?” We explored and reviewed public media, interviews and newspaper articles (n = 9), governmental reports, laws and amendments in the Icelandic parliament (n = 15) and Icelandic research (n = 4). We looked for discussions, strategic planning, amendments to law, and studies on older couples. The literature indicated that one of the challenges facing Icelandic couples was forced separation when one enters an institution and the other cannot become a resident there which will be the main focus of our results and discussion.

10.3 A Systems Approach – “Thinking Family”

Systems theory is one of the theories in the ideology of family therapy. From the 1950s, therapists began to realize that family relationships and power could change the course of treatment in a good or bad way (Bowen 1978). Bowen (1978) was a pioneer in using systems thinking when looking at families in marital conflict or dysfunction with the spouse. When a change occurred with one family member, it affected the entire family system. The attention focused on the well-being of the individual in the presence of another person. The Austrian biologist and scientist Von Bertalanffy (1968) played a fundamental role in the development of the systemic discovery. Health professionals have transferred and applied his theory to view the family as a system instead of individual parts (Hårtveit and Jensen 2008). In the last few decades family systems therapy has developed and expanded in practice where health professionals consider “family thinking” an essential part of services (Combrinck-Graham 2014). The ideology of family-oriented services often has different emphasis from the one used for individuals. When working with individuals, internal factors such as belief in own influence, will and habit is 10 Continued Togetherness: Couples Preparing for Old Age 163 emphasised, and how these interact with the environment (Kielhofner 2008). Systems approach on the other hand looks at the family as a whole, its welfare and interactions within the family and the environment (Combrinck-Graham 2014; Nichols 2010). In family focused services, there is no limit to who is involved in the therapy process because each individual decides who belongs to his or her family (Bülow and Söderqvist 2014; Sveinbjarnardottir et al. 2013). The needs of older adults can be complex because of increased risk of dealing with chronic illnesses that requires long-term services. The integration of the formal and informal services is necessary to emphasise the continuum of service where users of the service participate in decision-making and are informed immediately of changes in the process. Health care disciplines and professionals have a different background in family systems education and clinical practice to be able to provide such service (Ministry of Welfare 2014; Ministry of Welfare 2016). From a family perspective retirement is a conversional factor and causes significant changes in older individuals and couples lives. These include changes such as in finances, daily activities, relationships, quality in marriage and physical and mental health. Retirement also affects social relationships, well-being and spirituality. The work role is very important for many people and some want to work longer than laws and regulations allow. A new chapter begins in peoples’ lives at retirement when the working life ends and hence habits, social relationships and even social status. Each person goes through retirement differently, whether he/she decide to quit independently, because of illness, or because of statutory requirements (Stefansdottir 2015). Couples often make a joint decision about retirement and about 30% of married couples decide to retire within one year of each other (Ho and Raymo 2009; Houlfort et al. 2015). One of the things that calls for more attention is the need for family advice and support for older adults and couples during the retirement transition phase when relationships and roles start to change. The couple’s circumstances and their interactions are unbalanced at some point during the retirement. Dealing with different issues that does not meet their expectations or with the spouse’s health problems are factors that couples might need assistance to solve. Within the systems theory the term homeostasis refers to maintaining balance within the family. All systems are open to external influences that they may find difficult to handle. There may be changes in life in relation to age and development (Rivett and Street 2009). In order for the family to function as a whole, every person within it needs to contribute. If there is a balance within the family, it becomes better to address changes. During the life span, it is necessary to look at the different developmental tasks that the family is dealing with. There are reasons to believe that older couples and their families need greater access to supportive services such as pre-retirement planning in relation to home care. Professionals who work with older people must be aware of the importance of working with the whole family of the person seeking services, as their quality of life may depend on it (Combrinck-Graham 2014; Stefansdottir 2015). 164 O. A. Stefansdottir and E. K. Sveinbjarnardottir

10.4 New Challenge – Continued Togetherness

The need for couples to prepare for old age is growing more evident in public discussions in the media, in governmental reports and amendments to law in the Icelandic parliament and in few Icelandic studies (Mbl 2017; Ruv 2013a, b; Ministry of Welfare 2013; Ministry of Welfare 2016; Acts on the affairs of the elderly 125/1999; Parliamentary document 256, 2016–2017; Stefansdottir 2015). Parliament members in Iceland in the years 2015–2018 have been preparing an amendment to the law on the issues of older adults 125/1999. According to the Icelandic regulation 466/2012 only a person who has undergone a health and ability assessment is accepted in a nursing facility. (Regulation on the assessment of the need of the elderly for a nursing facility placement 466/2012). At the 146th Legislative Assembly of 2016–2017, in Iceland, a parliamentary amendment to these laws was on the right to cohabitate in institutions. This amendment proposes that older adults, who have lived for a long time in a nursing facility for the elderly, should be able to live with a spouse or cohabitant at the institution (Parliamentary document 452 2015–2016; Parliamentary document 256 2016–2017; Ruv 2013a, b). A spouse or cohabitant is obliged to pay rent for the costs incurred by his or her stay at the nursing home and, if applicable, will have access to the services provided for a fee. It also states that if the person in question dies, his or her spouse or cohabiting spouse must have the right to stay at the institution for up to 8 weeks after the death of the spouse. Studies show that couples who are included in nursing homes programs help to nurture healthy spousal roles and increases the couples’ quality of life (Martin et al. 2008). In Denmark, Sweden and Norway, there is the possibility for couples to stay together but law (Sweden: Regeringen’s proposition 2011/12:147) does not always enforce it. The Icelandic amendment has not yet passed through the Icelandic parliament, hence in Iceland married older couples or cohabitants are forced to terminate their cohabitation. The arguments for giving older couples the choice of continued togetherness is about their human rights, self-determination and right for decision making in their own life (Hreidarson 2017; Parliamentary document 452 2015–2016; Parliamentary document 256 2016–2017; Parliamentary document 252 2017–2018; Sigurthorsdottir 2017). Nordic and international research on the experience of relocation or transitions of older adults into long-term care shows that it is a major life challenge for the entire family, i.e., the resident, the spouse and for family members. The family seems to be unprepared and left behind by health care professionals who provide minimum help in cognitive or emotional support (Eika et al. 2014; Johnson and Bibbo 2014; Lundh et al. 2000; Müller et al. 2017). In Iceland on January 1st, 2016 the population of people 70 years and older was 31,028 and according to numbers from the Directorate of Health on the May 1st same year 2407 lived in nursing homes. Over the last years, individuals living in nursing homes have increased in line with the aging of the population. One can draw the conclusion from these numbers that informal caregivers are an important resource for providing care to older people. Sigurdardottir and Bravell (2013) found 10 Continued Togetherness: Couples Preparing for Old Age 165 in their study that large numbers of the informal caregivers are spouses that needed even care themselves. From the year 1996 to 2016, the age of people in Iceland has increased on the average 3.9 years for males and 2.2 years for females. More women than men live in nursing homes, or 64.1% females and 35.9% males, which represents the gender proportion of people older than 67 in the last 18 years. The demographics of how many of the men and women in nursing homes are married or cohabiting with a partner living in the community are not officially recorded, yet it would be very informative in the discussion about forced separation of older couples (Directorate of Health 2016; OECD 2006; Statistics Iceland 2017). For more than a decade the public discussion in Iceland about forced separation of couples when one spouse needed to go to a nursing facility has been about how sad and un- respectful it was for the couples, but no one took the initiative to try to change the laws until recently. Elderly couples inevitably prepare themselves for the life challenge when one spouse faces long-term disability or illness and goes to a nursing facility the other lives alone in the community. As expected, the spouse living in the community visits but does not have the right to stay with his or her loved one during the night. Braithwaite (2002) study showed that the spouse forced to live alone in the community goes through a similar bereavement process as after the death of a spouse. In another study by Söderberg et al. (2012) the relatives of the elderly experienced feelings of shame and betraying the elderly who was relocated to the nursing home. Surprisingly, it was not until 2013 in Iceland that the discussion on the forced spousal separation received emotional national attention in the media. Husband of a spouse living in a nursing facility protested when interviewed about his situation in “Kastljos”, a current affairs program on Icelandic national television (Ruv 2013a). The protestor was a prominent Icelandic citizen who immediately caught the attention of further media coverage on the matter with subsequent response of government and municipal officials who had to state their opinions and arguments on the issue. On the television program the husband talked about his suffering experience of forced spousal separation after more than 60 years of marriage – he had been living in the community and went every day to spend the day with his wife at the nursing home (Ruv 2013a). Few years later, another prominent male who recently lost his wife, has been criticising the health care system on the social media describing his experience. He stated that spouses who have a partner at a nursing home are traveling frequently between their own home and under staffed nursing homes, with economical cost and distress. He has challenged the pension funds to change their policies and invest in constructing and running nursing homes. He thinks the pension funds are looking too narrowly at their investments. He states that the pension funds have the right to invest in nursing homes but they have not done so since the year 2011 (Mbl 2017). With the newspaper article online there is a YouTube adver- tisement attached which is part of his touching and emotional campaign about how the forced separation can affect old adults. In his own words: “For better, for worse until death do us part” is in fact “For better, for worse until the health problems do us apart” because people are not allowed to live with their spouses if their partner needs a service at an under staffed nursing home (Mbl 2017) 166 O. A. Stefansdottir and E. K. Sveinbjarnardottir

Following the media coverage in 2013 of forced separation of elderly couples, one nursing home made an agreement with the Welfare Ministry for a pilot project for two years (Bleikt 2013; Mbl 2013; Ministry of Welfare 2013). The nursing home tried admitting up to four couples at each time at their facility where only one spouse fulfilled the health assessment according to the regulation. The husband who protested in 2013 and his wife were the first service users admitted into a nursing home. According to the pilot project, this was the first formal exception from the regulation 466/2012 in Iceland. In the media the project was presented as a milestone because very rarely both spouses need the services of a nursing home at the same time, which forces them to live apart. There were high expectations that this project would meet the emotional needs of couples and increase their quality of life. The spouses admitted to the nursing facility according to the project did not change their legal residence and if their spouse would die, they agreed they would move with short notice from the nursing facility back to their former home. The spouse in the pilot project paid a monthly rent and a fee for food, access to social activities and health promotion services. If the spouse admitted according to the pilot project got sick, he or she received traditional health care from the community health care services. In the final report of the pilot project from 2015, the administrators, project manager and staff that worked on this project said that it did not turn out well enough (Parliamentary document 452 2015–2016). The administrators and staff built their opinions on two couples who participated in the project, one couple who used the services for 3 weeks, and the other couple for 11 months. The report did not emphasise experiences of the couples participating in the pilot project. The nursing home decided to go back to the previous policy according to the regulation and encouraged the healthy spouse to come for frequent visits to his or her loved one and helped him or her to find accommodation close to the nursing home. Introduction of the amendment for allowing couples to stay together in nursing homes took place in three Legislative Assemblies, i.e., 2015–2016, 2016–2017 and 2017–2018. In 2015–2016, there were call for reviews on the amendment (Parliamentary document 452 2015–2016; Parliamentary document 256 2016– 2017). There were two thematic answers to the reviews in relation to all the amendments: First, the ones who endorsed because it was old people’s human rights and definitely recommended that it should pass through the Parliament. Second, where the reviews from the nursing homes representatives themselves. They were against it because of budget issues, lack of health care staff and too long waiting lists. Only time will tell if the amendment will pass through Parliament to secure the human rights of elderly couple where one spouse needs to live at a nursing home.

10.5 Conclusion

Demographic changes in the next decade in Iceland will call for new policies on the issue of older people. Theoretical foundations and research is often limited and do not capture view of the family or couples because it does not apply systemic 10 Continued Togetherness: Couples Preparing for Old Age 167 approaches. Further, the Icelandic health care system has failed to involve families as their stakeholders in their service provision. Illnesses are relational phenomenon where it is appropriate to involve the family into the service provided. It most often improves understanding between family members and the service provider (Wright and Bell 2009; Chesla 2010; Combrinck-Graham 2014; Sveinbjarnardottir et al. 2013). The laws and regulation on elderly people seem to reflect the non-family systems perspective as well. Therefore, this perspective fails to consider to the person’s context or environment. Instead, it emphasises the individual and the institutional preferences but recently one can see changes towards more family systems views as we discussed in the section New Challenges – Continued Togetherness. The spouses who could not stay with their ill partner at the nursing homes protested that they could not become a resident and support their loved one (Arnarsson 2017; Hreidarson 2017; Mbl 2017; Ruv 2013a). This calls for attention on the partner who is not residing at the nursing home but left behind at home. What does he/she feel about no longer living together with the partner? How does it affect his/her health and mental health living without the partner? If spouse is living far away from nursing home, how does that affect the marriage relationship? What about loneliness and isolation? Would the partner prefer to stay in the nursing home together with the spouse given the choice? It is important to emphasise how valuable it is for the marriage that couples prepare sooner than later for their preferences and choices when preparing for old age. There needs to be more programs that are educational within the welfare system in Iceland to prepare couples for that stressful transition period following retirement that can compromise the quality of the marriage. One can see the quality of the marriage in relation to various other services and resources that this age group is facing. These include enlightenment, financial advice and more information presented with the family in mind and needs further investigation (Stefansdottir 2015). There seems to be a need to integrate retirement policies into Icelandic pension policies to promote well-being of couples and families. It was disappointing that the pilot project with couples going to the nursing home in Iceland was terminated, and policies and practices where not changed. In that respect, we have to take into consideration the views of the service users but not only the health care professionals. It is important to have an open debate on aging in the near future in order to influence the attitudes in society to older people. If the public understands the issues and needs of the elderly, it is easier to meet their needs. A notable aspect of ageing is the demographic transition of the older population which needs further research in relation to services to elderly couples. We assume that the generations to come, neither older couples nor young people, will be satisfied with the situation as it is today (Arnarsson 2017; Stefansdottir 2015). In addition, there is a need to explore ways to support families who care for elderly loved ones at home (Sigurdardottir and Bravell 2013; Sigurdardottir and Kåreholt 2014). It is necessary to engage in more research on the pending issues of older people. The demographic change represented in the growing number of older people will change the society therefore older couples need a stronger voice. Researchers have 168 O. A. Stefansdottir and E. K. Sveinbjarnardottir to ask the new generation of older adults how they want to organize social and health care services. There is a need for more studies on well-being, agency, human rights and inclusion of older people in the society.

Acknowledgement Appreciation expressed to Merrie J. Kaas, Ph.D., APRN, PMHCNS-BC, FAAN, Professor at the School of Nursing at the University of Minnesota USA, for her kind assistance in processing the manuscript in the making. Special thanks to Joan Harbison, Ph.D, RSW, Adjunct Professor at the School of Social Work at the Dalhousie University Canada, for her good comments on the chapter in the workshop in Umeå, Sweden. Andrew Paul Hill, Ph.D., Assistant Professor and Director of Police Science, University of Akureyri, Iceland and Audrey Matthews, Ph.D., Principal Lecturer (PL) in Chemistry and a Senior Fellow of the Higher Education Academy (SFHEA), for their language check in British English of the chapter.

Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to authorship, and/or publication of this chapter.

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Data

Public Media (Interviews and Newspaper Articles)

Arnarsson, S. (2017, April 6). Stíað í sundur eftir 65 ára hjónaband [Force to separate after 65 years of marriage]. Visir. http://www.visir.is/g/2017170409403. Accessed 4 May 2018. Bleikt (2013, April 15). Nýtt úrræði: Nú geta hjón búið samtímis á Hrafnistu [New resource: Now couple can cohabit in Hrafnista]. http://bleikt.pressan.is/lesa/nytt-urraedi-nu-geta-hjon-buid- samtimis-a-hrafnistu/. Accessed 5 June 2016. Hreidarson, M. H. (2017, March 19). Gamalt fólk flutt í Vík í Mýrdal:fjölskyldurnar segja það lítilsvirðingu að leggja þetta á fólkið [Older people moved to Vík í Mýrdal: The families say it 170 O. A. Stefansdottir and E. K. Sveinbjarnardottir

is contempt to put them through it]. Visir. http://www.visir.is/g/2017170318687. Accessed 19 Mar 2017. Lifdu nuna. (2015, Oct 16). Eftirlaunaaldurinn þarf ekki að eyðileggja hjónabandið [Pension age does not have to ruin the marriage] https://lifdununa.is/grein/eftirlaunaaldurinn-tharf-ekki-ad- eydileggja-hjonabandid/. Accessed 5 May 2018. Mbl. (2013, April 16). Nýtt búsetuúrræði fyrir hjón á Hrafnistu [New resource for couples in Hrafnista]. https://www.mbl.is/greinasafn/grein/1462351/. Accessed 4 May 2016. Mbl (2017, November 22). Helgi í Góu skorar á lífeyrissjóðina [Helgi in Goa challenges the pension funds]. https://www.mbl.is/vidskipti/frettir/2017/11/22/helgi_i_gou_skorar_a_lifeyrissjo- dina/. Accessed 31 Jan 2018. Ruv (2013a, January 16). Vill skoða aðskilnað aldraðra með ríkinu [Want to consider the separation of the elderly with the state]. http://www.ruv.is/frett/vill-skoda-adskilnad-aldradra-med- rikinu. Accessed 17 Feb 2017. Ruv (2013b, November 29). Fjórtán nýjar íbúðir fyrir aldraðra [Fourteen new apartments for elderly people]. http://www.ruv.is/frett/fjortan-nyjar-ibudir-fyrir-aldrada. Accessed 16 Nov 2016. Sigurthorsdottir, S. K. (2017, February 23). Vilja tryggja öldruðum rétt til sambúðar [Want to ensure the right of elderly to cohabitation]. Visir. http://www.visir.is/g/2017170229483. Accessed 23 Feb 2017.

Governmental Reports, Laws and Amendments in the Icelandic Parliament

Acts on the affairs of the elderly no.125/1999 [Lög um málefni aldraðra nr.125/1999]. Acts on the social security no.100/200 [Lög um almannatryggingar nr.100/2007]. Directorate of Health. (2016). Talnabrunnur [Health statistics]. https://www.landlaeknir.is/utgefid- efni/skjal/item29751/. Accessed 5 Oct 2017. Ministry of Welfare. (2013). Samkomulag um tilraunaverkefni á milli Velferðarráðherra og Hrafnistu. [Collaboration pilot project between Hrafnista nursing home and the Welfare Minister in Iceland]. https://www.stjornarradid.is/efst-a-baugi/frettir/stok-frett/2013/01/23/ Tilraunaverkefni-a-Hrafnistu-um-sameiginlegt-busetuform-fyrir-hjon/. Accessed 3 Oct 2017. Ministry of Welfare. (2014). Aldraðir í hjúkrunarrýmum á hjúkrunarheimilum. [Report on policy issues of the affairs of the elderly in the year 2014]. https://www.stjornarradid.is/media/ velferdarraduneyti-media/media/rit-og-skyrslur-2014/VEL-Lokaskyrsla-2014.pdf. Accessed 2 May 2018. Ministry of Welfare. (2016). Mótun stefnu í þjónustu við aldraða til næstu ára. Tillögur samstarf- snefndar um málefni aldraðra till félags- og húsnæðisráðherra [Report on policy issues of the affairs of the elderly in the year 2016]. https://www.stjornarradid.is/media/velferdarraduneyti- media/media/skyrslur2016/Motun_stefnu_i_thjonustu_vid_aldrada_02092016.pdf. Accessed 4 Aug 2016. Parliamentary document 252 [Þingskjal 252]. (2017–2018). Frumvarp til laga um breytingar á lögum um heilbrigðisþjónustu, nr. 40/2007 og lögum um málefni aldraðra, nr.125/1999 með síðari breytingum (réttur til einbýlis og sambúðar við maka á öldrunarstofnunum) [Amendment to the Law on Health Service no. 40/2007 and the Law on the affairs of the elderly no.125/1999]. Alþingistíðindi A-deild. https://www.althingi.is/altext/148/s/0252.html. Accessed 2 May 2018. Parliamentary document 256 [Þingskjal 256]. (2016–2017). Frumvarp til laga um breytingar á lögum aldraðra, nr.125/1999 (réttur til sambúðar á stofnunum) [Amendment to the Law on the affairs of the elderly no.125/1999] Alþingistíðindi A-deild. https://www.althingi.is/ altext/146/s/0256.html. Accessed 7 Oct 2017. 10 Continued Togetherness: Couples Preparing for Old Age 171

Parliamentary document 452 [Þingskjal 452] (2015–2016). Frumvarp til laga um breytingar á lögum aldraðra, nr.125/1999 [Amendment to the Law on the affairs of the elderly no.125/1999]. Alþingistíðindi A-deild. https://www.althingi.is/altext/145/s/0452.html. Accessed 7 Oct 2017. Petursson, G. (2007). Older people on the labour market in Iceland: Public policy and measures within continuing education. http://pdf.mutual-learning-employment.net/pdf/IS07/Official_ paper_IS07.pdf. Accessed 7 Oct 2017. Prime Minister’s Office. (2002). Nefnd um sveigjanleg starfslok: lokaskýrsla október 2002. [Prime Minister Committee on flexible retirement]. https://www.stjornarradid.is/media/forsaetisra- duneyti-media/media/Skyrslur/sveigjanl-starfsl-pdf.pdf. Accessed 7 Oct 2017. Regeringens proposition 2011/12:147. Rätten att få åldras tillsammans: en fråga om skälighet, värdighet och välbefinnande i äldreomsorgen [Parliamentary document on the right for couples to cohabite at nursing homes] (pp. 8, 9, 13, 26, 39). http://www.regeringen.se/rattsdokument/ proposition/2012/05/prop.-201112147/. Accessed 7 Oct 2017. Regulation on the assessment of the need of the elderly for a nursing facility placement no.466/2012 [Reglugerð um færni- og heilsumat vegna dvalar- og hjúkrunarrýma nr.466/2012]. https:// www.reglugerd.is/reglugerdir/allar/nr/466-2012. Accessed 4 Oct 2017. Social Science Research Institute. (2017). Analysis of health and wellbeing of elderly in Iceland. http://fel.hi.is/greining_a_hogum_og_lidan_aldradra_a_islandi_2016. Accessed 4 Aug 2017. Statistics Iceland. (2017). Population projections in Iceland. https://hagstofa.is/talnaefni/ibuar/ mannfjoldaspa/. Accessed 4 Aug 2017.

Icelandic Research

Sigurdardottir, S. H., & Bravell, M. E. (2013). Older caregivers in Iceland: Providing and receiving care. Nordic Social Work Research, 3(1), 4–19. https://doi.org/10.1080/21568 57X.2013.768180. Sigurdardottir, S. H., & Kåreholt, I. (2014). Informal and formal care of older people in Iceland. Scandinavian Journal of Caring Sciences, 28, 802–811. https://doi.org/10.1111/scs.12114. Stefansdottir. (2015). Success and freedom. Couples experience after retirement. http://hdl.handle. net/1946/21496 Accessed 5 Oct 2017. Unpublished master’s thesis. Part III Age, Voice and Resistance Chapter 11 Are We Really Listening? Ageism, Voice, and Older People’s Diversity in Nordic Societies Undergoing Welfare Change

Joan R. Harbison

Abstract Western governments and policy-makers generally agree that older people should be included in the discourse on how their welfare needs are met, notwithstanding declining welfare provisions. In this chapter I argue that both the socio-cultural context for older people’s participation in policy development, and the manner in which it is sought, militate against hearing the “authentic” voices of older people. When policy makers fail to meet challenges to the status quo in their knowledge about ageing, policy development continues to occur within dichotomous contradictory frameworks that characterize late life as decline, disease, and decay, or as productive and active. Thus they fail to include diversity in older people’s abilities, resources, needs, desires, and opportunities. When researchers inadequately address the complexities of accessing the voices of older people they fail in their listening. I begin by commenting on how older people are constructed within the evolving welfare context. I then introduce the idea of “authentic voice” and its links, first to the emergence of critical gerontology, and more recently to “age studies” that incorporate cultural studies, the arts, and humanities. Taking an historical and global perspective I select examples from government policy-making and academic research to illustrate and explore how policy and research frameworks combine to contain and constrain older people’s voices. Finally I discuss the need for policy makers, and researchers to support older people’s agency by revisiting and reinte- grating the slippery concept of “authentic voice” in old age.

