Abstract
Over the past 10 years, attention to notions of citizenship has played an increasingly important role in dementia discourse. Arguably, the focus on citizenship represents a “fourth moment” (Bartlett & O’Connor, 2010) or turn, in the development of understanding around dementia, where dementia moved from first being recognized predominantly as a natural sign of aging (senility), to a second period of constructing it as a primarily biomedical condition, followed by a third shift toward a more relational understanding that addressed the importance of seeing the person beyond the medical condition, to now considering the importance of embedding responses and relationships within broader socio-political practices and discourses. The language of citizenship challenges the tendency to problematize the experience of dementia as an individual experience by drawing attention to how people’s experiences are shaped by socio-cultural practices and assumptions: the personal is political. At core, it offers hope for the continued development of inclusionary practices that foster the possibilities for people living with dementia to live well and fully with their diagnosis.
Different frameworks have been offered for conceptualizing citizenship as practice. Bartlett and O’Connor (2007, 2010), for example, conceptualize an understanding of social citizenship as a status, practice and relationship grounded by six fundamental rights. These include: opportunities for growth; to have one’s self recognized in a holistic way beyond simply that of a person with dementia; to retain purpose in one’s life irrespective of diagnosis; to participate as an active agent in one’s life; to create a sense of solidarity and belonging with others; and importantly, the right to live life free of discrimination. Another way for conceptualizing is offered by Gilmour and Brannelly (2010) who draw on relational care ethics to argue for a more relational citizenship grounded in attentiveness, responsibility, competence and responsiveness. (See also Brannelly, 2011a, 2011b). Baldwin (2008) draws attention to yet another aspect of citizenship as practice, that of narrative citizenship. Citizenship practice has also been conceptualized by Nedlund and Nordh (2015) who draw on elements of policy narratives to reveal the important aspect of power in order to participate and influence the shaping of policies, the crafting of citizens and the space in which citizenship is continuously practiced. Underpinning all of these attempts to theorize citizenship lies attention to rights, empowerment, agency and relationships.
A focus on citizenship has guided research and practice in the area of dementia studies in a number of important and inter-related ways. It has proved useful for providing a language for promoting a rights-based understanding of the experience of dementia that has extended to policy development and has been used to challenge legal directions and practices. Furthermore, in an effort to insure active participation of people with dementia in producing and using knowledge, new approaches to conducting and disseminating research have emerged that explicitly draw on a citizenship lens. Importantly, citizenship has also been identified as an analytic lens for interpreting research by a number of researchers.
An important function of this body of research has been to problematize citizenship, using it heuristically to draw attention to the social exclusion and discrimination of people with dementia and beginning to examine how this is shaped by broader socio-cultural practices and policies. Unsurprisingly, however, there is considerable room for further discussion and development. Citizenship is a powerful concept that functions at the intersections of a variety of disciplines including philosophy, law, social work, nursing, political science and disability studies—to name but a few. It offers the potential for rich interdisciplinary and interprofessional dialogue. This dialogue is already ongoing.
In 2014, Dr Nedlund, 1 initiated an international dialogue around the use of a citizenship lens within dementia studies. A first in-person meeting was held at Linköping University in Sweden, hosted by the Centre for Dementia Research (CEDER) at the Department of Social and Welfare Studies. This lead to the establishment of an international network of researchers who were interested in applying a citizenship lens to their research and practice—there are now more than 70 international researchers endorsing a focus on studying, analysis and exchanging knowledge on dementia from a citizenship lens.
One outcome of this network has been the development of a Facebook group to facilitate discussion of ideas and share knowledge and resources (https://www.facebook.com/groups/citizendem/?fref=ts). A second action of this network was to organize a stream focused on Dementia and Citizenship as part of the 2015 International conference entitled Claiming Full Citizenship: Self-determination, Personalization and Individualized Funding, held in Vancouver, BC, Canada. Yet another action was to approach Dementia: International Journal of Social Research and Practice, about organizing this Special Edition focused on Citizenship in Dementia as a venue for disseminating both some of the papers presented at this conference and to solicit other works exploring the uptake of a citizenship lens in dementia studies.
