June 29, 2016

dementia – The international journal of social research and practice - Volume 15, Number 3, May 2016


dementia – The international journal of social research and practice

Volume 15, Number 3, May 2016

Micro-citizenship, dementia and long-term care

Baldwin, C., & Greason, M. pp. 289-303


In recent years there has been an increasing interest in the concept of citizenship as a lens through which to understand dementia practice. This move from an individualist, personhood-based approach towards an understanding of people with dementia as a group facing social and structural discrimination parallels, in some ways, that previously seen in the realms of disability and mental health which have sought to politicize those experiences. In so doing, the debate has sought to reconfigure power relations, insisting that members of such discriminated groups are people with power entitled to the same from life as everyone else. Much of the discussion to date has, understandably, focused on the larger issues of social inclusion, rights and responsibilities – reflecting the traditional concern of citizenship of individuals’ relationship to the state or the society in which they live. More recently, there has been a move to conceptualising citizenship as a practice – something that is realised through action and in relationship – rather than a status bestowed. In this paper, we seek to contribute to the discussion by introducing the concepts of midi- and micro-citizenship, taken from organisation studies, as a further means by which to link the personal and the political, and as grounds to build citizenship-alliances between people with dementia living in long-term care (LTC) facilities and front-line dementia care staff. We will then seek to illustrate the usefulness of these concepts in understanding citizenship in practice in LTC facilities through analysis of data drawn from focus groups involving LTC staff, and interviews with family carers whose relatives live in LTC facilities. In conclusion, we will explore some of the possibilities that such an approach holds for dementia care practice.


Citizenship and people living with dementia: A case for the ethics of care

Brannelly, T.  pp. 304-314



The ethics of care is an emerging field of interest in many disciplines, including care for people with dementia. The ethics of care as proposed by Joan Tronto is a political argument for care together with a set of principles, the integrity of care, to guide and critique practice. This two-pronged approach enables on one hand, a political, complex and situated examination of inequality, and on the other hand the integrity of care provides a set of principles to guide inclusive citizenship practices. This approach has the significant advantage of recognition of the fight that people with dementia face to achieve rights and citizenship as an issue of social justice. In this paper, three challenges to citizenship are discussed in relation to people with dementia using an ethics of care lens: (a) citizenship as a relationship between the individual and the state; (b) citizenship as a practice and (c) citizenship as identity and belonging. I propose that citizenship can be achieved by promoting inclusion in defining and creating policy, research and practice.



Citizenship, human rights, and dementia: Towards a new embodied relational ethic of sexuality

Kontos, P., Grigorovich, A., Kontos, A. P., & Miller, K. L.  pp.315-329


Sexual citizenship and sexual rights scholarship have made important contributions to broadening citizenship and more fully accommodating rights related to sexuality. However, this scholarship has concentrated primarily on the sexuality and intimacy-related needs of younger people and those who are not cognitively impaired. Consequently, it has inadvertently served to marginalize persons living with dementia who reside in long-term residential care settings. We argue that supporting sexual rights for persons with dementia requires a particular human rights ontology for citizenship—one that recognizes that corporeality is a fundamental source of self-expression, interdependence, and reciprocal engagement. This is an ontology that underpins our model of relational citizenship and that grounds our articulation of an ethic of embodied relational sexuality. In our view, this ethic offers important direction for the development of policy, legislation, and clinical guidelines to support sexual rights for persons with dementia in long-term residential care.



Dementia and representative democracy: Exploring challenges and implications for democratic citizenship

Sonnicksen, J. pp. 330-342


Despite growing recognition of the rights of people with dementia for full citizenship, issues related to democracy, whether from theoretical or practical perspectives, remain neglected. Especially since discourses on dementia have expanded to this rights-based approach, it is imperative to begin to examine the meanings and practices of democracy within a context of dementia. Accordingly, the purpose of this article is to assess implications of dementia in the context of democracy. Rather than surveying the variety of democratic concepts, it will focus the analytical framework on representative democracy and then outline several challenges to and for representative democracy and citizens with dementia. The intention is to begin to identify paths for ensuring representation, inclusion and participation for those who have dementia.