Keywords Ageism · Voice · Older people’s diversity · Welfare change

J. R. Harbison (*) School of Social Work, Dalhousie University, Halifax, NS, Canada e-mail: [email protected]

© Springer Nature Switzerland AG 2019 175 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_11 176 J. R. Harbison

11.1 Introduction: Constructing Older People Within the Evolving Welfare Context

Within Nordic countries, as throughout Western Europe, welfare systems are evolving away from notions of equitable universal programs toward “more differentiated solutions based on group needs or even personalized provisions” (Kvist et al. 2012, p. 2). In the rhetoric common to many declining welfare states, these individualistic solutions are said to offer greater “freedom of choice” (p. 13) to consumers (see also Keskitali-Foley and Naskali 2016). At the same time, in the era of austerity politics, governments claim that the increasing expenditures on those in old age are unaffordable, a claim which some scholars argue is greatly exaggerated, (see Introduction; Evans et al. 2001; McDaniel and Rozanova 2011). These new approaches to welfare can also be seen as attempts to limit spending on older people as governments “struggle to explain and justify why one generation should support another” (Vincent 2006, pp. 256–257; see Chap. 3). Older people are viewed as relatively well off and so are cast as “the oppressors rather than the oppressed” (Gilleard and Higgs 2009, p. 287). In contrast, those in younger generations are said to be in need of “massive social investment … to foster skills and social cohesion” and to enable them to contribute to growth in capital markets (Lindh 2012, p. 281). While the message to older people is that they are unaffordable, the ongoing contributions to the economy of those in later life are overlooked or ignored (Gullette 2017). These contributions are made as members of the labour force, as contributors to markets through investments and the consumption of goods and services, through financial or in-kind contributions to family and friends, and as volunteers (Foot and Stoffman 1996; Gilleard and Higgs 2005; Vincent 2006; Vera-Sano et al. 2014). Nevertheless, older people remain characterized as being in a state of physical and mental decline and daily faced with rhetorical negative stereotypes of themselves as a “burden” on the economy that threatens to overwhelm society in a “tsunami” of need (Doyle 2007; Higgs and Gilleard 2015), messages which can lead them to internalize ageism. At the same time they are continuously invoked to activate their potential to age actively, productively, and ultimately “successfully” (Rowe and Kahn 1998; Walker 2014). Strategies for “successful ageing” continue to be promoted in mainstream health and welfare policies notwithstanding recent critiques arguing that the call to “successful ageing” fails to consider diversity, including the implications of poverty, race, education, gender, geographic location, and health status determined by any of these, or by genetic predisposition, (Katz and Calasanti 2015; Lamb 2014). Nevertheless, these strategies are portrayed as routes through which those in later life can take responsibility for maintaining their status and inclusion in the wider society while at the same time lowering what they cost (Dillaway and Byrnes 2009; Martinson and Minkler 2006; Walker 2014). Van Dyk (2016) argues that through this benign “othering” third-agers become engaged in seeking societal value through providing service. Thus older people, notably women, may feel obliged not only to take care of their own needs but to attend to those of others including family, friends 11 Are We Really Listening? Ageism, Voice, and Older People’s Diversity in Nordic… 177 and neighbours, whatever their own wishes regarding this role. This is especially the case in isolated rural and northern communities where formal services may be few (Rozanova et al. 2008; Vera-Sano et al. 2014; see also Chap. 5). Despite international initiatives regarding rights to services, matters regarding the rights of diverse groups of older people continue to receive insufficient attention (see Chap. 2). So, as they struggle to maintain a positive identity in the midst of societal censure, as a matter of policy older people continue to be invited, indeed frequently required, to participate in shaping and contributing to the decreasing provisions for their care (Raymond and Grenier 2013; Walker 2014). For instance in Finland, “the primary goals and principles of the current elder-care policy are ageing in place, user involvement and responsibility and reducing costs” (see Chap. 3; see also Gilleard and Higgs 2005; Laceulle 2017). As researchers and policy makers we may ask, as did Canadian scholar Jane Aronson 25 years ago, “Are we really listening [to diverse older people’s authentic voices?] (1992, p. 73)”; and, “What are the moral and ethical implications of our failure to do so (Taylor 1991)”?

11.2 Voice, Critical Theory and Critical Gerontology

The idea of “authentic voice” is a many layered philosophical concept (Ferrara 1998; Laceulle 2017; Taylor 1991). Within gerontology the concept of authentic voice emerged in concert with critical gerontology in the 1990s and has regained its currency as the arts, humanities and cultural studies have joined in creating “age studies” (Chivers 2012; Laceulle 2017). The origins of critical gerontology lie in the critical theory which provided the theoretical foundation for an approach that “above all … is concerned with the problem of emancipation of older people from all forms of domination. Hence, … critical gerontology is concerned with identifying possibilities for emancipatory social change, including positive ideals for the last stage of life” (Moody 1993, p. xv). Moody points out that this “new” approach to gerontology arose in a context where mainstream gerontology had increasingly become a biomedical phenomenon associated with “disease models and biomedical reductionism” (1993, p. xv; Estes 1979). Answers to questions of ageing were sought through quantitative scientific methods focused on explanation “where technical rationality generally ignores what cannot be reduced to quantitative methodology even as it conceals value commitments and forms of domination” (Cole 1993, p. vii). In contrast, if older people were to be an active part of the “emancipatory social change” fostered by critical gerontology their full voices must be heard. Gubrium (1993, p. 46) challenged the ability of researchers using quantitative scientific methods to adequately “hear what their subjects or respondents tell them about their lives [when] [T]he focus is not technical communication but the question of how to conceptualize the manner by which experience is given voice”. He argues against “attempting … to logically link and contain voice and context as categories for [measurement and] analysis”. Instead Gubrium invokes Bourdieu’s 178 J. R. Harbison concept of “habitus”. Using examples from his own research with older people Gubrium illustrates how “the world of everyday life has tradition, formal organization, and political surroundings that, in practice, concretely enter into and shape the voicing of experience” (p. 61; see also Biggs 1997; Kaufmann 1994; Macey 2001, p. 175; Pritchard-Jones 2017). So the challenge to the new critical gerontology was to talk with older people in ways that took account of the internalized structures that influenced what they might say, as well as the overt context of their lives: In short, to learn from older people how they perceive their needs and circumstances (Band- Winterstein et al. 2012; Bradshaw 1972).

11.3 “Are We Really Listening?”

As critical gerontology was gathering momentum Jane Aronson documented how older people’s voices were subject to constraint and omission even as their opinions were apparently being solicited. Thus she asked the question “Are we really listening”? Aronson examined the ways in which governments who actively sought the participation of older people in policy development nevertheless constrained that participation by shaping their participants’ responses, and thus their needs, within existing policy frameworks. Or they set aside contributions not considered a good fit with what was being proposed. Aronson observed that in a consultation with older people concerning a government policy proposal on community and social services, “the agenda … was fixed within predetermined bounds” (Aronson 1993, p. 372). On this account some of the older participants in the consultation voiced their skep- ticism about the efficacy of their role. So one person said: “The government’s obviously set the wheels in motion. How much input do we really have at meetings like this?” and another “So the government’s saying to us: ‘You talk, and I’ll do what I want to do” (p. 373). In another study of the participation of older people Aronson illustrates Bourdieu’s “habitus” discussed above. She talked to designated “‘consumers,’ invited to participate in policy formulation and implementation” regarding services intended to assist older people to remain in their homes (Aronson 1992, p. 76). The twenty older women in Aronson’s study were “selected … to prompt reflection about the variable positions of old people in the ongoing ‘needs talk’” (p. 76). Older women already in receipt of services – those most likely to be included in government consultations of “users” (p. 84) – “spoke … from within the terms of the official discourse … [including] cost constraints and demographic pressure, and the wider economic and ideological context that depicts the burdensome nature of state involvement …” (p. 81). So they said: “There are so many of us now.” And “The economy can’t keep all these old people – we’re a drag on the younger generation” (p. 82). Some struggled to remain “independent” of state provided services, but in effect “what is defined in the language of the dominant discourse as independence in the community can be more accurately understood as dependence on the support of female kin or [privately]paid service providers” (p. 78). 11 Are We Really Listening? Ageism, Voice, and Older People’s Diversity in Nordic… 179

These older women had internalized the public discourse of older people as a burden on society and thus questioned their own rights to the limited welfare services available. Even if they were involved in activist organizations and acknowledged that there were problems with services they did not necessarily embrace “a positive [and public] identification with being old … ‘Just because I belong to this organization doesn’t mean that I feel OK speaking up or seeing myself as an activist’” (p. 85). This last comment further illustrates how in Foucauldian terms “technologies of government are translated into personal subjectivities” (Laliberte Rudman 2006, p. 186). These issues remain in present-day accounts of older people’s participation in policy development, for instance, “[government] articulation of participation in … recent policies on aging lacks the politics from which to discuss difference, otherness, and access to [genuinely] participative opportunities” (Raymond and Grenier 2013, p. 117).

11.4 Late Life Choices in Context

In the 25 years since Aronson asked “Are we really listening?”, and Moody and Gubrium made their comments about the limitations of empirical-positivist research methods, the position of quantitative scientific methods in mainstream gerontology has strengthened, alongside the continued domination of the biomedical model of ageing (Phillipson 2013, pp. 132–136). Notwithstanding this continued direction within mainstream gerontology, the methods and ideas that Moody and Gubrium proposed have been retained within critical gerontology. Under the aegis of age studies (Gullette 2017, p. 16) they are now being incorporated into an expansion of cultural and humanistic approaches to ageing that respect the experiential narratives of individuals (Baars and Phillipson 2013, p. 1). At the same time debates are ongoing about how to include the influence of structural and political power on the ways in which older people choose to present themselves in the world, or to live their lives, contextual concerns viewed as missing from mainstream narrative approaches to voice (McKenzie-Mohr and Lafrance 2017; Powell and Wahidin 2006, p. viii; Twigg and Martin 2015). Gilleard and Higgs (2005, p. 161) point out that “as state policies attempt to shift responsibility for income replacement after retirement toward the individual, the resulting risk and uncertainty this poses then problematize the agency that this generation once celebrated …”. So, for example, some in late life, whose financial circumstances provide them with desirable options, may choose to live in separate retirement communities where they can buy services. Thus they limit their overt demands on family, friends and the state. Katz adds to this point: “older people understand that the expectations for them to be active present a more complex issue than that suggested by the typical positive/negative binarism inherent in activity programs and literature” (Katz 2005, p. 136). For instance, a woman called Agnes recalled how, when she first retired, “I thought I have to keep going – got to make a contribution – make sure your life is worthwhile. And now I still have to struggle 180 J. R. Harbison with days when I feel I’m not doing anything” (p. 133). However, she also felt external pressure to participate and said “it isn’t that I want to be nonactive, though, it is that I want to choose” (p. 134). Other older people may continue to engage with the communities in which they live by prolonging their working lives especially when they lack sufficient income to meet their needs or comfort, or by taking on roles as volunteers or advocates for various causes (Hall 2005), or by focusing on late life learning (Katz and Laliberte- Rudman 2005; Formosa 2014). Yet others may prefer relative social isolation in which they pursue their own interests (see Chap. 11). Or they may be resigned to their isolation because of limitations brought about by geographic isolation, ill- health or poverty, or minority status, and the failure of the state to address these adequately (Canadian Centre for Elder Law (CCEL) 2013).

11.4.1 Being Activist in the Mainstream

These late life choices or lack of choices are presented in many ways by their pro- tagonists, whether these presentations reflect conscious intent, or not. For instance they may be used to challenge the negative stereotypes of ageing. The Raging Grannies are older activists who take on the personas of stereotypic older women – “grannies” who dress up in shawls and other old-fashioned clothing seen as desig- nating old age (Woodward 1991). This is an intended irony. In their actions they defy the stereotype. They give voice to their fight against a chronologically defined normative old age identity “I am a person. I am not an older person … I don’t identify myself by my age” (Hall 2005, p. 128). Another woman participant said “I’m not a senior. I’m only [in my eighties]… we did go down to [a local seniors’ centre] once … and I thought ‘oh, no, I’m not old enough to go here – they’re too old for me’” (p. 129). Yet another woman’s words provide a summary of the tensions experienced in asserting a positive identity: “Sometimes you’re somewhere and people ignore you. White hair, and you’re old, but I don’t pay any heed to it. If there’s something to say I’ll say it, and I stand up straight … I stride down the street … (p. 121). The Grannies wanted to remain part of the societal mainstream in order, as one said, to “feel what I am [inserted] doing is important” (Hall 2005, p. 104). So the issues they address reflect mainstream activism. For instance, they engaged with a wide variety of problems relating to race, gender, poverty, health, and education, with special reference to discrimination against Aboriginal and other racial-cultural minority groups, violence against women, gay marriage, and child abuse. What they did not give voice to in public were concerns relating to their own experiences. Of those they said that they did not want to be seen as “self serving” or “feeling sorry” for themselves (p. 183). Although they were aware and “[felt] badly” that being old included being “vulnerable [and]… relatively powerless” (p. 150), and being “piled (sic) with drugs” without due care about their efficacy (p. 152), they did not identify with those who were mistreated. Instead they distanced themselves by “othering” 11 Are We Really Listening? Ageism, Voice, and Older People’s Diversity in Nordic… 181

(van Dyk 2016) these peers: “They obviously wouldn’t be somebody like myself and another dozen I can think of who live in their own homes …” (Hall 2005, p. 153). Thus this group of older people clearly articulate that they do not identify themselves as members of a chronologically defined collectivity, or see it as their responsibility to be activists on behalf of chronological peers. Instead, they seek through their activism to maintain positive identities through their links to younger generations.

11.4.2 Avoiding Censure to Protect Their Future Care

The participants in Jumisko’s (2016) study of state-funded home care in Northern Finland demonstrated that they felt a need to protect their future care by accepting limitations on what they desired in the present. Participants who wanted to “safeguard the ownership of their homes as their own territory, were sometimes forced to adjust to carers’ routines …” (p. 169). Participants chose to compare their own care favourably to their constructions of care in past eras, when “old ‘senile persons’ were left alone, excluded from society, and forced to take care of themselves” (p. 171). They were afraid of a return to these “inferior services” in the future. They therefore had a very cautious approach to voicing dissatisfaction. Sometimes they used humour to disguise their complaints or they told “trustworthy older, carers” about them. Even then they were reluctant to have their name used: “… I said don’t tell them … it results in bad pout [sic], that I have criticized them” (p. 171). So these older people overlooked indignities: “You can’t get help when you need it. You must manage it in some way. You must get the trousers up … and you can’t change the times in homecare, because [echoing the women in Aronson’s much earlier study] there are so many who need the same” (p. 172). If help from friends, family and community was unavailable the only other options were private and expensive and therefore either unacceptable or unaffordable.

11.5 Power, Oppression, and Voice in Later Life?

The examples given above illustrate that the way those in late life give voice in presenting themselves to the world are strongly influenced by contextual forces that incorporate mostly negative stereotypes of old age. These forces represent sites of power and it has been argued that this power is used both by societal institutions and by individuals to oppress older people (Owen 2006; Powell and Wahidin 2006). The reasoning surrounding this oppression and the processes through which this oppression occurs are complicated. Sometimes the reasoning is overt, for instance in matters of public policy where governments and their institutions continually declare the high cost and “unafford- ability” of providing adequate services to older people, especially health care 182 J. R. Harbison

(Vincent 2006). As we have seen these arguments are then internalized by older people and indeed by members of society in general. Scholars and others who dis- pute the actual costs with scientific facts are frequently not heard or their arguments are countered by alternative science (Kelley-Moore 2010; McDaniel and Rozanova 2011). Arguments that it is the manner in which health needs have long been defined, generated, and controlled by profit-seeking bodies such as pharmaceutical companies and corporate care providers are set aside (Ehrenreich 1978; Gullette 2017). Mainstream positions are also reinforced by health providers, other professionals, and academics, whose adherence to a belief in the efficacy of medical procedures, tests, and pharmaceuticals, may be influenced by both the strength of their belief in biomedical interventions and by self interest (Evans et al. 2001; Katz 1996). Recently, social and biological scientists have come together to make efforts to counter the dominance of purely biomedical perspectives on ageing through dem- onstrating how “social and biological studies of ageing can converge to provide a meaningful framework for progress in both understanding ageing and dealing with it in a positive manner” (Cox et al. 2014, p. 25). This comment was made by researchers who took part in the New Dynamics of Ageing (NDA) Programme which promoted multidisciplinarity through research collaborations in the United Kingdom and Europe. The NDA programme included an “Older Persons’ Reference Group” which, according to the programme director Alan Walker, “while rightly challenging at times, was also an essential ingredient in this Programme’s success” (2014, p. vi; but see Lansley 2012). Further, the NDA’s approach gives rise to the question: What are the effects of the entrance of academic and professional experts into every aspect of ageing and older people’s lives including, among others, matters of food, nutrition, exercise, sleep, incontinence, design of “user friendly” living space and tools that support autonomy and active living, and participation in the arts and their communities? Many NDA researchers were very mindful of this intrusion, referring, for instance, to giving priority to the “expressed needs” (Bradshaw 1972) of the older people and to a focus on empowering them by offering choices. Despie the positive intent of these acknowledgements and efforts to engage the older people involved, the argument can be made that these offers occur within frameworks of understanding created by health experts. That well-being as presented can only be achieved “through major or multiple behavioural changes in late life contribute[s] to a sense of impending identity loss for many old people [so that they] … feel trapped by solutions proposed to them” (Kaufmann 1994, pp. 55–56). In other words, their voices are once again contained within frameworks created by others. Foster and Walker (2015) reinforce Kaufman’s argument. They state that “rights to social protection, lifelong education, and training should be accompanied by obligations to take advantage of education and training opportunities and, wherever possible, to remain active in other ways”. The authors call for these strategies to be “empowering through both “top-down” and “bottom-up policy development (p. 87). Critics of the concept of empowerment (Ward and Mullender 1991) suggest such an approach is unlikely to succeed because, as Aronson argues, “… only when needs are politicized from below can we expect to hear ‘needs talk’ in open and reframed terms” (1992, p. 84). 11 Are We Really Listening? Ageism, Voice, and Older People’s Diversity in Nordic… 183

But how is this politicization to be achieved? The very diversity of older people in age, stage, health, wealth, culture, education, and political views, militates against their speaking with a collective voice. As we have seen from the examples above, many older people acknowledge the ageism within their social contexts, if not through their voices certainly through their actions. Yet even those older people who espouse activism are often reluctant to become visible in advocating for themselves (Aronson 1992; Hall 2005; Owen 2006). Older people’s rights are a subject of global discussion but they must be activated within a society that understands why the rights of those in late life matter (see Chap. 2; Harbison et al. 2016). Kohn (2009, p. 1114) suggests that “ageist attitudes” embedded in society mean that “lim- iting older people’s liberties might be seen as largely harmless and inconsequen- tial”. As a consequence Kohn argues for “the elevated treatment of rights [so that] …the rhetoric of rights can create political power” (2012, p. 22).

11.6 Voice and Authenticity in Old Age

11.6.1 Voice Contained

In speaking about their experiences the older people quoted above have indicated that in many instances their accounts are tempered by some level of awareness that within society they are viewed through the lens of negative stereotypes. In addition, those who engage older people in developing policies with regard to ageing, whether by intent or because of their methodological positions, too often overlook that their attempts to capture the voices of older people continue to cast people as “virtual vessels of their experience… [whereby] answers to research questions lie dormant in the respondent’s experience, to be secured by an objective … standardized methodology” (Gubrium 1993, pp. 49–50). In other words, the participants respond to the issues as they are presented to them, “… and not their self-defined experiences” (pp. 49–50). If they choose to make their points outside of the given frameworks they may be interpreted as having errors of judgement. Even when participants’ mental capaci- ties are not in question, they may be said to “…lack the ability to recognize certain types of behaviour as inappropriate within their personal lives” (Naughton et al. 2013, p. 1262). The issue here is not whether these older people understand, and are acting in their “best interests”, but that they are being judged by the health professional values of those conducting the research. If the boundaries of the frameworks within which older people’s opinions are heard do allow for the expression of their more authentic voices, they may present dilemmas for researchers and for governments. For instance, in a study of the mistreatment of older people, where participants were drawn from diverse ethno-racial, immigrant, and sexual-orientation communities, the researchers declared “… that it is vital to examine the subjective views of elder abuse held by older adults, particularly those in marginalized groups … in order to reveal … causes … and potential 184 J. R. Harbison solutions” (Ploeg et al. 2013, p. 398). However, when participants’ responses “… reveal[ed] the very broad scope of perceived types of elder abuse …[they] highlight[ed] the unresolved tension between such broad definitions of elder abuse and the need for precision in definitions” (p. 415). That need was predicated on the use of positivist empirical research methods that required such precision. The voices of older people in the study also posed dilemmas for governments – for the “broad scope” to which Ploeg and her colleagues referred included expressions of need that focused on new resources including larger pensions, alternative housing, jobs, and job training. It is of particular note that members of the groups in the study – marginalized older people – are those most likely to be cast by others as helpless victims. Yet the needs to which they themselves choose to give voice are those that would enhance both their autonomy and their contributions to the greater society. A study intended to identify “… barriers to the well-being of older women” emphasized diversity and membership in marginalized groups for its participants (CCEL 2013). A governing principle was that that “women are experts in their own lives …” (p. V1), and the study aimed to “address a gap in research with respect to the experiences of older women”. The methodology used was Participatory Action Research (PAR), “a participatory, systemic inquiry concerned with developing practical knowledge grounded in community”. The researchers note that a central tenet of PAR is that it “engages in many useful practices for allowing traditionally vulnerable populations to have a voice in the research process”. Notwithstanding the greater breadth of purpose of the CCEL study, its major findings were remarkably similar to those of the study by Ploeg et al. (2013) discussed above. The major barrier to the older women’s well-being and ability to participate and contribute in society lay in insufficient resources most notably their “poverty and lack of income security” (p. V11). So we might conclude that to live decent, fulfilling, and contributory lives, older people from marginalized groups need more resources in societies which increasingly claim that their economies cannot support existing demands for social welfare and services, especially those of their older members.

11.6.2 Voice, Accommodation, and the Avoidance of Authenticity

The discussion so far has indicated that the increasing proportion of older people in global populations has been blamed in most societies for creating a major dilemma in providing for their social welfare. This is frequently described in catastrophic terms – for instance, as a “silver tsunami” of need (Harbison et al. 2016, pp. 139– 140). At the same time some scholars argue that many of the costs to society that older people are said to generate have been manufactured in the market place to 11 Are We Really Listening? Ageism, Voice, and Older People’s Diversity in Nordic… 185 serve the needs of capital, in government policies for political-economic purposes, and in the professions as a matter of self-interest (Aronson and Neysmith 2001; Gilleard and Higgs 2009; Katz 1996). Indeed, recent research has emphasized the fluid nature of ageing and the possibilities of increasing the contributions of older people by “adding life to years” (Cox et al. 2014, p. 73). Nevertheless, we have seen that there is evidence that diverse older people accommodate the mainstream view of their burdensome economic costs to society, in how they live their lives, in how they present their needs – or fail –to present them, and in their demand, or lack of demand, for resources. In other words, many older persons avoid expressions of their “preferred” selves (Brown 2017, p. 226) as socially useful and significant human beings, opting instead to avoid, ignore, reframe, or deny, how they are viewed negatively in the wider social context. The effect is to reinforce their burdensomeness, among both the general public and older people themselves, and consequently their lack of entitlement to resources – a cir- cumstance that weighs most heavily on those who are poor. So, there are moral, ethical and social costs to societies of uninterrogated support for the idea of older people as predominantly a burden, as failing to contribute, and as lacking agency. There is no doubt that overcoming the structural forces that sustain the dominant negative stereotypes of those in late life is an enormous task. So far revisionist approaches to knowledge about ageing that serve to contradict these stereotypes appear to have had little effect on the overall negative perceptions of older people (see for instance Gullette 2004, 2011, 2017). Knowledge about older people’s positive abilities and contributions are offset by comparisons of their relative affluence to the financial uncertainties of disenfranchised members of younger generations. Most important in this neo-liberal era, are the opportunities that the decline and decay model of ageing provide for the growth of capital within the medical-industrial complex with regard to pharmaceuticals, medical technology, and the expansion of well-paid professional and academic careers with each new discovery about the biomedical aspects of ageing. Older people’s advocacy organizations might have been expected to take the lead in addressing discrimination. Instead, they have been critiqued as inhibiting fundamental change in both attitudes and policies regarding ageing and older people. For instance, when older people’s organizations such as the American Association of Retired Persons (AARP) “extend membership to anyone 50 and over” they are engaging in a form of age denial. They can assume the “youth, fitness, and the social capital” to participate in high cost vacations and to volunteer. So they promote images of successful ageing that portray older people as exhibiting “few if any visible traces of aging” (Beard and Williamson 2011, p. 30; see also Harbison et al. 2016, pp. 128–131 regarding a similar situation with regard to the Canadian Association of Retired Persons (CARP)). Although both AARP and CARP have successfully lobbied governments regarding pensions and other entitlements their emphasis on consumerism in the third age shifts their focus away from the needs those older people most in need of assistance 186 J. R. Harbison

(Gilleard and Higgs 2009). With regard to voice, the older people who are members of these organizations generally defer to the political and financial wisdom of experts acting in their “best interests” in achieving a good life in the third age (Laslett 1989). Moreover, in North America and elsewhere organizations such as the Alliance for Retired Americans (ARP) and the Gray Panthers that represent impov- erished retirees, and have broader, more structural concerns regarding social and economic justice and civil rights, have not garnered support from the mainstream of older people (Beard and Williamson 2011, p. 25; Gilleard and Higgs 2009, p. 282). Even when they do attempt to assert themselves in their own interests, older people may experience resistance from established institutions. This is illustrated in a United Kingdom study on the prevalence of elder mistreatment. It was funded both by an older people’s charity “Comic Relief” on behalf of “Action on Elder Abuse, a non-profit advocacy organization for older people”, and by the government’s department of health. The researchers were from King’s College London, and NatCen Social Research a United Kingdom a nominally independent organization that carries out research on behalf of both governments and charities. Disagreement arose between the researchers and the advocacy organization both with regard to the definition of mistreatment and interpretation of the prevalence findings. Action on Elder Abuse argued for a broader definition of mistreatment. The effect was to increase the prevalence estimate from 2.6% to 4%. A key point was that, politically speaking, the greater the prevalence the greater support for increased services (Harbison et al. 2016, pp. 109–110). The discussion so far suggests that older people have little appetite for confron- tational politics within a social context in which so much depends for so many, and on so many levels, on the continued perception of those in late life as defective and burdensome. This includes that of politicians, governments, profit-making companies in the medical field, health institutions, health providers and those in the academy. In an analysis of “pensioner political movements” in Western societies Gilleard and Higgs (2009) conclude that they “have failed to retain their influence” (p. 277). They argue that the failure of older people to take up identity politics follows not from “their lack of physical and material capital to be socially included (the central themes of old-age advocacy groups across Europe and beyond)” but from an oppression that undermines their positive sense of self and leaves them open to “their potential marginalization by the state and the market that constitutes the greater and more common injustice” (p. 291). Gullette (2017) explores this oppression in the manifestations of ageism that occur throughout society in individuals, families, the arts, the media and institutions. She concludes that for change to occur we must first acknowledge “the worst” of ageism. Then we as individuals of all ages must act against this ageism with a passion that can grow into collective action: “The right question is not, then grandi- osely. ‘What is to be done?’ but the pragmatic ‘What comes next for individuals?’ And, finally, what demand can come from a future mass collective?” (p. 193). 11 Are We Really Listening? Ageism, Voice, and Older People’s Diversity in Nordic… 187

11.6.3 Promoting Authentic Voice Through the Academy

Among critical gerontologists, including those in the arts and humanities, are those who have begun the search for ways to counter the oppressive factors that undermine older people’s agency. Some suggest, as does Laceulle (2017, p. 1), that “the creation of new cultural narratives is … needed, in order to repair these damaging factors, for instance by refusing the application of denigrating stereotypes, by repu- diating them in social contexts or by actively contesting the damaging consequences of these stereotypes in public” . Laceulle (2017, p. 5) also argues that the process of creating these new cultural narratives will involve older people “… taking an active, agential attitude toward the socio-cultural forces that co-constitute who [they] are”. For example, the value that older people’s experience contributes to the workplace is emerging in the public discourse. In the terminology of “cultural narrative” this might be considered a “big story”. It is one that affords an opportunity for older people both as a group and as individuals to authenticate their “small stories”. Gullette (2017) too, suggests that such individual experiences can be merged into collective ones. Together older people can begin to transcend their lack of inner self-worth by acknowledging to themselves the value of their knowledge and experience, and by insisting on its positive evaluation by others both in their public and private worlds. Members of the academy from the arts and humanities who join in the development of critical gerontology can have particular roles in engaging revisionist por- trayals of the facts and nature of ageing. Specifically, innovative participatory methods in explorations of ageing can support the growth of older people’s agentic selves and positive identities (McKenzie-Mohr and Lafrance 2017; Tanner 2016; Ziegler and Scharf 2013; see also Chaps. 7 and 12). Once again, especially in the light of a renewed interest in ageism from mainstream gerontology (Ayalon and Tesch-Römer 2018), it is important to be aware of subtle ageist assumptions, as well as the many-layered nature of older people people’s lives, in order to avoid replicat- ing existing forms of ageism (Biggs 1997; Bytheway et al. 2007; Katz 2005; Woodward 1991). These approaches also leave open the question of how to encourage older people to give voice to their struggles with aspects of their lives that may be existentially troublesome, including experiences of increasing dependency that challenge their autonomy. For instance, as they engage with the transition from the relative well- ness of the third age to the frailities associated with the fourth age, how can those who become in need of care services continue see themselves, or be seen, “[not as] dependent objects of care [but] instead as agential subjects of their own – inescap- ably vulnerable – lives” who are legitimately served (Laceulle 2017, p. 7; Aronson 1992; Aronson and Neysmith 2001)? How can they be supported in asserting the legitimacy of their collective needs for service, a position that reflects a moral and ethical stance that, whatever their frailities, as a group they should still be seen as persons with rights to have their needs adequately met (Higgs and Gilleard 2015; Gilleard and Higgs 2017)? 188 J. R. Harbison

An argument can be made that by voicing demands to have the rights of their collectivity addressed those in late life can contribute to the moral and ethical welfare of society. Important in this view of the voices of older people is that they cannot then be seen as engaged in an individualistic enterprise focused solely on self-realization and dismissed as narrow self-interest. Instead, individual actions can be viewed as truly agentic when they serve to assert the positive identity and needs of older people in general (Neysmith and Macadam 1999) despite the fact that there is no naturally occurring collective identity for those in old age. Moreover, they also meet philosopher Charles Taylor’s criteria for authenticity (1991, pp. 40–41). That is, one’s authentic identity can only be defined: against the background of things that matter … Only if I exist in a world in which history, or the demands of nature, or the needs of my fellow human beings, or the duties of citizenship, or the call of God, or something else of this order matters crucially, can I define an identity for myself that is not trivial. Authenticity is not the enemy of demands that emanate from beyond the self; it supposes such demands.

11.7 Conclusion

If in our ageist society we in the academy truly want to listen to what older people have to say about their lives, in a way that contributes to their emancipation – and to encourage others to do so – we must first acknowledge and struggle with our own ageism. Respect must be central to the approach, in particular respect for the remark- able diversity of those in old age. Their voices should be heard first as human beings, and not contained within frameworks that are primarily intended to further the ends of researchers, academic institutions or governments. The development of innovative methods of connecting to authentic voices will be crucial to this work. So, expert constructions of their needs must give way to searching for the older person’s own views of his or her life. The implications of these views including those that challenge the status quo should be acknowledged with the older person so that opportunities for the development of agency can be explored and supported. These actions can assist in laying the groundwork that will allow those in later life to emerge, in whatever context they inhabit, as agents for a better society.

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Mai Camilla Munkejord, Walter Schönfelder, and Helga Eggebø

Abstract What is the meaning of active ageing in the daily life of frail older people in need of comprehensive home-based care services? This chapter addresses this question using in-depth interviews with women and men aged 70–97 in Northern Norway. The chapter illustrates first, that some older women and men actually prefer to age actively within their home by doing activities such as reading books, solv- ing Sudoku, watching TV and watching birds at the bird feeder. Second, it illustrates the key role potentially played by the next of kin in helping older relatives with different practical issues that may have major impacts on their social well-being. Third, we provide evidence for the limits of public care services in supporting older people with no or few relatives who, also when they become frail, still desire to engage in activities and meetings outside of their homes.

Keywords Active ageing · Everyday life · Home-based care · Northern Norway

M. C. Munkejord NORCE, Norwegian Research Centre, Bergen, Norway e-mail: [email protected] W. Schönfelder UiT, the Arctic University of Norway, Tromsø, Norway e-mail: [email protected] H. Eggebø (*) Nordland Research Institute, Bodø, Norway e-mail: [email protected]

© Springer Nature Switzerland AG 2019 193 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_12 194 M. C. Munkejord et al.

12.1 Introduction

We live in an ageing society. Although ageing is a multifaceted phenomenon, and being older by no means inevitably entails ill health, we do see a growing number of frail1 older people in need of care services, especially in rural parts of the Nordic countries (Bygdell 2014; Ness et al. 2014). According to the active ageing policies that are on the agenda in both Europe and Norway, people are increasingly expected to age in an active manner (Jacobsen 2015, 2017). Although the term active ageing has only recently come into common use, it may be observed as a variation of other policy terms such as “positive ageing”, “successful ageing” and “healthy ageing”, used for the past 20–30 years in policy documents on ageing and care (Ranzijn 2010; Jacobsen 2015). However, what does active ageing mean? According to the abridged English version of the Norwegian white paper 34 (2012–13, p. 43), “active and secure ageing is not just about health services and care for the elderly (sic) – it is also about participation in physical, social and cultural activities.” An important question, however, is if older people themselves want to age actively in ways defined by current policies, especially when they experience sickness and increasing loss of functional abilities. In this chapter, we ask the following question: What is the meaning of active ageing in the daily life of frail older people in need of comprehensive home-based care services? We draw on in-depth interviews with men and women in their 80s and 90s in Northern Norway to highlight their everyday life experiences. In particular, we emphasise what kind of activities they engage in, their care needs, whether these needs are met and, if so, how and by whom. Our findings suggest that active ageing in terms of engaging in social relations and meaningful activities is important for older women and men. However, as this chapter will show, one does not have to leave the house to live an active everyday life. Rather, some of the participants in this study simply enjoyed being active while staying at home. They hardly ever left the house and did not wish to do so, either. These participants rather spent their days reading books or magazines, watching sports or soap operas on TV, thinking about the old times, looking out of the kitchen windows to observe what was going on, or watching the sparrows at the bird feeder, in addition to socialising with visitors such as relatives or care workers who came to provide services. We observed that in addition to comprehensive public care services, these participants received substantial support and help from relatives and, to some extent, neighbours. We also analyse examples of users of home care services who express their desire for support to pursue a more socially and physically active life while being confined to inactivity in their own homes due to the limits of social care services provided by the municipality. Hence, this chapter illustrates three points. The first of these is that it is possible to age actively in ways not considered by public active ageing policies. The second is that next of kin may have a major impact on the social well-being of frail older women and men. The third is that the public in-home care does not necessarily allow them to realize a wish of active ageing outside of their home.

1 By frail, we mean ‘weak, infirm and in need of regular care’. 12 Voices from the North: Stories About Active Ageing, Everyday Life… 195

In the following, we will give a brief overview over relevant research on ageing and care for older adults in Norway before presenting our methods, data, analysis and conclusions.

12.2 Background

In Norway, everybody has the right to receive public health and care services at a relatively low cost, no matter where they live (Kröger 2005; Vabø et al. 2013). Approximately 25% of people older than 67 years receive public nursing or other care services, most of whom continue to live in their own homes (Mørk 2013). The trend towards ageing and being cared for at home may be explained by the fact that it is more cost-effective for municipalities to provide home-based rather than institutional care (VID and Kaupang 2016). Furthermore, many persons who need nursing and practical care services actually prefer to stay at home – particularly if their only alternative is to move into a room in a nursing home (Berge 2017; Ness et al. 2013; Ward et al. 2008). In Norway, the responsibility for providing care is delegated to the municipalities, which offer home-based nursing care and home-based practical assistance. Whereas nursing care is about monitoring health and ensuring that users receive medical follow-up during their rehabilitation or illness, practical assistance includes services such as helping the user with getting up in the morning and going to bed, dressing and undressing, meal preparation, assistance with personal hygiene. Practical assistance may further entail cleaning tasks, such as washing floors, washing dishes, and doing the laundry (Otnes 2015). In addition, and according to Norwegian law, the users’ social care needs also have to be attended to by the municipal home care providers (Kjellevold 2012). Social care, however, is a poorly developed field in municipal home-based care today (Munkejord et al. 2017; Skaar et al. 2010; Skatvedt and Norvoll 2016). Hence, in recent years, the provision of home care services in Norway has increasingly prioritised health-related nursing care at the expense of social, and to a certain extent, practical care needs. This trend can also be found in other countries, such as the UK and the US (Patmore 2002; White-Chu et al. 2009). Traditionally, care for the frail women and men was mainly the responsibility of female family members. Although often referred to as “invisible care” (NOU 2011:11, p. 16), family care is still important today. Thus, about half of those receiving municipal home care services also receive substantial informal care on a regular basis (Otnes 2013, p. 90), and estimates indicate that the amount of informal care is equivalent to that provided by formal (municipal) care providers (NOU 2011:11, p. 16). Thus, while providing care services for older people in Norway is a legal public responsibility, many women may experience strong expectations to assist a frail parent, sibling or another close relative (Gautun 2007; Daatland and Veenstra 2012; Alvsvåg and Tanche-Nilssen 1999). 196 M. C. Munkejord et al.

12.3 Methods and Data

12.3.1 Selection of Participants

This chapter draws on empirical findings from the project “Ageing at home. Innovation in home-based elderly care in rural parts of Northern Norway”.2 A team of three researchers collected data in two municipalities characterised by a small and sparse population and a geography and topography that pose challenges for the provision of municipal home-based care in terms of accessibility and travel time. The leaders and employees of the municipal home care services were helpful in the process of establishing a strategic sample of respondents. In total, 11 men and 17 women aged 70–97 were interviewed3 for the purpose of this chapter. These participants were selected based on the criteria that according to the home care services, they were not living with dementia and were healthy enough to participate in an interview. The majority of these participants lived in their own homes, located between 5 and 50 km from the municipal centre. Nine of them had recently moved, either into a municipal sheltered home (six) or to a municipal apartment (three). Some of the participants officially lived alone, but had one or several relatives, children, grandchildren or others, living with them for parts of the year. In total, we interviewed three couples who lived together. Among the other participants, two were divorced, one had always been single, one had lived in a multigenerational home in which the parents and siblings had either died or moved out, and two had a partner who was living either full-time or part-time in a nursing home. The researchers brought flowers or chocolate to each participant and were themselves offered coffee, and sometimes also something to eat, during the interviews. This approach created the feeling of an “ordinary visit”. Some of the participants expressed great pleasure in having a visitor and some conversation. Some of the participants had received higher education or vocational training certificates. Among this group, the women had held the positions of telegraphist, teacher and nurse, whereas the men had held the positions of principal and public administrative officer. However, the majority of the participants had received only compulsory education. Some of them noted that there had been no money to pay for their education after they had completed primary school. Among this group, the men had worked e.g. as a driver, as a janitor, in construction, or in a mine; some had worked as fishermen or had combined (river) fishing with sheep farming. Some of the older women we interviewed had never held a permanent salaried position. But, in addition to their work in their homes, where they looked after children and the

2 The project is financed by the Regional Research Programme of Northern Norway (RFF Nord) for a period of 3 years (2016–2019), project number 257019. 3 Additionally, as part of the larger study, we also interviewed some younger relatives, employees of the municipal home-care service, leaders of the care services, and representatives from the voluntary sector who were involved in organising meeting places and activities aimed at retirees in the two municipalities. These other interviews are not directly referred to in this chapter, but their data constitute relevant background against which the voices of our participants have been analysed. 12 Voices from the North: Stories About Active Ageing, Everyday Life… 197 animals on the farm (if any) and where they made clothes and prepared meals, they had occasionally earned some income from, for example, part-time cleaning jobs or from selling clothing that they had sewn or knitted.

12.3.2 Analysis and Ethics

The analysis of the interview material was a collective process. We collaborated closely during the analysis by organising a workshop in which the three researchers came together to examine the data material. We used a twofold strategy. First, we presented a summary of each interview and identified themes. We mapped a large number of subjects and thereafter discussed what we considered the main themes and subthemes. After this initial round of analysis, we defined the specific research questions to be addressed in future publications. Second, for the purpose of this chapter, we analysed the interviews with the older participants once more with a focus on how they talked about their everyday lives, the activities in which they engaged, the social relationships they maintained and how they maintained them, their care needs, who met these needs, and whether and how they talked about unmet needs. During this second round of analysis, we were interested in identifying patterns and variations across the interviews: what did our various participants say about these issues? Were there differences in their experiences related to e.g., whether they had family members living nearby or whether they lived in a remote place, as opposed to the municipal town centre? We obtained informed consent from all of the participants after having provided them with written and oral information about the study. All names used in this chapter are fictional. In the following, the experiences of four of our participants will be analysed in particular detail as they contribute to shed light on our research question in a particularly clarifying way.

12.4 Results: Voices from the North

12.4.1 Meaningful and Active Everyday Life – Within the Home

Marit (aged 90) and Oskar (aged 86) both lived in their original homes far from the municipal centre. Both were widowed and had been so for a long time. They were quite frail, in the sense that they had reduced functional abilities and needed a walking frame to move around in their homes. Both of them had back problems and/or laboured breathing. Oskar needed help going to bed in the evening and getting up in the morning, whereas Marit was able to do so herself. Both of them had several health issues and needed medications of various sorts. 198 M. C. Munkejord et al.

When talking about their everyday life, both Marit and Oskar stated that they spent their days with various activities within their home. Oskar said that he liked to sit by the kitchen window to observe what was going on outside. There was always something to look at – cars passing by, birds or the weather. He also liked to read books about local history, in particular about what happened in Finnmark and in the Barents Region during World War II. Marit stated that she treasured watching the birds in the garden. She had seven different bird feeders strategically placed in front of the kitchen and the living room windows. She also liked watching TV and solv- ing Sudoku puzzles. In addition, she had a passion for books: Researcher: You told me that you like to read. What do you read? Newspapers, or? Marit: Newspapers, yes, and this kind of (she shows a book to the researcher)… Researcher: Right! (The researcher reads the title of the book and identifies it as a book in a series): So, you read serial novels? Marit: Yes! Researcher: Great! Marit: Yes, I read six different series. Researcher (laughs): Really? Marit: Yes! Researcher: That is so fun! I think it is really good for the brain to read as much as you do! Marit: Yes! So I get them by mail, and I am able to keep the stories apart from each other. Marit continued to talk a bit about the different series she was reading. It became obvious that keeping the stories apart from each other was more than just being able to read several books at the same time. For Marit, following six different storylines was a confirmation for herself of her own mental activity and her ability to catego- rise these storylines in each their own literary context. We regard this mental activity as an expression of active ageing not included in the public discourse on active ageing. In another part of the interview, she explicitly said that she did not attend social gatherings or meetings for seniors because she “did not need that”. In fact, neither Marit nor Oskar participated in the weekly café for seniors organised by the retiree’s association in the municipal centre nor were they involved in any other senior or cross-generational activities outside of their homes. Both explained that they hardly ever went out. In fact, Marit said that she did not leave the house at all other than for her regular visits to the GP accompanied by a relative. Additionally, Marit declined when offered a place at the municipal Day Care Centre where her daughter sent an application on her behalf. The municipal Day Care Centre was a low-cost meeting place provided for a selected number of older persons who would come together for some hours one or several days per week to take part in social activities, drink coffee and have dinner together. As Marit explained, she preferred her own company.

12.4.2 Social Well-being – Within the Home

In addition to engaging in activities that they described as quite meaningful for themselves, mainly in their own company and within their own homes, both Marit and Oskar socialised a lot with relatives on the phone. Furthermore, various people 12 Voices from the North: Stories About Active Ageing, Everyday Life… 199 visited them on a regular basis. Whereas Oskar received care services from the municipality three times a day, Marit received daily dinner at her door, help taking a shower once per week and regular cleaning of her house from various municipal employees. In addition, their relatives had contributed substantially with meeting their practical care needs. Marit received different types of practical help on a regular basis from various people. Her son, for instance, had adjusted her house according to her particular needs to enable her to move around the main living area with her walker. Everything that she needed had been moved to the main floor so that she no longer had to try to climb the stairs. Her son had modernised her kitchen, so she could use the kitchen worktops while having the most important equipment within reach. He had also installed a heat pump. Marit’s grandchild bought and brought home her groceries every week, such as bread, biscuits, coffee and milk. Her relatives, moreover, helped her put bird food on the bird feeders in the garden and her post and newspapers were delivered directly to her front door, while the driveway was cleared of snow by a neighbour during the winter months. The story of Oskar illustrates similar points. Like in Marit’s case, his house had been adapted: A relative had built a ramp at the entrance to allow Oskar getting in and out of the house while using his walking frame. The thresholds had been removed from the doors between the rooms to prevent stumbling. Among other aids he had a handrail by the bed and in the shower, and armrests attached to the toilet. In addition, he had a security alarm around his neck. Moreover, his adult daughters helped him in many ways, Oskar explained; they cleaned the house, did the laundry, and helped keeping the garden in order. In both Marit’s and Oskar’s cases, it was obvious that their relation to their relatives was crucial. Both told us about various relatives who regularly came by or even came to stay with them for shorter or longer periods. Oskar said that his daughters often came to visit and that each of them used to stay with him for days or even weeks at a time. The same was the case with Marit, as illustrated in the following excerpt where also her daughter Linda was present: Researcher: What, are you saying that your grandchildren pop by every day? Marit: Yes, I even have a grandchild who lives with me when she [Marit nods towards Linda] is not here. Researcher: Really? Whose daughter is that grandchild? Marit: That’s [my son’s] daughter. [Marit continued to talk about other issues. A bit later in the interview, we came back to this issue:] Researcher: Do you feel safe here in your home? Marit: Yes, I do. But, I don’t like to be alone during the night. Researcher: Right, so that’s why your grandchild has moved in here. Marit: Yes, so that is all very well. Researcher: How old is [your grandchild]? Marit: She is 28, so she is an adult. Researcher: Right, she is an adult. So, you don’t like to be alone during the night. Has it been like that for a long time? Marit: Oh yeah, for a long time… I was… After my husband died [20 years earlier] I was alone of course… 200 M. C. Munkejord et al.

Researcher: …Yeah, you had to… But, you did not like it? Marit: Well, it was ok in the beginning because I was young and fit, so I would have been able to run out of the house in case of fire or anything. Now, that is not so easy anymore. That’s why I like to have someone with me in the house at night. Researcher: That is a very good arrangement. Has it lasted for a while? I mean: for how long has [your grandchild] slept here during the winter? Marit: It must be two or three years or something like that? In the excerpt above, we see that Marit explained that she had become a bit worried about sleeping alone in her house in case of a fire or similar hazards. In another part of the interview, she explained that it was most important for her to have someone in the house during the winter, because the darkness made her particularly anxious. As we observed above, Marit’s grandchild, a single woman in her late 20s, had moved in with her in recent years; moreover, during the coming winter, this grandchild was planning to move into her house, which was essential for Marit to be able to stay home for yet another year. Likewise, during the summer, Marit’s daughter used to come to stay with her as long as she could, normally between 1 and 2 months. Hence, although Marit formally, and according to the leaders of the municipal care services lived alone, in practice, this was not really the case. In addition to substantial social and practical care from family members, Marit and Oskar received quite a lot of care services from the municipality. In Oskar’s case, a healthcare worker called in every morning and evening to take his readings, make an evaluation, record an assessment, and check the oxygen bottle and the breathing machine. Oskar usually took some of his medicines in the presence of the healthcare worker, whereas other medicines were prepared for him to take with his next meal. In addition, the healthcare worker used to prepare a light meal before leaving, which Oskar could eat whenever he felt hungry. The following extract gives insights into Oskar’s daily contact with his health care workers: Researcher: Are they often here to look after you? Oskar: The nurses? Researcher: Yes. Oskar: Morning and afternoon. Researcher: Yes. Oskar: Morning and afternoon. And during the night, The Sandman is coming… (Both are laughing) Researcher: So, what do they do? They help you take the medications… Oskar: Yes, they give me medications, they give me food, they do the bed… And they want to give me a shower, but I don’t want that, yet. I rather take care of that myself… (The researcher laughs). Researcher: Do they do anything else, as well? Do they help you with anything else? Such as cleaning the floors? Oskar: My daughters take care of that. Researcher: Right, your daughters do that. Oskar: Yes, they do enough cleaning. Thus, both the municipal care workers and his daughters supported Oskar in many ways. As in Marit’s case, the close contact and well-established distribution of work between Oskar’s daughters and the public home health care services made it possible for him to stay at home, which, for Oskar, was the preferred over moving into the local nursing home. 12 Voices from the North: Stories About Active Ageing, Everyday Life… 201

To summarise, both Marit and Oskar received a relatively large amount of municipal care services. However, despite this substantial public support, neither of them would have been able to live in their own homes without the comprehensive supplementary care and support from their next of kin. Marit’s and Oskar’s relatives thus played a key role in helping with all kinds of practical issues, and in addition highly contributed to their social well-being and made them feel safe at home.

12.4.3 Social Well-being Outside the Home -Not All Needs Are Met

Most of our participants told us that overall, they were satisfied with the help they received from the municipality. The participants who had their medicines delivered to their door with the appropriate dosages in medicine organisers highly appreciated that; and those who had dinner delivered to their doors said that the meals were varied and good. They also appreciated that home help staff came to do some cleaning in their homes or that someone came to help them with a weekly shower. However, some of the participants in our study noted that not all of their needs were met. Several participants mentioned that they needed help with shopping for groceries, transporting their purchases home, and putting them in drawers and cupboards. Other unmet needs for practical help mentioned included assistance with buying and carrying wood inside the house, cleaning beyond the usual, changing from winter curtains to summer curtains, window cleaning, gardening and more. For such practical tasks, the Norwegian care system entitles citizens to apply for care services on an hourly basis to manage the activities of daily living. However, several participants indicated that they did not know what kind of services they could apply for, or how to apply. In most cases, their relatives or even staff in the municipality had helped them apply for their current or past services. As illustrated in the following section, the granted services did not allow all of our participants to maintain the active everyday life that they wanted to uphold. Distance and mobility, particularly in a rural context, are challenges that are tackled differently in different stages of life. In this study, the local shopping mall was by several participants described as an important arena for socializing. But a simple task such as going shopping could for many reasons suddenly require considerable or even insurmountable logistical effort (e.g., the driver’s license was not renewable due to age-related ailments, public transport was not easily available, or asking for help from someone in one’s own social network was considered difficult). With increasing frailty, geographical distance was all too easily coupled with social distance, making the ideology of active ageing outside of the home hard to achieve for some our participants. To illustrate some obstacles for aging actively caused by unmet care needs, we will start with the story of Laila (aged 83). Laila lived in a remote part of the municipality. Most of her former neighbours had left over the years with the exception of 202 M. C. Munkejord et al. two of her children and her son in-law. During the last few years, Laila had been very much on the move commuting to the municipal centre to visit her husband, who was admitted to the nursing home 6 years earlier. Laila’s husband however, died a few months before our interview. Laila had never owned a driver’s license. This was not previously a problem, because she adjusted her visits to the municipal centre to the schedule of the school bus, which she used for travelling. Moreover, during school holidays she had applied for, and obtained from the county administration, something called “taxi for bus” which meant that she could call for a taxi to come and fetch her and bring her back home once a week for the price of the bus tickets. When her husband lived, she used to visit him between one and three times a week. Sometimes she stayed overnight in her husband’s room at the nursing home and returned home with the school bus the next morning. While visiting her husband, she also used to take a coffee and spend some time in the arbeidsstue, a local Day Care Centre for older people located within the nursing home facilities. Laila described these combined visits as significant events in her active everyday life: When I meet others in the corridors, they ask: (…) Are you at the Day Care Centre? Yes, I am. Then they ask if I get paid for it! Paid? Are you supposed to get paid for voluntary work? And they don’t get it. When they don’t do this kind of work themselves, they don’t understand how important that is. It’s meaningful to those who receive and to those who give! There are many people who have just as much time as me, but they are not there (at the Day Care Centre). And I see how happy the old people are to get some sweets, an ice- cream or a flower vase. So, they lose a lot, those who don’t engage in volunteering. In this narrative, Laila did not present herself as a participant but rather as a “volunteer” at the Day Care Centre. On one hand, she used to come there to spend time with her husband, but on the other hand, and more generally, she was there to contribute to the well-being of the other “old people” going there. At the time of the interview, she still travelled to town to buy groceries and do visit the Day Care Centre at least once a week. However, since her husband died, she described her life as increasingly secluded, as revealed in the following extract: Researcher: If you look forward, is there something you need help with, in order to be able to continue living at home? Laila: No, not yet. But I have some thoughts about what fall will bring. I’ll see what the doctor has to say about my health, and then we’ll see. But, I am also thinking – well, I am the kind of person who likes to socialise. And now, since my husband passed away, it has become pretty desolate here. So, I’m sitting here all day, and all these strange thoughts are coming, and my good mood seems to disappear. My good mood always used to keep me going. It was a tough time after he got so sick. (…) And I think for myself; is old age really supposed to be like this for people who have worked as hard as I have? With the death of her husband, the social justification for continuing her efforts to tackle the challenges posed by geographical distance to reach the municipal centre partly disappeared. Laila also lost some of the energy and meaning she got from spending time as a volunteer at the Day Care Centre. Suddenly, she felt that she had actually become an older person herself increasingly confronted with the challenges of frailty and growing care needs. As Laila described in the following excerpt, the 12 Voices from the North: Stories About Active Ageing, Everyday Life… 203 possibilities for realizing her views of active ageing were partly compromised by the fact that the municipal home care personnel did not view it as their job to meet her practical and social care needs: But now, when I start needing help from the system, she (the head of the municipal care services) says to me, no, if I choose to stay out here, I cannot expect to receive help from the home care services, because it is so far for them to drive. Then one has to move. – But where am I supposed to move to, I ask? Well, they are going to build flats for older people at the municipal centre in two years’ time. But two years from now, that doesn’t help me. But still, I can’t get help from the home care service. When my husband died, I needed help from home nursing for medicines and such. But they couldn’t bring them out to me. Those medicines, I had make sure to get to the pharmacy to pick them up by myself. Earlier tasks that Laila had been able to take care of as part of her regular visits to the municipal centre became a challenge after her husband died due to her own increasing health issues. She also said that she needed, but did not yet receive, help to put on the compression stockings in the morning. Hence, at the time of the interview, Laila explained that she spent considerable time and energy wrestling with a care system that did not want to meet her needs and that, as she felt it, even prevented her from being a resource for others e.g., at the Day Care Centre where she previously had spent so much time. The second narrative we want to present to illustrate how unmet care needs may contribute to increasing social isolation is the story of Berit (aged 94). Berit received daily visits from municipal care providers early in the morning, who helped her get dressed and change her incontinence pads. During the day, Berit was quite independent. She told us that her most important tool for reaching and moving things around was a poker. Moreover, she used an office chair to move around inside the house and a walker to move around outside. A serious obstacle for the transition from inside to outside of the house were the four stair steps from the porch. However, Berit managed to overcome even that obstacle, although “not very gracefully”, as she put it herself, by sitting down and sliding from stair to stair. Moreover, despite her physical challenges, Berit emphasized that she used not only the main floor but also the basement: For example, to get down into the basement, I need to bend my knee to reach the last step in the stairs. But no way can I manage that. So, I have to lay down flat on the floor and shuffle over the floor until I am there, and then I manage to open the door. Nevertheless, despite the creative solutions allowing her to stay mobile and active in and around the house, Berit expressed a need for more care services than she actually received. She mentioned for instance that doing the dishes was demanding for her due to gout plaguing her hands. In addition, she had great pain in her feet when she stood still for too long. Whether she received help with her dishes or not depended on the individual care provider: There are those who do the dishes in the morning, but others do not. They say: You can manage that yourself! Yes, but they should know how much it hurts! Yes. It doesn’t show, but it really hurts. It’s pins and needles. No, they say, it’s just the gout. 204 M. C. Munkejord et al.

In another part of the interview, Berit was ambivalent about her relationship to the ideal of active ageing outside of the home: Berit: Earlier I was often out for the evening, at gatherings at the coffee house and such. It was nice to get out. But coming home again, that was another thing… All quiet. So I’m better when I just stay at home all the time. Researcher: Well, really? Berit: Yes. Researcher: Yes. Berit: Whenever they [the home carers] are here to help me wash and dress, I tell them I need to go to the Red Cross’ café. But they never respond. Their task is to help me wash only, so I better stay put at home. They say it would cost a lot, so they cannot take me out. To get out, I would have to organise it myself. Lisa [a home carer] usually asks me whether I have been out lately. Then I ask her: Do you help me get out of the house?4 In this account, Berit communicated different messages. She obviously valued her former visits to the coffee house, even if it was difficult to face the reality of her lonely life upon her return. However, even if she described a rather fatalistic perspective in her statement that it would be better just staying at home altogether, she had not given up hope for a socially active life outside of her home. This was clear not least in the strong appeal to the home care providers to help her to get out of the house. Berit’s request for more practical assistance from the municipality was met in different ways. One the one hand, her need for help with washing the dishes was responded to according to whom was on duty. Her need for assistance to get out of the house to see places and meet people, on the other hand, was mostly ignored altogether.

12.5 Conclusions

According to the Norwegian white paper 34 (2012, p. 43), active ageing not only concerns health and care services but also “participating in physical, social and cultural activities”. However, as illustrated in this chapter, some frail women and men simply enjoy being active at home, reading books or magazines, watching TV, thinking about the old days, looking out of the kitchen window to observe what was going on, or watching the various birds at the bird feeder. Importantly, the participants in our study who felt happy with staying at home and engaging in everyday activities in the home were quite physically disabled. Significantly also, in addition to the extensive home-based care services they received from the municipality, they obtained regular visits and informal care from relatives and others. In the other cases discussed in this chapter, we documented a need to better meet the social care needs of those in later life who are unhappy with remaining too much alone at

4 This last citation «Whenever they [the home carers] are here to help me wash and dress…” is also used in the article Eggebø, Helga; MC Munkejord and W Schönfelder: “Who we are and what we need: Older people’s stories about meaningful activities and social relations in later life”. In review in Journal of Aging Studies. 12 Voices from the North: Stories About Active Ageing, Everyday Life… 205 home. These participants explained that they wanted to go out, but obtaining the help needed to be physically mobile was very difficult. Hence, the ideal of active ageing could certainly be met in a better and more sensitive way among those who want to be physically and socially active outside their home to socialize, meet others and get around – but who need support to be able to do so. The main conclusion from our analysis is that the term of active ageing has more facets than those commonly highlighted in current policy papers. As we have illustrated with the case examples of Marit and Oskar, one does not have to leave the house to experience an active everyday life. Additionally, as we illustrated with the examples of Laila and Berit, those ageing at home who would like to go places and meet people may need support and encouragement to be able to accomplish this goal. There are various ways to achieve meaningful active ageing among frail older people. In a recent publication, Jacobsen (2017, pp. 10–11) points to a possible danger of an unreflected active ageing policy. He states that a consequence thereof may be “fewer services for the less active, who are made partly responsible for their own welfare and health, and also less help for the frailest whom no one expects to become activated”. “Active ageing” as a policy, in other words, runs the risk of marginalising older people who do not want or are not able to age actively as communicated in the narrow sense found in various policy papers. Our analysis supports this appreciation. Thus, if the ambition of developing more inclusive ageing policies in rural and urban parts of the Nordic countries is to be realised, the voices and the everyday life experiences of frail citizens themselves should be included and valued. Moreover, policies should reflect a wider perspective on active ageing according to the individual needs and preferences among the widely heterogeneous group of older women and men in the Nordic countries and beyond.

References

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Päivi Naskali

Abstract The purpose of this article is to study how gender and age relate to positions of power in municipal politics and examine the possibilities for and restrictions on old people’s political agency in the intersections of socio-economic status and gender. Politics is understood in a broad sense as including participation in municipal decision making, active involvement in organisations and engaging in voluntary work. Both quantitative and qualitative data were collected, comprising statistics on the age and gender of board members, chairpersons and managers in 21 municipalities in Finnish Lapland, as well as a case interview of a politically active retired couple. The results indicate that older people in the region actively take part in municipal politics and that older men in particular play an important role in decision making. The analysis of the interview identified the following conditions for active participation: education, participation in working life, economic situation and health. Ageism, resulting from the cult of youth and the politics of austerity, was interpreted as an obstacle to participation.

Keywords Age · Gender · Municipal politics · Participation · Finnish Lapland

13.1 Introduction

Despite increasing awareness of the heterogeneity of old people and talk about the ‘third age’, age studies have commonly focused on the problems and challenges of getting old. In this article, I am interested in the other side of the coin: the agency – especially the political agency and power positions – of older adults. I understand agency in the viewpoint of feminist research as everyday acts and deeds that get their meaning in the power relations of social and cultural expectations, possibilities and restrictions (Skeggs 1997). In the context of older adults, agency means actions and choices that old people are doing within the limits of their surroundings

P. Naskali (*) Unit for Gender Studies, Faculty of Education, University of Lapland, Rovaniemi, Finland e-mail: [email protected]

© Springer Nature Switzerland AG 2019 207 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_13 208 P. Naskali

(Jyrkämä 2008). The particular context I examine is Finnish Lapland, a region where the image of municipal power is predominantly male. In recent years, some female municipal managers have been appointed, but power has traditionally been the preserve of older men. I will assess whether this remains the case by analysing the proportion of older women and men in municipal decision making and examining the experiences of a politically active old couple. Research on older adults and political power remains rare; greater interest has been focused on younger generations’ declining interest in politics. The most extensive Finnish study on aged people and politics is the research carried out by Voitto Helander (1991) relating to the situation in the 1990s. In the field of politics research, there is a significant body of research on gender and politics in the parliamentary setting, but less attention has been devoted to the municipal level. The most significant study to date on gendered municipal politics (Holli et al. 2007) concentrated on ‘urban Finland’ and thus did not include Lapland, which with a population of 180,200 living in an area of 100,336 km2 is very sparsely populated. In an effort to unravel the complexities of social life and to avoid constructing homogenous categories, I draw on the intersectional research frame (Lykke 2005; Naskali and Keskitalo-Foley 2017). As a feminist researcher, I will concentrate on age and gender. I realise that these two categories are insufficient, as important differences in education, social position, ethnicity, health and sexual orientation must also be taken into account. However, for strategic reasons, identity categories such as pensioners and women may be necessary for political action. Gender is a category that can easily disappear because of Finland’s claim to be an equal country (Ylöstalo 2012). Gender blindness has also been typical in studies of ageing; as they age, people seem to lose their gender and sexual identity (Keskitalo-Foley and Naskali 2016; Thompson and Langendoerfer 2016). For example, Toni Calasanti (2004) found that gender was rarely discussed in American gerontology. In Finnish age studies, there are signs that this situation is changing: a great deal of research is being done on ageing at work, especially the case of older women and their social, caring and economic challenges (e.g. Julkunen 2003; Irni 2010), as well as on men and aging (e.g. Ojala et al. 2016; Hearn 2012). Some researchers promote an anticategorical viewpoint that refuses to predefine categories, instead understanding differences as ongoing differentiation (see McCall 2005). However, Sara Ahmed (2012) reminds us that existing categories do not disappear simply by saying that they should not exist; instead, we can be conscious of their changing character and of their strategic potential. Nevertheless, categories should not be understood as essential or ‘normal’ characteristics of people but as the results of historical and cultural processes of categorisation. The theory of performativeness helps in analysing the power of cultural representations, political institutions, discourses and social structures to essentialise and reproduce categories (see Karkulehto et al. 2012; Christensen and Jensen 2012). This approach identifies the gaps in social norms and the porous borders between categories that make transformation possible and open new spaces for action. Political participation has been defined as including activities that “aim at influencing political outcomes, changing the institutional premises for politics or 13 Old Women and Men as Political Actors in Finnish Lapland 209

affecting the selection of personnel or their choices” (Nygård and Jakobsson 2013, p. 67). Based on feminist political research, I understand the term ‘politics’ in a rather broad sense; it goes beyond the public sphere to encompass the agency of those who are not necessarily involved in party politics but may be active in organisations, associations and voluntary work (Kuusipalo 2011). In what follows, I will first ask how gender and age relate to power positions in municipal politics, starting with the distribution of gender and age in municipal decision-making posts in Finnish Lapland. Secondly, I will ask how an old couple describes the possibilities for and restrictions on older persons’ political agency in the intersections of socio- economic status and gender. This question will be addressed through a case study interview of a politically active old couple. The results indicate that older adults actively participate in municipal decision making, with men constituting the majority. However, their readiness to engage in political activity – stand for election, work in organisations and do voluntary work – is connected to their educational background and the status they had in working life.

13.2 Age, Gender and Political Power

13.2.1 Older People in Politics

Sherry J. Holladay and W. Timothy Coombs (2004, p. 384) claim that in American and British society older adults are seen as an omnipotent group that politicians fear, adjusting their decisions to reflect the wishes of senior citizens. Holladay and Coombs further suggest that the media in particular are responsible for portraying the older adults as ‘greedy geezers, grey peril and the deserving poor’, thus creating a picture of an age war or at least ‘intergenerational conflict’. This antipathy stems from demographic changes and the disadvantageous relation between the number of retired and working people, which is expected to lead to an economic downturn. This kind of discussion has also been seen in the Nordic countries, including Finnish Lapland, where the media have represented the aged persons as vulnerable people who constitute an economic threat to future development. In contrast to this image and in line with neoliberal ideology, official municipal strategies characterise old people as clients and consumers (Keskitalo-Foley and Naskali 2016). Thus, the older adults are seen in dichotomous terms either as a challenge to economic growth or as responsible individuals with significant political power. In the political domain, older people have been more active than younger generations, especially as voters (Helander 1991; Nygård and Jakobsson 2013), even though the majority of political decision makers are middle-aged. Voting is gendered: men vote mostly for men while women vote for women as well as men (Holli and Wass 2010; Nieminen 2005); for example, in the 2008 municipal election, 72% of men voted for men (Kuusipalo 2011). Many political declarations highlight the participation of older people in decision making, indicating that they are entitled to 210 P. Naskali participate in decisions concerning their own lives. Helander (1991) has interpreted this as patronising, noting that democracy postulates equal participation for all with regard to issues of every kind; just as young people can decide about eldercare, old people should be allowed to make decisions about child care, education and similar services. Older adults have tried to make their voices heard through political parties. In Finland, two political parties for pensioners have been established, the Suomen Eläkeläisten Puolue and the Suomen Senioripuolue, the former operating from 1985 to 1999, the latter from 1991 to 2011. Neither succeeded in getting representatives elected to parliament or to municipal councils, suggesting that people continue to vote according to their political ideology as they get older rather than according to their age group. This reinforces the view of Holladay and Coombs (2004) that older adults are assumed to constitute ‘a large homogenous self-interested voting bloc’, a ‘grey’ vote, even though they continue to vote in accordance with the political opinions and values they had before retiring. The researchers emphasise that ‘[p]olitical activity should not be confused with political power’ (Holladay and Coombs 2004, p. 384, see also Walker 1999). Finnish parliamentary discussions concerning the legislation for services for older people have also viewed older adults as a homogenous group. They have been excluded from us and defined as Others, those needing support from “our service system” (Pulkki and Tynkkynen 2016, p. 70). In doing politics, organisations for pensioners have been more successful than political parties. In Finland, there are 12 such organisations of different backgrounds and sizes; of these, eight have connections to political parties, and four are based on professional background, such as senior teachers (Helander 1991).

13.2.2 Gender Equality by Quota: The 1995 Finnish Equality Act

In Finnish politics, gender has not been seen as a significant issue because of the discourse on Finland as a pioneer of gender equality. According to neoliberal ideology, the question of gender equality has been resolved, given that the present government declared: ‘in Finland, women and men are equal’. Frequent reference is still made to Finland being the first country in Europe, in 1906, where women received the right to vote and to stand for election to parliament (Elomäki and Kantola 2017). In 1917, women also gained full rights in local elections; for a long time, however, the proportion of women in municipal councils was smaller than in the national parliament, not reaching ‘critical mass’ (30%) until as late as in 1992 (Holli et al. 2007). Moreover, even where women were elected to municipal councils, they were not elected to executive boards or as chairpersons. The Finnish Act on Equality between Women and Men (1986) prescribed that state and municipal bodies, other than those elected by popular vote, should include both women and men. However, the 13 Old Women and Men as Political Actors in Finnish Lapland 211

municipalities either did not adhere to this provision or selected one woman for each such body. Accordingly, a quota clause was added to the Equality Act in 1995 requiring that at least 40% of representatives of both genders should be appointed to municipal bodies, with the exception of municipal councils, which are elected by popular vote (Nousiainen et al. 2013). According to the quota provision, political parties had to ensure that they also appointed women to a variety of municipal functions. While this requirement caused resistance and gender conflicts, it brought young and well-educated women to boards that had previously been occupied mostly by older men. This led to claims of diminished expertise (Holli et al. 2006, 2007). Some men argued that the provision was unfair to qualified and competent men and suspected that women would be unwilling to enter politics because of their responsibilities as employees and mothers. This was also the case in Lapland, where the quota provision sparked intense public discussion. According to Anneli Pohjola’s (1997) analysis, women were not considered competent for executive positions and were evaluated as representatives of their gender rather than as decision makers. They were also judged based on their looks. What those objecting to the law overlooked was that the law applied to men as well, for example in the case of boards concerned with social and care issues. In recent years, the economic crisis and the politics of austerity have made questions of age and gender ever more acute in the European Union. In comparative research across Europe, equality is judged to be losing ground. In particular, gender equality has been subjugated to economics and neoliberal ideology, which views economic decisions as gender neutral. While politics in the early years of the mil- lennium was thought to have been feminised (Nieminen 2005), Anna Elomäki and Johanna Kantola (2017) claim that the direction has changed of late and that national politics in Finland has again become masculinised. This has happened because the government has focused on a few overarching priorities, all of which relate to male- dominated ‘hard’ sectors like the economy and technological innovation. In this changing political landscape, Finnish Lapland provides an interesting setting for analysing the gender and age distribution in local politics and for examining how the politically active old couple assess their position and their opportunities to contribute.

13.3 Data and Analysis

Both quantitative and qualitative data were collected for this research. The analysis of the gender and age distribution draws on information on the board members of 21 municipalities following the 2012 elections, collected with the help of research assistant Linda Sainio. The focus is on the executive, social and technical boards because these are required to comply with the provisions in the Equality Act. They also have economic and strategic power, with the executive boards in particular steering development. 212 P. Naskali

Some of the data were found through web pages. For example, representatives’ gender was apparent from their first names and in some municipalities information about participants’ age was openly available. In some cases, because of privacy concerns the representatives were contacted by telephone; two members of social and technical boards could not be reached. The statistical data describe distributions of men and women in six age groups (see Table 13.1) used by the Statistics Finland (Tilastokeskus). Gender and age were also cross-tabulated. To answer the second question, that concerning the viewpoints of an older woman and man about aged persons’ political agency, a politically active couple (a 78-year-old man and a 77-year-old woman) were interviewed. Their careers are quite typical of a couple of their age. The man had worked in the police and had advanced to a senior prior to retirement. He had been active in the trade union, as both shop steward and educator, and regularly contributed articles to the professional magazine and the local newspaper. The woman had been a housewife, after which she worked in the commercial sector and, for the last 15 years before retirement, at a polytechnic, where she was a student advisor. The interview was conducted in the couple’s home. They wanted to be interviewed together, and they gave permission for the interview to be recorded. The atmosphere of this voice-centred interview (Byrne et al. 2009) was friendly—more like a discussion—and lasted 1.5 h, ending with coffee. The interview can be seen as a case study albeit not in a strict sense. It does not fulfil the criteria of a “proper” case study, which presumes diverse data providing a comprehensive picture of the phenomenon (Swanborn 2010; Yin 2014). However, it gives voice to a politically active woman and man, thus representing an intensive approach that focuses on a phenomenon in depth. The focus of a case study is a phenomenon – in this research the political activity of older adults in Lapland – not generalising the observations to a group of similar cases (See Swanborn 2010). The analysis of this case illustrates the political participation of older persons in Lapland and enriches the understanding of participation more generally. The couple was selected because they can be considered both an unusual and common case (see Yin 2014, pp. 51–53). They are unusual in being very active in different political arenas, and common, especially in the case of the man, in actively participating in municipal politics in Lapland.

Table 13.1 Executive boards representative by age and gender in Finnish Lapland Gender Female Male Total Age 18–24 1 3 4 25–34 9 2 11 35–44 17 8 25 45–54 21 28 49 55–64 22 47 69 65+ 9 8 17 Total: 79 96 175 13 Old Women and Men as Political Actors in Finnish Lapland 213

In accordance with feminist epistemology, I understand knowledge as socially constructed insights rather than as truths to be applied anywhere, regardless of time and place. This idea of located knowledge stresses strong objectivity and the materiality of meaning systems (Harding 2004). It understands all knowledge to be socially constructed and connected to the materiality of the knower, which is why knowledge cannot be value-neutral. This means that the researcher gives profound consideration to research ethics and remains aware of her/his position as a producer of knowledge and of her/his own values (Tanesini 1999) – in the present case a critical stance on current age and gender politics and a desire to improve it. It also means a particular ethical sensitivity to power relations in age studies. In this case, both participants were in good physical and mental health – mentally alert, active adults who needed no special treatment. The participants are referred to using the pseud- onyms Liisa and Matti, common names in their generation, and their home place is not mentioned. Those familiar with the couple might recognise them because of their visibility in their community, but the language of the publication minimises this possibility. In political discourses, old people are often equated with children (Pulkki and Tynkkynen 2016) and in the case of both groups age ethics can be patronising, defining the members of the groups as Others. In the present interview, the relationship between the researcher and the couple was equal with regard to the agency, knowledge and experiences of the participants (see Nikander and Zechner 2006). I agree with Toni Calasanti (2004), who has pointed out that one must not assume that all older persons are vulnerable, and that the research should also focus on those who are privileged.

13.4 Women and Men in Local Political Positions

A total of 575 representatives were elected to municipal councils in Lapland in the elections held in 2012. The proportion of women (35%) did not reach the national figure of 36.2%. The number of female candidates in municipal elections has increased continuously since the 1950s, reaching a high point of 36.7% in 2008 but dropping in 2012 to 36.2%. At national level, women won 40.7% of the votes, but— because of Finland’s electoral system1—they received only 36.2% of the seats. In Lapland, the situation was the same: women won fewer places (35%) as compared to the number of candidates (38.3%) and won fewer places than votes (39.3%) (Tilastokeskus 2012). The biggest differences between men and women in number of representative elected were to be seen in small communities like Muonio, Pello and Simo (24%

1 Finland uses an open-list proportional representation system based on the d’Hondt constituency list system. Voters vote for individual candidates nominated by political parties, and the seats for municipal boards are allocated to parties in proportion to the number of votes each receives. http:// countrystudies.us/finland/121.htm 214 P. Naskali female representatives) and Ylitornio (29.6%). Among the towns, the number of females was smallest in Tornio (32.5%). In the northernmost municipality, Utsjoki, 15 representatives were elected to the council, of whom only one was a woman. In Enontekiö, women won 59% of the seats (10 of 17), although this translated into there being only three more women than men on the council. Enontekiö was among the few Finnish municipalities where women secured more votes than men (54.5%).

13.4.1 Municipal Executive Boards

According to the statistics, the gender balance on municipal executive boards is quite good. It seems that the quota provision has been taken into account, and both women and men have been elected to the highest decision-making bodies. However, men are still in the majority: 55% of all executive board members are male, while 45% are female. In Rovaniemi, women have a slight majority on the executive board (11 women and 9 men) while men hold the majority on other boards. The largest age group consists of middle-aged people (35–54 years), accounting for 42% of all representatives on executive boards. The next largest group (40%) consists of ageing people (55–64 years). Those over 65 years represent the third largest group (10%), which is still sizeable when compared to the youngest group, who have a representation of only 2%. When the two youngest groups (18–34) and the two oldest groups (55–65+) are combined, young people account for 8%, whereas older people account for almost half (49%) of the total membership of executive boards. When gender and age are cross-tabulated, the picture becomes more interesting. As Table 13.1 shows, the proportion of men increases with age. In the age group 35–44, there are almost twice as many women as men. In the oldest group, there are roughly as many men as women (9/8), but the ageing group (55–64) exhibits a clear gender difference, as 68% are male. Men aged 55–64 seem to constitute a significant proportion of decision makers, accounting for 27% of all executive board members.

13.4.2 Social and Technical Boards

Decisions on health and social care and on technical matters, such as town planning, are made by boards that consist of council members, but other citizens may also be invited to participate. In the present data set, the total number of representatives was 185, but age information could only be obtained from 183. The two were omitted when analysing the age dispersion. The provision in the 1995 Equality Act stipulat- ing 40% representation of both genders applies to the boards. Before the Act came into force, gender segregation was strong; in general, women served on the social boards and men on the technical boards. This segregation reflects that on the Finnish 13 Old Women and Men as Political Actors in Finnish Lapland 215 labour market, which is also strongly segregated by gender. For example, in the field of care over 90% of workers are women (Pietiläinen 2013). This has influenced policy making: social policy and education have been seen as the soft sector (for women), while the economy and higher posts like municipal manager were considered the hard sector (for men) (Kuusipalo 2011). In Lapland, the gender difference on social boards was small, with 51% female representatives and 49% male. The difference in the case of technical boards was larger (45% female, 55% male). The majority of representatives on the boards (47%) belonged to the 55+ age group while 30% belonged to the group aged 45–54. The proportion of representatives over 65 years was 9%; the youngest age group (18–24) had only two representatives, and the next (25–34) twenty-three, meaning the combined age group (18–34) had a share of just 12.5%. In 2015, people over 65 years accounted for over 20% of the population in all municipalities in Lapland other than Rovaniemi, where the figure was 17.7%. The proportion of older board members was 9%. This confirms Helander’s (1991) finding that the proportion of older adults in political positions does not reflect the age structure of the population. An exception to this trend was Pello, a small town in western Lapland, where the proportion of board and council members over 65 years of age was 34.9%, the highest in the province (Lapin liitto 2017). The gender division on executive boards differed by age: the younger age group (18–44 years) was female dominated (60%), whereas the 55–65+ group included more men (58%). This corresponds to the national situation, where young women are well represented in political arenas but at older ages women are in the minority (Tilastokeskus 2012). Every municipality also has working groups that undertake the preparatory work for decision making. For example, the law requires every municipal area to produce an ageing strategy. According to our previous research on Lapland, women were in the majority in working groups on ageing strategy; in two municipalities, Kemi and Keminmaa, all working group members were women, and in Rovaniemi there were 15 women and 5 men (Keskitalo-Foley and Naskali 2016, p. 38). One problem is that even where this ‘soft’ sector makes sound plans for good elder care services, it is committees in the ‘hard’ sector that make decisions about economic resources. In relation to gender, statutory quotas have obviously strengthened women’s position in municipal decision making. While resistance to the law has decreased over the years, power has nevertheless leaked to unofficial boards and committees. Moreover, men are clearly in the majority as chairpersons of boards (Holli et al. 2006). In 2009, in Lappish municipal organisations, 75% of the 205 chairpersons were men and 81% of the chairpersons of executive boards were men (Lapin letka 2013); these percentages were the same 3 years later. In 2012, most municipal managers were also men; only four of 21 municipalities (19%) had a woman manager. Eleven managers belonged to the middle-aged group (35–54 years), seven belonged to the ageing group (55–64 years), and two were over 65 years of age. The long-standing image of men in power relates to the modern political theory that connects the features of the political subject – activity, objectivity and rationality – to men (Kuusipalo 2011). According to Anna Elomäki (2007), this was the case 216 P. Naskali in the election advertisements in 2007, where men were portrayed as active “doers” and women as passive figures. The traditional idea that age brings wisdom, connected to the image of older men as rational, active and strong, may still uncon- sciously direct the selection of executive board members.

13.5 An Older Couple in Political Arenas

13.5.1 Profile of a Socially and Politically Active Older Couple

The interviewed couple had moved to Lapland after retirement. Matti described how he was immediately asked to participate in organisations and political activities: ‘I finally gave in and promised to become a candidate for the municipal council’. The first time he stood as a candidate, he missed being elected by a single vote; the second time, he received the second highest number of votes cast. Since then, he has been a member of the council, five municipal boards, three local organisations, the parish council and the council and government of the Finnish Pensioners’ Federation (Eläkeliitto). Liisa had a different motivation for getting involved in social and political activity. She described how she wanted to make friends in her new surroundings; less seriously, she said she did not want to be alone if her husband were to die. She has been secretary and chairperson of the local organisation for pensioners and a member of the regional government of Eläkeliitto. Additionally, she has been active as a volunteer in the church, the Lions Club, the women’s organisation for national defence and a veterans’ group, and has even worked as a ‘digi envoy’, teaching older adults to use ICT. All in all, the couple participate in a wide range of activities, from serving coffee at church events to decision making in national pension politics. Their charity work has both local and global dimensions, from mobilising the pensioners in their community to helping children in developing countries. Participation in organisations and doing voluntary work is common among older persons: about one-fourth of all pensioners belong to some organisation and voluntary work is seen both as a resource for society and a way to maintain one’s own health and wellbeing (Haarni 2009). Liisa and Matti have both worked in many of the same organisations, but at different levels, with Matti active nationally and Liisa locally. Matti has been involved in municipal and pension politics; Liisa has focused on voluntary work and charity. Their style of telling about their duties was gendered: while Matti described himself as sought-after and spoke proudly about his achievements, Liisa described her motives as personal and spoke modestly about her responsibilities; Matti even mentioned some of them for her. Both Liisa and Matti admitted that previous education and work experience were crucial in gaining the positions they had and that public participation was also important: ‘I wrote opinion pieces in the local newspaper and people realised that I can write and read and express myself effectively (Matti). However, Liisa’s opinion 13 Old Women and Men as Political Actors in Finnish Lapland 217 was that most of her husband’s votes came from the pensioners who listened to him at meetings. In behaviour typical of women, Liisa had turned down many requests: ‘I have been asked to take on many tasks, but I have refused…because I couldn’t have done the work properly; it would all have gone to the dogs.’ While women carefully assess their competence and resources before accepting a post or position of trust, men are more likely to believe that they will manage. Women of this generation have been raised and taught to embrace virtues such as selflessness, dili- gence and modesty, with these then becoming a part of their identities for their whole lifetime. (Jauhiainen and Huhtala 2010). The couple’s stories bear out previous research on the continuity of activities engaged in while in working life. The intersection of previous socio-economic status and the activity of pensioners is clear: the better the education and the more prestigious the career a person has had, the less her/his social status decreases after retirement. (Haarni 2009; Walker 1999). Edward Thompson and Kaitlyn Langendoerfer (2016, p. 127) carried out research focusing on male pensioners and argue that traditionally men’s self-esteem is based on being successful and respected, and thus paid work must be replaced by “doing something else”, keeping the “big wheel” turning. This can be interpreted as explaining Matti’s motivation; however, Liisa had also built a career and was busy after retirement even though she was motivated by social wellbeing.

13.5.2 Doing (Elderly) Politics

Based on the present analysis, ageing people seem to dominate municipal decision making; young citizens are in a minority, and the highest power is firmly in male hands. Anne Maria Holli et al. (2006) noted that although the statutory quotas have changed the style of politics, there has been no change in its content, which very much depends on the ideologies of the political parties. Is this also the case among ageing people? Voitto Helander (1991) in the Finnish context and Alan Walter (1999) in the European claim that ageing people do not change their political ideals when they get old, and that organisations for the older adults are a means of lobby- ing political parties. This stance was confirmed in the interview. When asked which obstacles hinder older adults in promoting their interests in society, Matti answered: ‘If the seniors were unanimous, they would have power’. He described how, for example, pensioners’ organisations are linked to the political parties and so cannot form coherent opinions. They are striving for common goals in principle but not in practice. Elderly politics and municipal politics were seen to be separate arenas. Matti stressed that in a political role he never considered only people of his own age; in other words, his roles in municipal politics and pensioners’ organisations are totally different. In municipal politics, his main goal was to secure workplaces and services for local population. A second important issue was health, including older adults’ 218 P. Naskali health. The municipal economy was also mentioned, along with ecological issues – especially the water quality of the big river that flows through the municipality. When asked for their opinions about opportunities for the older adults to participate in politics and to contribute to their own wellbeing, both Matti and Liisa emphasised that old people have the same opportunities as younger people, through elder councils, for instance, or by proposing initiatives. This thought was qualified by a number of ifs, however – if you learn about things, if you are ready to offer a public opinion, if you are active – ‘and not many active people can be found’ (Matti). The obstacles to being active were related to one’s socio-economic status; as many aged people are not used to arguing their opinions, they lack the courage or even the ability to contribute. Matti even suggested that some people’s ability to understand what they read was inadequate because of their limited education. This viewpoint can be interpreted in the context of the resource model of civic voluntarism (Verba et al. 1995), which distinguishes three factors connected to political participation: socio-economic resources, education being the most important; engagement in politics; and mobilisation, meaning social networks. Matti and Liisa both had a good education, good pensions and extensive social networks and they believed that it was possible to influence the world through political participation. In addition to emphasising the need to understand the problems caused by educational shortcomings of the pensioners, Matti stressed the importance of responsibility among the old adults themselves: ‘…I wanted to contribute to health issues and to ensuring that older persons could take care of their own situation…so that society does not have to take responsibility for everything…’ (Matti). This comment and previous discussion of the passivity of older adults echo the results of Ilka Haarni’s (2009) research: older adults, taking on a moral tone, emphasise everybody’s responsibility for being active and taking care of themselves. Neoliberal ideology has stressed individual responsibility for wellbeing and the value of free choice, even in elderly politics (Keskitalo-Foley and Naskali 2016). In this discussion, however, opportunities to take responsibility were seen as restricted by economic resources. Liisa found it regrettable that older adults were unwilling to buy media equipment that might prevent them from becoming marginalised in society; she suggested that this situation can be partly explained by poverty, as not everyone can afford the new technology.

13.5.3 Age – A State of Mind?

Economic inequality was seen as the most important issue in elderly politics; in particular, the so-called ‘guaranteed pension’ was considered insufficient. European austerity politics has increased economic problems for all vulnerable groups, including single mothers, low-skilled men and pensioners. In Finland, the gendered pension gap is even broader than the salary gap, as women’s employment pension is about 600 euros lower than men’s, that is, the equivalent of 66 cents to a man’s euro (Eläketurvakeskus 2017). The trend is the same elsewhere in Europe; in the UK, 13 Old Women and Men as Political Actors in Finnish Lapland 219 single women pensioners have lost the most as compared to male pensioners and couples (Pearson and Elson 2015; Walker 1999). Liisa and Matti sensed the ageism in society’s mental atmosphere. According to Matti, many older people feel that they are not valued as full-fledged citizens; the media in particular portray older adults as ‘eating the next generation’s bread’. Matti said that this is also apparent in municipal decision making, where taking care of older persons is seen as ‘a necessary evil’. This is especially frustrating because his peers believe that ‘this generation born during and after the Second World War has created everything that citizens now have’ (Matti). The performative power of cultural discourses and their material consequences can be recognised in Matti’s description: people lose their self-confidence and may assimilate the cultural definition as their own. This way of thinking may also offend those who have the skills to critically analyse the cultural discourses. In the literature, one sees a two-fold interpretation of the significance of the social atmosphere for the political activity of older adults. Some say that the society’s negative attitudes towards old age increase older people’s willingness to fight for their interests; others suggest that negativity decreases their readiness to get involved (Nygård and Jakobsson 2013). Matti’s comments underscore the latter argument. The couple supported not only economic but gender equality as well. They saw it being implemented in local organisations, and the quotas were being observed in the Eläkeliitto, where they were active. Matti had also tried to advance gender equality on municipal boards: I tried to ensure that women who were on the council could reach the more powerful positions. In a couple of cases, I gave up my own position to a young woman… The municipal leadership has been masculine, and even as an old person, I think that the leadership is too old; now, the situation seems to be getting better. (Matti) When talking about leaving politics, Matti raised the question of gender as well as age. His reasons for giving up politics were both personal and related to the current debate. He said that he felt old; he found the travelling (to Helsinki, [author’s note]) stressful and wanted more leisure time. Other reasons related to the social discourse that stresses the need to make room for young people: ‘I would have taken a post from some young person if I had still been involved. On the other hand, I haven’t got enough to give, and it is right that those who are still working have an opportunity to think about the future’ (Matti). Given these reflections, it is somewhat confusing that Matti emphasised how ‘age is in a sense a state of mind; if you don’t do anything and lie on the couch, life becomes boring, and you quickly deteriorate’. Liisa confirmed this: ‘It is just the case. You must always have something to plan or to do with your hands’. Age, then, is something that must be taken into account in political participation and decisions about the future; on the other hand, age is just a number. As an old man, Matti also saw himself as representing a masculine power that should make room for young people, especially women. 220 P. Naskali

13.6 Discussion and Conclusion

Older adults actively take part in the political decision making in Finnish Lapland. The numbers of participants on municipal executive boards, social and technical boards, among chairpersons and managers, show that municipal decision making is a male domain. However, the number of old people in politics does not correspond to the proportion of old people in the area – but neither does the number of young representatives. It seems that young women are coming into the political field but will remain in the minority when they get older. Women still have difficulties being recognised as chairpersons or municipal mangers despite their high education. Older adults’ active participation in politics may be an expression of their strong sense of responsibility, which originates in their “political socialisation”, a process that emphasises the duty to take part in collective decision making (see Nygård and Jakobsson 2013). The discussion with the older couple underscored the fact that older adults in sparsely populated areas can have an active and meaningful life. The couple also pointed out the terms for full-fledged citizenship: education, participation in working life, economic situation, and health are conditions for full participation. Matti represented the majority of the municipal policy makers in Lapland – older men – but he recognised the importance of gender equality for the future of his community. His story represented the busy ethic discussed in social gerontology, the bridge between working life and living as a pensioner. It may sustain the value of life but can also be exhausting; Matti mentioned it as one reason for leaving politics. In this light, being active should be a possibility, not a norm, for later life (Haarni 2009). The research also brought to light the negative atmosphere regarding old people – ageism. Ageism has been interpreted as a ‘women’s issue’ because of the negative stereotypes associated with older women; a woman’s identity is defined by her caring for others and her connectedness, and women suffer from negative evaluations of the aging body in a society that appreciates youth as a standard (Hurd 1999). Jeff Hearn (2012) has argued that older age has been a resource in patriarchal societies, where older men have had power over women and younger men. In recent years, the situation has become more complicated. While ageing men may still be associated with financial power and status, for men, too, getting old may mean being marginalised by society due to ageism. Thompson and Langendoerfer (2016, p. 119) contend that ‘[M]ost studies on men focus on the efforts made by young adults and boys to embody masculinities through sport, muscularity, sexuality, or as fathers’. The ‘cult of youth’ has changed the ‘hegemony of the agrarian patriarch’ and promoted ‘gerontophobic masculinity ideals’ that presuppose young, ‘strong, self-confident, independent’ masculinity. The image of a credible male politician or an executive as a moderately robust old gentleman has changed to reflect the modern ideal of a thin, efficient, athletic body. Even though ‘youthfulness and fitness’ are now concerns for both men and women (Gilleard and Higgs 2013; Meriläinen et al. 2015), it is women who still encounter 13 Old Women and Men as Political Actors in Finnish Lapland 221 more discrimination because of their looks, as they do, for example, in working life. Getting old still seems to be more ‘dangerous’ in this sense for women than for men (Jyrkinen and McKie 2012). Thus, at least in Lapland, we have not seen see the feminisation of older politicians that was predicted nearly 20 years ago by Alan Walker (1999) in light of the increasing proportion of older women. Older adults as voters and political actors do not constitute a homogenous group; they differ in gender, cultural and economic status, health, geographical location and, increasingly, in ethnicity and sexual orientation. These are considerations which politics has to take into account in the future if it is to further the full participation of older adults in society.

Acknowledgments The author thanks Linda Sainio, Seija Keskitalo-Foley and Richard Foley and the anonymous reviewer for their valuable support during the writing process for improving the manuscript.

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Trine Kvitberg

Abstract This chapter is reflecting on the relationship between traditional food, health and the body in the context of an elder Sami woman’s effort to maintain a traditional lifestyle threatened by an encroaching state politics and experts. The research approach is medical anthropology and sensitive listening in an ethnographic interview. The study findings shows that the meaning of health in everyday life to an elder Sami woman in rural North Norway was a silent struggle for corporal freedom, a struggling with nature, and the freedom to have control over own body and life. Consumption of food harvested direct from nature and a moderate diet and lifestyle is a way to give voice to the silent struggle. Within the context as a member of the religious Laestadian movement in the north, food emerges as a way to reha- bilitate everyday life and express subjectivity and resistance towards suppressive politic.

Keywords Luxury food · Old Sami women · Experience · Struggle · Finnmark · Anthropological · Resistance · North Norway

14.1 Introduction

Health and food culture among the indigenous people in the Arctic are in various ways characterized by local and global critical events.1 In this study, I explore appetite as voice, a form of social protest, and struggle for corporal freedom. Voice is

1 The government’s assimilation policy towards the Sami was strictly controlling not only in school and language policy, but in a wide range of areas that impacted and violated individuals’ everyday lives (NOU 2000:3).

T. Kvitberg (*) The Faculty of Health Science, Arctic University of Norway (UiT), Tromsø, Norway e-mail: [email protected]

© Springer Nature Switzerland AG 2019 225 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_14 226 T. Kvitberg given to Inga, an old Sami2 woman and reindeer herder in Finnmark. I investigate how she uses stories about food to express her experiences as a minority woman in Norway. In the study of what health means in her life, I reflect on body and pain. The text discusses two related questions: How does the old Sami woman express experiences of health and illness through telling her food biography? How do food narratives reflect her life as an older minority woman in the Norwegian society? I draw on a medical anthropological approach to health that conceptualizes “an embodied self” (Das 1990). This means that an ideology of the body underlies the notions of health. The body is the site of conflict and the point where individual experiences and collective ideologies intersect. This corresponds with the World Health Organization’s definition of health as a state of complete physical, mental and social well-being (WHO 2018). The World Health Organization emphasizes the ‘state’ of wellbeing rather than experience, thus linking health and disease of populations to the regulatory powers of the state. Das (1990) refers to experiences of health- and wellbeing as part of the individual’s constitution of herself, initially from an oblique perspective by inquiring into a related experience, that of pain. Pain is the price of membership of society. The individual is both defined by society and resists this definition. When people encounter pain they start to resist, and these are acts of transferal that Das locates as the genesis of culture (Das 1990). This study relies on ethnographic interviews and sensitive listening as its chief methodology. The conversation is between Inga, my Sami informant who tells her story through words and gestures in interaction with her husband Peter and the interviewer, the author of this text. Their personal names have been changed. The couple belongs to an old traditional semi-nomadic way of life and follows a local traditional diet consisting of self-produced food harvested from nature in inner Finnmark and at the coast of North- Troms in the northernmost part of Norway. Some of these areas are rural and inhabited by more pensioners (Slaastad 2016; Sønstebø 2018). Small groups are holding on to a more traditional lifestyle based on fishing, hunting, and reindeer herding (Sjölander 2011). Finnmark is the largest county for Sami reindeer husbandry in Norway with about 2200 people affiliated with the reindeer industry (Regjeringen 2017). Inga grew up with reindeer husbandry in her family. The flock of reindeer and the reindeer husbandry families move between the winter pasture and the summer pasture every spring and autumn. The reindeer annually migrate between winter- and summer grazing areas. The reindeer start moving to the coast in the spring, early April in a normal year, and return from the summer pasture in late September. The migration pattern of the reindeer is determined by available pasture- land, grazing and calving. The calves are born on the coast in May and make use of the lush grass crop in the summer pasture- land. Sami reindeer herders live in close contact and interaction with their animals and nature in a rough arctic climate. The reindeer

2 The Sami are the indigenous people of northern Scandinavia (Norway, Sweden and Finland) and the Kola Peninsula (Russia). The majority of the Sami inhabit the northern parts of the Scandinavian countries. The highest density of Sami people lives in the Sami areas of Finnmark, the northernmost county in Norway in the municipalities of Karasjok and Kautokeino (Hassler et al. 2008). 14 “We Do Not Eat Luxury Food”: A Story About Food and Health in an Old Sami… 227 have adapted to nature and opportunistically follow what the pastures offer in different seasons. That’s also the way it is with the reindeer herders and their families. The food resources must be used in the best possible way for people and animals. The Sami reindeer herders have in addition been doing traditional seasonal fishing, hunting and gathering from nature. Reindeer meat, fish, berries and plants are harvested both at the coast and inland. The produce forms the basis of a traditional cuisine utilizing healthy wholesome local foods (Moe and Arnhus 2001; Spik 2009). My fieldwork was conducted in Finnmark between 2008 and 2011 with several field stays and kitchen table conversations with older persons about life, food and health. The conversations with Inga and her husband were conducted around her kitchen table in Finnmark. Inga was close to 80 years old at the time of the interviews. The first field trip took place during the annual Sami Easter festival in Kautokeino.

14.1.1 About Being Good Shepherd

I first met Inga and her husband Peter in their local church in Kautokeino Easter Sunday. In Kautokeino 92% of the inhabitants use Sami as their first language. The ceremony in the church was bilingual, in Sami and Norwegian. Inga and her husband Peter are both Sami speaking reindeer herders. Peter also spoke Norwegian and translates when Inga asks for help with finding Norwegian words. A priest I met at the Sami Easter festival invited me to the Easter Sunday service and introduced me to the couple. Coffee was served after the service and the priest told them I was a social anthropologist from the University of Tromsø working on a research project on food and health in the Arctic. The couple started the conversation and told me that in the 1960s an anthropologist had studied their daily routines in reindeer husbandry. Inga and Peter were active reindeer herders and members of the Laestadian revival movement and the Lutheran church in Kautokeino. They told me about their long and emotional struggle with The Church of Norway, which had marked their congregation as dissidents. Peter said, “We were labeled as ‘a breakaway faction’ of The Church of Norway, but it is The Church of Norway who really violates the Word of God.” The couple expressed their resistance to being marginalized as dissidents, and turns it back to the Church of Norway. They referred to the Biblical words about love to God and to your neighbor as the basic principle for life. The priest related a story about Peter battling with wolves and bears. The story showed how good shepherds have care, respect and experience genuine friendships with their animals. A good shepherd struggles with nature and gives his life and love to the flock. The couple invited me to a food conversation in their home. They welcomed me with a smile and words about having good time around the table. The first meeting was the beginning of even more conversations. My first visit to Inga and Peter’s house took place a few days after the Easter festival. 228 T. Kvitberg

The couple lived in a small neighborhood outside the center of Kautokeino. The day of my visit Inga was working in the kitchen. Every spring Inga and Peter move with the reindeer to their summer pastures in North- Troms. The couple were preparing for the relocation to the summer pastures. From early childhood, Inga has stayed with the reindeer and taken care of them. Her whole life had been centered around the reindeer migrations between the summer pasture in North Troms, and the winter pasture at the Finnmark mountain plateau. Peter and the dog welcomed me in the hallway when I knocked on their door. Peter was wearing skaller, footwear made of reindeer skin, in use both inside the house and outdoors in dry snow. “There is a cold draft sweeping across the floors,” he said, and reminded me to keep my shoes on inside. There were no carpets to protect the feet from the cold air. Every day since their wedding, his footwear had been cared for by his wife Inga, who filled them with sennegras. Peter said his feet were always warm: “I am a grateful man thanks to Inga who keeps my footwear in good conditions. Sennegras draws out the moist so that the footwear do not get humid. Good caring is good protection”. He added that he had never had a cold or been sick. The dog followed me to the living room. With expectant eyes and a sniffing snout the dog showed me a place to sit. The house was decorated with furniture from the 1960s and 1970s. I could hear the rhythmic movement of Inga working in the kitchen and the sound of songs and hymns. She took three coffee cups carefully out of the cabinet and placed them gently at the table. The smell of freshly brewed coffee and bread seeped into the living room. A voice from the Sami radio filled the room. Inga and Peter were listening to the news about reindeer suffering from stress and starvation. Peter told me about the taste of stress in reindeer meat if the reindeer are in pain at the time of the slaughter. The husband and wife said they had experienced that the reindeer’s ‘inner guide’ was disturbed. The inner guide shows the reindeer where to move in their environment. Peter was displeased with the fences that prevent the reindeer from moving freely. He emphasized that the younger generation of reindeer herders’ loss of patience was a serious threat to the health of the reindeer. “The hard work of the past is replaced with vehicles that make work more easy and quick to finish. The reindeer are stressed and afraid of the noisy vehicles”, he said. For generations patience and gratitude had been central values in the life of a good reindeer herder. “Patience enables people to see and listen to the voice of nature. The women show patience and are listening sensitively to the reindeer when they need to rest. In the past they stayed with the reindeer, but now the women have left the reindeer industry”, he said. Inga invited me to share a meal with them. I enjoyed the hospitality and invita- tion to sit by the kitchen table with the best view to the mountain plateau. Inga continuously moved her hands to give or receive help around the table. She spoke with her hands, sometimes gesturing to her husband that she needed help with Norwegian words. A large, worn Bible lay on the table. Inga poured the coffee cups and prepared homemade bread, purchased butter and small mugs with cloudberries, cowberries and blueberries. The berries were picked at the summer pastures last 14 “We Do Not Eat Luxury Food”: A Story About Food and Health in an Old Sami… 229 year. Inga had sliced the dried reindeer meat harvested from their herd. The couple were close to 80 years old at the time of my visits and still actively working. They were taking care of the reindeer as they had done their whole life, though they now depended on some help from younger relatives and good neighbors. Inga was dressed in Sami headdress from Kautokeino she had sewn herself. She sat down, and folded her hands. On the wall above the table were two decorated plates, the Lord’s Supper, and the other with the text “Give us this day our daily bread”. Inga whispered that these words from the Lord’s Prayer were a reminder to give thanks to God, and the land that gave them food. She continued: “We say the Lord’s Prayer every day, and before we eat, we pray.” Inga and Peter folded their hands and silently blessed their food. They expressed their mutual gratitude for their meal as a gift from God, the sea, and the land. They both had given their approval to a sound recording. I switched on the recorder, and asked if Inga could tell me about her everyday food habits. She whispered: “We eat the same food as we always have been eating. The food we eat now is almost the same as the food we ate before the boarding school.” Peter added that they eat boiled and salted fish. They buy the fish, or barter it for reindeer meat with the fishing communities in northern Troms. “We eat dried reindeer meat”, Inga said. Peter enthusiastically described the drying of reindeer meat. Being a good shepherd, he stated, is about sensing and reading the weather, a work that requires discipline and precision. The meat must hang to dry as early in the season as possible for a good drying process. “Periods of cold and dry air are required for proper drying. If the meat is hung to dry too late in the season, the sun will be too sharp for good inner drying. There must be cold winds for proper drying.” Inga nodded to Peter, as a sign for him to continue. He told me about the change they experienced when sweet foods came to their district. Peter said, “We never used sandwich spread, but I remember when the cans of syrup came. Then we started to use sandwich spread on bread.” Inga chuckled and handed over the cloudberries for my piece of bread. “We never used cloudberries on our bread,” Inga said. Peter explained that the good taste of cloudberries was stronger without the bread and the sugar. I asked if Inga remembered food she did not eat. “At home there was never food we did not eat, but at the boarding school it was different. There we had to eat the soup with potatoes and carrots – food we did not like. We were forced to eat healthy food at the boarding school.” Inga sighed, rubbed her hands and whispered: “However, we eat potatoes and carrots now”. “We eat the potato with the peel”, Peter added. He continued, “There are foods we do not eat. We do not eat ketchup, and we never eat the canned food. Very seldom, we eat sausages. We never eat the processed industrial food that is pre-cooked. We do not eat burned food. The smell of burned soup we do not like. The food that is prepared without love and patience gives stomach pain. If the soup is burned in the bottom of the pot because of insufficient stirring, it gives us stomach pain. We do not like foods made without love and patience”. 230 T. Kvitberg

14.1.2 “We Do Not Eat Luxury Food”

“We do not eat luxury food”! Inga said. “We do not buy the luxury food. No food is wasted. All is used from the reindeer after slaughter.” “What is luxury food”? I asked. She explained: “If your neighbor has any goods you desire, and you want to have what they have, to buy and have the same luxurious goods.” There was a moment of silence. I heard Inga whisper “Envy is poisonous”. The conversation took a new direction when Peter brought in an old photo album with memories from everyday life and feasts. He placed the photo album on the kitchen table, opened it and started carefully to turn the pages. The photo album belonged to Inga. A picture of an old building evoked some memories, Inga’s place of birth. She smiled and told me about the circumstances of her birth: “I was born in a small house the night before Christmas Eve in 1934. There was no midwife”. Peter pointed out of the window towards the site where Inga was born. He grew up in the same district as his wife, and he knew Inga’s parents since adolescence. They lived in a gamme,3 he said. “The whole year in a gamme, Inga repeated. “I lived in a gamme until after the Second World War, until the evacuation.” Inga gazed at her hands, rubbed them and whispered. “After the evacuation, I had to go to the boarding school.” I asked Inga if she could talk about food she remembered from boarding school. Inga whispered with her hands folded, “No well, it’s not that significant.” She did not like the boarding school. The time at the boarding school was not important to remember. However, the smell and taste of burned potato soup reminded her of the boarding school. Inga gestured Peter to speak. “The teachers did not speak the Sami language. However we learned the catechism in Sami”,4 Peter said. He went on and explained the major changes they had experienced at the time of the boarding school. The transition from a life on the mountain to the boarding school was overwhelming. Inga whispered, “I did not like to be in the boarding school. It was … Oh, I don’t know”. Where did she want to go? “I wanted to be with my reindeer”, she replied and folded her hands. She had been working with animals all her life. Looking after the reindeer was the crucial thing for Inga. What did Inga remember about everyday life and everyday food? “There was much sewing and caring for the reindeer, a lot of work”. Peter helped Inga find the Norwegian words. “The school demanded too much of us! We had to learn to struggle with nature. That was the most important knowledge we had to learn. It was vital for life. We moved with the reindeer, brought the reindeer skins, dried and prepared them.5 We had to pick the bark and draw out the sap.6 We had to care for the reindeer and sew. If we did not have that knowledge, we could not survive. We were people who had to learn to struggle with nature. They (the school authorities) failed to see

3 Gamme, north Sami goahti, a small building covered with peat. 4 At that time, the priests in The Church of Norway were mainly responsible for supervising the boarding schools in Finnmark (Nergård 2006). 5 The Reindeer skins were used to make clothes and to sit and lay on. 6 The bark and sap were used in the diet as food. It was used to make bread. 14 “We Do Not Eat Luxury Food”: A Story About Food and Health in an Old Sami… 231 that and would transform us so we were unable to struggle with nature. We were forced to forget who we are. Nevertheless we are proud of the fact we eventually learned to migrate back and forth over the Finnmark plateau.” “I do not remember”, Inga said glancing at her folded palms as if she were reading inscribed memories. These had been helping hands – for the animals, family and those in need. “I have been out herding and cared for the reindeer days and nights, sometimes without eating. You cannot just leave the reindeer herd. No!!! You have to stay with it and move alongside them. It was common to be without food a whole day and night”, Inga said. Inga cared much about the reindeer and their needs. Good shepherds had to learn to control their own bodily needs in order to help the animals. “It was common in the spring to manage with little food. It was common herding day and night before we returned back,” Peter said. Inga nodded and added that patience with the animals is essential. “A bad shepherd returns too soon. You have to watch your flock the whole day and night regardless of the weather”. Peter turned a page in the photo album and his eyes rested on a picture of Inga in her youth, dressed in a Sami costume she had made. Peter recalled their youth as a very joyful time. “We were visiting the community center when there was a festive celebration, but just once a year”, he said. Inga smiled and said it was a joyous time. “If we went to a Christmas celebration, we did not go at Easter, but some were at these feasts more often during wintertime”, Inga said. “Easter was the time when most people got married. Nowadays there are parties every Saturday. I don’t understand how they manage”, Peter said and laughed. “Inga was just like this when she was 17–18 years old. She had made her own headdress, exactly how it should be.” Inga nodded and said, “It was important that the headdress should be precisely like that.” Peter recalled how they met. “We knew each other from we were ten years old living in the same area. I was the one who traveled from siida to siida (reindeer pastoral district) gathering the reindeer. That was the way we met,” he said and smiled to Inga. Peter turned a new page in the photo album with pictures from their wedding. “We were married in the church in Kautokeino”. I asked if they had a traditional Sami wedding with many guests and a lot of food. Peter answered “It was not about having a lot of food. It was not important to be big and wealthy”. What did Inga remember about the events in the pictures? She gestured Peter to tell me. “Inga has worked hard. She is a good shepherd for the reindeer. She learned the important skills like sewing and reindeer husbandry. Inga was the oldest of all her sisters and brothers. Her father and her mother were quite old, and we had to assume responsibility for the flock of reindeer and the seasonal migration. Her sisters and brothers had to finish school”, he said. Inga had the primary responsibility for the everyday work in the household. She had given her life and affection to the reindeer, her husband and her family. Inga said, “I remember much hard work”. Again she looked at her folded hands. I asked if she got help from children in her daily routines. “No, unfortunately we did not get children. In any case, we are happy and give thanks for all what God have given us”, Peter answered. 232 T. Kvitberg

Peter turned the last page before he closed the photo album. He showed me a photo of three persons dressed in Sami clothes. Peter glanced at the picture, and then at Inga. He said she seemed so young in the picture. Inga laughed and corrected their age at the time of the photo. The picture, from the 1960s, showed Inga, Peter and a social anthropologist who followed them and participated in everyday life and work at the mountain plateau. Peter put the photo album back in the bookcase. Inga and Peter made a brief account of their daily routines. “We have had a blessed life and good health. We are grateful and cannot complain”. Inga interjected: “We have had no big worries, but we have endured much hard labor. We managed all the work with the reindeer, the relocation, herding and everything. We have had a good and healthy life together”.

14.1.3 Contextualizing Food-Biographies: Food as Battleground for Corporal Freedom

A critical medical anthropological approach tries to deal with the nexus between the individual and social body by placing analytical focus on how political and social processes cause pain and social suffering on the micro level, often emphasizing how structural violence implies the suppression of the voices of the afflicted (Farmer 2004). Investigation shows how structural violence on the macro level structure individuals and their relations to their own body (Das 1990, 1995, 2007). Das claims that it is our obligation as social scientists to give voice to the subaltern, muted voices. In order to approach these silent testimonies social scientists need to grapple with the relations between biography, autobiography and ethnography and pay attention to spoken words as well as to body language (Kvitberg 2015; Kvitberg and Flikke 2016). Since the effects of structural violence can take the form as historical events inscribed as memory in the body, there is a need to start by summarizing some main points in the assimilation policies, the so-called Norwegianization, that affected Inga’s life. The chapter will not describe the event, rather its effects on everyday life. The political thinking was that the Sami had to become Norwegian (Olsen 2011). The state and an educated elite carried out a strict assimilation policy towards the Sami people from about 1850 to 1970s–1980s (Eidheim 1970, 1987). In the first part of this period Norway was in union with Sweden. The Church of Norway and the education system were central for these policies. In school, Inga experienced that traditional Sami culture and food was singled out as inferior. An historical retrospect of the Sami school and education history shows how the Sami language and culture were systematically eliminated during the children’s upbringing (NOU 2000:3). The assimilation policies were particularly harsh in the boarding schools, the final stage in the process of Norwegianization from 1905. The Norwegianization policies considered schools as a battleground and teachers as frontline soldiers (Minde 2005). The assimilation policies included four language 14 “We Do Not Eat Luxury Food”: A Story About Food and Health in an Old Sami… 233 instructions: in 1850, 1862, 1880, and in 1898. When the new school law was introduced in 1959 it became possible to use Sami as a language of instruction. However the earlier language instructions had resulted in a systematic eradication of Sami language and culture. Resistance to the oppressive educational policies came from the Sami educator Per Fokstad. He issued a request to the authorities with the recommendation that at least use of the Sami language should be allowed in religious education (NOU 2000:3). The state authorities found Sami culture to be incompatible with a sedentary life. The policy towards the Sami children in the boarding schools resulted in major changes in their daily routines. The Sami children were to adapt to Norwegian conditions and the state’s health and diet recommendations. The boarding school children moved away from their own food traditions and were under new bodily regimes. Public health messages shape subjectivities (Foucault 2000), and affect the sense of who you are. Public health messages often target children as change-makers in their local communities and their feelings of “who I feel I am” (Flikke 2003). Viewed in this context, being Norwegian and eating a healthy modern diet is a powerful message which is directly aimed at transforming the Sami young into healthy Norwegian children by encouraging an active dislike of their own traditional origins. In the book of Haagenrud and Paulsen (2007) Diet and food culture in Finnmark throughout the ages, the authors refer to agricultural food such as potatoes and vegetables that were associated with the educated elite who came to Finnmark from the south. Until the early twentieth century, potatoes were “luxuries on the table of the wealthy elite”, those in modern professions such as priests, teachers, merchants and physicians in Finnmark. The so-called “potato priests” worked hard to educate the Sami and the people in Finnmark to cultivate and eat potatoes (Haagenrud and Paulsen 2007). Inga expressed that agricultural food such as potatoes and vegetables were associated with emotional pain and the early recollections of the boarding school. Being forced to eat specific foods was associated with cultural abuse. Resistance to the food was resistance to the abuse. Potatoes and vegetables were food Inga had to eat at the boarding school. She did not express resistance to the particular food, but the episodes and the situations that were related to it and carried out by force (Batsell et al. 2002). In the boarding school the food, language and culture were unfamiliar to the Sami children. The food they were eating at the boarding school was associated with the absence of caring parents and their extended Sami family relations. Inga’s story shows that having a taste for luxuries, luxury food and having a modern Norwegian diet was an expression of an active participation in the social control practiced in the boarding school she attended, and in this way to participate in her own oppression. Taste and pain not only penetrates into the individual body, but also permeates into social, economic and political relations. Food has an uncanny ability to tie the everyday experience to broader cultural patterns, hegemonic structures, and political-economic-processes” (Holtzman 2009). 234 T. Kvitberg

Inga and Peter belong to the Laestadian movement in which rejection of luxuries expresses who you are. The couple are conscious of the symbols they are using through their local traditions, work experiences, spirituality and stories from the Bible. Above all, Inga clearly experienced her Laestadian faith as a source of cultural pride, and at the same time also as a protest against controlling political ideologies. The priest Lars Levi Laestadius (1800–1861) was a Sami Swedish theologian and Christian revivalist at the North Calotte. He rejected material wealth. The Laestadian movement gave people an opportunity to practice resistance to cultural abuse and transformed suffering into redemption. Laestadius was an important voice to many people who were suffering under the strong assimilation policies. His teaching and sermons acknowledged ordinary people’s everyday life experiences. Laestadius was concerned with the health of the Sami people in his speeches and writings. His teaching about living a good and healthy life communicated another meaning than material wealth and luxury. In the religious philosophical treatise Daarhushjornet (Laestadius 1851) he writes in § 658, “Civilization allows for luxury, vanity and many tempting pleasures that are not good for your health”. He writes further in § 1603, “If you had not corrupted health in an unnatural and luxurious life, you could be healthy”.7 In Laestadius’s teachings health is a silent struggle for corporal freedom from dependence on material wealth. Laestadius actively used the Sami language, stories, symbols and imagery from nature for people to recognize their everyday life when listening and reading the biblical texts he selected. The Sami concepts of good and evil are connected to nature (Nergård 2006). In Sami tradition the good is often connected to people’s insight and communication with nature. Material wealth and luxury food were often associated with evil or ‘neavrrit’ (Nergård 2006). Evils were exerted and practiced through luxury foods, drinks and physical contact. Traditional Sami stories recall that those who have ‘neavrrit’ are the rich and those who aspire to become well-off people. People should be careful of eating luxury food served from rich people. The wealthy who have ‘neavrrit’ had to transport or “infect” other people with evil in order to prevent it from affecting their own life and family. Materialistic wealth, then, had the potential of disturbing equal distribution of food and balance in a community that was dependent on sharing and reciprocity in order to survive the harsh Arctic climate. People with wealth and power could be tempted to rise above the collective norms and the conventions regarding the use of nature. The Sami stories about ‘neavrrit’ communicate how people who lived everyday life with their local food and a traditional diet often became defiled by newfound wealth and how this material wealth contained destabilizing forces (Nergård 2006). Freedom fighters have used food in order to actively and silently resist ideological domination and oppression. Through fasting and using their traditional diet, Mahatma Gandhi in India and Daniel in the Book of Daniel in the Bible expressed

