Crafting citizen(ship) for people with dementia: How policy narratives at national level in Sweden informed politics of time from 1975 to 2013

Abstract

This article explores how policy narratives in national policy documents in Sweden inform associated politics on people with dementia. This is disentangled in terms of how people with dementia have been defined, what the problems and their imminent solutions have been, and if and how these have differed over time. Based on a textual analysis of policy documents at national level in Sweden, covering nearly 40 years the study shows how divergent policy narratives shape the construction of citizens with dementia as policy target groups. This study shows the temporal character of people with dementia as a political problem, the implications of policy narratives on people with dementia as a citizen group, and policy narratives as something being crafted rather than shaped by fixed pre-existing "facts". Dementia, and further citizens living with dementia, does not have a once and for all stabilised meaning. Instead, the meanings behind the categories continue to evolve and to be crafted, which affects the construction of citizens living with dementia, the space in which to exercise their citizenship and further belonging to the society.

Dementia in the workplace: are employers supporting employees living with dementia?

“…The post-diagnositic support with employment offer is also under-researched (Mayrhofer, Mathie, McKeown, Bunn, & Goodman, 2018).This knowledge gap is symptomatic of the pervasive stereotyping and infantilizing views that undermine the capabilities of people living with dementia (e.g. to work) (Gove, Downs, Vernooij-Dassen, & Small, 2016;Milne, 2010;Nedlund & Nordh, 2015;Swaffer, 2014). There is a developing research base around the workplace experiences of people living with dementia -including research on employer experiences (Cox & Pardasani, 2013).…”

Re-claiming citizenship through the arts

“…In privileging these meta-narratives of dementia, opportunities for alternative stories are closed down (Baldwin, 2013). Nedlund and Nordh (2015) describe the power of dominant discourses reflected in public narratives in affecting “the construction of citizens, the citizenship content, and space within which people with dementia can exercise their citizenship” (p. 124). Within the biomedical frame of reference, for example, persons living with dementia come to be defined only as patients and clients rather than as citizens, which has harmful consequences for the recognition and support of their citizenship (Bartlett & O’Connor, 2007).…”

“…Citizenship brings questions of power, control, and the politics of human relations to the fore (Bartlett & O’Connor, 2007). It helps us problematize the circumstances for persons with dementia (Nedlund & Nordh, 2015) and makes visible how some are denied access to the full possibilities in life. It recognizes persons living with dementia as active agents in shaping their own lives and experiences and the important role they can play in challenging the dominant ways they and their lives are storied as tragic.…”

Constructing citizens: a matter of labeling, imaging and underlying rationales in the case of people with dementia

“…Even though the analysis, as offered by Ritchie and Lewis (2003), is an iterative process, it refers to steps in which the data are managed by categorizing it into themes and by finding descriptive and explanatory accounts. First of all, we identified narratives related to four time periods (see Nedlund and Nordh 2015). Second, we have discerned 11 different labels and images of people with dementia.…”

“…It is thus important to understand dementia from the social and political aspects, not least as a person's right to make decisions and have the possibility to participate in decisions that concern their life (c.f. Nedlund and Taghizadeh Larsson 2016;Nedlund and Nordh 2015) and further in terms of belonging to the society and being recognized as a citizen. Not least since in Sweden in order to be granted social services, citizens have to apply for them to get their needs assessed in meetings with public officials (Nordh and Nedlund 2016) that is, one of the sites where citizenship becomes constructed and practiced.…”