To protect and to support: How citizenship and self-determination are legally constructed and managed in practice for people living with dementia in Sweden

Nedlund, A. C., & Larsson, A. T. pp. 343-357



Since living with dementia implies increasing difficulties in taking charge of rights due to cognitive as well as communicative impairments, many people with dementia are vulnerable and in need of support in order to realize full citizenship. In Sweden, all adults right to self-determination is strongly emphasized in law, regulations, and policies. Further, and in contrast to the situation in many other countries, people living with dementia cannot be declared as incompetent of making decisions concerning social care and their right to self-determination cannot legally be taken away. The article shows that in the Swedish welfare system, the focus is more on protecting the self-determination of citizens than on supporting people in making decisions and exercising citizenship. Subsequently, this causes legally constructed zones of inclusion and exclusion. This article examines and problematizes how different institutional contexts, legal constructions, norms, and practices in Sweden affect the management of issues concerning guardianship, supported decision-making and self-determination, and outline the implications for people living with dementia.


Re-claiming citizenship through the arts

Dupuis, S. L., Kontos, P., Mitchell, G., Jonas-Simpson, C., & Gray, J. pp. 358-380



Healthcare literature, public discourse, and policy documents continue to represent persons with dementia as “doomed” and “socially dead.” This tragedy meta-narrative produces and reproduces misunderstandings about dementia and causes stigma, oppression, and discrimination for persons living with dementia. With few opportunities to challenge the dominant discourse, persons with dementia continue to be denied their citizenship rights. Drawing on the concept of narrative citizenship, we describe a community-based, critical arts-based project where persons with dementia, family members, visual and performance artists, and researchers came together to interrogate the tragedy discourse and construct an alternative narrative of dementia using the arts. Our research demonstrates the power of the arts to create transformative spaces in which to challenge dominant assumptions, foster critical reflection, and envision new possibilities for mutual support, caring, and relating. This alternative narrative supports the reclamation of citizenship for persons living with dementia and fosters the relational citizenship of all.



Walking in the neighbourhood: Performing social citizenship in dementia

Phinney, A., Kelson, E., Baumbusch, J., O’Connor, D., & Purves, B. pp. 381-394


The proliferation of community-based activity programs for people with dementia suggests an appetite for new approaches to support quality of life and well-being for this population. Such groups also have potential to promote social citizenship, although this remains poorly understood. This article presents findings from a subset of data from an ethnographic study of a community-based program for people with young onset dementia; it focuses on Paul’s Club and the experiences of 12–15 members who are physically healthy, with moderate to moderately severe dementia. Analysis suggests how aspects of social citizenship are constructed and revealed through the Club’s everyday practice of walking in the neighbourhood. Three major themes emerged:Keeping the focus off dementiaCreating a place of belonging; and Claiming a place in the community. How the group balances consideration of members’ vulnerability and agency is discussed, and the article concludes with implications for future practice and research initiatives.



‘Gonna make yer gorgeous’: Everyday transformation, resistance and belonging in the care-based hair salon

Ward, R., Campbell, S., & Keady, J. pp. 395-413


This paper makes a contribution to an emerging debate on dementia and citizenship through a focus on the everyday experiences of women living with dementia and in receipt of care. In particular, a link is drawn between hairdressing and citizenship in the context of dementia care. Informed by a wider debate over the importance of an emplaced, embodied and performative approach to citizenship, the authors highlight the way that intersecting forms of resistance unfold in the salon. The Hair and Care project, as the name implies, focused upon hair care and styling in the context of a wider consideration of appearance and how it is managed and what it means for people living with dementia. With a focus upon the routine, mundane and thereby often unproblematised aspects of everyday life in/with care, the discussion draws together two key ideas concerned with the interplay of power and resistance: Essed’s (1991) theory of ‘everyday discrimination’ and Scott’s (1985) notion of ‘everyday resistance’. The findings illuminate 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 the hairdressers whose services and support inspire their loyalty and patronage. Findings from the study point to the link between (inter-)personal practices of appearance management and a wider set of social conditions that are manifest in the on-going struggle over time, space and bodies in dementia care.