7 The translation from Swedish to English and all the quotations is mine, the author of this chapter. 14 “We Do Not Eat Luxury Food”: A Story About Food and Health in an Old Sami… 235 resistance to the social elite and oppressors of their time. Food became a means for the practices of freedom and for expressing a voice in society. Mahatma Gandhi fasted as a form of social protest. He used fasting as a political tool and starved himself. He controlled his intake of food in order to affect social processes, and the British oppressors to respond. It was a voluntary acceptance of pain to give voice to the voiceless, the poor of India. In this way Gandhi transformed suffering into redemption. He extended his subjectivity into the public sphere in what he spoke of as “freedom for the expression of my personality” (Fischer 2012). The voluntary acceptance of pain gives voice to the oppressed and thus affirms one’s place in the society. Daniel, in the Book of Daniel, used his traditional diet and prayer in the everyday struggle with resisting the prevailing violent ideology of the empire. He resisted the luxury food from the King’s table as an expression of his agency. The austerity of his food and diet was perhaps a way that kept him from developing a taste for luxury that would compromise his independence. The struggle for independence is a battle which involves gaining a reflective understanding of the self. This may be related to food consumption. Das (1990) says that being able to separate the body from pain, or the ability to separate afflictions from the body, constitutes a reflective consciousness (Das 1990; Sartre 1956). Political awakening and social justice is dependent on gaining enough distance to look at one’s own pain from the outside, so that the pain is recognized as social, rather than being conflated with one’s own body. Until a person reaches that perspective, the body remains the pain and redemption is impossible. In Christian traditions fasting and praying are seen as a bodily, spiritual battle transforming suffering into redemption. The prayer about daily bread and the Lord’s Prayer were important to Inga and addressed the question “who am I”? (Dossey 2000). The words in the Lord’s Prayer are relational about giving and receiving. Prayer is an important work of Inga’s everyday life. Folded hands expressed an awareness that God is listening to prayers in the midst of the everyday struggle. Prayer and fasting is about having an active relationship to body and pain. Inga prays before eating, an everyday ritual that expresses fulfillment of her own bodily needs and the needs to those who suffer. Inga has transformed suffering into redemption. By eating the local foods that corresponded with Sami traditions and the teaching of Laestadius, Inga crafted a biography according to a biblical metaphor of the good shepherd and parent. The good parent often surfaced in Laestadius sermons. Being a good shepherd and parent was an expression of Inga’s subjectivity. She used food and her hands to externalize her subjectivity. Throughout her life she had stretched towards the reindeer which needed her care and helping hands. The reindeer provide them with meat— food that protect their bodies and ensure a continued Sami lifestyle. She was in an active relationship to body and pain and expressed through her acts and her relationship to food who she was and wanted to be — a good reindeer herder. 236 T. Kvitberg

14.2 Concluding Remarks

What does health mean in the life of an elderly Sami woman and reindeer herder in Norway? We have to recognize the conflicts between the individual body and social body (Das 1990). Critical events and changes in public health policy do restructure an individual’s relationship to his or her body. In public health, we have to recognize the connection between pain and voice, and not solely cling to the normal/patho- logical dichotomy. Public health research can thus focus on medical interventions as practices of freedom rather than a strictly body control. Morally sensitive relativism (Das 1990) implies that health researchers instead of solely looking at moral discourses based on medical truth are listening sensitively to people’s everyday experiences. We need to look at people’s circumstances from their own point of view, history and culture. There is no use of power without resistance (Foucault and Sheridan 1977). It does not necessarily mean active, political resistance but that the body resists and starts to speak through acts and gestures. Such bodily dispositions need to be carefully read and interpreted in order for the analyst to understand the subject’s experiences and engagements with the subjugating forces of society (Scheper-Hughes and Lock 1987). For this reason public health researchers need to be careful not to insert implicit body ideologies into their research agenda. What the body is for one individual is not necessarily the same for another. This implies an open approach that promotes health, not as a harmonious blending of the social and the individual, but diverse voices, speaking and acting and together, outlines the contours of what it means to be human in a society where suffering is unevenly distributed. Medical research has often not been open to this phenomenon, but rather prematurely focused attention on a narrowly defined aspect of the “real problem”. All human bodies are marked by society, and as such they are sites of conflict. These marks vary within societies according to, e.g., age, gender, religion, ethnicity, and class. Inga expressed that the life as a Sami reindeer herder included much and hard work. It was important to remain active. She had learned early in her life to adapt to the rhythm and movement in the harsh Arctic climate. The sea, rivers, mountains, the seasonal animal migrations provided their livelihood, and instilled the old Sami traditions with a deep respect and thankfulness to the local food God provided them through nature. Health in the life of Inga is a silent struggle for corporal freedom from dependence on materialism, luxury food or modern food. It is about having an active relationship to body and pain. If there is a tension between having pain and expressing it, then it is the movement between these two poles of possession and communication which allows the subject to be defined as an active agent in relation to his or her own body (Das 1990; Wittgenstein 1958). This chapter shows how an elder Sami woman has internalized painful experiences of a Norwegian assimilation campaign in ways that affected her relationship to her own body. By sensitive listening and attention to words and body language in 14 “We Do Not Eat Luxury Food”: A Story About Food and Health in an Old Sami… 237 a historical and local context, I show that self-inflicted food austerity surfaced as an important theme in Inga’s struggle for independence and sense of freedom. As an elder Sami woman she defines her life and her experiences of health in the periphery of an encroaching majority society.

Acknowledgement I acknowledge and thank the Sami women in Finnmark who shared their personal food biography. I thank Rune Flikke for his cooperation, suggestions and critical comments in the writing process. I also thank Jon Øyvind Odland, Jens Ivar Nergård and all those who have contributed with comments on earlier drafts.

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Kvitberg, T., & Flikke, R. (2016). “Wanting Greenlandic food” A story of food, health, and illness in the life of an elderly Greenlandic woman. In P. Naskali, M. Seppänen, & S. Begum (Eds.), Ageing, wellbeing and climate change in the Arctic (pp. 181–195). London/New York: Routledge Advances in Climate Change Research. Laestadius, L. L. (1851). Dårhushjornet (Religionsfilosofiska avhandlingar). http://www.laesta- diusarkivet.se/ Minde, H. (2005). Assimilation of the Sami: Implementation and consequences (Vol. nr 3/2005). Kautokeino: Resource Centre for the Rights of Indigenous Peoples. Moe, N. H., & Arnhus, E. (2001). Tradisjonsmat fra nord: 480 matoppskrifter, gode råd og mathis- torie fra Nordland, Troms og Finnmark. Tromsø: Victus forl. Nergård, J.-I. (2006). Den levende erfaring: en studie i samisk kunnskapstradisjon. Oslo: Cappelen akademisk. NOU. (2000:3). Samisk lærerutdanning: mellom ulike kunnskapstradisjoner: utredning fra et utvalg oppnevnt av Kirke-, utdannings- og forskningsdepartementet av 8. mai 1998: avgitt september 1999. Oslo Statens forvaltningstjeneste, Informasjonsforvaltning: Norges Offentlige Utredninger. Olsen, T. (2011). Samisk kristendom i ny drakt – En analyse av en samisk katekisme. Norsk Teologisk Tidsskrift, 112(02), 111–131. Regjeringen. (2017). Reindrift- regjeringen.no. https://www.regjeringen.no/no/tema/ mat-fiske-og-landbruk/reindrift/reindrift/id2339774/ Sartre, J.-P. (1956). Being and nothingness: An essay on phenomenological ontology. New York: Philosophical Library. Scheper-Hughes, N., & Lock, M. M. (1987). The mindful body: A prolegomenon to future work in medical anthropology. Medical Anthropology Quarterly, New Series, 1(1), 6–41. Sjölander, P. (2011). What is known about the health and living conditions of the indigenous people of northern Scandinavia, the Sami? Global Health Action, 4. https://doi.org/10.3402/gha. v4i0.8457. Slaastad, T. I. (2016). Samisk statistikk 2016. Statistisk sentralbyrå. Sønstebø, A. (2018). Samisk statistikk 2018. Statistisk sentralbyrå. Spik, L. (2009). Saami culture: Natural remedies and foods [DVD]: Agnetha & Torbjörn Rosander Production.se. WHO. (2018). Constitution of the World Health Organization (WHO): principles http://www.who. int/about/mission/en/ Wittgenstein, L. (1958). Preliminary studies for the “philosophical investigations”, generally known as the Blue and Brown books. Oxford: Blackwel. Part IV The Transition to Second Modernity: Ageing in the Arctic Chapter 15 The Individualisation of Ageing

Chris Gilleard and Paul Higgs

15.1 Introduction

Change in the social nature of later life is exhibited through a wide range of institutions and across a wide range of settings. This change is not confined to any particular group, nor to any particular place or setting. The increasingly networked societies of the twenty first century facilitate the movement of goods, information, services and people. Age and ageing are everywhere caught up in this mobility. The relatively solid structures that were established with modernity have been gradually eroded by processes and practices which de-standardise the life course and facilitate the individualisation of life. All of life is affected including later lives that are no longer marginal to the economy, culture or to political processes. Age begins to matter more. Part of this mattering concerns the effects of ageing on the economy – the provisions for funding pension income; the accumulation of ‘pensioner wealth’; and the rising purchasing power associated with later life. Another part is the changing demography and the impact of an ageing population on health, social and welfare provision and policy as the epidemiological transition extends its influence over the ever later stages of the life course. Such changes reflect processes that are not confined to or constructed solely within later life. Rather it is the case that later life is no longer marginal to wider changes, whether in culture, the economy or social relations. This includes the broad shift away from the social significance of production toward consumption and consumerism, from communities of propinquity to symbolic communities shaped around common interests and identities, from ‘normative’ to more diverse household forms and modes of social reproduction, and from universalist to more contingent systems of welfare provision. Even if ageing remains, for the majority, a matter of

C. Gilleard (*) · P. Higgs Division of Psychiatry, UCL Faculty of Brain Sciences, London, UK e-mail: [email protected]; [email protected]

© Springer Nature Switzerland AG 2019 241 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1_15 242 C. Gilleard and P. Higgs

‘ageing in place’, neither age nor place are what they once were. These shifts whether in policies and practices, or in culture and consumption, are not so fluid that they lack any shape or structure. They follow some key vectors – including changing social expectations of the ‘predictable’ life course and a growing diversity in the course and direction that later lives and lifestyles take. This includes the expansion of markets for an ever wider range of goods and services targeting ever more aspects of people’s life worlds. Further, these developments are taking place within and not simply between generations. Almost as soon as it emerged as a salient cultural category, generation began losing its solidity. Age, like the breaking Arctic ice, is not just shifting its boundaries but is being transformed. One key vector of change is that of ‘individualisation’. Delineated most clearly by the late German sociologist, Ulrich Beck, (Beck 1994; Beck and Beck-Gernsheim 2002) individualisation is seen as “the individual…becoming the basic unit of social reproduction for the first time in history” (Beck and Beck-Gernsheim 2002: xxii). It is this particular vector and its realisation within later life that we wish to focus upon, in this concluding chapter. In doing so, we first outline Beck’s use of the term and the various critiques that have been made of it; next, we illustrate its social realisation in the lives of older people; and finally we explore the impact of individualisation on policies designed to ‘securitise’ individual later lives. We conclude by arguing that the individualisation of later life and later life styles presents opportunities for the further formation and elaboration of third age cultures at the same time as it risks losing the collective solidarity associated with old age. One political consequence is the individualisation of risk and with it systems of increasingly ‘personalised’ health and social care, where ‘entitlements’ are made contingent upon individual circumstances and local resources.

15.2 The Individualisation Thesis

Matt Dawson has named Bauman, Beck and Giddens as the main proponents of the individualisation thesis, but he privileges Ulrich Beck as its most systematic analyst and its strongest proponent as ‘the structuring principle’ of late or second modernity (Dawson 2012: 306). In Beck’s theory, choice and reflexivity in people’s construction of their sense of self and the associated ‘privatisation’ of social problems that puts the onus upon the individual are central features in the transition from ‘classic’ or ‘first’ modernity to its later ‘second’ form (Beck and Beck-Gernsheim 2002, 2009). This transition has been achieved through the interlinked processes of ‘de- traditionalisation’ whereby previous social locations associated with class, gender and neighbourhood no longer provide the ‘givens’ of identity, and the abandonment of universal systems of education health and welfare in favour of more individually determined decisions over ‘entitlements’ and political contestations framed around human rights rather than social citizenship (Dawson 2012: 307). While Bauman and Giddens see the rise of consumerism and the elevation of consumer choice as a dominant influence in this process (Bauman 2001; Giddens 1991), Beck tends to 15 The Individualisation of Ageing 243 emphasise the decline in ‘traditional’ modernity and the hollowing out of its social forms ( Beck and Beck-Gernsheim 2002: 2; Beck and Beck-Gernsheim 2009).

15.2.1 Later Life and the Individualised Life Course

We would argue that the emphasis upon autonomy, choice and ‘identity work’ arising from the ‘disembedding’ of social location plays a central role at all stages of the life course (Gilleard and Higgs 2005). In realising the ‘tasks’ of individualisation, a shift has taken place in the part played by consumption over production in constructing social location. There is a growing amount of discretionary expenditure available, supporting the expansion of markets and a larger element of choice in what to buy and whether to buy the various goods and services deemed important in supporting both lives and lifestyles. Essential expenditure on basics such as food, fuel and housing once dominated the weekly spend of most households, and especially pensioner households (Gilleard and Higgs 2005: 9, 94–5). This has been over- shadowed by the rise in discretionary expenditure, which is dominated by choice rather than necessity. This trend from essential to non-essential consumerism represented the epitome of first modernity’s goals to build a better society for all. By the late 1960s most households with adults of working age formed the core of this new society of consumers. By the 1980s, households of retired people were party to the same ‘habitus’. A new ‘leisure class’ that had already been foreseen in post-war America was emerging across most of Western Europe (Michelon 1954). The habitus of consumerism that expanded into the latter part of the life course developed most evidently within the ‘baby boomer’ cohorts, whose working lives had already developed and grown richer during the post-war economic boom, from the 1950s to the 1970s. As a life of consumer engagement continued into later life those newly retiring at the end of the twentieth century formed some of the more privileged age groups in society, in terms of their freedom from want and their opportunities to spend (OECD 2012, 2017). This transformation in the social location of later life, from a position of exclusion from the world of work to one of permanent inclusion within the world of consumerism was realised in what we have termed the emergence of third age culture, presaged upon life style consumerism extending into later life, coupled with a less traditional perspective on personal relations and a lessening of the hold exercised by traditional social and cultural forms (Gilleard and Higgs 2005, 2009). The cultures of the third age, co-constructed by this extension of a consumerist habitus over the life course have since incorporated other developments, not least those associated with the new communication technologies (Taipele et al. 2017) as what Castells has termed ‘network society’ (Castells 2000) becomes an ever more defining feature of life, and equally, of later life. How far can the individualisation thesis and its framing within third age cultures be extended across the whole of the life course and how far can it be extended across most modern societies? While households in the EU and North America that are headed by people in their sixties are among the better off, this does not exclude the presence of systematic inequalities within later life and within different parts of 244 C. Gilleard and P. Higgs society where a networked, consumerist, hi-tech lifestyle remains a rather distant prospect. While social class may no longer represent the powerful cultural divide it once did, other sources of structural inequality may affect older people; especially those living in sparsely populated regions such as the ‘high’ northern Arctic communities. If material poverty no longer excludes older people en bloc from participation in consumer society, it might be that other material restrictions play a part in reducing or marginalising the life chances for some groups of older people, particularly those whose lives are lived at a remove from contemporary urban society? Therefore, might living in geographical locations such as the Arctic affect access to markets and state mediated goods and services? Might the combination of difficulties in distribution, combined with limited aggregate demand represent barriers to the expansion of third age culture? Our own work on the third age and its cultural expansion has focused upon gen- eralities considered applicable to modern developed economies as a whole (Gilleard and Higgs 2005, 2011; Hyde et al. 2009). We have not explored the potential barriers to such developments represented by more remote social locations and the extent to which the transition from a ‘first’ to a ‘second’ modernity may have deprived some communities of the solidarities of the first while failing to deliver to them the opportunities of the second. Within the many and varied communities that constitute the Artic region, the ‘disembedded individualisation’ that Beck refers to may be more costly and less comforting than it has proved in more richly networked settings. To be fair to Beck, he has in his work on ‘cosmopolitanism’ identified this tension within the different nation states of Europe (Beck and Grande 2007) where those on the margins of ‘revolution by side effects’ feel distanced by the insecurity that it brings in its wake. The extent to which information and communication technologies can be said to serve as vectors in facilitating the processes of second modernity; rendering individualisation a more ‘liberating’ and ‘enriching’ personal experience seems an avenue for further research. Furthermore, it is clear that there exist significant cultural, demographic and economic differences within Arctic communities. In relation to culture, there are clearly differences between older people from ‘first nation’ communities, like the Inuits, Nenets, Sami and Vepsians, compared with those of the region’s incoming populations who have migrated north either in search of economic advancement or in pursuit of alternative lifestyles (Schweitzer et al. 2015). These differences are further intersected by demographic differences, contrasting those communities in the Nordic countries like Finland and Sweden with high proportions of older people with those in the Russian Federation, where the proportions of older people are lower (Danilova et al. 2012). Mapping onto these cultural and demographic differences are the contrasts between ‘traditional’ economies based upon hunting, herding and fishing, now threatened by climate change, those dominated by ‘modern’ economies based upon extractive industries that are actively contributing to climate change and those engaged with what might be called the ‘post-modern’ economies of tourism and related services, which either counter or serve as neutral contributors to climate change. 15 The Individualisation of Ageing 245

While the rise of a more individualised and personally entrepreneurial economy might be contributing to the disembedding of individual households from the traditional (modern or pre-modern) economic activities of the region, various barriers exist that make such a transition difficult, including remoteness, the lack of an economy of scale, as well as structural barriers “including a lack of STEM education opportunities, culture, the dominance of the public sector, and regulatory impedi- ments” (Exner-Pirot 2018). There are underlying conflicts between the embedded- ness of traditional economic life within the settlements and towns of the region, the economic power associated with modern extractive industries and their emphasis upon ‘industrial’ productivity, and the de-traditionalisation represented by regional services aimed at ‘securing’ later lives. If, as seems the case, out-migration is leading to younger people moving out, particularly of those ‘traditional’ carers of older people such as adult daughters and daughters-in-law, much of the disembedding might be arising not from economic individualism so much as the ‘hollowing out’ of traditional lifestyles. In other words, the individualisation of later life, in so far as it is emerging in this region, might have its roots more in the political agendas of welfare services and their turn toward the ‘personalisation’ of services than in changes in the ‘modes of production’ of the economy.

15.3 Individualisation and the Personalisation of Care

Among the various factors that Beck saw as catalysts in the processes of individualisation, one important vector was the state and the ‘density of regulations’ and ‘labyrinthine complexity’ through which its educational, health and welfare functions operate (Beck and Beck-Gernsheim 2009: 15). Houtepelen and ter Moulen (2000) have suggested that this vector of ‘institutional’ change operates through three processes. The first they identified was the demographic impact of ageing societies. “[T]he decreasing fertility rates and dwindling family networks” they suggested, “induc[es] a diminished supply of informal care that has to be compensated for by the supply of professional care”(Houtepen and Ter Meulen 2000: 331). The second is “an increased emphasis on individual responsibility concerning the financing of health care insurance and personal healthcare services” while the third is evidenced in the growth of individualisation as a collective sentiment, with policy preference for personal choices and individually tailored solutions over collective provision and universally applied solutions (Houtepen and Ter Meulen 2000: 333). The Arctic has seen a related rise in state-mediated service development alongside an equal emphasis upon ‘autonomy’ and ‘self-management’ (Larsen and Fondahl 2015: 480). This ‘individual rights/personalisation’ agenda has several features, three of which have particular relevance to later life. The first concerns the role of the state in promoting the marketing of long-term care insurance, a development noted first in Germany and Japan, now extending to an ever wider range of 246 C. Gilleard and P. Higgs countries, including France, Italy, South Korea, Taiwan and the United States.1 The development of personalised (person-centred) care in residential care settings is a second illustration of this process, whereby the manual labour of care workers is transformed into the emotional labour of individualising and personalising their caregiving activities, usually with no changes however to their terms and conditions of employment. The third is the tailoring of individualised assessment and care management packages, designed to personalise but implicitly also to control and ration the provision of social care to frail older people. While there are many other aspects that could be added, these serve as illustrations of the more general point of the institutionalised ‘individualisation’ of long-term care. Numerous examples exist, including such seemingly ‘positive’ developments as the development of an indigenous persons’ perspective entitling older indigenous peoples to receive ‘culturally tailored’ services, with, for example, social care services designed specifically for older Finnish and Sámi speakers in the ‘arctic’ regions of Sweden (Elenius 2008: 141). At the same time as undercutting or discarding what might have been deemed overtly ‘paternalistic’ universal models of care, the policies of personalisation of care also lead to concomitant cutbacks in the level of provision (see other chapters in this book, for illustrations). The dialectical contradiction between ‘personalising’ and ‘rationing’ care services engenders a rhetoric that seems superficially progressive, promoting individualised rather than collective solutions to the problems attached to age and infirmity. There is however a cost attached. Given the post-crisis promotion of ‘the need for austerity’ in public services, the result is more often than not expectations of co- contributions in paying for care, whether through individualised long term care insurance policies, as in Germany, or through individually mandated contributions based upon the assets of the elderly person and his or her family, as in England. A tightening of the criteria determining individual eligibility accompanies this agenda, with fewer older people receiving the more ‘expensive’ services, such as those involving institutional forms of care provision. Again this is articulated positively, through such slogans as ‘ageing in place’, ‘maintaining autonomy’ or ‘promoting re-habilitation’, reflecting in large part what many older people and their families prefer (Gori et al. 2016: 103). In short, a major axis of individualisation in later life is being realised through policy developments in the provision of welfare. The replacement of universal practices of care designed to ensure consistent, institutional standards with more personalised, assessment based ‘care packages’ tailored to individual need is widespread. The costs of this individualisation of care are managed through a variety of means, including co-payments, use of long-term care insurance and an increased intensity of home based care, restricting institutional care to those with the least ability to look after their own needs. The roll out of such an agenda at a national level means of course that the various Arctic regions are likely to be at different stages in this

1 Recent changes in the Netherlands have transferred some aspects of the purchasing of ‘institutional’ long term care from the responsibility of municipalities to central, insurance-based schemes covering health care, (Fernández and Nadash 2016: 37–38). 15 The Individualisation of Ageing 247 process, depending upon central government policies, with a necessary contingency in the kinds of costs and benefits individual communities may derive from this shift.

15.4 Individualised Ageing, Contingent Communities

Most of the regions that lie in the Arctic have undergone relatively rapid recent change across a number of fronts including that of social policy. In some communities, social class divisions based upon and aligned with differential degrees of spending power have begun to emerge, set against a historical background where the ‘traditional’ class system associated with industrial society has been absent (Dutton 2010). While this is true for the more settled rural societies of the Arctic, for the more nomadic communities of the region the appearance of a consumerist orientated ‘modernity two’ has been further confounded by developments in facilities and services delivered by the state. As Rasmussen has noted “services [now] provided in relation to health care, education, old age care, municipal services, administration of municipal activities, and so on—constitute the key set of activities characterizing the north [where] the third sector generates more than 70% of the economy and creates jobs for 80% or more of the employed persons” (Rasmussen 2009: 526). A service sector economy has grown up, in short, from outside the context of a manufacturing economy where retirement was first established. This directly replaces the kind of collective provisions associated with a fishing farming and hunting economy where ‘retirement’ was rarely formalised. In Beck and Giddens’ terms, this constitutes a direct transition from the community structures of pre-modernity to the liquid structures of ‘second’ or post-modernity. In such circumstances, several different processes of social change are likely to be involved that both foster individualisation and undermine embedded traditional social roles and locations. This includes more extensive systems of welfare as well as increasing access to consumer markets; improved access to information and communication technologies; a greater investment in infrastructure associated with the growth of extractive industry; more state mediated transfers and a corresponding rise in the eco-economy as well as the active promotion of regional tourism. All are likely to add to the processes of diversification at the same time reducing still further the role of collective labour and collective sustenance that sustained the traditional economy. This sudden rise of second modernity and its institutionalised individualism exposes many older people to the effects of a sharp hollowing out of structures predicated on traditional community and traditional culture. It risks people losing the sense of belonging that was founded within those structures. At the same time, other developments may compensate for these losses – including higher household income and expenditure, greater diversity in the choice of later life styles, access to other wider communities through improvements in communication technology, and an expanding public and private service sector enabling more extensive forms of ‘consumer citizenship’. While these may be thought of as contributing to the potential expansion of third age cultures they also risk bringing closer the shadows of a 248 C. Gilleard and P. Higgs fourth age. This may be the case particularly for those whose corporeal capital is sharply declining and for whom the opportunities for any enhanced performativity associated with consumer society may have little value. The various chapters in this book illustrate something of the sheer complexity involved in exploring later life and later life styles, in contexts that differ markedly from the more accessible and environmentally rich communities, typical of North American and Western European urban society. But do these studies refute the theses of a second modernity with its institutionalised individualisation, consumerism and the facilitation of third age communities and cultures? We would suggest not. Rather, we believe that they indicate that the social location – or categorisation – of later life (or old age as some insist in referring to later life) is subject in these settings to the same fragmenting and individualising ‘do-it-yourself’ trends that are observable in ageing in mainstream developed communities. That said, there are several broadly diverging patterns of demographic change that are likely to affect both the amount of ageing to be found and the extent to which the ‘individualisation’ of ageing is taking place. First is the premature ageing of the non-indigenous Arctic communities, where the economy is shrinking, the young are leaving, and where individualisation might be thought to be emerging through the ‘personalisation of services’ more than by changes in the productive economy (Heleniak 2015). Second, the level of youthfulness that is maintained among the indigenous communities, where fertility and mortality rates remain relatively high, may affect the degree of general ‘disembeddedness’ at all stages in the life course; here the ‘individualisation’ of ageing might be assumed to be lower and more limited (Heleniak 2015). Third, the growth of those ‘frontier’ like, more urbanised communities where the population is young and expanding, along with growing economic opportunities may see the individualisation of ageing arising through different means (Emelyanova and Rautio 2016). Growing alongside a younger generation eager to participate in the network societies of second modernity and maintaining their social connections through the communities of interest established or facilitated by the internet and the ubiquity of constant communication rather than the traditional ‘communities of propinquity’ of the region, the proportion of such communities classed as ‘aged’ may be relatively small. Within such settings, the potential of a widening divide must be considered, between those in later life able and eager to join in a more ‘networked’ society and those who are excluded or who place themselves outside it, for whom the individualisation of ageing represents a concomitant rise in loneliness. A second vector of differentiation exists, in the division between those indigenous peoples whose roots lie in the traditional economies of the Arctic, and which are now threatened by global climate change, and the ‘immigrant/settler’ communities who bring with them attitudes, habits and fields of interest that are transforming their communities into what has been called ‘a region of innovation’ (Exner-Pirot 2018). This contrast between the ‘old’ and the ‘new’ Arctic seems likely to position later life very differently in such different settings, raising questions about the extent form and nature of ‘individualisation’ in the Arctic and, indeed, more generally in 15 The Individualisation of Ageing 249 settings where communities and their demographic features differ notably from the modal structures of society. This source of difference provides a challenge for researchers of ageing that echoes themes pursued in some of the earlier research in social gerontology. In those studies, ageing was studied as part of a past, built around the experience of ageing in traditional working class communities (in what might be called ‘traditional modern’ society) and its confrontation with the more heterogeneous communities that were emerging as part of the post-war transformation of the economy (Townsend 1963).This confrontation with age and ageing, of two cultures, seems an important axis in exploring the challenges of ageing across the region. Gender may act as a further source of differentiation as many of the other chapters have shown. Some Arctic communities have been characterised as suffering from ‘female flight’, as younger women move out of the local community while the older men stay and age ‘in place’ (Hamilton and Seyfrit 1993). The variability in the gendered experience of immigration and emigration might imply that the significance of gender as a social divide in later life may consequently prove quite variable, not just from country to country, but from community to community (Dowsley and Southcott 2017). Some have argued that in the Arctic, women (and young women in particular) who stay are more likely to bring diversity into their community and cope better when it is brought in from ‘outside’ – engaging more often as communicators and consumers – while men (and older men in particular) maintain less flexible lifestyles and consequently cope less well with these changes (Vladimirova and Habeck 2018). The extent to which ageing in the region is gendered, in what ways it is gendered and how this affects the extent of individualisation in later life raises a number of questions about how age and ageing are represented, by whom and with what commonalities of voice. Again, we are enthused by the work done and eager to see the expansion of research into this aspect of ageing and individualisation. In summary, ageing in the Arctic region poses an array of questions and research agendas that can be informed by and that can inform and enrich existing theoretical debates in social gerontology and ageing studies. As newcomers to this arena, we have been stimulated by the possibilities it raises for thinking more and thinking differently about the social processes of ageing and the social locations of later life. The diversity of the region, its economies and geographies, cultures and histories raise a number of issues, which we have only outlined in relation to one aspect of societal change, namely the processes of ‘individualisation’ particularly as reflected and realised in later life. No doubt, there are many other aspects that can be mapped out and that need further exploration. We hope that readers of this volume will share some of that same excitement we have experienced in thinking about ‘ageing in the Arctic’ and the stimulating work of our colleagues. While there are no doubt many reasons to fear for the future, with the undoubted risks posed by climate change and economic exploitation of the environment, there are also challenges to be explored about the future of ageing and the contingencies of community presented by this explicitly ‘regional’ perspective. 250 C. Gilleard and P. Higgs

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A Bourdieu, P., 6, 67–69, 71, 75, 177, 178 Active ageing, 8, 9, 36–38, 194–205 The built environment and the social Acts on the affairs of older people, 160, 164 environment, 136 Advance care planning (ACP), 110, 112, 113, Burden, 3, 6, 24, 36, 37, 57, 60, 66, 68, 78, 85, 116, 118 115, 154, 176, 178, 185 Advance directive (AD), 110, 112 Age, v, 1, 17, 32, 48, 67, 86, 105, 123, 144, 160, 176, 194, 207, 233, 241 C Age-friendly environment, 7, 123–136 Capabilities approach, 5, 13–28 Ageing, v, 1, 17, 32, 48, 67, 85, 118, 123, 145, Capital forms, 67, 69, 71, 72, 76 167, 176, 194, 208, 241 Care marketization, 9, 66–68 Ageing in place, 5, 48, 50, 86, 90, 96, 177, 242 Care preferences, 7, 104–119 Ageing policies, 37, 38, 49, 50, 53, 194, 205 Care reform, 54, 57, 59 Ageism, 4, 8, 22, 176–188, 219, 220 Care sectors, 6, 65–79, 87, 125 Agentic selves, 187 Case study, 7, 87, 123–136, 209, 212 Age studies, 177, 179, 207, 208, 213 Challenges facing older couples, 162 Amendment, 67, 77, 86, 162, 164, 166 Chats, 147, 149, 152, 153 Anthropological, 226, 232 Cognitive, 89, 127, 145, 152, 154, 155, Aphasia, 142, 145, 150–152, 154 161, 164 Arctic, v, 4, 5, 10, 13–28, 32, 38, 85, 88, 90, 93, Cohabitation, 92, 95, 164 135, 225–227, 234, 236, 242, 244–249 Cole, T.R., 177 Arctic Council, 16, 18, 20, 24, 38 Communities (of interest), 180 Arkhangelsk region, 86, 87, 93–95, 97–99 Communities (of propinquity), 241, 248 Austerity politics, 2–4, 176, 218 Companies, 5, 20, 40, 66, 69–71, 77, 142, 153, Authentic voice, 177, 183, 187–188 161, 182, 198 Autoethnography, 142–155 Consumers, 65, 89, 176, 209, 242–244, Autonomy, 20, 37, 40, 68, 182, 184, 187, 243, 247, 249 245, 246 Consumer citizenship, 247 Consumer society, 244, 248 Continued togetherness, 8, 160–168 B Costs, 2–4, 6, 8, 18, 22, 35, 38, 48, 50, 53, 56, Bereavement process, 165 59, 60, 69–75, 77–79, 90, 95, 164, 165, Bodies, 5, 13–16, 20, 24, 25, 28, 35, 89, 145, 176–178, 181, 184, 185, 195, 198, 204, 148, 182, 208, 210, 214, 218, 220, 226, 244, 246, 247 231, 233, 235, 236 County, 53, 55–60, 202, 226

© Springer Nature Switzerland AG 2019 253 P. Naskali et al. (eds.), New Challenges to Ageing in the Rural North, International Perspectives on Aging 22, https://doi.org/10.1007/978-3-030-20603-1 254 Index

Critical analysis, 66, 87 F Critical gerontologists, 187 Face-to-face, 145, 147 Critical gerontology, 177–179, 187 Family, 3, 23, 32, 51, 86, 119, 127, 141, 160, Cultural rejection of agedness, 113 176, 195, 226, 245 Customer choice, 66, 67, 73 Family care, 52, 87, 195 Father, 8, 94, 141–143, 145–151, 153, 154, 220, 231 D Feminist economics, 19 Daughter, 129, 198–200, 245 Feminist epistemology, 213 Death, 7, 104–106, 109, 110, 112, 113, 115, Feminist political research, 209 116, 118, 119, 164, 165, 202 Finland, 2, 3, 5, 7, 9, 15, 17, 18, 26, 38, 48–61, Demography, 1, 17, 18, 32, 42, 51, 67, 73, 88, 65–79, 104, 105, 109, 116, 118, 119, 90, 106, 142, 160–162, 165–167, 178, 125, 127, 128, 132, 135, 177, 181, 208, 209, 241, 244, 245, 248, 249 210–213, 218, 226, 244 Density of regulation, 245 Finnish care policy, 7, 104–119 De-traditionalisation, 242, 245 Finnish Lapland, 6, 7, 9, 123–136, 207–221 Diet, 230, 233–235 Finnmark, 9, 198, 226–228, 231, 233 Digital divide, 144 First-hand experiences, 147 Dignity, 5, 14, 18–21, 24, 27, 28, 36, 37, 39, Food, 9, 23, 24, 92, 131, 134, 166, 182, 199, 42, 124, 135 200, 225–237, 243 Discourse analysis, 33, 34 Forced separation, 162, 165 Disembedding, 243–245 Formal care, 7, 90, 104, 116, 118, 119 Disembeddness, 248 Foster family, 6, 85–97 Dying, 7, 104–119 Foucault, M., 33, 67, 233, 236 Fourth age, 89, 105, 145, 154, 248 Freedom of choice, 4, 40, 48, 50, 53–55, 57, E 59, 73, 75, 176 Efficiency, 35, 66, 74, 75, 78 Elder care, 4, 5, 39, 48–61, 79, 143, 215 Elder care policy, 5, 48–61, 177 G Elderly politics, 217–218 Gender, v, 2–5, 9, 13–15, 17–19, 21–27, Elder services and care, 32, 38–40 31–42, 57, 60, 66, 67, 77, 78, 106, 109, Elias, N., 104–106, 109, 113, 116–118 112, 115, 117, 145, 154, 165, 176, 180, Emotional, 8, 22, 90, 105, 144, 146, 147, 149, 208–216, 218, 219, 221, 242, 249 155, 164–166, 227, 233, 246 Gender bias, 6, 66, 67, 77, 78 Empowerment, 14, 19, 21, 23, 24, 41, Gender blindness, 208 57, 182 Gender equality, 3, 9, 14, 15, 21, 27, 32, End-of-life care, 7, 104–119 36–39, 41, 42, 210, 211, 219, 220 End-of-life concerns, 106, 114 Geographical distance, 7, 142–155, 201, 202 End-of-life preparations, 7, 104–119 Geographical isolation, 87 Entanglement, 155 Gilleard, C., 4, 9, 32, 145, 154, 176, 177, 179, Equality Act, 210–211, 214 185–187, 220, 241–249 European Union (EU), 7, 36, 78, 211 Governance, 5, 7, 13–28, 36–38, 40, 118 Everyday life, 8, 9, 60, 104, 110, 113, 118, Gubrium, J.F., 177, 179, 183 131, 143, 178, 225–236 Gullette, M., 179, 185–187 Evocative descriptions, 155 Experiences, v, 8, 9, 13, 21, 23, 34, 35, 37, 40–42, 68, 74, 76, 95, 96, 104–106, H 112, 118, 124, 130, 136, 142, 144, Health, 2, 15, 37, 48, 65, 85, 104, 123, 145, 146–148, 150, 151, 153, 164–166, 177, 160, 176, 194, 208, 225, 241 180, 183, 184, 187, 194, 195, 197, 205, Health and social care reform, 54, 57, 59 208, 213, 216, 226, 227, 229, 230, Health care and social service system, 49–52, 232–234, 236, 244, 249 57–59 Index 255

Health professionals, 162, 183 Lonely, 86–89, 91–97, 153, 160, 204 Higgs, P., 4, 9, 32, 144, 145, 154, 176, 177, Luxury, 225–237 179, 185–187, 220, 241–249 Home-based care, 8, 194–205, 246 Human development, 14, 17–19, 21, 24, 28 M Human dignity, 5, 14, 19, 21, 27 Marketization, 4, 6, 9, 28, 49, 65–79 Human rights, v, 5, 15–18, 21, 23, 24, 26, 27, Meaning, 20, 37, 87, 118, 145, 194, 202, 207, 33, 35, 38, 40–42, 57, 161, 164, 166, 213, 215, 218, 234 168, 242 Meaningful life, 134, 220 Media, 4, 27, 162, 164–166, 186, 209, 218, 219 I Men, 2, 9, 14, 17, 18, 23, 38, 39, 41, 57, 86, Iceland, 8, 160–162, 164–167 97, 109, 115, 117, 124, 129, 131, 135, Identity, 32, 53, 68, 98, 131, 177, 180–182, 153, 165, 194–196, 204, 212, 249 186–188, 208, 217, 220, 241, 242 Mobile phone, 86, 147, 149, 150 Identity work, 243 Mobility, 32, 126, 144, 155, 201, 241 Illness, 8, 79, 104, 109, 143, 145–150, 152, Modernity 154, 163, 165, 167 first, 242, 243 Implementation of legal and political second, 9, 242, 244, 247, 248 obligations, 16, 19 Municipal care provision, 36, 196 Inclusive, 74, 136 Municipalities, 3, 18, 32, 39, 40, 48, 51–55, Inclusive ageing policies, 90, 205 58, 59, 124, 127, 128, 132, 134–136, Indigenous women, 21 152, 153, 155, 160, 194–196, Individualisation, 9, 117, 241–249 199–201, 204, 211, 212, 214, 215, Informal care, 49, 51, 119, 143, 144, 160, 195, 218, 226, 246 204, 245 Municipal politics, 9, 208, 209, 212, 217 Information and communication technologies (ICT), 37, 143–147, 149–151, 154, 155, 216 N Innovation, 9, 37, 66, 67, 70, 73, 76–78, 91, Nature, 7–9, 35, 38, 42, 95, 126, 127, 161, 196, 248 130–136, 178, 187, 226–228, 230, 234, Intergenerational care, 7, 142–155 236, 241, 248 Intersectionality, 34 The natural environment, 127, 130, 131 Interviews, 7, 106, 124, 127, 129, 130, 162, New challenge, 162, 164–167 165, 194, 196–200, 202–205, 209, 212, New governance, 35, 42 213, 216, 217, 226, 227 Next of kin, 143, 144, 146, 148, 155, Investment funding, 70, 77, 78 194, 201 iPad, 149, 150, 152 Nordic Arctic, v, 5, 13–28, 135 Normative framework, 14, 15, 17 Northern Finland, 5, 7, 25–26, 48–61, L 105, 119 Language, 3, 16, 21, 25, 32, 38, 40, 66, 86, Northern Norway, 194–205 129, 149, 152, 153, 178, 213, 225, 227, Northern perspective, 55–59 230, 232–234, 236 Nursing care, 8, 195 Legislation, 6, 9, 15, 21, 22, 27, 35, 39, 49, 50, Nursing homes, 8, 50, 89, 93, 164–167, 195, 67, 68, 73, 75, 77, 78, 86–88, 210 196, 200, 202 Life, 2, 15, 36, 52, 65, 86, 104, 123, 145, 160, 176, 194, 208, 226, 241 Lifestyle, 130, 145, 226, 235, 242–245, O 247–249 Old, v, 2, 15, 32, 48, 73, 85, 104, 123, 160, Logistic regression analysis, 110 176, 194, 207, 226, 242 Loneliness, 4, 90–92, 115, 119, 150, 152, 154, Older couples, 8, 9, 161–165, 167, 167, 248 216–220 256 Index

Older people, v, 2, 15, 37, 48, 73, 85, 104, Q 123, 142, 160, 176, 194, 209, 244 Qualitative content analysis, 48, 54 Older women, 2, 5, 13–28, 41, 124, 153, Quality of life, 7, 17, 38, 39, 87, 90, 92, 94, 178–180, 184, 194, 196, 207–221 95, 123, 125, 126, 135, 161, 163, Opportunities, 6, 8, 9, 18, 37, 38, 56, 65–79, 164, 166 87, 89, 91, 94–96, 113, 123, 125–127, Quantitative research, 106, 177, 211 129, 132–135, 143, 144, 179, 182, Quota provision, 211, 214 185, 187, 188, 211, 218, 219, 234, 242–245, 248 Othering, 176, 180 R Outsourcing, 6, 40, 66–70 The Raging Grannies, 180 Regional government reform, 52, 53 Remote rural area, 95 P Research, 2, 14, 32, 50, 67, 87, 104, 124, 146, Pain, 9, 106, 109, 116, 148, 150, 151, 203, 160, 178, 195, 207, 227, 244 226, 228, 229, 232, 233, 235, 236 Resistance, 8, 186, 211, 215, 227, 233–236 Parliamentary document, 164, 166 Responsibility, 1, 3–5, 9, 16, 18–20, 22, 25, Participation, 6, 8, 22, 23, 25, 36, 37, 52, 54, 28, 32, 38–40, 42, 48, 53, 55, 58, 75, 56, 59, 60, 77, 123, 124, 127, 133, 136, 77, 94, 104, 116, 142, 148, 152, 160, 161, 178, 179, 182, 194, 208, 209, 212, 176, 177, 179, 181, 195, 211, 216, 218, 216, 218–221, 233, 244 220, 231, 245, 246 Participatory Action Research (PAR), 184 Retirement, 49, 52, 109, 125, 132, 161, 163, Participatory methods, 187 167, 179, 212, 216, 217, 247 Performative, 143–145, 147, 208, 219 Rhetoric of rights, 183 Personalisation, 245–248 Rural settings, 7, 93, 123–136 Physical mobility, 126 Rural women, 15, 16, 21, 23–26, 40–42, 133 Political, v, 2, 13, 31, 48, 75, 118, 178, 207, Russia, 6, 85–97, 226 232, 241 Russian Arctic, 85, 88, 90 Political parties, 210, 211, 213, 217 Russian Federation, 18, 86–88, 91, 93, 96, Politics, 2–5, 9, 18, 20, 32, 38, 40, 154, 179, 98, 244 186, 207–221 The politicization of needs, 183 Power, 5, 9, 20, 27, 34, 38, 42, 65, 71, 105, S 110, 162, 179, 181–183, 207–211, 213, Sami, 9, 16, 18, 25–27, 40, 131, 225–236, 215, 217, 219, 220, 226, 234, 236, 241, 244, 246 245, 247 Skype, 147, 149, 150 Practical assistance, 195, 204 SME, 70, 72, 77, 78 Practical care, 8, 195, 199, 200 Social activities, 7, 131, 133, 135, 136, 198 Preferred self, 185 Social care, 6, 49, 54, 57, 59, 60, 85, 89, 90, Preparing for old age, 8, 160–168 94, 143, 194, 195, 203, 204, 214, Private, 6, 15, 16, 21, 32, 36, 39, 40, 48, 51, 242, 246 65, 69, 70, 74, 75, 90, 104, 127, 144, Social exclusion of death, 105 151, 161, 181, 187 Social isolation, 88, 180, 203 Private sectors, 59, 77, 125 Social justice, 5, 14, 36 Private services, 49, 125, 155, 247 Social rights, 15, 41, 49 Public, 52, 125, 151, 246 Social services, 4, 6, 20–22, 24, 27, 38, 39, Public governance, 13, 14 48–61, 65, 72, 74, 77, 86–94, Public services, 52, 125, 151, 246 96–98, 178 Index 257

Social status, 163, 217 Third age, 9, 145, 154, 185, 187, 207, Socio-legal studies, 33, 34 242–244, 247, 248 Solidarity, 9, 35–37, 39, 95, 96, 242, 244 Third sector, 6, 48, 51, 54, 59, 68, 69, 247 Spouse, 8, 112, 116, 117, 160–167 Tsunami of need, 176, 184 Statistical data, 17, 23, 212 Story, 9, 146, 187, 198, 201, 203, 220, 225–236 U Stroke, 7, 142–155 United Nations, 5, 14, 19, 36, 38, 124, 126 Struggle, 9, 118, 176–179, 187, 188, 225, 227, United Nations Convention on the Elimination 230, 234–237 of All Forms of Discrimination against Subjective, 38, 50, 143, 183 Women (CEDAW), 5, 13–28, 41, 42 Survey, 18, 95, 98, 105, 113, 134, 144 Universal care and services, 49 Sustainable development, 14, 16, 23, 38, 78 Universalism, 4, 5, 49, 52 Swedish welfare state, 38–40, 42 User involvement, 5, 48, 177 Systems approach, 8, 162, 163

V T Voice, 3, 4, 8, 9, 14, 134, 147, 150, 167, Taylor, C., 177, 188 176–188, 194–205, 210, 212, 228, 232, Technology, 8, 9, 50, 70–72, 76–79, 150, 151, 234, 236, 249 153, 161, 179, 185, 211, 218, 243, Voluntary work, 59, 202, 209, 216 244, 247 Vouchers, 6, 66, 67, 73–75, 77 Theory of performativeness, 208 Vulnerable groups, 15, 17, 23, 218