This issue represents work across two continents and is organized roughly into three sections. The first three papers consider the meaning and use of citizenship as practice across different sectors. Baldwin and Greason contribute to the discussion by introducing the concepts of midi- and micro-citizenship as a means by which to link the personal and the political, suggesting that it provides a useful framework for building citizenship-alliances between people with dementia living in long-term care facilities and front-line dementia care staff. Brannelly builds on her previous work using relational care ethics to examine three challenges to citizenship in relation to people with dementia (1) citizenship as a relationship between the individual and the state, (2) citizenship as a practice and (3) citizenship as identity and belonging. She proposes that an “integrity of care” framework can provide useful guidelines for addressing inclusion and equity. A third paper by Kontos et al. examines citizenship within the context of sexuality and institutionalization—a topic that is often absent in discussions.
Citizenship is inherently a political term and an important avenue for knowledge development is at the nexus between the political sciences and social sciences. Papers by Sonnicksen, and Nedlund & Taghizadeh-Larsson address this intersection. Sonnicksen queries the implications of citizenship on the political process in a representative democracy. His work draws attention to a site of tension related to how citizenship is used within dementia studies, drawing in discussions about the importance of considering both rights and responsibility. Nedlund and Taghizadeh-Larsson shift from the more conceptual to examine at a practical level how citizenship and the right to be self-determinant is shaped by legal constructions, in this case in Sweden, and demonstrate how these constructions shape the way the welfare system protect and support citizens, sometimes with unintended consequences.
The next group of papers are empirically based. They contribute to the literature by drawing attention to the practices of social citizenship across the everyday while simultaneously exploring innovative research processes that are congruent with a citizenship lens. Dupuis et al. draw on narrative citizenship (Baldwin, 2008) to outline a community-based, critical arts-based research approach for creating alternative narratives of dementia that transcend the dominant “tragedy” discourse with its underlying assumptions of loss and deterioration. Wiersma et al. discuss a participatory-action research project that lead to unexpected questions around the inclusion of care-partners in self-management programs in relation to ideas of citizenship, empowerment and community. Phinney et al. present findings from ethnographic research of an innovative social activity group for younger people with dementia, drawing attention to how the simple activity of walking in the neighborhood could be understood as a practice for constructing citizenship of people with dementia through shared engagement and community involvement. Clarke and Bailey also focus on the use of space: their work explores the everyday experiences of living with dementia within rural and semi-urban communities. They discuss how familiarity with people and place can be both supportive—facilitating a narrative citizenship in which people tell a story of inclusion and feeling on the inside—while also creating a social barrier and a sense of estrangement. Finally, addressing yet another aspect of the routine and day-to-day world of living with dementia, Ward et al. explore the role of the beauty salon in the lives of women with dementia. Their study illuminates the creative and collective forms of agency exercised by older women living with dementia in the context of their relationships with one another and with their hairdresser, making visible the importance of exploring the routine and mundane for understanding power and resistance.
Bringing the special edition to a close, Bartlett discusses next steps for citizenship-based research and practice. In particular, she calls attention to the intuitive fit between citizenship-based ideas and approaches, and the growing interest in dementia-friendly communities.
We are excited to see this collection of papers! Individually and as a group, they extend the “citizenship turn,” raising interesting insights and questions. They highlight the importance of continuing to grapple with more socio-political understandings of the experience of dementia, identify some of the tensions and contradictions in how citizenship is both supported and challenged within a context of ordinary day-to-day lives and suggest ways to move forward.
We hope you too will enjoy and find the contributions useful!
In closing, in addition to a very warm thanks to the authors who contributed to this special edition, we want to acknowledge our gratitude to the many reviewers who anonymously and so promptly contributed their valuable insights, analysis and suggestions for bringing this set of papers together.