Creating space for citizenship: The impact of group structure on validating the voices of people with dementia

Wiersma, E. C., O’Connor, D. L., Loiselle, L., Hickman, K., Heibein, B., Hounam, B., & Mann, J. pp. 414-433


Recently, there has been increasing attention given to finding ways to help people diagnosed with dementia ‘live well’ with their condition. Frequently however, the attention has been placed on the family care partner as the foundation for creating a context that supports the person with dementia to live well. A recent participatory action research (PAR) study highlighted the importance of beginning to challenge some of the assumptions around how best to include family, especially within a context of supporting citizenship. Three advisory groups consisting of 20 people with dementia, 13 care partners, and three service providers, were set up in three locations across Canada to help develop a self-management program for people with dementia. The hubs met monthly for up to two years. One of the topics that emerged as extremely important to consider in the structuring of the program revolved around whether or not these groups should be segregated to include only people with dementia. A thematic analysis of these ongoing discussions coalesced around four inter-related themes: creating safe spacesmaintaining voice and being heardmanaging the balancing act; and the importance of solidarity. Underpinning these discussions was the fifth theme, recognition that ‘one size doesn’t fit all’. Overall an important finding was that the presence of family care-partners could have unintended consequences in relation to creating the space for active citizenship to occur in small groups of people with dementia although it could also offer some opportunities. The involvement of care partners in groups with people with dementia is clearly one that is complex without an obvious answer and dependent on a variety of factors to inform a solution, which can and should be questioned and revisited.



Narrative citizenship, resilience and inclusion with dementia: On the inside or on the outside of physical and social places

Clarke, C. L., & Bailey, C. pp. 434-452


There has been little research that addresses the importance of place in enabling resilience and citizenship – most to date focussing on these as a characteristic of the individual. This paper reports on findings from a qualitative study that aimed to explore the everyday experiences of living with dementia within rural and semi-urban communities. Data collection included a sequence of four research diaries and interviews with 13 families living at home with dementia and interviews with service providers and commissioners (a total of 57 diaries, 69 interviews with people living with dementia and 6 interviews with service providers and commissioners). Key themes identified included: Others Knowing and Responding; Socially Withdrawing and Feeling Excluded; Sustaining and Changing Activities; Belonging and Estrangement from Place; Engaging Services and Supports. The study found that familiarity with people and place can be supportive, and these factors support a narrative citizenship in which people can tell a story of inclusion and feeling on the inside. However, this familiarity with place may also create a social barrier and a sense of estrangement, or being on the outside. Narrative citizenship allows us to explore how people with dementia position themselves in relation to others and in so doing, negotiate their own and other’s understandings of dementia. It also allows for people to tell stories about themselves in relation to their sense of belonging in a social and physical place, which augment the personal and political approaches to citizenship and thus offers an approach that enhances individualised yet collective understandings of living with dementia.


Scanning the conceptual horizons of citizenship

Bartlett, R. pp. 453-461


This article scans recent developments within citizenship studies and relates them to the field of dementia, specifically the ‘dementia friendly communities’ agenda. The dementia friendly communities agenda is selected for several reasons, most notably because, it is an area of practice in the field of dementia where citizenship is perhaps most clearly enacted. The aim of the article is to help with the advancement of social citizenship as a key concept for dementia studies, by using two of the latest ideas within citizenship studies; namely, understandings of citizenship as (a) occurring in ordinary places and (b) potentially enacted within the domestic sphere to explore dementia friendly communities. It is argued that the interplay between these two developments pave the way for deeper consideration and realisation of social citizenship in the context of people with dementia.




No comments: